iPhone messages between my sister, Pat, and I during Susan's ordeal.
Pat has LOTS of medical experience and it really helped to be able to talk with
her about Susan's condition and treatments... I don't know what I would have
done if I had not had her to discuss things with...
Susan was admitted to the hospital for a Urinary Tract Infection on 2 June 2017.
It had made her completely incoherent and I thought she had had a stroke. She
became coherent again within a few minutes of being in the hospital and was
released on 5 June.
Then on 6 June her legs gave out so back to the hospital where she was diagnosed with C. Diff. bacteria in the Gastrointestinal tract.
C. Diff. was almost incurable and led to a slow decline which was agonizing for me to watch.
I bounced back and forth between hopefulness and despair frequently for 6
months.
I did everything I could think of to try to help Susan recover.
Watching Susan die was the hardest thing I have ever had to do.
She was my best friend...
----------------------------------------------------
6/22/17, 11:44 AM from Pat
How are you and Susan today?
----------------------------------------------------
6/22/17, 11:54 AM to Pat (from Howard)
I'm ok. Susan about same. Threw up pills and some of the tiny bit of oatmeal she
ate. Think they want to transfer her to a rehab place tomorrow. She is taking
Vancomycin for C. Diff. And it apparently has side-effects of nausea and lack of
appetite and other things that she is experiencing. However it appears to be
necessary.
----------------------------------------------------
6/22/17, 12:03 PM to Pat (from Howard)
Rehab center seems like best alternative at the moment. Not sure I could handle
stuff at our place. She is too weak to walk. Blood pressure was too low for them
to risk getting her up. 96/51 prone 84/50 sitting. Hope rehab place will know
what to do.
----------------------------------------------------
6/22/17, 12:14 PM to Pat (from Howard)
There are only two in the area that will take PD. And I will have to provide
cycler and supplies. We have plenty of dialysis supplies so that will not be a
problem other than me loading and unloading the stuff in 110+ degree weather
here 😀
----------------------------------------------------
6/22/17, 12:15 PM from Pat
Rehab place will know what to do.
I think you would regret trying to do it yourself at home. It is really tiring
and can keep you awake all night. Often you will need assistance and no one will
be there
----------------------------------------------------
6/22/17, 12:38 PM to Pat (from Howard)
Yep. No problem other than heat. I have a really good hand truck.
Yes I was wondering how I would be able to handle things if she came directly
home.
Person from Mi Casa in Mesa was just here outlining what they will do. Sounded
fine. Other alternative is a Scottsdale place. Probably either would be ok.
----------------------------------------------------
6/22/17, 2:23 PM from Pat
I'm glad they came to explain everything. I think she will really benefit from
the rehab.
----------------------------------------------------
6/22/17, 2:26 PM to Pat (from Howard)
I hope. Not much progress in hospital last few days. Diarrhea diminished a bit
but she still generally feels lousy.
----------------------------------------------------
6/22/17, 2:32 PM from Pat
It takes time. I know you have heard that a lot!
I'm glad you and she are agreeing to rehab. Ive seen families attempt this at
home. One family I know has 2 RN daughters who moved in to help, and 3 other
family members nearby. Even with all that help, they had to hire home aides for
nights. They are all exhausted.
----------------------------------------------------
6/22/17, 2:33 PM to Pat (from Howard)
I can believe that! I was not looking forward to diaper changing. 😀
----------------------------------------------------
6/22/17, 3:55 PM from Pat
No, it is very difficult for spouses and family in general. And then there is
sometimes emesis... And concerns about eating and drinking ... Emotionally
difficult and physically difficult.
----------------------------------------------------
6/22/17, 4:02 PM to Pat (from Howard)
Thanks. I had to look up definition of emesis. Then I remembered seeing "emesis
bags" in emergency room. Is "vomit" so distasteful that they had to find another
word? 😀. Like Air Force "remote tour" got changed to "short tour". 😀
----------------------------------------------------
6/22/17, 4:04 PM from Pat
Haha! I guess ladies and gentlemen don't vomit , they have emesis or emeses
----------------------------------------------------
6/23/17, 10:38 AM from Pat
Did she tolerate the pizza last night?
(Dont feel compelled to reply immediately... I know you are busy)
----------------------------------------------------
6/23/17, 10:48 AM to Pat (from Howard)
Yep. Seems even a bit better today. Ate more this morning than I had seen her
eat for breakfast than any time before. Half bowl of oatmeal. All of
butterscotch pudding. Took all pills except only half of potassium pill which
was dissolving before she could down it. Did not throw up. Not yet anyway.
Reading newspaper. Had not felt up to that before today. Transferring to Mi Casa
rehab place in approximately two hours. Approximately.
----------------------------------------------------
6/23/17, 10:50 AM from Pat
Yay! All seems to be looking up!
----------------------------------------------------
6/23/17, 10:50 AM to Pat (from Howard)
I hope.
----------------------------------------------------
6/23/17, 11:13 AM to Pat (from Howard)
EMTs come to where we are living probably twice a week. They get lots of
practice.
----------------------------------------------------
6/23/17, 11:13 AM from Pat
I'm sure!
----------------------------------------------------
6/23/17, 11:16 AM to Pat (from Howard)
Depressing to me. I might be healthiest person there but I see what I am looking
forward to. Damn. My preferred exit when I don't know who I am is to be
abandoned way out in the desert. 😀
----------------------------------------------------
6/23/17, 1:37 PM to Pat (from Howard)
Blood pressure was too low for PT people to risk standing her up. PIC line is
still in place. She just had two small pieces of a 5 inch pepperoni pizza. Could
not have done that yesterday noon.
---------------------------------------------------
6/23/17, 6:54 PM to Pat (from Howard)
Transferred at 4:30. She is ok. Ate some dinner. I am heading home now. Tired.
----------------------------------------------------
6/23/17, 7:02 PM from Pat
I just know you're exhausted. Get some good rest! Love from me.
----------------------------------------------------
6/23/17, 7:53 PM to Pat (from Howard)
Thanks. I'll be ok if she'll be ok.
----------------------------------------------------
6/23/17, 7:54 PM from Pat
She is strong willed. She will be ok
----------------------------------------------------
6/24/17, 12:27 PM from Pat
How is everything (when you get a minute)
----------------------------------------------------
6/24/17, 12:36 PM to Pat (from Howard)
Eating better breakfast and lunch. Finally semi ok BP allowed them to get her
into a chair for a half hour or so.
Were going to try to give fluid last night but gave up trying to get a needle
into a vein. Always has been a hard stick. Trying to convince her to drink more
water. Still diarrhea but diminished frequency. Shelly and Brian visiting
currently.
----------------------------------------------------
6/24/17, 12:44 PM from Pat
Sounds good!
----------------------------------------------------
6/26/17, 7:44 PM from Pat
How is Susan? Better every day I hope!
I've been unable to text today due to work (cases) but I've been thinking about
her all day
----------------------------------------------------
6/27/17, 8:59 AM to Pat (from Howard)
A little better each day I think. Still having diarrhea. Was able to be helped
up and into a chair yesterday. Physical therapy is underway.
She is in good spirits.
----------------------------------------------------
6/27/17, 11:08 AM from Pat
That sounds good, going in right direction.
----------------------------------------------------
6/27/17, 11:20 AM to Pat (from Howard)
I hope. Think so.
----------------------------------------------------
7/1/17, 3:50 PM from Pat
How is Susan? Good I hope!
----------------------------------------------------
7/1/17, 3:56 PM to Pat (from Howard)
Small improvements. Still diarrhea. Doing physical therapy things. Has been able
to take a few steps with walker but tires easily. Estimate from the place she is
in is another week at least. Able to get legs in and out of bed and sit up which
she was not able to do when she got there. 💕
----------------------------------------------------
7/1/17, 4:18 PM from Pat
That is all good!
----------------------------------------------------
7/1/17, 4:21 PM to Pat (from Howard)
But it is so slowPat I guess maybe it needs to be. She will be 80 in December.
----------------------------------------------------
7/1/17, 4:22 PM from Pat
Not slow.. that bug takes a lot out if people. Cdiff
----------------------------------------------------
7/4/17, 12:11 PM from Pat
Hope you are having a good day. Hope Susan is better every day! Love from me.
----------------------------------------------------
7/4/17, 12:25 PM to Pat (from Howard)
Yep. A little better each day. Removed from isolation status today apparently
due to course of vancomycin finished. Still has diarrhea. Hope that is because
of vancomycin which is listed as one of its side-effects. Don't know if there is
any test to see if C. Diff. has been completely defeated. Currently sitting in a
chair eating lunch after PT. They wanted to try to get her to walk a bit but BP
when standing was like 84/56 and everybody chickened out 😀. Tried 3 times. Did
some arm exercises. Will do leg exercises this afternoon. Did get a shower this
morning then they cleaned room and removed isolation status.
----------------------------------------------------
7/8/17, 2:05 PM to Pat (from Howard)
Tested negative for C. Diff. so is now off isolation. Gradually regaining
strength. Able to get to a bedside potty unassisted. Supposed to be assisted but
they take too long. 😀
----------------------------------------------------
7/8/17, 2:19 PM from Pat
Yay!!!!
----------------------------------------------------
7/8/17, 2:35 PM to Pat (from Howard)
Still a bit of a struggle to get muscles up to speed but gradually improving.
----------------------------------------------------
7/8/17, 2:38 PM from Pat
That is such great news!
----------------------------------------------------
7/8/17, 2:41 PM to Pat (from Howard)
Thanks. I'm feeling a little better about things.
----------------------------------------------------
7/8/17, 2:44 PM from Pat
I can just imagine! That was a bad time. But definitely looking up now.💕💕
----------------------------------------------------
7/11/17, 8:50 AM to Pat (from Howard)
Walked a fair distance yesterday. They prescribed Imodium this morning. They
estimate another week here at Mi Casa.
It is 210 feet from our Bella Vista apartment to the elevator. Similar distance
from elevator to dining room. Did that distance approximately yesterday with
rests at halfway points.
----------------------------------------------------
7/11/17, 10:47 AM from Pat
That sounds good! One of those scooters would help too maybe. ?
----------------------------------------------------
7/11/17, 10:48 AM to Pat (from Howard)
Maybe. But would rather she continue walking as long as possible.
----------------------------------------------------
----------------------------------------------------
7/14/17, 3:46 PM to Pat (from Howard)
Susan is getting stronger each day. Able now to walk with a walker far enough I
think to get to and from our apartment and dining room. Still at Me Casa. Maybe
release next week but have no definite information on that. Still taking Imodium
each day. Gradual improvement regarding diarrhea but not cured yet. 💕
----------------------------------------------------
7/14/17, 3:49 PM from Pat
Super!! I think another week should bring even more progress.
To Susan: You GO girl!!
😍💓😀
----------------------------------------------------
7/14/17, 3:50 PM to Pat (from Howard)
Thanks! 💕
----------------------------------------------------
7/16/17, 10:44 AM to Pat (from Howard)
She threw up breakfast this morning. I had thought she was getting better. Now I
don't know what to think. Diarrhea has continued. Maybe slightly improved but
not gone.
----------------------------------------------------
7/16/17, 1:12 PM to Pat (from Howard)
Back on isolation status and retesting for C. Diff.
----------------------------------------------------
7/16/17, 2:04 PM from Pat
That tends to happen sometimes. Two steps forward, one backward.
----------------------------------------------------
7/16/17, 2:22 PM to Pat (from Howard)
Thanks. If the test is positive does that mean another course of antibiotics
would be required? Dry heaves a moment ago. Ok at the moment but very tired.
----------------------------------------------------
7/16/17, 2:51 PM from Pat
Sometimes more abx . I can't really say for sure.
----------------------------------------------------
7/16/17, 2:56 PM from Pat
In some recurrent cases, fecal transplant. I don't know if that is indicated in
Susan's case or not.
----------------------------------------------------
7/16/17, 2:57 PM to Pat (from Howard)
That was discussed in hospital but they did not do it
----------------------------------------------------
7/16/17, 2:59 PM from Pat
I think it is pretty effective. But the drs will know the indications.
----------------------------------------------------
7/16/17, 2:59 PM to Pat (from Howard)
Ok. Thanks. I'm starting drive home now...
----------------------------------------------------
7/17/17, 12:29 PM to Pat (from Howard)
I looked on the internet and found that nurses with experience with it can tell
whether it is present by its smell. So I asked the nurse that came in to clean
up if that was true and she said yes and that she could tell that it was still
present in Susan's case. So how did a sample a week ago come up negative? I
don't think it was ever beaten. Another sample taken yesterday is out for
analysis. How does one cure this stuff?
----------------------------------------------------
7/17/17, 1:02 PM from Pat
It sometimes is not really cured. It is more a function of the person's own
immune system.
----------------------------------------------------
7/17/17, 1:04 PM to Pat (from Howard)
So does the diarrhea persist for the rest of her life?
----------------------------------------------------
7/17/17, 1:06 PM from Pat
In my experience, no. It can be intermittent.
----------------------------------------------------
7/17/17, 1:06 PM from Pat
Or go away
----------------------------------------------------
7/17/17, 1:07 PM to Pat (from Howard)
Thanks. I am getting impatient I guess.
----------------------------------------------------
7/17/17, 1:08 PM from Pat
I don't blame you
----------------------------------------------------
7/17/17, 5:52 PM from Pat
From a CDC release
Transplanting stool from a healthy person to the colon of a patient with repeat
C. difficile infections has been shown to successfully treat C. difficile. These
“fecal transplants” appear to be the most effective method for helping patients
with repeat C. difficile infections. This procedure may not be widely available
and its long term safety has not been established.
----------------------------------------------------
7/17/17, 5:53 PM to Pat (from Howard)
Thanks!
----------------------------------------------------
7/17/17, 6:00 PM from Pat
https://www.cdc.gov/hai/organisms/cdiff/cdiff-patient.html
----------------------------------------------------
7/17/17, 6:00 PM from Pat
Here is the article in case you haven't seen it already. ☺️
----------------------------------------------------
7/17/17, 6:01 PM to Pat (from Howard)
Thanks!
----------------------------------------------------
7/18/17, 2:24 PM from Pat
How is Susan?
----------------------------------------------------
7/18/17, 2:35 PM to Pat (from Howard)
Same. Except X-ray results this morning showed a bit of pneumonia in right lung.
Back on Vancomycin. Just had an iv needle successfully installed with help of
ultrasound. Think they will do antibiotics to fight pneumonia. That might not be
good with respect to C. Diff. treatment. But maybe pneumonia is more of a threat
at this point?
Found openbiome.org. Any opinion on that?
She did drink half a boost and half a chocolate milkshake today. Feeling queasy
though and threw up pills early this morning.
Wish I thought this was somehow going to all work out ok.
Damn...
----------------------------------------------------
7/19/17, 5:29 AM from Pat
Well try to not lose hope. I know she wouldn't.
I hope this text doesn't awaken you. I will be in meetings all morning so I
wanted to reply. Won't do it this early if it awakens you though.
----------------------------------------------------
7/19/17, 5:34 AM to Pat (from Howard)
I am always awake by this time. Dr. L, her regular doctor called me last night.
She will take action today that might involve hospital and fecal transplant.
----------------------------------------------------
7/19/17, 5:37 AM from Pat
Great! I was hoping they would try that.
----------------------------------------------------
7/19/17, 5:38 AM to Pat (from Howard)
Me too. Just wasn't sure how to get it to happen.
----------------------------------------------------
7/19/17, 6:26 AM from Pat
Squeaky wheel. Courteous but persistent questions. That's often the only way.
----------------------------------------------------
7/19/17, 6:27 AM to Pat (from Howard)
Thanks.
----------------------------------------------------
7/19/17, 6:30 AM from Pat
Never hesitate to ask courteous questions..."what medicine is that?". "What is
in that I bag?". Etc. It keeps all the staff thinking and that decreases the
chance of error. I know it seems rude, but it is for Susan.
----------------------------------------------------
7/19/17, 1:40 PM to Pat (from Howard)
Think we really did the right thing. Diastolic currently 37. Fluids being
delivered. Apparently very dehydrated.
Hospital was right thing to do.
----------------------------------------------------
7/19/17, 1:41 PM from Pat
Yes I think so. What was systolic and heart rate.
----------------------------------------------------
7/19/17, 1:45 PM to Pat (from Howard)
Currently at 93/37. Not too unusual for her. Machine here would like diastolic
to be 52 or better so it alarms every 15 minutes. 🙂
----------------------------------------------------
7/19/17, 1:46 PM to Pat (from Howard)
Still in emergency room awaiting regular room assignment.
----------------------------------------------------
7/19/17, 1:47 PM from Pat
What is heart rate
----------------------------------------------------
7/19/17, 1:50 PM to Pat (from Howard)
59 if I am looking at right thing. Oxygen is 97 to 100.
----------------------------------------------------
7/19/17, 3:40 PM to Pat (from Howard)
BP 79/34 may be headed to ICU. Not sure.
----------------------------------------------------
7/19/17, 3:41 PM from Pat
Hmmm. Heart rate?
----------------------------------------------------
7/19/17, 3:59 PM to Pat (from Howard)
64. What causes low blood pressure?
----------------------------------------------------
7/19/17, 4:02 PM from Pat
Hypovolemia most commonly
----------------------------------------------------
7/19/17, 4:02 PM to Pat (from Howard)
Like that helps me understand without a medical dictionary 😀
----------------------------------------------------
7/19/17, 4:03 PM to Pat (from Howard)
Not eating enough voles?
----------------------------------------------------
7/19/17, 4:04 PM from Pat
Can be other causes. Toxemia. Heart problems...
Oh low fluids.. low volume results in low atrial filling so decreased cardiac
output.
----------------------------------------------------
7/19/17, 4:09 PM to Pat (from Howard)
Heart checked out several times per year at cardiac arrhythmia institute that we
both go to. Supposedly ok.
Still lots of diarrhea. Seems to be lots more since receiving fluids. Maybe 6 or
8 times in last 6 hours. Maybe still a quart low 😀.
Now 89/38. Slight diastolic uptick.
----------------------------------------------------
7/19/17, 4:09 PM from Pat
Heart can't pump enough if the blood volume is low OR the container size is
increased. Blood vessels constrict or dilate as needed . If they are too
dilated, can lead to low BP.
But I'm first thinking low blood volume. Needs IV fluids . But could be needs
some vasopressor..Like dobutamine. The drs know far more than I do.
----------------------------------------------------
7/19/17, 4:10 PM to Pat (from Howard)
We will be relying on the doctors of course.
----------------------------------------------------
7/19/17, 4:11 PM from Pat
Dopaminevand levophed are vasoconstrictors. They probably have newer ones now.
----------------------------------------------------
7/19/17, 4:12 PM to Pat (from Howard)
I am just curious like I always am about almost everything.
----------------------------------------------------
7/19/17, 4:13 PM to Pat (from Howard)
Getting potassium chloride currently.
----------------------------------------------------
7/19/17, 4:14 PM to Pat (from Howard)
Potassium was low. I know that is what make muscles work.
----------------------------------------------------
7/19/17, 4:15 PM from Pat
They drew labs and found potassium (k) lower than 3.5. They all know how much k
and how fast.
----------------------------------------------------
7/19/17, 4:15 PM to Pat (from Howard)
Nurse here seemed happier with last BP result.
----------------------------------------------------
7/19/17, 4:16 PM to Pat (from Howard)
She was throwing up potassium pills at Mi Casa.
----------------------------------------------------
7/19/17, 4:17 PM from Pat
Her bp isn't real bad unless she has effects like too rapid heart or dysrhythmia
s or other signs symptoms
----------------------------------------------------
7/19/17, 4:18 PM to Pat (from Howard)
Other stuff seems ok.
----------------------------------------------------
7/19/17, 4:19 PM from Pat
Yes. Low BP with no other symptoms is sort of ok .
----------------------------------------------------
7/19/17, 4:20 PM to Pat (from Howard)
Ok. Good to know.
----------------------------------------------------
7/19/17, 4:22 PM from Pat
I only see vasopressor s used when the BP is affecting perfusion adversely
----------------------------------------------------
7/19/17, 4:29 PM from Pat
Too low BP and cells will not be oxygenated enough. Added oxygen won't help much
if blood isn't getting to organs.
----------------------------------------------------
7/19/17, 4:30 PM to Pat (from Howard)
Yes. That is what they were worried about when she was sent to ICU last time.
----------------------------------------------------
7/19/17, 4:34 PM from Pat
I bet her bp is normally low.
----------------------------------------------------
7/19/17, 4:39 PM to Pat (from Howard)
Oh yeah. Always. Had a doctor tell her long ago "you might not live to be a
hundred but you will one day feel like you did. 😀
----------------------------------------------------
7/19/17, 4:41 PM from Pat
Yow.
----------------------------------------------------
7/19/17, 4:42 PM from Pat
So she may tolerate it just fine.
----------------------------------------------------
7/19/17, 4:44 PM to Pat (from Howard)
Thanks. It really helps me to be able to talk with you about this stuff. 😍
----------------------------------------------------
7/19/17, 4:44 PM from Pat
Sure!
----------------------------------------------------
7/19/17, 4:47 PM from Pat
Are you still in emergency room
----------------------------------------------------
7/19/17, 4:51 PM to Pat (from Howard)
Yes. Maybe won't have to do ICU. BP readings will presumably decide that?
----------------------------------------------------
7/19/17, 4:53 PM from Pat
Sort of but mostly Her overall condition. Stability.
----------------------------------------------------
7/19/17, 5:12 PM to Pat (from Howard)
Ok.
----------------------------------------------------
7/20/17, 7:37 AM from Pat
How is everything this morning?
----------------------------------------------------
7/20/17, 9:01 AM from Pat
? Hope all is ok.
----------------------------------------------------
7/20/17, 9:17 AM to Pat (from Howard)
Still frequent diarrhea. Green yesterday! She is in reasonably good spirits.
Holding down pills and jello and ice chips. They're providing lots of IV fluids
saline potassium magnesium and Vancomycin and the other standard drug whose name
escapes me at the moment. Yesterday she was even throwing up ice chips so
definite improvement.
I Have not yet seen a doctor and I don't know if I see one whether to mention
fecal transplant. Banner Desert is on openbiome.org list of places that
supposedly can do it. Don't want to tick off any doctors.
----------------------------------------------------
7/20/17, 9:20 AM from Pat
Sounds reasonable!
----------------------------------------------------
7/20/17, 9:20 AM to Pat (from Howard)
I mean I don't know how doctors react to suggestions these days. Years ago they
did not react well to suggestions I think!
----------------------------------------------------
7/20/17, 9:43 AM from Pat
Well if you say "somebody mentioned fecal transplant. Would that help in her
case?".
And ask the internal med or whoever is the dr seeing her at the hospital.
----------------------------------------------------
7/20/17, 9:46 AM from Pat
They all tend to escape asap so it is easy to miss your chance.
Introduce yourself to everyone who looks at her and if it's a dr ask if they
have a card or memorize theur name.
Keep a notebook with names times if you really want good care. Let them see you
making notes.
----------------------------------------------------
7/20/17, 9:47 AM from Pat
Most people wish they had done that.
----------------------------------------------------
7/20/17, 9:48 AM from Pat
Or I should say SOME people wish they had done it.
----------------------------------------------------
7/20/17, 9:50 AM from Pat
I just explain the notes by saying " oh I have a terrible memory for names!"
----------------------------------------------------
7/20/17, 9:52 AM to Pat (from Howard)
Yep. Kidney dr was just in and HE mentioned it. So I think they will be thinking
it as "last resort" (kidney doctor's words). So I don't expect there to be a
problem discussing it at this point.
----------------------------------------------------
7/20/17, 2:20 PM to Pat (from Howard)
Hi. ID Dr. Amenenci will proceed with fecal transplant via openbiome.org. Might
occur next week. I was out to lunch and Susan called me so I could talk with Dr.
Amenenci and have us all agree on this. Dr. was impressed according to Susan
when I mentioned openbiome.org. 😀. That is where they get the materials and I
researched it a few days ago to be sure this particular hospital was on their
list.
Alternative was two months of Vancomycin and hope for the best.
More tests will be done before the fecal transplant to be sure she is ok for
proceeding with it.
I think we're doing the right thing. Hope so anyway.
----------------------------------------------------
7/20/17, 2:34 PM to Pat (from Howard)
Susan is asking if you think we are doing the right thing regarding fecal
transplant?
----------------------------------------------------
7/20/17, 2:36 PM from Pat
Yes. I don't know what the risks are,but the success rate is high, from what
I've heard.
----------------------------------------------------
7/20/17, 2:38 PM to Pat (from Howard)
Ok, that is good to know. I don't see any better alternative. This stuff has
almost killed her twice in my opinion.
----------------------------------------------------
7/20/17, 2:38 PM from Pat
There is no better alternative.
----------------------------------------------------
7/20/17, 2:40 PM to Pat (from Howard)
That's what my cursory research was leading me to believe but really good to
have your concurrence. 😍
----------------------------------------------------
7/20/17, 2:41 PM to Pat (from Howard)
Life and death decisions are extremely difficult for me.
----------------------------------------------------
7/20/17, 2:42 PM from Pat
Of course
----------------------------------------------------
7/20/17, 2:45 PM to Pat (from Howard)
Dr just ordered Vancomycin enema. So they are at least trying everything here in
the meantime.
----------------------------------------------------
7/20/17, 4:59 PM from Pat
Probably there are protocols and specific things they have try (per FDA maybe)
before they go to fecal.
----------------------------------------------------
7/20/17, 5:03 PM to Pat (from Howard)
Yes I am guessing that is correct.
Weirdly, they have been doing something similar in China for a LONG time
according to my research. They administer "yellow soup." Yuccck.
----------------------------------------------------
7/20/17, 5:05 PM from Pat
That would be one of those really difficult life or death decisions. 🤢
----------------------------------------------------
7/20/17, 5:06 PM to Pat (from Howard)
Funny!
----------------------------------------------------
7/20/17, 5:08 PM from Pat
We humans are so particular.
----------------------------------------------------
7/21/17, 9:36 AM from Pat
So is this a nasal-gastric (NG) route for the fecal ... or rectal route?
(The NG tube would suggest NG)
----------------------------------------------------
7/21/17, 9:47 AM to Pat (from Howard)
NG. Currently coiled instead of through the pyloric valve and they will have to
fix that. Currently we are in her room with no indication of when anything will
happen. 😀. Was told not to take anything by mouth after 8am. It is 9:45 now.
Has three IV needles none of which is giving blood. Upper left arm one has
caused upper left arm to swell.
Veins not too good. Not plugged into any bags currently. All needles were placed
with ultrasound assistance.
----------------------------------------------------
7/21/17, 11:00 AM from Pat
Yow. Veins not too good?! Understatement of the year! Talk about a hard stick.
Anesthesiologists are the best at starting impossible IVs. But everyone knows
that.
But if she really needs an IV , I think they won't use peripheral.
----------------------------------------------------
7/21/17, 11:02 AM to Pat (from Howard)
Someone a moment ago used heat to get a hand vein to pop up and finally got the
blood samples they wanted.
----------------------------------------------------
7/21/17, 11:06 AM from Pat
Yes but that will only work for draws, not IV fluids
----------------------------------------------------
7/21/17, 11:07 AM to Pat (from Howard)
Yep. That needle was withdrawn after blood was obtained.
----------------------------------------------------
7/21/17, 11:09 AM from Pat
Right. I've used nitro glycerine paste too, but contraindicated in some
patients.
----------------------------------------------------
7/21/17, 3:59 PM from Pat
Reason for hope, that's for sure!
----------------------------------------------------
7/21/17, 4:00 PM to Pat (from Howard)
Thanks! I am optimistic.
----------------------------------------------------
7/22/17, 6:14 AM from Pat
I am very interested in how she feels and how things progress, not only for her,
but also because of possibilities ... maybe someday ... for other cdiff
patients. I've known a few.
----------------------------------------------------
7/22/17, 6:15 AM from Pat
This may end up being the best and safest
----------------------------------------------------
7/22/17, 6:19 AM to Pat (from Howard)
Will keep you informed. She woke up near midnight last night and called me.
Doctor seems to think they might release her back to Mi Casa within a few days.
If the diarrhea quits her preference would be come home and skip Mi Casa.
----------------------------------------------------
7/22/17, 6:20 AM from Pat
I don't blame her!
----------------------------------------------------
7/22/17, 9:11 AM to Pat (from Howard)
She just put down a 3 inch diameter piece of ham and a quarter of a buttered
English muffin. Also took pills without gagging. Would have eaten the scrambled
eggs I think if they hadn't been cold.
Amazing! She hadn't been able to eat like that or take pills that easily for
weeks.
Actually hungry. We always had trouble getting her to eat meat like the dialysis
doctor wanted her to.
I am astounded at how gut flora can have such an effect! Too early to tell much
of course and I might be overreacting.
She says diarrhea already seems to be lessened. Time will tell but I am feeling
very hopeful. 💕
----------------------------------------------------
7/22/17, 9:14 AM from Pat
Wouldn't that be wonderful!!
I mean it IS wonderful.
----------------------------------------------------
7/22/17, 9:16 AM to Pat (from Howard)
Yes. I think the doctor that did the procedure has often seen speedy results but
of course didn't want to raise our expectations too high.
----------------------------------------------------
7/22/17, 9:19 AM from Pat
Those bugs are good warriors. And fast. Thank you Donor person!!
----------------------------------------------------
7/22/17, 9:19 AM to Pat (from Howard)
Yes!
----------------------------------------------------
7/22/17, 9:21 AM from Pat
This might be one of those times when you don't want to meet your donor. Heh heh
----------------------------------------------------
7/22/17, 9:50 AM to Pat (from Howard)
Just drank a whole bottle of boost! Really amazing change/progress.
----------------------------------------------------
7/22/17, 10:02 AM to Pat (from Howard)
One of the doctors was just in saying she might be ok to release Monday. He
seemed to be aware that almost miraculous results often occur. Miraculous was my
word not his of course.
----------------------------------------------------
7/22/17, 10:03 AM to Pat (from Howard)
You said you might know people with this problem. If this all works out you
might want to let them know.
----------------------------------------------------
7/22/17, 10:04 AM from Pat
So good grief. Let's make it available. Wait! ... it is way available. Amazon
should sell the kit.
----------------------------------------------------
7/22/17, 10:08 AM to Pat (from Howard)
Openbiome.org. is where to go for info and materials.
There are instructions out on the internet for diy procedures involving a stool
from a little kid, a blender, and enema apparatus. Really!
----------------------------------------------------
7/22/17, 10:10 AM to Pat (from Howard)
We don't have any problem with release of info on this. I am thinking of doing a
reader's digest article actually.
----------------------------------------------------
7/22/17, 10:11 AM from Pat
Of course! It's too good!
I'm dying to know how much it costs to put a cost free substance into an NG
tube.
----------------------------------------------------
7/22/17, 10:12 AM to Pat (from Howard)
Prices are there on Openbiome.org. About $700 if I recall correctly.
----------------------------------------------------
7/22/17, 10:15 AM to Pat (from Howard)
$700. You paid WHAT for WHAT!
Yes. NG tube, x-rays to be sure of placement, etc.
----------------------------------------------------
7/22/17, 10:16 AM to Pat (from Howard)
Has to be past pyloric valve. Or yuccck.
----------------------------------------------------
7/22/17, 10:18 AM from Pat
Of course. NG are always verified for placement.
----------------------------------------------------
7/22/17, 10:35 AM from Pat
I like the profit margin, haha
----------------------------------------------------
7/22/17, 10:39 AM to Pat (from Howard)
Gives the phrase "eat ..." a whole new meaning- and you can charge for it. 🙂
----------------------------------------------------
7/22/17, 10:57 AM to Pat (from Howard)
I worked with Paul Hu at Motorola. He was the worlds smartest guy. When an
imponderable question arose someone would invariably say "Hu knows". 😀
----------------------------------------------------
7/23/17, 11:54 AM from Pat
How are the kind and beneficial bacteria doing today?
My RN friend Mo tells me they have done this on race horse farms for eons. I
guess for colic.
----------------------------------------------------
7/23/17, 12:28 PM to Pat (from Howard)
She is eating better than she has since this all began on 2 June. We are going
to attempt walking in a moment to see if she can. Diarrhea may be diminishing.
May be released tomorrow. Either home or rehab. She strongly prefers home.
Doctor just reported that potassium level is finally within acceptable levels
and the doctor said it might stay within limits if the diarrhea continues to
decline. She just walked about 70 feet with a walker.
Why am I not surprised that expensive race horses would get more advanced care
than humans? 😀💕
----------------------------------------------------
7/23/17, 12:38 PM from Pat
Yes! But horses and dogs meds are approved much more easily. And vets use them
if it makes medical sense.
----------------------------------------------------
7/23/17, 12:40 PM from Pat
I'm very very VERY happy for Susan and you. There aren't many real cures for
illnesses, but this one looks like a cure.
----------------------------------------------------
7/23/17, 12:41 PM to Pat (from Howard)
I hope so ... 💕
----------------------------------------------------
7/23/17, 12:43 PM to Pat (from Howard)
Certainly an obvious improvement so far.
----------------------------------------------------
7/23/17, 12:43 PM from Pat
For sure
----------------------------------------------------
7/23/17, 12:47 PM from Pat
This was Mo's comment:
Omg... .this has been the practice on horse breeding farms for as long as I was
in the business! Interesting how it has now been adopted by human medicine... .
----------------------------------------------------
7/23/17, 12:48 PM to Pat (from Howard)
Does she know about "yellow soup"? 🤢
----------------------------------------------------
7/23/17, 12:49 PM from Pat
I will tell her next time we go to IHOP
----------------------------------------------------
7/23/17, 12:49 PM to Pat (from Howard)
Funny!
----------------------------------------------------
7/23/17, 12:52 PM to Pat (from Howard)
Yellow soup reference:
https://www.research.va.gov/currents/winter2015/winter2015-11.cfm
----------------------------------------------------
7/24/17, 10:19 AM to Pat (from Howard)
Thanks! Things continue to improve I think. Has gone 5 hours without diarrhea so
far this morning. New record. Took all pills and a bottle of boost without
difficulty. Amazing.
----------------------------------------------------
7/24/17, 10:20 AM from Pat
Truly amazing. 🤗
----------------------------------------------------
7/24/17, 10:20 AM to Pat (from Howard)
Yes!
----------------------------------------------------
7/24/17, 2:53 PM from Pat
Everything still good?
----------------------------------------------------
7/24/17, 2:56 PM to Pat (from Howard)
Maybe. Diarrhea still occurring. Less though maybe. Doctor was in and said it
takes time.
----------------------------------------------------
7/24/17, 2:58 PM to Pat (from Howard)
She was able to stand up and sit four times. I wanted her to walk but they never
provided the help they insisted we have before walking. I bailed about 15
minutes ago.
----------------------------------------------------
7/24/17, 2:59 PM from Pat
It may not even be the cdiff organism anymore. I would think the colon needs
time to heal from all of that inflammation. I'm guessing.
----------------------------------------------------
7/24/17, 3:00 PM from Pat
Oh some of those rehabs are too busy
----------------------------------------------------
7/24/17, 3:00 PM to Pat (from Howard)
Yes in both issues. 😀
----------------------------------------------------
7/25/17, 7:08 PM from Pat
How did today go?
----------------------------------------------------
7/26/17, 4:54 AM to Pat (from Howard)
Released from hospital about 6 pm Tuesday. She is home. Diarrhea still but
diminishing. Doctor said it often takes 10 days or so after fecal transplant for
things to return to normal. So I'm on diaper duty. Just changed her at 3am.
Awake since. 💕
----------------------------------------------------
7/26/17, 6:20 AM from Pat
Aww! That's good news! Love you!!!
----------------------------------------------------
7/29/17, 10:14 AM to Pat (from Howard)
This is what I sent to doctors Ameneni and L this morning. Just FYI.
Hi. This is from Howard Anderson. You did fecal transplant on my wife, Susan on
Friday, 21 July. Things seemed to be getting better but now getting worse.
Diarrhea every 2 to 3 hours at night, i.e. 8:30, 2:30, 4:30, 6:30 and 7:30 last
night. In addition skin between butt cheeks has turned gray and I don't think
that is good. Dry heaves this morning while trying to take pills. Appetite was
improving but now declining. A little banana and tiny bit of apple sauce this
morning.
BP just now 79/54. Temp 95.7.
Please advise.
Thanks, from Howard
----------------------------------------------------
7/29/17, 1:13 PM from Pat
Thorough report.
----------------------------------------------------
7/29/17, 1:14 PM from Pat
Darned cdiff does recur sometimes
----------------------------------------------------
7/29/17, 1:17 PM to Pat (from Howard)
Yeah. We are in ER at the moment. She is being admitted and we are waiting for a
room.
I've been attending to her from 10pm to 7am. Had help rest of the time but this
has been leaving me tired.
💕
----------------------------------------------------
7/29/17, 1:22 PM from Pat
It is too much for one person
----------------------------------------------------
7/29/17, 3:54 PM to Pat (from Howard)
Doctors were just in. They will restart flagil and Vancomycin to try to beat
back the C. Diff. Then after a bit of that try the fecal transplant again. The
gray areas are not a problem yet but they will monitor and fix.
----------------------------------------------------
7/29/17, 3:55 PM from Pat
Ok. I hope you get rest 😳❤️❤️
----------------------------------------------------
7/29/17, 3:57 PM to Pat (from Howard)
Yeah. She won't let me go yet. Waiting to see if rectal tube the doctors
suggested will actually be ordered.
----------------------------------------------------
7/29/17, 3:58 PM to Pat (from Howard)
Of course that might not happen til tomorrow.
----------------------------------------------------
7/29/17, 3:58 PM from Pat
Oh.
----------------------------------------------------
7/29/17, 4:01 PM to Pat (from Howard)
We all get used to "internet time" where everything is supposed to happen NOW!
🙂💕
----------------------------------------------------
7/29/17, 4:35 PM from Pat
I "expected" that before the internet. Didn't always get it of course.
----------------------------------------------------
7/29/17, 4:37 PM to Pat (from Howard)
Yeah. Sign on my desk at Motorola: "if I had wanted it tomorrow I would've asked
for it tomorrow. ". 🙂💕
----------------------------------------------------
7/29/17, 4:37 PM to Pat (from Howard)
I'm home now.
----------------------------------------------------
7/29/17, 4:38 PM from Pat
I think medicine, hospitals used to be able to do a lot of thing immediately.
Better staffed. I've worked in 10 hospitals in 5 states. The deskilling is
shocking.
----------------------------------------------------
7/29/17, 4:39 PM from Pat
I love that sign!!
----------------------------------------------------
7/30/17, 4:01 PM from Pat
How is Susan?
----------------------------------------------------
7/30/17, 4:09 PM to Pat (from Howard)
Throwing up this morning. Difficult for her to swallow medicine without gagging.
Being given flagil enemas via rectal tube. Doctor says immune system is weak
probably because of peritoneal dialysis. I was only there a couple of hours this
morning because I was coughing some and maybe coming down with something and I
don't want to give it to her. Doctor said we were right to return to hospital.
If they can get C. Diff. Under control will probably try fecal transplant again.
Not sure when that would be. Damn.
----------------------------------------------------
7/30/17, 4:11 PM from Pat
Damn is right..
important that you get rest while you can!
----------------------------------------------------
7/30/17, 4:11 PM to Pat (from Howard)
Thanks.
----------------------------------------------------
7/30/17, 5:25 PM to Pat (from Howard)
C. Diff. test today came back negative. Something else might be wrong. How
reliable is C. Diff. Test? GI doctor will be involved tomorrow. Maybe
colonoscopy. We don't think it is carcinoid but don't know. Its been under
control for over twenty years.
----------------------------------------------------
7/30/17, 5:38 PM from Pat
There are some false negatives. I don't know the percentage..
----------------------------------------------------
7/30/17, 5:40 PM to Pat (from Howard)
They are suspending flagil and Vancomycin for the time being.
----------------------------------------------------
7/30/17, 5:45 PM from Pat
"In the majority of cases, the false negative C. difficile test results did not
seem to impact the clinical outcome in these patients."
----------------------------------------------------
7/30/17, 5:48 PM from Pat
A costly study that indicates identifying the cause made little c-difference.
----------------------------------------------------
7/30/17, 5:56 PM to Pat (from Howard)
I was just looking at that same or similar reference. So does suspending the
anti C. Diff. drugs make sense? I think those tend to make her feel sick. This
morning was throwing up green bile supposedly. 5hiaa test would show carcinoid
activity supposedly. Wonder if small intestine has a carcinoid problem again.
However that seems really unlikely. She was having no digestive problems prior
to being diagnosed with positive C. Diff. test. Carcinoid wouldn't grow that
fast. Usually anyway.
----------------------------------------------------
7/30/17, 5:58 PM from Pat
Right. Yes I think suspending the abx upon negative test is indicated
----------------------------------------------------
7/30/17, 5:59 PM to Pat (from Howard)
Yeah. Agree.
----------------------------------------------------
7/30/17, 5:59 PM to Pat (from Howard)
So why throwing up?
----------------------------------------------------
7/30/17, 6:00 PM from Pat
Colitis?
----------------------------------------------------
7/30/17, 6:01 PM to Pat (from Howard)
Of course maybe they started drugs last night and throwing up this morning was a
result?
What's colitis and what does one do for that.
----------------------------------------------------
7/30/17, 6:06 PM from Pat
Just inflammation of colon..
----------------------------------------------------
7/30/17, 6:07 PM to Pat (from Howard)
That is definitely possible. How to treat?
----------------------------------------------------
7/30/17, 6:09 PM from Pat
Time I think..
----------------------------------------------------
7/30/17, 6:10 PM from Pat
Not sure. But treatment Depends on csuse
----------------------------------------------------
7/30/17, 6:14 PM to Pat (from Howard)
I kept her alive on Dairy Queen milkshakes for a month or two right before
carcinoid was diagnosed but they don't want her to have milk related stuff
currently. I'd bet strongly that she would tolerate that better than anything
else at the moment.
----------------------------------------------------
7/30/17, 6:39 PM from Pat
Probably. Ask drs.. it is kinda dogma ... Brat diet for diarrhea is bread rice
applesauce ..And toast... I've forgotten the memory trick. but it has been shown
to not be necessary..
7/30/17, 6:43 PM from Pat
Milk products have been diarrhea taboo. I'm not convinced
----------------------------------------------------
7/30/17, 6:45 PM to Pat (from Howard)
She is not particularly a banana fan, hates rice,semi -ok with applesauce .
Toast is ok
----------------------------------------------------
7/30/17, 6:46 PM from Pat
Oh yeah..Bananas was the B!
----------------------------------------------------
7/30/17, 6:46 PM to Pat (from Howard)
If prepared to her specifications and still hot.
----------------------------------------------------
7/30/17, 6:47 PM from Pat
Haha!
----------------------------------------------------
7/30/17, 6:47 PM to Pat (from Howard)
Feeding her can be a pain.
----------------------------------------------------
7/30/17, 6:47 PM from Pat
I can imagine..Ya gotta love her!
----------------------------------------------------
7/30/17, 6:48 PM to Pat (from Howard)
Yep.
----------------------------------------------------
7/31/17, 1:06 PM from Pat
How is Susan?
----------------------------------------------------
7/31/17, 1:31 PM to Pat (from Howard)
When they tried to take blood it made her sick and that didn't go away so didn't
eat this morning. Doctors came in. About three at half hour intervals. Currently
a bit puzzled and are going to do more tests to rule out other things. If
nothing new is found then will probably do Fecal transplant again.
May do 5-HIAA test to make sure carcinoid is not presenting a new problem. Also
maybe colonoscopy.
Saturday night I was coughing up tiny bits of yellow stuff with taste I
recognize as characteristic of beginning of flu or cold. Stayed home most of
yesterday and stayed in bed. Think I might have beat it as no sore throat
developed. Still occasional small cough today. Hope I have beat it anyway.
💕
----------------------------------------------------
7/31/17, 1:35 PM to Pat (from Howard)
Forgot to mention: C. Diff. test was negative last night so they took her off
flagil and vancomycin. Partly why they are puzzled.
----------------------------------------------------
7/31/17, 1:36 PM from Pat
Wow.. that was close. ..The cold or flu..
I think the docs are really dedicated. That's great..
They must know how special she is!!
Yes, time for testing and colonoscopy.
----------------------------------------------------
8/1/17, 7:41 AM from Pat
Do they do the 24 hr urine test or the one sample? Probably just the single
sample now that I think about it.
----------------------------------------------------
8/1/17, 7:43 AM to Pat (from Howard)
Think they do 24 hour. Will need to do by catheter.
----------------------------------------------------
8/1/17, 7:45 AM from Pat
A colonoscopy might be better for diagnosis but I don't know if they could get a
clear picture without bowel prep. They would know of course.
----------------------------------------------------
8/1/17, 7:47 AM to Pat (from Howard)
Not sure though.
Also I was over optimistic regarding recovery from my upper respiratory
situation. More coughing up junk last night.
Yeah regarding prep. Possibly problematic.
----------------------------------------------------
8/1/17, 7:49 AM from Pat
Sorry you are still sick!
----------------------------------------------------
8/1/17, 7:52 AM to Pat (from Howard)
I feel good in the mornings then run down as the day wears on.
Carcinoid can release serotonin which causes diarrhea. Also causes flushing but
she is not showing that. Good idea to rule out wild cards this time though I
think.
----------------------------------------------------
8/1/17, 8:07 AM to Pat (from Howard)
Her tumors have been under control for 20 years with sandostatin. No inhibitors
have been necessary.
----------------------------------------------------
8/1/17, 9:46 AM from Pat
Oh good.
----------------------------------------------------
8/2/17, 1:42 PM from Pat
Any news about Susan. Is she better?
----------------------------------------------------
8/2/17, 1:54 PM to Pat (from Howard)
About same. With C. Diff. tests negative they are trying to rule out other
stuff. Running 5-HIAA and Chromogranin A to see if carcinoid tumors suddenly
changed behavior. Also colonoscopy planned and colon biopsy.
Would seem to be a pretty strange coincidence if Carcinoid is suddenly a factor.
Sent data to Dr. Woltering who is one of the best carcinoid doctors in the world
and he immediately sent sandostatin dosage suggestion for iv. (You can see
pictures of him with Susan on her carcinoidinfo.info web site!
She still feels sick but I think she has been holding a little bit down.
So they are working on her anyway.
----------------------------------------------------
8/2/17, 1:58 PM from Pat
Yes I'm at the site every now and then and I know about dr W. That should help
having his input.
----------------------------------------------------
8/2/17, 2:09 PM to Pat (from Howard)
Yeah. I thought it wouldn't hurt anyway. They do probably need to complete
testing before throwing in a wild card though. Hope they will be thinking that
too.
I am sicker than I thought I would be. No temp. No sore throat. No aches or
pains. Just feel off and coughing during the night when I wake up. Person at the
desk in our building says I am not the only one with this problem currently.
Shelly went to be with Susan today and will tomorrow and I will stay home to
hopefully avoid giving Susan whatever it is I have. I've been wearing a mask to
prevent giving it to other people if I go down to get mail.
----------------------------------------------------
8/2/17, 2:15 PM from Pat
Oh yes, everyone has problems with auto complete..
Glad Shelly is with Susan and you can stay away a bit. Good idea to wear mask in
your building or anywhere else to protect others.
8/2/17, 2:19 PM to Pat (from Howard)
Oh yeah. There is a big picture of me in our observatory on page 60 of September
"Astronomy" magazine that I just noticed.
----------------------------------------------------
8/3/17, 9:42 AM from Pat
How's Susan?
----------------------------------------------------
8/3/17, 9:49 AM to Pat (from Howard)
Yep. I used cellphone to take picture.
They started sandostatin drip in accordance with dr Woltering's suggestion.
Hard to tell if there has been any effect yet due to rectal tube. Started 11pm
last night. Colonoscopy tomorrow. I am still sick. Shelly is there with her.
----------------------------------------------------
8/3/17, 9:54 AM from Pat
Glad for drip started. Glad for Shelly. I know she is helping a lot along with
her work.
----------------------------------------------------
8/4/17, 2:22 PM to Pat (from Howard)
Still early to tell but we think sandostatin might be working.
I am now taking doxycycline hyclate because my doctor thinks I was on way to
pneumonia. I collected all of the sticky yellow stuff I coughed up for them to
see. About 5cc over a 12 hour period. I also had to go for an X-ray. They said
if that looked bad they would call me. No message received so hopefully not so
bad. 🙂💕
----------------------------------------------------
8/4/17, 2:32 PM from Pat
Wow!! I'm so glad you caught it. Doxycycline should do it.
And yay for Sandostatin for Susan. 💓💓
----------------------------------------------------
8/4/17, 2:43 PM to Pat (from Howard)
Well jury still out on sandostatin and Susan but Shelly says she has not had
diarrhea for a while and she is disconnected from the rectal tube.
Weird thing is they wheeled her down to do colonoscopy then realized they hadn't
drained her dialysis fluid from the peritoneal cavity and they won't take the
machine down to where they were going to do the colonoscopy and that was the
last I heard so I don't know exactly where they are in the process. They didn't
want to inflate her with all the fluid in place. I'm not sure why people don't
think these things through. 🙂 I just got a call from my doctor and they said
the x-rays don't show anything bad so I should just take the antibiotic's and
continue on. Unless I start feeling worse. If I have a tendency to walk around
with semi pneumonia how would I know when I felt worse?🙂💕
----------------------------------------------------
8/4/17, 4:36 PM from Pat
Anyway glad you are not full blown pneumonia!
My guess is that no one mentioned capd to the GI drs. They may have mentioned
Renal failure but may not have mentioned capd
----------------------------------------------------
8/4/17, 5:45 PM to Pat (from Howard)
Switching to penicillin derivative rather than a tetracycline derivative. Am at
pharmacy now. Tetracycline was causing eye problems...
----------------------------------------------------
8/4/17, 5:52 PM from Pat
Yes I think you'll do good on augmentin
----------------------------------------------------
8/4/17, 6:16 PM to Pat (from Howard)
Yeah pretty sure I've taken it before and I don't remember going blind with it.
Hope it works. I asked the pharmacist if I should wait until at least 12 hours
after the previous drug before taking this one and she said yes so I will start
this in the morning at 6 AM.
----------------------------------------------------
8/5/17, 4:27 PM to Pat (from Howard)
Actually I think they already have had a positive effect.
I Coughed up a lot more stuff last night. I am interpreting that as a good sign.
Had a headache this morning until about an hour ago.
My experience in the past was that there was a rapid improvement after starting
an antibiotic.
I don't think it is a placebo effect but I could be wrong.
Until the headache dissipated I was afraid that augmentin was not working.
When I cough right now on purpose it is nowhere as deep as before so I am
hopeful. Feel better now than I have all week.
Tonight will provide a lot more evidence however.
💕
----------------------------------------------------
8/5/17, 4:33 PM to Pat (from Howard)
Colonoscopy on Susan revealed "ulcerated polyps". Biopsy results maybe Monday.
We think sandostatin drip is having good effect. She ate three pancakes this
morning. No abdominal pain. Vast improvement over last few days. Not feeling so
nauseated.
----------------------------------------------------
8/5/17, 5:19 PM from Pat
Very happy to hear about Susan! I mean ... Being able to eat and less nausea.
If you feel better that fast on antibiotics it is your immune system finally
gaining control. But I know that is hard to believe.
----------------------------------------------------
8/5/17, 5:20 PM from Pat
I'm just glad you are better!
----------------------------------------------------
8/5/17, 5:49 PM to Pat (from Howard)
I understand. My unaided immune system was making no progress until the
antibiotics though. It must have tipped the balance somehow?
----------------------------------------------------
8/5/17, 6:03 PM to Pat (from Howard)
So the only worrisome thing left at this point is when I took one doxycycline
pill and then waited 12 hours or more and then started the other antibiotic
Augmentin, did that create any sort of potential problem? The problem with my
left Eye did go away after stopping the doxycycline and I don't think that was
my imagination.
----------------------------------------------------
8/5/17, 6:06 PM from Pat
I think you were wise to stop doxy. I don't see a potential problem . Abx are
changed like that when needed. These abx are broad spectrum.
----------------------------------------------------
8/5/17, 6:09 PM to Pat (from Howard)
It seemed to be attacking my eyelid. I had trouble in the past with tetracycline
causing rectal burning itching symptoms and made it almost impossible to go to
the bathroom and I did not realize that doxycycline was a derivative of
tetracycline until the eye symptom arose and I started researching it.
----------------------------------------------------
8/5/17, 6:10 PM from Pat
Yes, even a slight swelling near or on the face after taking an abx is a
concern.
----------------------------------------------------
8/5/17, 6:11 PM to Pat (from Howard)
Thanks. Fortunately the on-call doctor was my primary care doctor, Dr Mickus.
Amazing!
----------------------------------------------------
8/5/17, 6:13 PM from Pat
Oh that's good. They do not hesitate to change abx in situations like yours.
----------------------------------------------------
8/5/17, 6:15 PM to Pat (from Howard)
I think he was a little surprised by my reaction and was initially a bit
reluctant. But when I mentioned tetracycline reaction he was quickly
sympathetic.
----------------------------------------------------
8/5/17, 6:16 PM from Pat
Right, that is two strikes, and time to change abx.
----------------------------------------------------
8/5/17, 6:17 PM from Pat
People have all sorts of individual rxns
----------------------------------------------------
8/5/17, 6:23 PM to Pat (from Howard)
Yes blurred vision is listed as a side effect but he was probably not imagining
eyelid problem. Surprised me too. I was not sure it was the antibiotic and did
eye irrigation with salt water when it started. Somehow the eyelid problem
blurred the left eye's vision. Was not simply resolved by cleaning the eye which
deepened my concern.
----------------------------------------------------
8/5/17, 6:24 PM from Pat
I don't like anything like that. It isn't worth taking a chance.
----------------------------------------------------
8/5/17, 6:40 PM from Pat
Drs should never have to say "I'm sorry". 🙂
----------------------------------------------------
8/5/17, 6:41 PM to Pat (from Howard)
He saved my life before when heart fluid in sac around heart became a problem.
He is really a great guy.
----------------------------------------------------
8/5/17, 6:43 PM from Pat
Oh right. That is a run, don't walk, emergency when it presents in ER
----------------------------------------------------
8/5/17, 6:44 PM from Pat
That pump loses efficiency fast under pressure tamponade.
----------------------------------------------------
8/5/17, 6:45 PM to Pat (from Howard)
He suspected it before ER. Sent me for a scan then immediately suggested ER.
----------------------------------------------------
8/5/17, 6:46 PM from Pat
It is one of the "mega codes we taught in Advanced Cardiac Life Support. I was
an ACLS Instructor for 8 years.
----------------------------------------------------
8/5/17, 6:47 PM to Pat (from Howard)
All stemmed from a bad tooth I believe.
----------------------------------------------------
8/5/17, 6:51 PM from Pat
How did it do that?
----------------------------------------------------
8/5/17, 6:55 PM from Pat
I guess infection, but you would think it would be more prevalent
----------------------------------------------------
8/5/17, 6:58 PM from Pat
Sometimes the cause is unknown . I hate that
----------------------------------------------------
8/5/17, 6:58 PM to Pat (from Howard)
We were camped out. I didn't want to abort so took aspirin for 5 or 6 days. Got
home but dentist could not find problem. Then a day or two later the heart
problem developed. At least that is what I recall. They checked fluid they
removed for infectious agents but were unable to find any.
----------------------------------------------------
8/5/17, 6:59 PM to Pat (from Howard)
Yeah I hate it too. Leaves one wondering
----------------------------------------------------
8/5/17, 6:59 PM to Pat (from Howard)
If it could happen again.
----------------------------------------------------
8/5/17, 7:12 PM from Pat
Sometimes cardiac pain is referred to jaw or teeth. I'm not saying that was what
happened In your case, but it sounds like the patients we frequently see in CCU
that went to dentist first, had no other pain besides dental,and turned out to
be heart pain. In the case I most remember, the heart muscle was being damaged.
(MI) but that's not the same as cardiac tamponade. Still the pain might have
been the same, and referred.
The other infrequent referred pain is pain in feet, but turns out to be aortic
aneurysm. We had a patient in CCU that first went to podiatry. Podiatry sent him
to cardiology. He had a successful repair.
----------------------------------------------------
8/5/17, 7:15 PM to Pat (from Howard)
Well, in my case they did find the tooth problem and fix it. While camped I
could tap on the offending tooth and determine exactly which one it was.
----------------------------------------------------
8/5/17, 7:16 PM from Pat
Right. That's a little different than referred pain🙂
----------------------------------------------------
8/7/17, 5:10 PM to Pat (from Howard)
I am gradually better. Almost ok🙂 Think sandostatin drip is helping Susan. Had
breakfast then they had her take pills and threw up. Ordered decent dinner
tonight so is apparently hungry again. On Imodium again as of this afternoon. 💕
----------------------------------------------------
8/7/17, 5:11 PM to Pat (from Howard)
No biopsy results yet from colon polyps.
----------------------------------------------------
8/7/17, 5:13 PM from Pat
I'm glad you are better even if gradually.
I hope Susan continues to improve. It's been a long haul
----------------------------------------------------
8/7/17, 5:17 PM to Pat (from Howard)
Yes. 5-HIAA result was 135. 10 times normal so carcinoid is apparently
reasserting.
----------------------------------------------------
8/7/17, 5:19 PM from Pat
Darn!
----------------------------------------------------
8/7/17, 5:19 PM to Pat (from Howard)
Yeah. Darn.
----------------------------------------------------
8/9/17, 1:30 PM from Pat
How are you and Susan today?
----------------------------------------------------
8/9/17, 1:32 PM to Pat (from Howard)
I'm still not well. Susan will do another Fecal transplant today. I'm in bed at
the moment. Shelly is with Susan.
----------------------------------------------------
8/9/17, 1:34 PM from Pat
OH no! Are you ok there? I hope you know I can come help if you need anything!
Please don't hesitate
----------------------------------------------------
8/9/17, 1:35 PM to Pat (from Howard)
Thanks. We are ok.
----------------------------------------------------
8/9/17, 1:36 PM to Pat (from Howard)
Just tired. Virus I'm sure. Just takes time I think.
----------------------------------------------------
8/10/17, 4:48 PM from Pat
Hmmm. Susan?
----------------------------------------------------
8/10/17, 4:54 PM to Pat (from Howard)
Did another Fecal transplant yesterday. Assessing results now. One of her iv
sites became red and infected so did one course of iv Vancomycin. Hope that
doesn't mess up things. Also results received yesterday before Fecal transplant
were again positive for C. Diff. That was after two previous test results were
negative.
Anyway waiting to see if diarrhea problem has improved.
----------------------------------------------------
8/10/17, 4:56 PM from Pat
Good grief. That c diff is a bear.
----------------------------------------------------
8/10/17, 4:57 PM from Pat
How is she feeling?
----------------------------------------------------
8/10/17, 4:59 PM from Pat
Is she up in a chair or is she able to do pt?
----------------------------------------------------
8/10/17, 5:00 PM to Pat (from Howard)
Yeah. Bear. Primary care doctor said three tests were necessary. Literature on
internet says one is sufficient. Hospital doctors I think thought one should
have been sufficient.
Was in chair yesterday. Not sure today. I will call her now and get current
status.
----------------------------------------------------
8/10/17, 5:04 PM from Pat
False negatives may be more common than false positives.
----------------------------------------------------
8/10/17, 5:08 PM to Pat (from Howard)
Ankles a bit swollen. She declined getting up but will try tomorrow. She was
said they are going to check arm iv site that turned red to make sure there is
not a blood clot there.
Still a bit of diarrhea. I had forgot and that the general consensus is that
after a fecal transplant it might take 7 to 10 days for everything to return to
normal.
----------------------------------------------------
8/10/17, 5:10 PM to Pat (from Howard)
Supposedly there is a closer place for rehabilitation so that I wouldn't have to
drive 15 miles each way. There are only apparently three in the area that do
dialysis and we only found out about two of them before.
----------------------------------------------------
8/10/17, 5:12 PM to Pat (from Howard)
I still have occasional coughing and sometimes dizziness. I think the dizziness
might be from the augmentin?
----------------------------------------------------
8/10/17, 5:42 PM to Pat (from Howard)
Forgot to mention they took a 24 hour urine sample from Susan today to run a
5-HIAA test. They took a similar sample a week or so ago and then lost it
somehow.
----------------------------------------------------
8/10/17, 5:46 PM to Pat (from Howard)
Even though it was hand delivered directly to the lab.
----------------------------------------------------
8/10/17, 5:49 PM from Pat
That's amazing. It is not like that sample is in a tiny test tube!
8/11/17, 11:10 AM from Pat
How are you and Susan today?
----------------------------------------------------
8/11/17, 11:13 AM to Pat (from Howard)
Ok. She was in a chair for hour and a half. Ate some pancakes. Took pills and
didn't throw up. Progress. 🙂💕
----------------------------------------------------
8/11/17, 6:41 PM from Pat
It sounds like she needs fecal transplant every few days for a while.. or
something. Is that crazy?
----------------------------------------------------
8/12/17, 9:31 AM to Pat (from Howard)
Well the literature shows that sometimes fecal transplants have to be done two
or three times.
----------------------------------------------------
8/12/17, 9:33 AM from Pat
Oh ok that makes sense to me.
8/12/17, 9:48 AM from Pat
Are you better? (Ignore my texts if u are busy or resting!)
----------------------------------------------------
8/12/17, 9:49 AM to Pat (from Howard)
Better. Will go to see Susan in a moment and will see how I feel walking.
Probably ok.
----------------------------------------------------
8/12/17, 10:16 AM to Pat (from Howard)
Ok. With Susan now. Only slight dizziness while walking. Pretty sure it is
augmentin effect. I can take deep breaths now without coughing. So think I'm ok.
Susan is sleeping.
----------------------------------------------------
8/12/17, 10:20 AM from Pat
I guess it must be augmentin. It does sound like you are over the worst of it.
I'm glad you are with Susan. Susan the amazing lady of all time! 😊
----------------------------------------------------
8/12/17, 10:20 AM to Pat (from Howard)
Yes. She is amazing.
----------------------------------------------------
8/12/17, 10:23 AM from Pat
I don't know anyone quite like her. Strong, determined, capable, smart ... . And
an absolutely kind and wonderful person.
----------------------------------------------------
8/12/17, 10:23 AM to Pat (from Howard)
Thanks. True. 🙂💕
----------------------------------------------------
8/12/17, 10:53 AM to Pat (from Howard)
Doctor was just in and noted dark urine. Said heparin might be cause. Heparin
used to dissolve blood clot caused by one of the earlier iv lines. Said nurse
would do "irrigation" but I don't know what that involves. She has catheter and
urine collection bag.
----------------------------------------------------
8/12/17, 11:32 AM from Pat
Nurse will gently irrigate catheter with a catheter tipped syringe. Hooks where
tan Foley catheter connects with drain bag. (Anout 8 to 10 inches from patients
body)
----------------------------------------------------
8/12/17, 11:38 AM from Pat
Heparin prevents more clots from forming while body enzymes dissolve clots. but
it can cause a bit of bleeding and it could discolor urine.
----------------------------------------------------
8/12/17, 11:40 AM from Pat
No. One of my most frequent calls is dark or bloody urine in Foley. Even stringy
clots. It isn't much to worry about unless it is Frank blood pouring into bag.
I've never seen that though.
----------------------------------------------------
8/12/17, 11:42 AM from Pat
They check heparin level frequently. There are therapeutic levels which are well
known to most everyone.
----------------------------------------------------
8/12/17, 12:21 PM to Pat (from Howard)
I know we've been here too long because the hamburger order taker guy says "Hi
Howard" when I walk up.
----------------------------------------------------
8/12/17, 12:23 PM from Pat
Aaww! That's kinda nice though!
----------------------------------------------------
8/12/17, 12:24 PM from Pat
How is Shelly holding up? I know she works a lot AND she's at the hospital a
lot.
----------------------------------------------------
8/12/17, 12:25 PM to Pat (from Howard)
She said she needed rest today.
----------------------------------------------------
8/12/17, 12:26 PM from Pat
It's really tough being at the hospital. You want to be there, but it is tiring.
----------------------------------------------------
8/13/17, 7:03 AM to Pat (from Howard)
They say 7 to 10 days for diarrhea to abate after Fecal transplant.
----------------------------------------------------
8/13/17, 7:04 AM from Pat
OK. Is she staying in the hospital till after that or are they talking rehab
yet?
----------------------------------------------------
8/13/17, 7:06 AM to Pat (from Howard)
No decision yet. They want to make sure blood clot situation resolved I think.
Probably will go to rehab if released this week.
----------------------------------------------------
8/14/17, 1:17 PM to Pat (from Howard)
Yeah. Up and down. No diarrhea from 10pm to 5am last night but 6 episodes today
already. Saw some forming this morning so that was an improvement but still a
ways to go. Did walk 20 feet or so with walker today.
----------------------------------------------------
8/14/17, 1:55 PM from Pat
Diarrhea sure takes one's strength .
----------------------------------------------------
8/14/17, 1:58 PM to Pat (from Howard)
Lead doctor thinks it didn't work. Putting her back on Vancomycin. Might release
in a couple of days. Presumably without fixing the problem? Do they just give up
eventually?
----------------------------------------------------
8/14/17, 2:07 PM from Pat
I hope not
----------------------------------------------------
8/15/17, 11:53 AM from Pat
How is she today .. and you?
----------------------------------------------------
8/15/17, 11:56 AM to Pat (from Howard)
Still diarrhea. Right side of my throat is tiny bit sore when I swallow. She is
eating and keeping her medicine down.
----------------------------------------------------
8/16/17, 11:13 AM from Pat
And today??
----------------------------------------------------
8/16/17, 11:17 AM to Pat (from Howard)
Susan about same. Would be fine except for diarrhea.
Is she going to have to be on blood thinner for rest of her life? Does the clot
that formed go away? Or will it always be there?
----------------------------------------------------
8/16/17, 11:21 AM from Pat
No the Clot will dissolve.
----------------------------------------------------
8/16/17, 11:23 AM from Pat
Probably already has.
The heparin is to prevent clots growing, which sometimes happens because the
small clot is a surface that blood cells may stick to
----------------------------------------------------
8/16/17, 1:30 PM to Pat (from Howard)
Ok. Thanks! Dr was just in and clarified too. Then I forgot to send this. 🙂
----------------------------------------------------
8/16/17, 1:32 PM to Pat (from Howard)
Have been to my dr. Will be doing a steroid pack.
----------------------------------------------------
8/16/17, 2:02 PM from Pat
Glad you went to dr.😻
----------------------------------------------------
8/16/17, 2:04 PM to Pat (from Howard)
Yeah. Hated to. No obvious symptoms but sore throat and dry cough.
----------------------------------------------------
8/16/17, 2:07 PM from Pat
Right..Like allergic response.
What steroid? Just curious
----------------------------------------------------
8/16/17, 2:17 PM to Pat (from Howard)
Methylprednisolone. Tapered over 6 days.
----------------------------------------------------
8/16/17, 2:19 PM from Pat
Oh ok. Just wanted to know if anything new under the sun.
----------------------------------------------------
8/16/17, 2:19 PM to Pat (from Howard)
Not new? Nobody dies from it? 🙂
----------------------------------------------------
8/16/17, 2:20 PM from Pat
Not new at all.
----------------------------------------------------
8/16/17, 2:20 PM from Pat
Nah you will survive.
----------------------------------------------------
8/16/17, 2:22 PM to Pat (from Howard)
One of the listed side effects is sore throat. So how would I know whether it is
the original sore throat or a new one ? 🙂
----------------------------------------------------
8/16/17, 2:22 PM from Pat
Can susan participate in PT if she were to go to rehab ?
----------------------------------------------------
8/16/17, 2:22 PM to Pat (from Howard)
Yes. She walked today.
----------------------------------------------------
8/16/17, 2:23 PM from Pat
Good!
Uh that's a hard question to answer
----------------------------------------------------
8/16/17, 2:25 PM to Pat (from Howard)
I will start the stuff in the morning since it is laid out according to
breakfast, Lunch, dinner, bedtime etc.
----------------------------------------------------
8/16/17, 4:07 PM from Pat
Right.
----------------------------------------------------
8/16/17, 4:09 PM from Pat
So your dr explained it's anti inflammation?
----------------------------------------------------
8/16/17, 4:10 PM to Pat (from Howard)
Yes. Hope that will work.
----------------------------------------------------
8/16/17, 4:11 PM from Pat
So the coughing and sore throat were pretty disruptive ... Like to sleep etc.
----------------------------------------------------
8/17/17, 8:36 AM to Pat (from Howard)
Thanks. Just now arrived at the hospital
----------------------------------------------------
8/17/17, 8:37 AM from Pat
Ok ..Give Susan a gentle hug from me.😘💓💓
----------------------------------------------------
8/17/17, 3:17 PM from Pat
How is Susan?
----------------------------------------------------
8/17/17, 3:21 PM to Pat (from Howard)
Ok maybe slight improvement in diarrhea frequency.
----------------------------------------------------
8/18/17, 2:29 PM from Pat
Whew busy day for me.
How are you and Susan?
----------------------------------------------------
8/18/17, 2:30 PM to Pat (from Howard)
Lot of coughing for me last night. Susan maybe slight improvement wrt diarrhea.
----------------------------------------------------
8/18/17, 3:00 PM from Pat
Improvement, Slowly but surely.
----------------------------------------------------
8/18/17, 3:01 PM to Pat (from Howard)
I hope.
----------------------------------------------------
8/19/17, 11:19 AM from Pat
Still ok? Improving?
----------------------------------------------------
8/19/17, 11:33 AM to Pat (from Howard)
Put in a rectal tube last night. Slept really good for once. Was really raw and
sore. Didn't have to wake up to be changed frequently during the night. Don't
know how to tell if diarrhea is better or worse. Collection bag has very little
in it so maybe that's good? What's there is very watery so that's probably not
encouraging.
----------------------------------------------------
8/19/17, 11:34 AM from Pat
Colon probably has to heal
----------------------------------------------------
8/19/17, 11:58 AM to Pat (from Howard)
Well, I am about to depart hospital and go rest. She has apparently been
accepted by "Promise hospital of Phoenix" which is set up for longer term care.
Don't know when transfer will occur. May not be today. Can find it on internet.
It is close and in Mesa.
----------------------------------------------------
8/19/17, 12:00 PM from Pat
Oh that sounds good. I won't bother you. But text or call if you want! Love
you!!
----------------------------------------------------
8/20/17, 5:33 PM from Pat
Has Susan moved yet?
----------------------------------------------------
8/20/17, 5:35 PM to Pat (from Howard)
Yep. I will be driving home now.
----------------------------------------------------
8/21/17, 1:59 PM to Pat (from Howard)
Susan sleeping a lot. I am a bit worried. PT did get her to stand briefly. When
she tried to ask me for tv control she asked for "octreotide".
----------------------------------------------------
8/21/17, 2:00 PM to Pat (from Howard)
What causes confusion?
----------------------------------------------------
8/21/17, 2:02 PM to Pat (from Howard)
I think she is ok but sleepy and groggy.
----------------------------------------------------
8/21/17, 2:04 PM from Pat
Could be tired or sometimes medications. Kinda common in long illnesses when
tired.
----------------------------------------------------
8/21/17, 2:06 PM to Pat (from Howard)
Thanks. That is comforting.
----------------------------------------------------
8/21/17, 3:55 PM from Pat
I'm still amazed Susan substituted octreotide for TV control. That sounds more
like a very tired pharmacist or physician.
----------------------------------------------------
8/21/17, 3:58 PM to Pat (from Howard)
She is pretty close to being a carcinoid expert. On her mind I guess. Getting
octreotide shots here that sting.
----------------------------------------------------
8/21/17, 4:28 PM from Pat
I'm sure it is a huge part of her life and on her mind all the time
----------------------------------------------------
8/23/17, 9:24 AM from Pat
Ok today??
----------------------------------------------------
8/23/17, 10:56 AM to Pat (from Howard)
About same. Is eating better I think.
----------------------------------------------------
8/24/17, 2:39 PM from Pat
How are you and Susan today?
----------------------------------------------------
8/24/17, 2:40 PM to Pat (from Howard)
About the same.
----------------------------------------------------
8/25/17, 9:18 AM to Pat (from Howard)
Hi pat. They are talking about transferring to "Springdale Village" care place
on 10 September.
I am puzzled about reason for moving. Insurance considerations?
----------------------------------------------------
8/25/17, 9:19 AM from Pat
Hmmm... I don't know but they need to tell you.
----------------------------------------------------
8/25/17, 9:19 AM to Pat (from Howard)
Supposedly slightly lower level of care needed. But they still haven't solved C.
Diff.
----------------------------------------------------
8/25/17, 9:20 AM to Pat (from Howard)
Ok. Thanks.
----------------------------------------------------
8/25/17, 9:55 AM from Pat
A dr had to write an order or a plan to discharge ... And admit to a step down.
----------------------------------------------------
8/25/17, 11:11 AM from Pat
I think there are insurance considerations
There is a limited amount of days, 20 I think
----------------------------------------------------
8/25/17, 11:13 AM to Pat (from Howard)
Ok. Wasn't sure how it all worked. That must be it. Thanks! 💕🙂
----------------------------------------------------
8/25/17, 11:13 AM from Pat
A limit on skilled nursing facilities (snf called "snifs")
----------------------------------------------------
8/25/17, 11:14 AM to Pat (from Howard)
Ok.
----------------------------------------------------
8/25/17, 11:27 AM from Pat
Spring has good ratings
----------------------------------------------------
8/25/17, 11:32 AM to Pat (from Howard)
Yeah. I saw that. I suppose that is time limited too. I am a bit discouraged
since the diarrhea has never stopped. She is on vancomycin and flagil but
doesn't seem to be having much effect.
----------------------------------------------------
8/25/17, 11:34 AM to Pat (from Howard)
There were a couple of tests weeks ago that came out negative for C. Diff. So
were those false negatives? Damn!
----------------------------------------------------
8/25/17, 11:35 AM to Pat (from Howard)
Or is colon screwed up?
----------------------------------------------------
8/25/17, 11:37 AM to Pat (from Howard)
Openbiome.org has Fecal transplant pills that I cannot get but maybe her primary
doctor could if the long term vancomycin fails.
----------------------------------------------------
8/25/17, 11:38 AM from Pat
Oh that's a good idea.
----------------------------------------------------
8/25/17, 11:39 AM to Pat (from Howard)
I keep trying to think of possible solutions.
----------------------------------------------------
8/25/17, 11:41 AM from Pat
I don't know if that was a false negative. But you and I don't get cdiff because
our immune systems are strong and we aren't on abx. Both of those together.
----------------------------------------------------
8/25/17, 11:47 AM to Pat (from Howard)
Thanks 💕🙂
----------------------------------------------------
8/25/17, 12:21 PM to Pat (from Howard)
If the need ever arose, would I be able to insert and manage rectal tube and
catheter at home? Or is this never done by amateurs?
----------------------------------------------------
8/25/17, 12:37 PM from Pat
It is pretty simple really.
----------------------------------------------------
8/25/17, 12:37 PM from Pat
Kinda self explanatoty
----------------------------------------------------
8/25/17, 12:38 PM from Pat
I haven't seen one used since 1967.
----------------------------------------------------
8/25/17, 12:39 PM to Pat (from Howard)
I did look up how to do it. Just wondering if amateurs (me) ever do such things.
----------------------------------------------------
8/25/17, 12:39 PM from Pat
But maybe with cdiff they are in style
----------------------------------------------------
8/25/17, 12:39 PM from Pat
Yes
----------------------------------------------------
8/25/17, 12:42 PM to Pat (from Howard)
They are in use currently. She had gotten extremely red and sore before they did
this. Even start of small open sore. Tubes helped lots. Just trying to
anticipate possible future situations.
----------------------------------------------------
8/25/17, 1:17 PM to Pat (from Howard)
Maybe. Openbiome pills have to be maintained in medical grade freezer at -20C so
that might present a problem.
----------------------------------------------------
8/26/17, 2:54 PM from Pat
How are things?
----------------------------------------------------
8/26/17, 2:55 PM to Pat (from Howard)
About the same. 💕
----------------------------------------------------
8/26/17, 2:56 PM from Pat
I hope your cold , sore throat, cough are all better
----------------------------------------------------
8/26/17, 2:57 PM to Pat (from Howard)
Yeah. That is pretty much better. Just occasional coughing but I can sleep ok.
----------------------------------------------------
8/28/17, 5:58 AM to Pat (from Howard)
I've received a couple or three calls from her indicating confusion. Marinol was
prescribed to improve appetite a while back. My research indicates that Marinol
might be the cause. Called nurse's station and they are leaving note for doctor.
----------------------------------------------------
8/28/17, 9:58 AM from Pat
So that's marijuana derivative. Is she still on it?
Confusion could be lots of things. I usually think about 02 saturation (simple
pulse oximetry --. Ok if above 89% on room air. Then I think about electrolyte s
.. especially with dialysis and diarrhea. Low Na level can cause disorientation
example.
It's just a thought. Electrolytes have to be ordered and then drawn and taken to
lab. But this may not be something SNFs will be inclined to do. I worked in
Intensive care and open heart recovery, so I'm accustomed to way more monitoring
than is reasonable in other units.
----------------------------------------------------
8/28/17, 10:13 AM to Pat (from Howard)
Thanks. I was driving. Marinol has known side effects consistent with what I
think I'm seeing.
I will be driving to hospital shortly.
----------------------------------------------------
8/28/17, 11:21 AM to Pat (from Howard)
With her now. When I arrived she was about to get out of bed unassisted to "go
get breakfast". Seems completely rational now. Ate some breakfast. She is
reading the newspaper that I brought now.
I think Marinol was the problem. Nurse is suspending it currently and will check
with doctor for further Guidance. Nurse said he had seen such effects in others
on Marinol.
----------------------------------------------------
8/28/17, 11:35 AM to Pat (from Howard)
Nurse also said they are testing everything periodically and she is in normal
range for everything.
----------------------------------------------------
8/29/17, 8:54 AM to Pat (from Howard)
ID doctor who is calling shots agreed that she had seen others affected
similarly by Marinol so that is being stopped. I think Megace will be tried
instead which supposedly does not cause psychosis. 🙂.
When I came in yesterday she was half out of bed and I said "what are you doing"
she said she was getting up to go get breakfast. So the Marinol was beginning to
be potentially dangerous. 🙂could have fallen and broken something. She is
completely lucid this morning thankfully.
💕🙂
----------------------------------------------------
8/29/17, 10:28 AM from Pat
I'm glad she is lucid. Yes falls are definitely a risk for disoriented patients.
----------------------------------------------------
8/29/17, 10:43 AM to Pat (from Howard)
Yep. Just sent a message to you and Shelly indicating a possible future plan.
----------------------------------------------------
8/30/17, 1:59 PM from Pat
How are things today?
----------------------------------------------------
8/30/17, 2:03 PM to Pat (from Howard)
About same. PT accidentally removed rectal tube. Supposedly it will be replaced.
Awaiting that now. Nothing has come out for three hours now so I am again
hopeful. Remission is probably unlikely though given the history.
🙂💕
----------------------------------------------------
8/31/17, 12:07 PM from Pat
How is Susan today?
----------------------------------------------------
8/31/17, 12:10 PM to Pat (from Howard)
Same. Walked some with PT people. Rectal tube replaced 2:30 yesterday. Not much
output yet so I am again hopeful. I am at lunch with ex Motorola guys at the
moment.
----------------------------------------------------
8/31/17, 12:11 PM from Pat
Great news!
----------------------------------------------------
8/31/17, 12:11 PM to Pat (from Howard)
Maybe. I wish anyway.
----------------------------------------------------
9/1/17, 5:21 PM from Pat
But how are you and Susan?
----------------------------------------------------
9/1/17, 5:21 PM to Pat (from Howard)
Same. No miracle. Damn.
----------------------------------------------------
9/1/17, 5:27 PM from Pat
Oh dang. But Susan is amazing and miraculous. So I'm hoping... 🌞
----------------------------------------------------
9/1/17, 5:27 PM to Pat (from Howard)
Me too. 🙂💕
----------------------------------------------------
9/4/17, 12:18 PM to Pat (from Howard)
Nurse had to push stuff down rectal tube a moment ago. Said it felt a little
more solid but we have been fooled before. I continue to be over optimistic I
guess. 🙂💕
----------------------------------------------------
9/4/17, 12:20 PM from Pat
I think it just takes time... And it seems slow when so much is at stake
----------------------------------------------------
9/4/17, 12:21 PM to Pat (from Howard)
Thanks. I hope. 🙂💕
----------------------------------------------------
9/11/17, 11:17 AM from Pat
Wow Jacksonville got hit with flooding! I hope Scott and family are ok... And
their business too.
----------------------------------------------------
9/11/17, 11:21 AM to Pat (from Howard)
Don't know yet. Don't want to bother them yet. Their house according to Susan is
7 feet above the St. John's river. Which might result in couple of feet of water
in house?
----------------------------------------------------
9/11/17, 11:53 AM from Pat
Oh what a mess for everyone affected.
----------------------------------------------------
9/11/17, 1:25 PM to Pat (from Howard)
Susan seems to be better although sleepy and groggy. Diarrhea seems to have
declined further.
----------------------------------------------------
9/11/17, 1:29 PM from Pat
It really sounds like Susan is better every day.. slow but sure!
----------------------------------------------------
9/11/17, 1:34 PM to Pat (from Howard)
I hope. Grogginess is a bit concerning to me but I don't think she has had a
stroke or anything. Does read the newspaper when I bring it each day. Not
reading books though and she ALWAYS read most of the time. I've offered to bring
her kindle but she declines. How worried should I be? Or is GI tract healing
just really tiring? 💕
----------------------------------------------------
9/11/17, 1:35 PM to Pat (from Howard)
She is watching MSNBC and seems to know what is going on in Florida.
----------------------------------------------------
9/11/17, 1:36 PM from Pat
It is tiring. She is alert and oriented..thats great!
----------------------------------------------------
9/11/17, 1:39 PM to Pat (from Howard)
Thanks! It all has been so awful for her and I.
And these days everyone is on "internet time" where everything is resolved
QUICKLY.
----------------------------------------------------
9/12/17, 9:39 AM to Pat (from Howard)
Scott just now said all is well - no major damage.
----------------------------------------------------
9/12/17, 9:39 AM from Pat
Yay!!! That is good news.
----------------------------------------------------
9/12/17, 9:40 AM to Pat (from Howard)
Yes!
----------------------------------------------------
9/16/17, 11:47 AM to Pat (from Howard)
Susan says she feels a little better. I got her onto a bedside toilet one hour
after breakfast and that worked. Nurses said they would help get her up but
nobody showed up so I got her up. Trying to figure out timing so as to get her
on a schedule if possible. Consistency was like cream-of-wheat. So still not
well-formed. Anyway minor progress maybe.
----------------------------------------------------
9/16/17, 11:50 AM from Pat
That's a lot better than watery. That cdiff is really awful stuff!
----------------------------------------------------
9/16/17, 11:51 AM to Pat (from Howard)
Yes. It has been terrible. A week ago I would not have been able to get her up.
PT has helped.
----------------------------------------------------
9/21/17, 12:05 PM to Pat (from Howard)
Still at Springdale rehab And for the foreseeable future currently. Talk more
later.
----------------------------------------------------
9/21/17, 4:38 PM to Pat (from Howard)
Seemed to be forming a few days ago but not so much now. Frequency has reduced I
think so I'm hoping there's still hope. She is not very strong and that is
worrisome. Physical trainers are working with her. She is not all that
enthusiastic about it. I don't know what to do that would help. She is still on
tapered course of vancomycin. That has a couple of weeks or more to continue.
I am impatient and discouraged a little.
----------------------------------------------------
9/21/17, 6:03 PM from Pat
I hope Susan continues to gain strength. it is slow at our ages
----------------------------------------------------
9/21/17, 6:08 PM to Pat (from Howard)
Thanks regarding Susan. At least she is eating better than a few weeks ago when
she tended to throw up a lot. I hope the GI tract is healing.
----------------------------------------------------
9/27/17, 7:27 AM to Pat (from Howard)
Dothan.
Swelling left arm. Weeks ago in hospital they said cause was a blood clot. They
then treated with blood thinner.
Currently they have her arm in compression bandaging.
Kidney dr yesterday wondered if cause might be a blood clot that would have to
be diagnosed via ultrasound. He apparently did not convey that thought to the
rehab place here.
Any thoughts?
----------------------------------------------------
9/27/17, 7:29 AM from Pat
There are portable dopplars . we call them out to wherever patients are. must be
ordered by a physician.
----------------------------------------------------
9/27/17, 7:30 AM from Pat
Medicare usually covers to my knowledge
----------------------------------------------------
9/27/17, 7:31 AM to Pat (from Howard)
Thanks. Any great danger with respect to current situation.
----------------------------------------------------
9/27/17, 7:46 AM to Pat (from Howard)
My internet research just now indicates compression bandages are the proper
treatment. Weird.
----------------------------------------------------
9/27/17, 7:48 AM from Pat
They did the right thing then. probably not their first experience.🙄
----------------------------------------------------
9/27/17, 7:50 AM to Pat (from Howard)
Yep. I guess I worry too much. But this has been a continuously worrying
experience. 🙂💕
----------------------------------------------------
9/27/17, 7:53 AM from Pat
It is good to monitor and double check.
----------------------------------------------------
9/27/17, 7:56 AM to Pat (from Howard)
Thanks. I've been trying to keep her alive. It has been scary at times.
----------------------------------------------------
9/27/17, 8:08 AM from Pat
Stressful. dont forget your health too! Your stress causes a fight/flight
response. ..increased stress hormones, thus increased serum glucose for muscles.
decreased blood to gastro intestinal tract.
think like a prey animal ... pursued animals walk and run. they eat less than
usual.
--stress without physical activity is damaging to cells.
(hope im not adding to stress!)
----------------------------------------------------
9/27/17, 8:37 AM to Pat (from Howard)
It's ok. If I were too stressed I would be losing weight. 🙂 need MORE stress?
----------------------------------------------------
9/27/17, 8:39 AM to Pat (from Howard)
Weight creeping up. Not doing mile walks lately because of all of this
disrupting schedule.
----------------------------------------------------
9/27/17, 8:42 AM from Pat
Haha.. "need more stress" no.
and i know this is caregiver role is all very difficult ... for anyone who does
it.
----------------------------------------------------
9/27/17, 9:15 AM to Pat (from Howard)
Yeah. Need 24 hour urine collection for kidney dr appointment tomorrow for
adequacy test. Catheter popped out. They still think there is time but nobody
seems to do anything "now". So stress of waiting seem to be ever present.
----------------------------------------------------
9/27/17, 10:01 AM to Pat (from Howard)
Milky white urine now. More stress.
----------------------------------------------------
9/27/17, 3:55 PM from Pat
Sorry.. had a meeting! so why white? was it temporary??
----------------------------------------------------
9/27/17, 4:24 PM to Pat (from Howard)
Don't know. UTI again?
----------------------------------------------------
9/27/17, 4:25 PM from Pat
I dont know ... if foul smelling then probably
----------------------------------------------------
9/27/17, 4:27 PM to Pat (from Howard)
It's in collection bag so cannot smell. Maybe in the morning. Sure don't want to
start all over with this.
----------------------------------------------------
9/27/17, 4:30 PM from Pat
No way.
----------------------------------------------------
9/27/17, 4:31 PM from Pat
But usually the first sign is confusion or sudden malaise
----------------------------------------------------
9/27/17, 4:33 PM to Pat (from Howard)
My research shows C. Diff. people can be treated for UTI using gentamicin
injections which do not wipe out
----------------------------------------------------
9/27/17, 4:33 PM to Pat (from Howard)
intestinal tract systems
----------------------------------------------------
9/27/17, 4:33 PM from Pat
Oh. good thing to know
----------------------------------------------------
9/27/17, 4:36 PM to Pat (from Howard)
Yeah. Now I just need to make sure the current doctor in charge knows that
without offending him if it actually is a UTI. Without catheter we would not
have seen this because she would be going in a diaper.
----------------------------------------------------
9/27/17, 4:38 PM from Pat
Gent is hard on kidneys and hearing and balance. so they may hesitate
----------------------------------------------------
9/27/17, 4:39 PM from Pat
But was the urine actually white milky?
----------------------------------------------------
9/27/17, 4:44 PM from Pat
I havent seen that
----------------------------------------------------
9/27/17, 4:44 PM to Pat (from Howard)
Thanks. Good to know. Damn.
Yes. Looked like milk in the catheter tube. There were three catheters in 12
hours. First didn't work. Second inserted at midnight or so but not secured so
it popped out when I got her on bedside pot this morning. She did manage to
avoid soiling diaper for the first time. How she was able to expel the balloon
is beyond me.
----------------------------------------------------
9/27/17, 4:46 PM to Pat (from Howard)
http://clinchem.aaccjnls.org/content/57/5/783
----------------------------------------------------
9/27/17, 4:47 PM to Pat (from Howard)
Looked like that.
----------------------------------------------------
9/27/17, 4:57 PM from Pat
Oh my. chylo? lymph
----------------------------------------------------
9/27/17, 4:58 PM to Pat (from Howard)
Hope there is some other possibility.
----------------------------------------------------
9/27/17, 5:00 PM from Pat
Oh im sure the is a million others. and it might disappear as fast as it
appeared.
----------------------------------------------------
9/27/17, 5:00 PM from Pat
The filiariasis you can rule out.
----------------------------------------------------
9/27/17, 5:07 PM to Pat (from Howard)
Nurse was not willing to say it was an infection. The 24 hour urine collection
is for dialysis doctor to determine adequacy. Nurse did not want to mess that up
by removing a sample. Hope they will do a test after the 24 hour collection is
complete.
I called dialysis people to see if they still wanted to proceed with tomorrow's
appointment and they said yes. Whatever they do with urine apparently will not
be affected. Maybe they just measure how much there is to judge kidney
operation.
----------------------------------------------------
9/27/17, 5:09 PM from Pat
If Susan is not confused or changed, probably not infection
----------------------------------------------------
9/27/17, 5:10 PM to Pat (from Howard)
Think she was rational today.
----------------------------------------------------
9/27/17, 5:10 PM to Pat (from Howard)
How do you get milky white stuff with no infection?
----------------------------------------------------
9/27/17, 5:12 PM from Pat
I dont really know ...
----------------------------------------------------
9/27/17, 5:13 PM to Pat (from Howard)
Well I will try to rest tonight and hope a miracle happens. 🙂💕
----------------------------------------------------
9/27/17, 5:14 PM from Pat
Me too.
----------------------------------------------------
9/27/17, 5:15 PM to Pat (from Howard)
Thanks. Helps a lot to talk with you about this stuff. 🙂💕
----------------------------------------------------
9/28/17, 7:48 AM to Pat (from Howard)
Urine collection bag contains clear urine over a very thin layer of white stuff
that settled out. Wonder if catheter contained something before insertion.
She is coherent and eating breakfast. No diarrhea last night ...
----------------------------------------------------
9/28/17, 7:53 AM from Pat
No catheter would not contain anything. but like i said.. this could just clear
up.
----------------------------------------------------
9/28/17, 8:01 AM from Pat
Lymph?
----------------------------------------------------
9/28/17, 8:13 AM to Pat (from Howard)
Weird.
What about lymph?
🙂💕
----------------------------------------------------
9/28/17, 8:14 AM from Pat
Chylomicrons? search wikipedia ... .
----------------------------------------------------
9/28/17, 8:15 AM to Pat (from Howard)
Ok.
----------------------------------------------------
9/28/17, 8:56 AM from Pat
I think this can clear up. not sure exactly. its just a possibility but im not a
dr. 🙄
Chyle is lymphatic fluid that contains emulsified fats (chylomicrons). Chyle in
the urine (chyluria) is the result of obstruction of lymph flow and rupture of
lymphatic vessels into the renal tubules. Chyluria, also called galacturia,
imparts a milky appearance to urine.
CSU - Clinical: Chyluria Screen - Mayo Medical Laboratories
----------------------------------------------------
9/28/17, 2:55 PM from Pat
So ... if the white stuff is gone, u probably wont ever know the cause.
How was/is Susan today? did they get the 24 hour urine?
----------------------------------------------------
9/28/17, 4:28 PM to Pat (from Howard)
24 hour collected ok. Had to cut wedding ring off due to swelling. Kidney people
thought compression bandages were not good generally for dialysis people but
they didn't want to override rehab people. So I took them off. Hope we don't get
in trouble. If asked I'll say I don't know where they went. Urine has looked ok
since. Kidney people decided to do UA based on my worrying I guess. The milky
stuff was pretty concerning to me but maybe routine for others. Don't know when
to keep my mouth shut I guess.
----------------------------------------------------
9/28/17, 4:30 PM from Pat
No you are doing the right things!! a ua is a good idea. you are the best
advocate!!
----------------------------------------------------
9/28/17, 4:32 PM to Pat (from Howard)
Thanks. I don't want them to kick us out though. Thanks much for the vote of
confidence. I usually err on the side of keeping quiet.
----------------------------------------------------
9/30/17, 6:42 AM from Pat
How are you and Susan today?
----------------------------------------------------
9/30/17, 6:43 AM to Pat (from Howard)
Loading dialysis supplies then I will drive to where she is.
----------------------------------------------------
9/30/17, 6:43 AM from Pat
Oh! Ok.
----------------------------------------------------
9/30/17, 8:14 AM to Pat (from Howard)
Good. Susan is eating. Eating well. Gained 8 pounds supposedly in last couple of
weeks. They still have her on megace to increase appetite. Arms swollen to about
double size so might all be fluid retention? Ultrasound yesterday showed no
blood clots so that was good news. What causes arm swelling?
----------------------------------------------------
9/30/17, 8:17 AM from Pat
Maybe retention or lymph? Probably just retention if equal bilaterally. (e.g.,
both arms about equally puffy.)
----------------------------------------------------
9/30/17, 8:20 AM to Pat (from Howard)
Left is more. Had to cut her ring off yesterday.
----------------------------------------------------
9/30/17, 8:23 AM from Pat
We see this quite a lot. We advise elevating arm on pillows. To see if that
helps.
----------------------------------------------------
9/30/17, 8:25 AM to Pat (from Howard)
That was advised here. Hard to keep her arm on the pillow. 🙂
----------------------------------------------------
9/30/17, 8:29 AM from Pat
Then we send rn if other symptoms or worsening (pain in limb, sob shortness
breath.etc) And notify Dr. Usually if no other symptoms, dr says "hmm. Ok. Thank
you.".
----------------------------------------------------
9/30/17, 8:30 AM to Pat (from Howard)
Probably at the hmmm stage. 🙂
----------------------------------------------------
9/30/17, 8:31 AM to Pat (from Howard)
Ankles seem ok.
----------------------------------------------------
9/30/17, 8:33 AM to Pat (from Howard)
She just now says she has shoulder pain as of today but had not mentioned it to
anyone yet.
----------------------------------------------------
9/30/17, 8:35 AM from Pat
I'd just keep an eye on swollen limb to make sure there is good perfusion.. good
color, feeling in fingers, pulse etc. We use little Doppler to verify pulse if
it is difficult to find.
Which shoulder
----------------------------------------------------
9/30/17, 9:23 AM to Pat (from Howard)
Left shoulder and some pain left side halfway down. I have her in wheelchair
outside right now.
----------------------------------------------------
9/30/17, 9:26 AM from Pat
Oh she is a beautiful sight!!! 💓💓
----------------------------------------------------
9/30/17, 9:35 AM from Pat
And you are a really great life partner - husband
----------------------------------------------------
10/2/17, 10:06 AM to Pat (from Howard)
Thanks. I am trying to continue other things but it is difficult. But you know I
am a hermit at heart. 🙂. When younger I thought ideal place to live would be a
one square mile of Oregon forest with helicopter-only access. Did not trust
people much.
----------------------------------------------------
10/2/17, 10:08 AM from Pat
Haha! Wow I guess not! I can't blame you though.
I'm so glad you gave other people a chance.
----------------------------------------------------
10/2/17, 10:12 AM to Pat (from Howard)
Yeah. Too many “Lord of the Flies” experiences as a kid. I am one of the few who
could understand “Columbine”.
----------------------------------------------------
10/2/17, 10:13 AM from Pat
Wow. Fortunately you turned out good.
----------------------------------------------------
10/2/17, 10:25 AM to Pat (from Howard)
Anyway, Susan’s recent “outputs” have been well-formed and infrequent last few
days. She is still very weak. Left shoulder and side pain is not helping.
Currently in wheelchair working with PT. Ultrasound did not show any blood
clots. Lots of arm swelling. I have been doing massage of her left arm and
swelling is reduced somewhat. Band that was tight and that I cut off couple of
days ago now shows that there would now be half inch of clearance were it still
on her.
----------------------------------------------------
10/2/17, 10:51 AM from Pat
Ok. Good!
----------------------------------------------------
10/3/17, 4:52 PM from Pat
I wonder what left shoulder and side pain is. Hopefully it will disappear.
----------------------------------------------------
10/3/17, 4:53 PM to Pat (from Howard)
Think now it is muscles and tendons. They have ordered a pain patch.
----------------------------------------------------
10/3/17, 4:54 PM from Pat
Oh pain patch is a good idea.
----------------------------------------------------
10/3/17, 5:07 PM to Pat (from Howard)
Yeah I hope. 🙂💕
----------------------------------------------------
10/3/17, 5:07 PM from Pat
💓😘
----------------------------------------------------
10/6/17, 4:04 PM from Pat
Anything new?
We got to much rain again last night. But it is hopefully going to dry up some
tomorrow.
💓
----------------------------------------------------
10/6/17, 4:17 PM to Pat (from Howard)
Maybe sciatica. Maybe UTI. Probably sciatica. They Don’t want to do antibiotics.
Although they did find a couple of items in urinalysis. Don’t want to start up
C. Diff. again. Trade offs, trade offs. E. Coli was one of the items.
Pain increases greatly when she moves so I think it is back problems. Dr thinks
so too. Did talk with him on phone today and that greatly helped my trust level.
I was very close to having her returned to hospital. The doctor is on the staff
of Banner Desert where i would have had her sent. He also works with the doctors
that did the fecal transplants so I think I trust his judgment.
----------------------------------------------------
10/6/17, 4:24 PM from Pat
E-coli usually means sample likely contaminated. That's not unusual .It is
unusual if obtained via catheter though.
----------------------------------------------------
10/6/17, 4:25 PM to Pat (from Howard)
It was from third catheter in 12 hours. Klutzes. 🙂💕
----------------------------------------------------
10/6/17, 4:25 PM from Pat
Whoa! How does that happen?
----------------------------------------------------
10/6/17, 4:27 PM to Pat (from Howard)
Klutzes. Second popped out when she stood to get her into wheel chair. Balloon
was inflated.
----------------------------------------------------
10/6/17, 4:28 PM from Pat
But it doesn't pop out unless pulled a bit
----------------------------------------------------
10/6/17, 4:29 PM from Pat
Why does she have a catheter?
----------------------------------------------------
10/6/17, 4:29 PM to Pat (from Howard)
Might have been pulled. Didn’t seem obvious.
----------------------------------------------------
10/6/17, 4:30 PM to Pat (from Howard)
Did have catheter. For dialysis adequacy test 24 hr collection.
----------------------------------------------------
10/6/17, 4:30 PM from Pat
They are a cause of uti
----------------------------------------------------
10/6/17, 4:30 PM to Pat (from Howard)
Yep
----------------------------------------------------
10/6/17, 4:32 PM from Pat
Is the pain still in shoulders?
----------------------------------------------------
10/6/17, 4:33 PM to Pat (from Howard)
No. Arms still swollen though. Upper back then lower back now.
----------------------------------------------------
10/6/17, 4:35 PM from Pat
Oh
----------------------------------------------------
10/6/17, 4:35 PM from Pat
Fentanyl
----------------------------------------------------
10/6/17, 4:36 PM to Pat (from Howard)
Fentanyl cause or cure? She is off that now
----------------------------------------------------
10/6/17, 4:37 PM from Pat
No just good pain control.
Morphine good too
----------------------------------------------------
10/6/17, 4:38 PM to Pat (from Howard)
Thanks. Will keep in mind.
----------------------------------------------------
10/6/17, 4:39 PM from Pat
Probably won't need it.
----------------------------------------------------
10/6/17, 4:40 PM from Pat
But how are they controlling her pain then?
----------------------------------------------------
10/6/17, 4:40 PM to Pat (from Howard)
Pain has made pt more difficult. Lidocaine Pain patches and Tylenol
----------------------------------------------------
10/6/17, 4:42 PM from Pat
Does that help? When you mentioned patches a couple days ago , I just assumed
Fentanyl.
----------------------------------------------------
10/6/17, 4:42 PM to Pat (from Howard)
Seems to help.
----------------------------------------------------
10/6/17, 4:42 PM from Pat
Oh good
Driving to observatory in New Mexico today. Short trip for “star party”. I need
to stay in the loop. Return Sunday. Might stop by and see Bill Davis In Tucson
on Sunday.
🙂💕
----------------------------------------------------
10/18/17, 10:20 AM to Pat (from Howard)
Susan’s back pain diminished greatly after switching dialysis to a higher levels
of glucose which has reduced the swelling in her arms and fluid retention. Seems
strange to me that the back pain could be correlated with the fluid retention.
But the MRI scan showed no backbone problems. Maybe fluid retention somehow
affects the back muscles and pulling and whatever.?
----------------------------------------------------
10/18/17, 12:47 PM from Pat
I have heard dehydration can contribute to back pain. But Susan is very
complicated ... Fluid levels, electrolytes, glucose... I think no one will
really know the cause of the pain for sure. The best thing is that it has
diminished!!!
----------------------------------------------------
10/18/17, 1:32 PM from Pat
Susan is totally amazing. Wow!!
----------------------------------------------------
10/21/17, 10:26 AM to Pat (from Howard)
This is our life at the moment though. Not likely to make any trips currently.
----------------------------------------------------
10/21/17, 10:27 AM from Pat
Aww! She looks good though!! 💓💓💓
----------------------------------------------------
10/21/17, 10:39 AM to Pat (from Howard)
Thanks! Have conference Monday with “social services” here to figure out future.
Think I will try to get her home at some point and hire help as needed. I think
they are thinking assisted living but I would like to defer that for now.
Assisted living at Bella Vista is $4100 per month. I would have to move and also
blow through all assets we have. Could cover two or three years then I don’t
know what we’d do. Current two bedroom place we are living at is $4200 per
month. One bedroom is $2700. That is still significantly above our income. Doing
lots of research ...
----------------------------------------------------
10/21/17, 3:45 PM from Pat
It is really a tough thing to face. It is really sad that extended care is so
expensive. We see a lot of people facing this.
----------------------------------------------------
10/24/17, 5:35 PM from Pat
How did your MTG with social services go?
----------------------------------------------------
10/24/17, 5:38 PM to Pat (from Howard)
Ok. We are both home and she is with “complete hospice care”. Also using
“preferred care” to help day to day.
----------------------------------------------------
10/24/17, 6:30 PM from Pat
Oh!
Wow that was fast.
----------------------------------------------------
10/24/17, 6:32 PM from Pat
How is it going?
----------------------------------------------------
10/24/17, 7:47 PM to Pat (from Howard)
Ok. We went to both dinner and lunch with her in wheelchair.
----------------------------------------------------
10/25/17, 6:35 AM from Pat
Oh thank you! Very nice to see her looking so good ... And finally home!! 💓💓
----------------------------------------------------
10/25/17, 6:38 AM to Pat (from Howard)
But back severe back pain last night and continuing. I cannot roll her to change
wet diaper. Hopefully Preferred Care person will be here at 0700 and
Help.
----------------------------------------------------
10/25/17, 6:38 AM to Pat (from Howard)
Damn.
----------------------------------------------------
10/25/17, 10:51 AM from Pat
I know you are super busy... But text status or call when you have time. I hope
hospice has come and resolved a few issues! I think they will.
----------------------------------------------------
10/25/17, 10:55 AM to Pat (from Howard)
They are installing new bed now. The hospice nurse and the preferred care people
got her into wheelchair. Shelly and Brian are here and brought lunch.
Lidocaine pain patches will be provided. Will study pain meds that at ok with
kidney dialysis.
----------------------------------------------------
10/25/17, 10:57 AM from Pat
Do you feel better about things now?
----------------------------------------------------
10/25/17, 11:00 AM to Pat (from Howard)
Semi. Susan was asked by nurse about back pain level and said 9 out of 10.
Shelly, Brian and I agreed that would be 12 if it were anyone else.
----------------------------------------------------
10/25/17, 11:18 AM from Pat
Wow..I believe it. She is tough. I'm sure hospice will help a lot with her
comfort.
----------------------------------------------------
10/25/17, 11:24 AM to Pat (from Howard)
Thanks. I have to buy lidocaine pain patches. No problem. Nurse will provide
some sort of pain pill.
----------------------------------------------------
10/25/17, 11:54 AM from Pat
Yeah I think lidoderm is only covered for post herpetic pain
----------------------------------------------------
10/25/17, 11:55 AM to Pat (from Howard)
Rehab place was providing it or I wouldn’t even know of it.
----------------------------------------------------
10/25/17, 11:56 AM to Pat (from Howard)
Ordered a bunch on amazon. Will go to drugstore later to get some to cover
delivery time gap.
----------------------------------------------------
10/25/17, 11:57 AM from Pat
That sounds good
----------------------------------------------------
10/25/17, 6:15 PM to Pat (from Howard)
I am still working other stuff in. Good astronomy weather tonight. After
figuring out what to try to shoot it takes less than 5 minutes to set up a
script to take images all night long. I don’t have to do anything until morning.
🙂💕
----------------------------------------------------
10/25/17, 6:17 PM from Pat
How fun! I’m very glad you are keeping up with your other interests and
activities!! Highly recommended!
----------------------------------------------------
10/25/17, 6:20 PM to Pat (from Howard)
Damn. Lunch every Thursday with ex Motorola colleagues which I will go to if I
figure out how to manage Susan’s lunch.
----------------------------------------------------
10/25/17, 6:21 PM from Pat
There has to be a way
----------------------------------------------------
10/25/17, 6:22 PM to Pat (from Howard)
Yes. I think the preferred care people can get lunch to her.
----------------------------------------------------
10/25/17, 6:24 PM from Pat
Great
----------------------------------------------------
10/25/17, 6:26 PM to Pat (from Howard)
Thanks! Hard to not feel obligated to watch over her every minute.
----------------------------------------------------
10/25/17, 6:27 PM from Pat
You sure are good in a crisis or a “sudden fubar”.
----------------------------------------------------
10/25/17, 6:27 PM from Pat
I wanted a husband like you!🙄
----------------------------------------------------
10/25/17, 6:29 PM to Pat (from Howard)
If you ever looked up INTJ (me) on Myers-Briggs or Kiersey you know how I
behave.
I wasn’t just a little bit INTJ, I am intensely INTJ. But I have never felt
confident about handling a crisis situation.
----------------------------------------------------
10/25/17, 6:34 PM from Pat
Well you seem like the crisis may blow you away, and then you immediately get
busy handling it.
----------------------------------------------------
10/25/17, 7:04 PM to Pat (from Howard)
I need to rest. Hopefully tonight will be better. 🙂💕
----------------------------------------------------
10/25/17, 7:05 PM from Pat
I hope so! Me too. Past bedtime
----------------------------------------------------
10/26/17, 1:28 PM from Pat
Any less hectic today?
----------------------------------------------------
10/26/17, 1:32 PM to Pat (from Howard)
Yes. I got to sleep last night. She ate breakfast but was too tired for lunch.
Will see if we can get her in wheelchair and down for dinner. She might not want
to. A little less lucid today which is worrisome to me. Refused potassium pills
a moment ago. I am tired and going to try to nap. 🙂💕
Refused lunch and is refusing dinner.
----------------------------------------------------
10/26/17, 4:36 PM from Pat
Not unusual.
----------------------------------------------------
10/26/17, 4:41 PM to Pat (from Howard)
Slept all night and almost all of today. She usually wants tv on 24/7 but it is
off with no complaints. Are we near the end? Chaplain here this morning asked
her if she wanted to live and she said “definitely”. She also briefly mentioned
that she was tired of all of this. I cannot keep from crying.
----------------------------------------------------
10/26/17, 4:48 PM from Pat
It is usually impossible to predict the day or the hour.
I am so sorry. She could be better tomorrow. Or not.
----------------------------------------------------
10/26/17, 4:50 PM from Pat
If her breathing is good and hasn't changed and her heart rate isn't increasing
a lot or decreasing a lot, she might just be extra tired from all the recent
changes.
----------------------------------------------------
10/26/17, 5:00 PM from Pat
If they started any opioid it does this the first day or two
----------------------------------------------------
10/26/17, 5:18 PM to Pat (from Howard)
Vitals were ok. No opioids. Maybe just tired. Disturbing to me though.
----------------------------------------------------
10/26/17, 5:27 PM from Pat
Move to a new location and new caregivers, bed change, etc can tire a person.
----------------------------------------------------
10/26/17, 5:43 PM to Pat (from Howard)
Yeah all that happened in last two days. New bed. New nurse. New chaplain.
Shelly and Brian brought lunch on day bed was delivered. Was that Wednesday? I
am losing track. 🙂💕
----------------------------------------------------
10/26/17, 6:14 PM from Pat
Yes Wednesday. You both should be tired!
----------------------------------------------------
10/26/17, 6:15 PM to Pat (from Howard)
Yeah. I have been really tired. Maybe had greater effect on Susan.
----------------------------------------------------
10/26/17, 6:17 PM from Pat
It usually requires some extra sleep for patient and spouse!
----------------------------------------------------
10/27/17, 8:55 AM to Pat (from Howard)
She has refused lunch, Dinner, and breakfast this morning. Is also refusing
water and her pills. I asked her if she wanted to continue dialysis tonight and
she said yes.
----------------------------------------------------
10/27/17, 9:00 AM from Pat
Still not really unusual.
----------------------------------------------------
10/27/17, 9:13 AM from Pat
But how does she look? Color? Pain? Breathing?
----------------------------------------------------
10/27/17, 9:15 AM to Pat (from Howard)
Ok otherwise. Just now asked to sit up and drink Dr Pepper. One out of two
potassium pills managed. Refusing all others though like lyrothyrinine.
----------------------------------------------------
10/27/17, 9:18 AM from Pat
Is that thyroid med? No big deal
----------------------------------------------------
10/27/17, 9:18 AM to Pat (from Howard)
Yes.
----------------------------------------------------
10/27/17, 9:18 AM from Pat
Refusing meds is ok. As you know
----------------------------------------------------
10/27/17, 9:20 AM to Pat (from Howard)
No I sort of expected meds to continue. So I am puzzled. If she really wanted to
quit living she wouldn’t still want dialysis to continue?
----------------------------------------------------
10/27/17, 9:21 AM to Pat (from Howard)
Or is that just to make me happy. Also is looking forward to seeing
granddaughter Caitlin.
----------------------------------------------------
10/27/17, 9:36 AM from Pat
I think she wants to continue, yes.
----------------------------------------------------
10/27/17, 9:36 AM from Pat
Caitlin and Shelly are best medicine I believe
----------------------------------------------------
10/27/17, 9:39 AM from Pat
Everyone tends to start refusing meds off and on. K is a tough medicine to
tolerate. Thyroid meds are usually not that serious to skip.
----------------------------------------------------
10/27/17, 9:41 AM to Pat (from Howard)
Thanks. There is a list of 14 pills that she is supposed to take.
----------------------------------------------------
10/27/17, 9:43 AM from Pat
Hospice didn't discontinue any?
----------------------------------------------------
10/27/17, 9:44 AM to Pat (from Howard)
No. They have the list
----------------------------------------------------
10/27/17, 9:44 AM from Pat
It depends on the hospice diagnosis
----------------------------------------------------
10/27/17, 9:46 AM to Pat (from Howard)
I called hospice nurse 2 hours ago. Left message to call me. No response.
----------------------------------------------------
10/27/17, 9:46 AM from Pat
Hospice covers anything related to the hospice dx and most pain and comfort meds
----------------------------------------------------
10/27/17, 2:18 PM from Pat
Did you ever get a response to your call to hospice?
----------------------------------------------------
10/27/17, 2:19 PM to Pat (from Howard)
Yeah. About 12:30.
----------------------------------------------------
10/27/17, 2:21 PM from Pat
Did they answer your questions?
----------------------------------------------------
10/27/17, 2:22 PM to Pat (from Howard)
Sort of. Thinks Susan is “waffling” between deciding to live or die.
----------------------------------------------------
10/27/17, 2:22 PM from Pat
Huh?
----------------------------------------------------
10/27/17, 2:22 PM from Pat
Hospicesaid that?
----------------------------------------------------
10/27/17, 2:25 PM to Pat (from Howard)
Yep. Tough nurse. Concluded that presumably from wanting to continue dialysis
while refusing food, drink, and pills. Logical perhaps.
----------------------------------------------------
10/27/17, 2:28 PM from Pat
Hmm. Maybe. I tend to think it's not that complex. Refusing some oral stuff is
pretty common.
----------------------------------------------------
10/27/17, 2:44 PM to Pat (from Howard)
Ok.
----------------------------------------------------
10/27/17, 6:10 PM to Pat (from Howard)
She keeps summoning me this evening for bed adjustments. 🙂might be a long
night. 🙂. I’m getting tired.
----------------------------------------------------
10/27/17, 7:28 PM from Pat
Ooooh. I hope she and you get some rest
----------------------------------------------------
10/27/17, 7:28 PM to Pat (from Howard)
Finally sleeping.
----------------------------------------------------
10/27/17, 7:29 PM from Pat
Oh good
----------------------------------------------------
10/28/17, 8:10 AM from Pat
Ok there this morning??
----------------------------------------------------
10/28/17, 8:13 AM to Pat (from Howard)
This morning she’s asking for half a waffle and some bacon and says that she
would like to be up in the wheelchair after breakfast. Yesterday all she had was
a bottle of boost. I still don’t know what to predict.
----------------------------------------------------
10/28/17, 8:16 AM from Pat
That sounds great this morning though!! Be happy for the good days and expect
ups and downs. I know that sounds trite, but it is truly impossible to predict.
----------------------------------------------------
10/28/17, 8:25 AM from Pat
Oh and ... If grand kids are making "urgent" visits, encourage it. They should
come sooner rather than later.
Families and friends are often devastated if they wait too long. I think most
folks expect some predictability. Nurses frequently are asked "when should
family fly in". Sooner rather than later imo.
----------------------------------------------------
10/28/17, 8:26 AM to Pat (from Howard)
Thanks. Caitlin was originally thinking 1 December but now is coming this
Friday.
----------------------------------------------------
10/28/17, 8:28 AM from Pat
That's good.
----------------------------------------------------
10/30/17, 1:55 PM from Pat
How are you and Susan today?
----------------------------------------------------
10/30/17, 2:14 PM to Pat (from Howard)
She ate 4 or 5 strips of bacon about 1.5 eggs scrambled. Chose not to be in
wheelchair today. Sleeping now. She was awake lots of last night. Ok relatively.
🙂💕
----------------------------------------------------
10/30/17, 2:17 PM from Pat
That's a good appetite. She must still be taking the appetite stimulant. ?
🎃💓💓
----------------------------------------------------
10/30/17, 2:17 PM to Pat (from Howard)
No.
----------------------------------------------------
10/30/17, 2:18 PM from Pat
Wow! Excellent then
----------------------------------------------------
10/30/17, 2:19 PM to Pat (from Howard)
I keep swinging from crying to hopeful. Exhausting. 🙂💕
----------------------------------------------------
10/30/17, 2:21 PM from Pat
That's a hard way to live! 😢
----------------------------------------------------
10/30/17, 2:21 PM to Pat (from Howard)
Yep.
----------------------------------------------------
11/3/17, 6:09 AM from Pat
Susan sure looks great!
----------------------------------------------------
11/4/17, 7:46 AM from Pat
Susan is doing a little better every day!
----------------------------------------------------
11/4/17, 7:47 AM to Pat (from Howard)
Yes. I am swinging more to hope than dispair currently.
----------------------------------------------------
11/5/17, 11:50 AM to Pat (from Howard)
Yes happy! Seems to be getting stronger. Think she is eating better and is now
taking potassium pills and thyroid pills. Wanted to get up this morning and try
to get to toilet. She was able to transfer to wheelchair without me having to do
all the lifting. Got to toilet but she’d already gone in diaper so decided to
get back to bed. That was harder but I managed with help from her. Then I
changed her.
Ate half a waffle and 6 strips of bacon and three blackberries, 3 raspberries
and two large strawberries.
Before 2 June she was only doing one bottle of boost for breakfast.
So I am hopeful again.
----------------------------------------------------
11/5/17, 11:52 AM from Pat
I think you have reason to be hopeful. I'm sure hopeful. She is amazing ... and
tough!
----------------------------------------------------
11/5/17, 11:52 AM to Pat (from Howard)
🙂💕
----------------------------------------------------
11/6/17, 9:10 AM to Pat (from Howard)
No dinner last night. Then threw up some time during the night. Took potassium
pills this morning. Ate a bit of waffle and a bacon strip then threw up. Then
asked for half a glass of milk which seems to be staying down. Called hospice
nurse for advice half an hour ago. Supposedly will call me back some day.
----------------------------------------------------
11/6/17, 9:19 AM to Pat (from Howard)
Well, that didn’t stay down long.
----------------------------------------------------
11/6/17, 9:19 AM to Pat (from Howard)
Damn!
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11/6/17, 3:51 PM from Pat
Maybe anti nausea medications would help??
----------------------------------------------------
11/6/17, 3:55 PM to Pat (from Howard)
Possibly. She later did hold a Boost down. I am thinking the berries were the
problem. Don’t know if we have any.
----------------------------------------------------
11/6/17, 4:03 PM from Pat
Bacon would not normally be recommended ... But that may not be contributing to
her vomiting.
----------------------------------------------------
11/6/17, 4:04 PM to Pat (from Howard)
Understand but she was handling it well for days.
----------------------------------------------------
11/6/17, 4:04 PM from Pat
Right. .. regular bowel movements?
----------------------------------------------------
11/6/17, 4:06 PM to Pat (from Howard)
It is what she wanted and I was glad to see her eating ANYTHING. Don’t know
about “regular” but they were able to get her on the pot this morning and she
did manage #2.
----------------------------------------------------
11/6/17, 4:07 PM to Pat (from Howard)
Just trying now to figure out what to try if she is hungry tonight.
----------------------------------------------------
11/6/17, 4:10 PM from Pat
Oh that's good on pot this morning.
Hospice would normally provide Anti nausea med Rx.
Depending on cause.
Ativan or haloperidol if nausea and vomiting continues.
Will she drink broth? If not you probably will have to give her whatever she
will eat, like you say.
----------------------------------------------------
11/6/17, 4:11 PM to Pat (from Howard)
Ok. Will see what she thinks when she wakes up.
----------------------------------------------------
11/6/17, 4:12 PM from Pat
You sure are stepping up to the job.
----------------------------------------------------
11/6/17, 4:12 PM to Pat (from Howard)
I try.
----------------------------------------------------
11/7/17, 10:55 AM from Pat
How is everything today??
----------------------------------------------------
11/7/17, 10:57 AM to Pat (from Howard)
Ate some frosted rice crispies with bit of milk. Some potato chips a moment ago
and the half bottle of boost. The other half she spilled on herself.
----------------------------------------------------
11/7/17, 11:45 AM from Pat
Aww! Well that's a pretty good appetite.
----------------------------------------------------
11/8/17, 1:03 PM from Pat
Same question! How are things?
Don't mean to bug you every day ... Answer only when you have time.
----------------------------------------------------
11/8/17, 1:06 PM to Pat (from Howard)
Has not thrown up any more. Eating a little but not much. Taking pills. Will see
what she wants to eat this morning.
Ate about 1/4 waffle, 2 strips bacon, Dr Pepper. I am holding my breath. 🙂.
Think it will be ok.
Those messages were from earlier today. She is sleeping.
I have had better birthdays.
----------------------------------------------------
11/8/17, 1:07 PM from Pat
Oh yes! HAPPY BD.. I hope it's a good day.
----------------------------------------------------
11/8/17, 1:17 PM from Pat
Yes I know you've had better birthday s, but things at least sound hopeful now.
🙂💓
----------------------------------------------------
11/8/17, 2:19 PM to Pat (from Howard)
So far. She has not been very lucid today. Asked when she was going to surgery a
moment ago.
I think she is on gradual irreversible decline.
----------------------------------------------------
11/8/17, 2:25 PM from Pat
Hmmm I don't know. A lot of things can cause confusion. UTI for one.
----------------------------------------------------
11/8/17, 2:26 PM from Pat
Urinary tract infection
----------------------------------------------------
11/8/17, 2:26 PM to Pat (from Howard)
Don’t dare use antibiotics.
----------------------------------------------------
11/8/17, 2:27 PM from Pat
Maybe not.
----------------------------------------------------
11/8/17, 2:27 PM to Pat (from Howard)
Any way to treat via infusion through a catheter?
----------------------------------------------------
11/8/17, 2:29 PM from Pat
Not that I know of because I think you are treating a systemic infection
----------------------------------------------------
11/8/17, 2:29 PM from Pat
But I think some abx might be relatively safe...?? Not sure
----------------------------------------------------
11/8/17, 2:30 PM to Pat (from Howard)
C. Diff. return would be most catastrophic.
----------------------------------------------------
11/8/17, 3:00 PM to Pat (from Howard)
https://academic.oup.com/jac/article-abstract/72/2/522/2638327?redirectedFrom=fulltext
----------------------------------------------------
11/8/17, 3:14 PM from Pat
Would want a urinalyses with culture and sensitivity first , I would think. She
may not have a uti, or if she does have a uti, it may not be sensitive to
aminoglycosides.
----------------------------------------------------
11/8/17, 3:20 PM to Pat (from Howard)
Yep. How do you get sample from a diaper? 🙂. She doesn’t have control. Cannot
get up. At rehab place they placed 3 catheters in 12 hours. Klutzes? Required
for 24 hour kidney dr urine collection.
----------------------------------------------------
11/8/17, 3:23 PM from Pat
You do a simple "mini Cath" in and out. Requires sterile technique as does any
urinary Cath, and it is inserted for collection then out. Very common for single
specimen.
C and S takes about 48 hrs. Dr would want some indications (signs / symptoms of
uti) before ordering because they won't run one without some indications, and
then if it is negative, they will not run it again as readily for a while.
Recurrent uti could be a continuing problem.. immune system is compromised in
elderly, bed bound, ESRD, CA ...
----------------------------------------------------
11/8/17, 3:24 PM from Pat
Hmm I don't know why the Cath came out in 24 hours.. Almost always as
accidentally pulled out if balloon still inflated.
----------------------------------------------------
11/8/17, 3:25 PM to Pat (from Howard)
Last white cell count was ok Before she left rehab place.
----------------------------------------------------
11/8/17, 3:25 PM from Pat
Patients sometimes pull them out. Staff shouldn't.
----------------------------------------------------
11/8/17, 3:27 PM to Pat (from Howard)
Three insertions in 12 hours was disturbing to me. If she has UTI that would be
my guess regarding cause.
----------------------------------------------------
11/8/17, 3:37 PM from Pat
That sure is a risk. I taught nursing in clinicals and it turns out very few
nurses get the opportunity to do even one Cath in many schools. I had 6 yrs of
RN school and I got to do ONE.
Fortunately since I was an aide for eons before going to RN school, I was the
Foley tech for pre op patients. I have done literally hundreds. But not all RNs
have experience. Hospice RNs are usually very very experienced at everything you
would need at home, so I would not worry about them. Hospice look for lots of
independent home care type of experience.
----------------------------------------------------
11/8/17, 4:26 PM to Pat (from Howard)
Thanks! Now I have to again ponder life/death decisions. 🙂💕
----------------------------------------------------
11/8/17, 5:12 PM to Pat (from Howard)
I just asked her if she remembered when Scott was coming out here. She said 17th
which is true. Does that rule out UTI? Doesn’t want to eat. Last was breakfast.
Has had some Dr Pepper and took thyroid, magnesium, and potassium pills a moment
ago. Very sleepy all day.
----------------------------------------------------
11/9/17, 11:25 AM to Pat (from Howard)
Hospice nurse thinks UTI. Temp was slightly above 100. Prescribing Cipro. I will
be holding my breath regarding C. Diff. recurrence. But did discuss that at
length. Trade-offs, trade-offs.
----------------------------------------------------
11/9/17, 2:51 PM from Pat
I think you made a good decision
----------------------------------------------------
11/9/17, 3:04 PM to Pat (from Howard)
Thanks! These things are always agonizing for me. Good to have your support!
----------------------------------------------------
11/11/17, 10:33 AM from Pat
How are you and Susan today?
----------------------------------------------------
11/11/17, 10:38 AM to Pat (from Howard)
Shelly is with Susan. I am at wickenburg Bluegrass festival. Be home by 4. Susan
not eating yesterday. Not hungry this morning.
----------------------------------------------------
11/12/17, 4:02 PM from Pat
How are things?
----------------------------------------------------
11/12/17, 4:04 PM to Pat (from Howard)
She drank 2/3s of small chocolate Dairy Queen milkshake half an hour ago.
----------------------------------------------------
11/12/17, 4:04 PM from Pat
That's good!
----------------------------------------------------
11/12/17, 4:07 PM to Pat (from Howard)
Yeah. I hadn’t thought of it but a friend here in the building suggested it.
Twenty years ago that’s how I was keeping her alive.
----------------------------------------------------
11/13/17, 4:08 PM to Pat (from Howard)
She’s amazingly eating a hamburger and French fries. Caretaker said she had a
good, normal bowel movement an hour ago while I was at chiropractor. It IS the
13th today. 🙂💕
----------------------------------------------------
11/13/17, 4:09 PM to Pat (from Howard)
Tolerating the Cipro well apparently.
----------------------------------------------------
11/13/17, 4:29 PM from Pat
Excellent!!😃
----------------------------------------------------
11/13/17, 4:30 PM to Pat (from Howard)
Yeah. Yesterday I thought she wouldn’t make it through today.
----------------------------------------------------
11/13/17, 4:31 PM from Pat
Whew! Shows how strong that lil lady IS!🤠
----------------------------------------------------
11/13/17, 4:37 PM to Pat (from Howard)
Yeah. If I put her head down and feet up she can grab bars while I push on her
feet and stiffened legs and get her higher up in the bed without having two
people pull her up with bed pad. Just discovered that would work yesterday.
----------------------------------------------------
11/13/17, 4:56 PM from Pat
That's cool. 🙂
----------------------------------------------------
11/13/17, 5:13 PM from Pat
Adapt and survive.
----------------------------------------------------
11/13/17, 5:15 PM to Pat (from Howard)
I’ve set up a camera so you can see Susan real-time if you wish.
184.188.174.34:1313
User ID: Guest
Password: Susan13
I am using it to make sure she doesn’t again try to get up and wind up on the
floor.
----------------------------------------------------
11/18/17, 7:34 PM from Pat
How's everything?
----------------------------------------------------
11/18/17, 7:36 PM to Pat (from Howard)
Could be better. Not eating. Increased confusion at times.
----------------------------------------------------
11/18/17, 7:36 PM from Pat
Oh darn.
----------------------------------------------------
11/18/17, 7:38 PM from Pat
Love you. 💓💓so sorry you and she are going through this.
----------------------------------------------------
11/21/17, 8:55 AM to Pat (from Howard)
How fast does liquid morphine take effect?
----------------------------------------------------
11/21/17, 8:56 AM to Pat (from Howard)
Using it for her headaches. She’s not eating or drinking. Nurse says dehydration
causes the headache.
----------------------------------------------------
11/21/17, 9:11 AM from Pat
Very fast.. 15 to 30 min
----------------------------------------------------
11/21/17, 9:13 AM to Pat (from Howard)
Thanks! Helps to know. Also administering lorazepam for twitchy legs.
----------------------------------------------------
11/21/17, 12:10 PM from Pat
Lorazepam is often used like that.
----------------------------------------------------
11/24/17, 10:58 AM from Pat
How is Susan? I've been working a lot this past week and through the weekend so
I didn't get to been ask. 😳
----------------------------------------------------
11/24/17, 12:08 PM to Pat (from Howard)
Close to the end. Blood pressure not measurable, weak heartbeat. Lucid pretty
much still. Wants me to hold her hand a lot.
This all has been the hardest thing I’ve ever had to go through.
She wants me to continue doing dialysis. They are telling me that prolongs
things a bit. Think we are within days or hours.
----------------------------------------------------
11/24/17, 12:09 PM from Pat
OMG.. .
----------------------------------------------------
11/24/17, 12:09 PM from Pat
I am sorry.
----------------------------------------------------
11/24/17, 12:12 PM from Pat
I think if she's asking to continue dialysis , do it. Peace of mind. May not
help but what can it hurt
----------------------------------------------------
11/24/17, 12:14 PM to Pat (from Howard)
I am. Would be hard for me to think I killed her early by not doing it.
----------------------------------------------------
11/24/17, 12:15 PM from Pat
Right
----------------------------------------------------
11/24/17, 12:49 PM from Pat
I am amazed she's that alert, but she wouldn't have it any other way.
----------------------------------------------------
11/24/17, 3:40 PM to Pat (from Howard)
Been solid sleep since noon breathing irregular.
----------------------------------------------------
11/24/17, 3:47 PM to Pat (from Howard)
Looking pretty pale.
----------------------------------------------------
11/25/17, 5:23 AM from Pat
Mornin'. She looks pretty alert this morning. 🙂
----------------------------------------------------
11/25/17, 5:27 AM to Pat (from Howard)
Not very lucid but knows I am here.
----------------------------------------------------
11/25/17, 5:28 AM from Pat
You are a good one.
----------------------------------------------------
11/25/17, 5:28 AM to Pat (from Howard)
Thanks. Have not slept much last night.
----------------------------------------------------
11/25/17, 5:29 AM from Pat
I bet not.
----------------------------------------------------
11/25/17, 5:30 AM to Pat (from Howard)
She just now reached her hand out to me to hold.
----------------------------------------------------
11/25/17, 5:30 AM from Pat
I saw that earlier ... Very sweet.
----------------------------------------------------
11/25/17, 5:33 AM to Pat (from Howard)
Wanted caladryl for itching. Could only say “here” but I knew what she wanted.
----------------------------------------------------
11/25/17, 5:34 AM from Pat
Yes you have that connection after doing this so long
----------------------------------------------------
11/25/17, 5:36 AM from Pat
And beiing together so long
----------------------------------------------------
11/25/17, 5:37 AM to Pat (from Howard)
This is the hardest thing I’ve ever had to do.
----------------------------------------------------
11/25/17, 5:37 AM from Pat
I'm sure of that
----------------------------------------------------
11/25/17, 3:19 PM from Pat
How are things?
----------------------------------------------------
11/25/17, 3:22 PM to Pat (from Howard)
Same. Dr. L, Susan’s personal physician is going to visit here. I will call you.
----------------------------------------------------
11/25/17, 4:47 PM from Pat
Thanks for calling me.. I always love talking with you.
----------------------------------------------------
11/26/17, 7:41 AM from Pat
What did Dr L say when she visited?
----------------------------------------------------
11/26/17, 7:50 AM to Pat (from Howard)
Put my mind at ease regarding discontinuing dialysis. So I don’t feel guilty.
Susan still moving around. Eyes sometimes open but not seeing. Unresponsive to
verbal things.
----------------------------------------------------
11/26/17, 7:51 AM from Pat
That's good.
----------------------------------------------------
11/26/17, 7:51 AM from Pat
I mean what the dr did
----------------------------------------------------
11/26/17, 7:52 AM to Pat (from Howard)
I gathered that.
----------------------------------------------------
11/26/17, 7:52 AM to Pat (from Howard)
Because at this point I’m ready.
----------------------------------------------------
11/26/17, 7:53 AM from Pat
Oh yes...
----------------------------------------------------
11/26/17, 7:53 AM to Pat (from Howard)
Maybe today. Double 13.
----------------------------------------------------
11/26/17, 7:53 AM from Pat
Healthy attitude.
Oh yes ..26
----------------------------------------------------
11/26/17, 7:54 AM to Pat (from Howard)
Anni and our band will be here at 11.
----------------------------------------------------
11/26/17, 7:54 AM from Pat
Hey that's good.
----------------------------------------------------
11/26/17, 7:55 AM from Pat
I love bands ... Especially love to watch practice sessions
----------------------------------------------------
11/26/17, 7:56 AM to Pat (from Howard)
We have practices on Sunday
----------------------------------------------------
11/26/17, 8:04 AM to Pat (from Howard)
Most of the bluegrass people within a hundred miles either got their start in
our home or jammed there.
----------------------------------------------------
11/26/17, 8:05 AM from Pat
Wow.. I didn't realize..
Guess I thought there were sessions all over the place
----------------------------------------------------
11/26/17, 8:06 AM to Pat (from Howard)
No. We were pretty much it.
----------------------------------------------------
11/26/17, 8:06 AM from Pat
Amazing ... And wonderful.
----------------------------------------------------
11/27/17, 10:46 AM from Pat
Any change?
----------------------------------------------------
11/27/17, 12:15 PM to Pat (from Howard)
Not much. Still breathing. Occasionally semi responsive to things said but not
much. Nurse thinks day or two maybe but no certainty.
----------------------------------------------------
11/29/17, 5:20 PM to Pat (from Howard)
Susan’s last breath was at 1:07 pm today. 😭💕
----------------------------------------------------
11/29/17, 5:20 PM from Pat
😢😢
----------------------------------------------------
11/29/17, 5:21 PM from Pat
Are you ok???
----------------------------------------------------
11/29/17, 5:23 PM to Pat (from Howard)
Yes. Somewhat relieved to not see her in the process of dying. Still crying
occasionally. But I will be ok.
----------------------------------------------------
11/29/17, 5:24 PM to Pat (from Howard)
Anni is here with me at the moment.
----------------------------------------------------
11/29/17, 5:25 PM from Pat
That is so nice Anni is there.
----------------------------------------------------
11/29/17, 5:26 PM to Pat (from Howard)
Yes. She will help me with memorials etc since she has had to do it for her
mother and husband.
----------------------------------------------------
11/29/17, 5:28 PM to Pat (from Howard)
Shelly was here and was with Susan when the last breath occurred. She is pretty
upset so left shortly thereafter.
----------------------------------------------------
11/29/17, 5:28 PM from Pat
Aww. Her mom.
----------------------------------------------------
11/29/17, 5:33 PM from Pat
When are services
----------------------------------------------------
11/29/17, 5:34 PM to Pat (from Howard)
Don’t know yet.
----------------------------------------------------
11/29/17, 5:34 PM from Pat
Ok
----------------------------------------------------
11/29/17, 5:42 PM from Pat
You'll let me know?
----------------------------------------------------
11/29/17, 5:42 PM to Pat (from Howard)
Yep.
----------------------------------------------------
11/29/17, 5:45 PM from Pat
Love you a lot.❤️
----------------------------------------------------
11/29/17, 5:45 PM to Pat (from Howard)
Love you too 💕🙂
----------------------------------------------------
11/29/17, 6:50 PM to Pat (from Howard)
We are going to have a “Celebration of Life” open house at anni’s from 1 to 6 on
17 December Sunday.
----------------------------------------------------
11/29/17, 6:56 PM from Pat
Ok
----------------------------------------------------
11/29/17, 7:17 PM from Pat
I might could come this for short time this weekend 2nd. Drive and Stay in
motel. (17th I am scheduled hospice but might be able to change it)
But I wouldn’t want to do anything that would cause you more stress. Only would
do it if you want.
----------------------------------------------------
11/29/17, 7:19 PM to Pat (from Howard)
Would be great to see you! Most stress was watching her die. Better now.
----------------------------------------------------
11/29/17, 7:26 PM from Pat
Oh! Alrighty then. I will tell you more about arrival etc. Jo going to stay with
animals. I’m gonna ask friend Mo to go with and help drive.
----------------------------------------------------
11/29/17, 7:27 PM to Pat (from Howard)
Great!
----------------------------------------------------
11/29/17, 7:28 PM from Pat
I will be so happy to hug my bro!!!
----------------------------------------------------
11/29/17, 7:28 PM to Pat (from Howard)
Thanks!
----------------------------------------------------
11/29/17, 7:31 PM from Pat
I know we will leave early Saturday. Yay!!
----------------------------------------------------
11/29/17, 7:32 PM to Pat (from Howard)
Great!
----------------------------------------------------
12/1/17, 9:01 AM to Pat (from Howard)
Do you have an ETA? I will be playing banjo at the Tempe Arts Festival today and
our band plays there tomorrow at 0900. Want to be sure I am home for your
arrival.
Just trying to continue doing what I would have done in the past with
intermittent crying bouts.
----------------------------------------------------
12/1/17, 9:29 AM from Pat
Yes please don’t interrupt anything you’re doing!
Probably 3p or 4 pm. Arrival. Wish i could see band though.
----------------------------------------------------
12/1/17, 9:30 AM to Pat (from Howard)
Sounds good
----------------------------------------------------
12/1/17, 9:31 AM from Pat
It’s a quick trip because it just happened to work for me this weekend. Maybe
longer in the future. 🙂
----------------------------------------------------
12/1/17, 9:32 AM from Pat
Jo taking care of animals which she prefers to car travel!
----------------------------------------------------
12/1/17, 9:33 AM to Pat (from Howard)
Ok. Looking forward to seeing you!
----------------------------------------------------
12/1/17, 9:39 AM from Pat
Me too!!!
----------------------------------------------------
12/2/17, 1:23 PM to Pat (from Howard)
Sounds good. I am on train heading home.
----------------------------------------------------
12/2/17, 2:56 PM from Pat
Ok arrived
----------------------------------------------------
12/3/17, 7:35 AM from Pat
Left motel and on our way🙂
----------------------------------------------------
12/3/17, 7:36 AM to Pat (from Howard)
Ok.