Susan Anderson Medical Odyssey
Friday, 2 June evening
Trouble returning to bed from bathroom
Then slid out of bed onto floor
Admitted to hospital Desert Sam
Diagnosed with Urinary Tract Infection
Saturday, Sunday, 3, 4 June
Placed on antibiotic ceftri?…
Seemed to help.
Monday, 5 June
Released from hospital
Wheel chair to get to room
Tuesday morning, 6 June
Tried to walk to dresser
Legs gave out and on floor again
Readmitted to Desert Sam
Very watery diarrhea
Wednesday 7 June 3:AM
Very watery diarrhea continued
Moved to ICU
Blood Pressure ??/20
Stabilized blood pressure with fluids
Thursday 8 June
Diagnosed C. Difficile
They were considering emergency
due to CT scan?
Decided to forego that and try to
Friday, 9 June
Tried to do central line on both
sides of neck
Installed PICC line
Saturday, 10 June
White cell blood count went up again
Became less sleepy when Dr Levitt,
her primary doctor
came to visit for an hour.
Monday 12 June
Moved out of ICU
Sunday 18 June
C. Diff treatment continuing.
Eating a little more now. But not much…
WARNED IN THE FUTURE NOT TO TAKE ANTIBIOTICS WITHOUT REALLY GOOD CAUSE! RETURN OF C. DIFF. MIGHT OCCUR…
Friday 23 June
Released from hospital
Transferred to room 101 of Mi Casa Rehabilitation Facility.
C. Diff. symptoms had not abated. Mi Casa continued the Vancomycin antibiotic treatment. There was slight improvement and a C. Diff. test came out negative but the diarrhea never ceased. She was never hungry and had a lot of trouble keeping food and pills down. They were able to work with her to do physical training and occupational therapy and she was again able to get out of bed and to walk with a walker.
Tuesday 27 June
Still in Mi Casa. Gradual improvement. Still Diarrhea. Able to sit in chair for 30 minutes or so. Physical training underway to strengthen muscles to get her back to where she was before this all started...
She took a turn for the worse. She no longer had the strength to get up out of bed. C. Diff. test was again positive. She was rapidly getting weaker.
We then made the decision to return to Banner Desert Hospital where she was given lots of intravenous fluids, potassium, magnesium, anti-nausea medication, etc. We had researched C. Diff. and found that a fecal transplant procedure, which is not fully approved by FDA, might be the best chance to restore her health. You can see what this treatment involves by looking on-line at Openbiome.org. It basically attempts to replace the “good” bacteria in the intestinal system and diminish the effect of the “bad” C. Diff. bacteria. Very high success rates have been reported when this method is used.
The fecal transplant procedure was carried out. She was given a mild sedative and immediately went to sleep at 3PM when the procedure was started. She finally woke up near midnight.
She ate more breakfast than she had done for weeks. She did not throw up. She even took her pills without throwing up which was a big improvement. Diarrhea continues but appears to be diminishing. She is eating more now than at any time before this all began.
She used a walker and walked 70 feet which is a good sign regarding her strength.
Released from hospital to home. Diarrhea continues unabated.
Home health care changes diapers during the day. I do it at night…
Not improving, getting worse.
Readmitted to Banner Desert Hospital
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.
C. Diff. test came back negative this evening. 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. It’s been under control for over twenty years.
They are suspending flagil and Vancomycin for the time being.
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.
Doctors are puzzled. Want to rule other possibilities out before redoing fecal transplant.
Running 5-HIAA 24 hour urine test and Chromogranin A to see if carcinoid tumors suddenly changed behavior.
Central line placed…
Colonoscopy results: Series of Ulcerated Polyps. Biopsies taken. Results expected Monday, 7 August
Chromogranin A result: 153 - 10 times normal indicating Carcinoid tumor activity leve] [5-HIAA test… They somehow lost the urine sample!]
"polypoid lesions with ulceration noted. Either ischemic colitis or C. Diff."
She sat in chair for lunch…
Latest test shows C. Diff. again. Two previous tests were negative!
Second fecal transplant carried out by enema this time.
Unfortunately blood clots caused use of antibiotics. I think Vancomycin. But normally one is not given antibiotics after fecal transplant. Fecal transplant thus might have been compromised?
Still some diarrhea. Medical people say it might take 7 to 10 days to know if diarrhea will cease.
They are taking 24 hour urine collection for 5-HIAA test again. Hope they don’t lose it this time…
Blood clot in shoulder – will do heparin drip to try to dissolve it.
5-HIAA test results reported to be in normal range! Indicating that Carcinoid tumors are not out of control.
Blood clots under control I think. Still doing heparin. Arm swelling, heating, etc., symptoms nearly gone.
Still diarrhea. Dr. Goldberg has put her on an 8-week Vancomycin regimen where the dosage reduces gradually over time… Says he has gotten good results with other patients…
Some worry about bleeding due to heparin. Two nose bleeds. Black stool… Maybe due to swallowed blood from nose bleeds? Stopped heparin. GI investigated and decided there was no GI problem. Restarted heparin or something similar. Enoxaprin sodium I think…
Transferred to Promise Hospital of Phoenix
433 E 6th St. Mesa, AZ
Susan reports first solid bowel movement since this all began! Rectal tube is out. She has requested that I bring her underwear.
Central line from 4 August is still in place…
When I arrived at her room I found that actually nothing had changed. Rectal tube still in. Catheter still in. Diarrhea still same… Don’t know if she dreamed it or what…
I now think this might have been confusion related to Marinol which was prescribed to improve her appetite.
Called me early evening to ask me to come get her after the music performance was over. There was no music performance. She imagined it… I called nurse station to check on her temperature in case confusion was due to some new infection.
She called me early morning talking about “Mexicans across patio and something about music and kids.” Again this unusual confusion…
Again, I think this might have been confusion related to Marinol?
I called nurse’s station to leave a note for the doctor regarding stopping Marinol.
When I arrived at her room this morning, her legs were out of bed and I asked what she was doing. She said she was going to get up to get breakfast. She has not walked unassisted since this all began so that would not have been good… I got her back in bed…
I gave these last pages and Marinol side-effects data to her nurse (Joe) to put in her file so doctor could see them.
Infectious Disease 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.
Might be some solid stuff forming. Rectal tube was not draining as easily.
Rectal tube removed due to more solid stuff. Still diarrhea but slightly more well formed…
MY NOTES NOT TOO COMPLETE AT THIS POINT.
CLICK ON THIS LINE TO SEE MORE WELL-DOCUMENTED INFORMATION.
Moved to Springdale Rehab Center
Moved to our home and she is with “Complete Hospice Care”. We are also using “preferred care” here in our building to help day to day.
After ups and downs, ups and downs, Susan finally succumbed at 1:07 PM when she took her last breath… No pain, no fear… She was always braver than me…
Midodrine: 10 mg Oral three times per day with meals (to increase BP)
Cinacalcet (Sensipar): 30 mg Oral Daily at bedtime
Ergocalciferol (Vitimen D2): 50,000 units Oral every Sunday
Furosemide (Lasix): 80 mg Oral Once per day
Liothyronine: 5 microgram Oral Daily in the morning
Liraglutide (Victoza 6 mg/mL subcutaneous injection): 1.8 mg Subcutaneous Daily in the morning
Octriotide (Sandostatin LAR Depot): 30 mg intramuscular every 30 days
Paracalcitrol (Zemplar): 1 microgram oral once every day
Potassium Chloride: 20 meq Oral once each day.
Additional hospital medications:
Midodrine was being thrown up. Switched to iv: 40 meq/100 ml bag at 25 ml per hour.
Octreotide: 20 ml per hour from a 100 ml bag containing 500 mcg per bag. Running 5 hours per bag. (Howard – I think that is 100 mcg per hour…)
Marinol to increase appetite. Unfortunate side-effects occurred: Hallucinations, etc.
Megace appetite stimulant staarted instead.