@rosemarya This is a perfect update time for me. I was just thinking about posting and deciding where to post it. Thank you for sharing and asking about all of us. I don't often have much to say, but I appreciate the significant work you do as a volunteer on this site. My deepest thanks.
Beginning in January one of my immunosuppressants was changed. I did fine for several weeks until there was an extremely low test. I believe my current care team (which does not have much experience with me on this medication) overreacted. I was working with two different people and conflicting information was being given and orders written. I disagreed with their plans of care but followed orders as closely as I could figure out to do. The end result was that the initial order was an overcorrection and the resultant change was still too high. At some point I developed a UTI from a germ resistant to the prophylactic antibiotic I was using. That test result was disregarded because I was on an antibiotic. The report on what antibiotics the bacteria was sensitive to was not checked until I sent in information that I was hospitalized last week.
I have to step back in the story now to the point of the immunosuppressant dose. I react quickly and badly to increases in this particular medication, so having many quick up and down test results and changes of dose brought on an autonomic response. My fatigue was increase, nearly immobilizing. My tremors were increased and my focus was nearly non-existent. This is when I believe the UTI began secondary to increased bowel irregularities and reduction of bladder control.
The beginning of February I had an extreme vasal vagal reaction with sweating, severe fatigue, loose stools and stomach pain. I called my husband to help me try to figure it out. We determined that it was not low blood sugar and were trying to think of what else to check out when I went into a blackout, resulting in an ambulance and the ER. All labs came back with range or my trending so I was sent home to follow up with my primary. He concurred with the ER docs impression and we had no immediate action solution so were watching the situation. No additional labs work was done after the ER.
Mayo's response was to come down to determine if the CMV mismatch with my donor was involved. I hoped to determine this through lab work at home but they preferred me to go in. The week before last we were in Mayo and determined that there was no problem with the CMV but that my urine bacterial count was over 100,000. I did also visit with a gastroenterologist and have a kidney ultrasound. We were glad to have had the ultrasound results.
Now we are back to where I stepped back. Last Thursday I had another vasal vagal episode, ambulance and ER visit. That visit they did a CT scan of my head and now the high bacterial count was addressed. They started me on IV antibiotics and wanted to admit me to the hospital, but the ICU was filled, so I was required to go to the nearest hospital able to accommodate me, 100 miles from home, by ambulance. I really do not like long ambulance rides. I mean REALLY!
This has been a good admission for me. I have seen a neurologist, nephrologist, OT, PT, IV antibiotics, fluids, medication adjustments and improved immensely. I have been cleared by all except Nephrology, Speech and OT and am waiting one more test result before I can go home. That should be Tuesday for sure, possibly tomorrow.
Happy dancing for me. It will take a little time to get my fitness back to where I was in December but at least I am on the way.
I apologize for the length of this update. I know it is a lot, but it is easier to write at/near the end than during for me. Thank you everyone for caring for everyone else on this site. It is such a comfort knowing you are all here even when I am not. Blessings to all.