03/07/2023
[From Scott]
Update #2 – Post transplant … what a roller coaster!
So, I was discharged Feb 27th (from the transplant). Some of the delay was the ice storm (one of them) that took out my power. Since the kidney was still “sleepy” – they wanted me to do my nighttime dialysis at home, to take the edge off the bad numbers (creatinine, phosphorus, BUN {blood-urea nitrogen}). Needed power for that. Sprung on 27th, Blair (my brother) and I set up shop, got into the rhythm of the pill schedule.
Have clinic visits mon/thurs morning .. wednesday night March 1st, got something (a pill?) stuck in my throat - could breathe fine, but pills wouldn't be able to go do without backing up. Went to clinic and let them know .. at same time, based on my labs, they had decided they wanted to install a hemo-dialysis port (below my right shoulder in the front). The PD (nighttime) dialysis is sort of a blunt sword .. and takes off fluid (normally good, not when you want to flush a sleepy kidney). Hemo lets them "dial in" what they want, and not remove fluid. Based on the two things (throat and hemo) they admitted me again (March 1st). As of this writing, I’m still here, but *should* be able to go home tomorrow.
Then began the rollercoaster of procedures (mostly working on the throat issue), but also the hemo. Throat turned out to be scar tissue from previous acid-reflux events .. they used a "balloon" to stretch open the esophagus a little (a standard procedure that people sometimes have done). The downside of all the procedures was that I had periods where I couldn't eat or drink (because of anesthesia). Also not good when trying to build strength and flush kidneys.
The throat is resolved. Have to chew food well (and avoid acid reflux!). In the waiting time, they did a biopsy of the new kidney (also standard if not fully awake after 2 weeks). The excellent news is that there is zero sign of rejection - so it is *just* sleepy, and *will* wake up. [There "might" be signs it is starting, in terms of output .. the bad numbers dropping always lags behind the fluid increase.]
It is impossible to sleep well in the hospital - too many noises and constant interruptions (for vitals, pills, etc.). I'm catching some naps here and there, but once I get home, I'll have ability to sleep (no PD at night .. will probably be some hemo sessions at a clinic during the day). The delay at the moment is trying to find an appointment slot for me at a clinic - once they have that as backup, they can release me [*hopefully* tomorrow!].
I *assume* my recovery at home (un-interrupted) will be much quicker than so far ... this has been a saw-tooth of gains here .. should be a steady rise at home.
With sleep will come the ability to concentrate that I've been lacking. It has been great to have Blair as my spokesman to get the word out (and take copious notes when the medicos come by for consults).
We had shifting-sands under our feet with all the medical procedures and discussions. Blair is amazing at being able to keep everything straight and take notes. But that also meant that we didn’t update all the channels of communication at the same rate. Some people (such as my family or Blair’s family) might have known all of this long before the information got to you – in places, we asked them to hold onto it – rather than have to answer questions they couldn’t answer (because *we* couldn’t answer them either). So, please be patient with the lines of communications!
All indications are good at the moment. Hopefully the next update will confirm that! Thank you so much for all the messages of support (and celebration at the overall good news)!
Scott (Schneider) (Dr. Scott) (MUD Scott) (Uncle Doc)
