My Kidney Update for June 2021

Everyone knows I have kidney disease but there’s been a lot of changes since that post that I haven’t written about so I thought I’d summarize.

Early in 2019 during some testing to get me re-listed for transplant in Rochester, instead of Pittsburgh, a mass was found on my right kidney. This placed me on hold status, unable to receive a transplant until it had been properly identified or removed.

In August of 2019 my right kidney was removed (known as a nephrectomy) as no testing would reveal what the mass was with confidence and removal was the only way forward to transplant (the ultimate goal). This was incredibly concerning beforehand for me as my function had already dropped to around 10%. Unfortunately there’s no way of knowing which kidney was doing the bulk of the filtering so we could be removing the one that’s doing all the work. If the removed kidney was doing a large amount of work the remaining kidney might not be able to keep up which could immediately put me into needing dialysis. The good news was this immediately reactivated me on the transplant list as there was no longer a concern.

In September of 2019 we were planning a house warming/birthday party in our new backyard, but the week before I became suddenly ill and had to be put on emergency hemodialysis. This was never the plan. The plan was that as soon as things started to become noticeable or I felt like it was getting to be time I would get a PD catheter placed so that I could begin peritoneal dialysis when necessary. I had attempted to make this happen during or before the nephrectomy but the surgeon was resistant as it complicates the surgery and adds additional risk of infection during that surgery.

Upon starting hemodialysis I initiated the planning for the PD treatment and by the middle of November I had transitioned to at home overnight peritoneal dialysis. We even traveled to Disney World with it in November/December of 2019.

Prior to our Disney trip my mother had heard a story of someone finding a donor with some shirts while on vacation at Disney World, so she had shirts made up for all 8 of us that were going: Me, Rachel, Delilah, Reece, Averie, George, Karen, Barb.

On March 13th 2020 I hung my “I need a kidney” shirt on the outside my cube wall as the last thing I did before leaving the office for the weekend. It turns out this was more of a permanent decision than i thought since due to the COVID-19 pandemic I didn’t see my cube again until January 13th 2021 and that was just to pick up my things.

On March 17th 2020 (unbeknownst to me) my would-be donor spent their last day in the office, saw my shirt and at some point decided to get tested.

After a long period of testing and evaluations eventually it was determined they were a match. Sometime around November is when this news came to me and it hit like a mac truck (in a good way). After that phone call I sat in stunned silence for at least an hour.

Surgery was scheduled for February 16th and now here we are, 4 months post transplant feeling better than I have felt in years.

The gratitude I feel for my donor is so hard to put into words, and COVID has made it challenging to express many of the feelings our whole family has had but I literally owe him my life.

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