Kidney Transplant – Part I: The Road to Transplant
Wednesday, 24 August, 2022 — transplant
Back on Wednesday, July 27, 2022, I became a living donor kidney recipient. As I finish editing this, I am four weeks post-transplant. Transplant surgery was at Temple University Hospital in Philadelphia. I was hospitalized through Saturday afternoon, July 30th. We’ve been back home in Williams Township, PA, near Easton, PA after a couple of out-patient follow-up immunosuppression infusion sessions.
Since then, I’ve been getting follow-up care with the St. Luke’s Hospital system in the Lehigh Valley, as part of Temple and St. Luke’s transplant partnership. Today, I was back at Temple for the first time since August 3 for stent removal.
Everything has gone tremendously well, and I am extraordinarily lucky to be here. My surgical recovery is going well. I am completely off of pain meds and, after day three post-surgery, apart from the IV steroids delivered as part of four IV immunosuppression infusions, the only thing I had been taking periodically was Tylenol.
Because I had not talked about this other than occasionally and obliquely on Twitter, it’s likely this is surprising news. I’ll explain how I got here. Part II will describe the surgery and recovery separately.
My transplant was preemptive. I have a genetic condition called polycystic kidney disease where cysts grow on my two natal kidneys and reduce their function over time. After a surprise PKD diagnosis within my immediate family prompted me to discuss PKD with my primary care physician, he diagnosed me with Autosomal Dominant PKD. A combination of bloodwork and a kidney ultrasound,showing the presence of cysts, were the foundation for diagnosis.
The oddball thing about PKD is that it is a slow progressing disease. Unlike my understanding of folks with more general Chronic Kidney Disease, I’ve never consistently felt low energy or otherwise off. My appetite’s been good, I’ve been able to maintain a good exercise regimen. In general, apart from what my periodic labwork was informing my nephrologist, I wouldn’t know or have guessed my kidneys were slowly failing. I’ll speak more about the specifics of PKD separately.
A new primary care physician referred me to a nephrologist back in the 2017/2018 time frame, primarily because my lab values had progressed beyond where my physician felt he was comfortable treating me as a generalist. Nephrologists are specialists in kidney function, managing various forms of kidney disease. I met with my nephrologist every four to six months.
Eventually, in fall of 2019, my kidney function tested below 20 percent, the threshold for transplant listing evaluation. It’s also around that point that nephrologists will get more serious about contingencies and discussing dialysis. We were living in Raleigh, NC at the time, and my nephrologist referred me to UNC Hospital in Chapel Hill for transplant evaluation. I also completed dialysis orientation at a dialysis center, but did not get a surgical referral for a dialysis catheter.
Transplant evaluation at UNC took place over the course of a couple of intensive visits and some local to Raleigh with lots of imaging (x-rays, CT scans, MRI), and blood work. My results looked good and I was accepted for transplant listing around April of 2020. Around the same time, Robin and I had decided to move to Pennsylvania to be closer to her family. My PKD was as managed as it could be. I was also on an experimental medication, called Tolvaptan, or Jynarque, intended to slow the progression of PKD. Ultimately, my kidney function continued to decline and in late Fall 2020, my prescription insurance company informed me and the specialty pharmacy dispensing the medication to me that they would no longer pay for the drug on my behalf since I no longer met the experimental criteria for the medication.
After the move to Pennsylvania, my NC nephrologist referred me into Temple University Hospital’s transplant program. I also started seeing an Easton, PA-based nephrologist at St. Luke’s. Thankfully, a lot of the medical imaging from UNC was transferrable to Temple and I was actively listed with Temple in June 2021. Multiple listings are allowed, and if you change where you are primarily listed, you can shift your waiting time credit with United Network for Organ Sharing from one transplant center to another. We did that, and that essentially bought me 15 months of credited wait time.
The typical wait for a deceased donor kidney, which is the majority of US kidney transplants is between 3 to 5 years, depending on blood type and listing region. Some transplant candidates get transplants in far shorter amounts of time, but, those are rare circumstances. In my case, there wasn’t an immediate need for transplant since my nephrologist and I agreed that I didn’t need dialysis.
In Summer of 2021, my kidney values were getting to a point where it was time to get serious about soliciting for a living donor. Dialysis wasn’t imminent, but the possibility of needing it wasn’t remote, either. With Robin’s help, I drafted a note to ask family, then friends, if anyone would consider making a living donation when the time was right. But, in a shock, even before I could ask, a member of my family preemptively contacted me to let me know they were willing to be a living donor.
Fall 2021 through to February 2022 was time my family member spent getting screened according to Temple University Hospital’s Living Donor program, but remotely at a qualified hospital close to their city of residence in the Midwest. Thankfully, they qualified to donate and we were identified as a compatible match.
The next piece of the puzzle was determining when to transplant. My transplant nephrologist and I talked about when transplant would be appropriate. At the same time, my donor’s life circumstance were such that there were two optimal times of year for them to donate in consideration of family obligations and care assistance during surgery and recovery. Between the medical considerations and my donor’s circumstances, we determined that the end of July would be an optimal time for preemptive transplant. In March 2022, we formally scheduled surgery, and the process was essentially locked in. At work, I informed my boss and team in early April.
Everything got a lot more real, very quickly. Transplant evaluation and listing were concrete, certainly, but the prospect of major surgery still was very abstract to me. Now, it no longer was.
My acting transplant nurse coordinator at Temple answered tons of questions about the lead-in to surgery and what I could expect in terms of recovery after transplant. Over the course of time between April and early July, I met with my regular nephrologist, my transplant nephrologist, met with a new primary care physician, updated CT scans, echocardiograms, and had a ton of bloodwork done. In the support angles of things, I met with a social worker, transplant dietician, and we made plans with work and family for surgery, recovery, time off from work, making sure our pets were cared for while we were out-of-town, etc.
At work, from April when I informed my team to the Monday before surgery, I kept as much of my normal schedule as I could around sometimes last minute medical appointments. In terms of what I was working on, as my surgery date approached, it became focused on handing off in-flight projects to the rest of my team, and spending several training sessions talking through areas of responsibility I primarily handle on the team.
My donor flew into town July 19 and we drove down to Philadelphia for pre-surgery labwork, meeting with the lead surgeon, getting questions answered by the transplant team, and going through pre-admission testing. Pre-admission testing was satisfying the surgical staff with yet more bloodwork, and, if necessary, any additional testing they wanted to have on hand before surgery. In my case, it was one more EKG. A full morning into early afternoon shuttling around the hospital. Afterward, we drove down to the John Heinz National Wildlife Refugee, hiked a bit, then dropped my donor back off at the airport to return home.
In Part II, I talk about the day of surgery, my memory of going in and coming out of surgery, and landing in the surgical ICU. Part III, will cover my immediate post-surgery recovery. I’ll have other transplant related posts over the coming weeks and months, too. This is nearly 1,500 words! Thanks for reading and thank you for your love and support.