My Search for a Kidney: Lessons Learned
MY DISEASE
I’m 74 now, but I was diagnosed with CKD (chronic kidney disease) twenty years ago in 2004. The first sign was chronic bronchitis, followed by anemia, then blood in the urine. After some 9 months, a biopsy confirmed glomerulonephritis – literally, “kidney tissue death” – an idiopathic auto-immune disease in which the immune system attacks organ cells (first another organ, in this case the lungs, then the kidneys) as a foreign invader. (A 2012 recurrence of my disease started in the tissue that surrounds the heart.) I was treated with “industrial strength” steroids and Cytoxan to suppress the immune system, and I’ve been immunosuppressed ever since. My care was referred to UCSF. For the past 8 years or so, my nephrologist has been Dr. Raymond Hsu, director of UCSF’s glomerular disease clinic.
My GFR, 26 at the time of diagnosis, gradually declined over the ensuing years, to 20 by 2016 and 13 by 2022. As the numbers worsened, my fatigue increased, and I developed annoying neurological and dermatological symptoms (numbness and clawlike symptoms in the extremities, cramps in the legs and feet, and discoloration, blistering, and open sores on the lower legs). These symptoms led me to retire in early 2022.
GETTING ON TRANSPLANT WAITING LISTS AND JOINING BAAKP
My nephrologists vaguely suggested over the years that I get on a transplant list, but no one explained what that meant in terms of the application process — and the waiting lists. Finally, in 2019, Dr. Hsu advised that as I was approaching renal failure, I should apply for a transplant and should meet with a dialysis expert about options.
At about the same time, I heard about BAAKP through my wife’s hairdresser, whose husband is a kidney patient. I wish I’d heard about it sooner!
In late 2019, UCSF summarily rejected my application, stating that I would be inoperable – because of my age – by the time my name came up on their waiting list. Happily, I later learned that other transplant centers do not have the same restrictions.
I attended a tutorial at a dialysis center near home. After touring the center, I had zero interest in getting treated at such a place. I thought PD looked like the best of bad options (but became alarmed when a brother-in-law told me he’d developed sepsis from his catheter, which seems to be fairly common). Dr. Hsu set up a meeting with a UCSF transplant surgeon to discuss the catheter insertion. I asked the transplant surgeon about my rejection at UCSF and was told: “The wait in the Bay Area or Southern California for an O-positive patient is at least 10 years. Look elsewhere, like Mayo Clinic in Phoenix, or somewhere in the South; they have much shorter waits.” I expressed surprise that you can apply outside of the area where you live, because of the time to travel to a remote location to get a kidney that’s been removed/frozen; the surgeon said, “That’s no big deal. Heck, UCSF does all the transplants for the State of Hawaii.”
I started asking questions at the BAAKP monthly support meetings. Not all of what I heard was relevant to me, but the discussions were honest, sympathetic, and intelligent, and even the information that wasn’t personally on point to me provided context for what I was going through. These were folks who weren’t suffering gladly but were taking charge of their fates. (I thought so highly of BAAKP that I joined the Board in mid-2023.) Significantly, I learned about a website that provides data on kidney transplant waiting list times and success rates at all US transplant centers: srtr.org. My search was on!
STRATEGY FOR SELECTING TRANSPLANT CENTERS
I asked Dr. Hsu which centers I should apply to. He had no idea – and seemed surprised that anyone would apply to a non-local facility. But he also said UCSF could provide follow-up care wherever I got my kidney and referred me to the centers I selected.
I toyed with the idea of going abroad for surgery, as my research showed that transplant centers in other nations (e.g., Germany, India) promised far shorter wait times than any US transplant center. Lack of accessible data, language barriers, travel time and cost, and questions about kidney provenance led me to jettison that idea.
My strategy was to apply to one local transplant center (U.C. Davis) and two transplant centers that were out-of-state. More than three seemed unwise given the time and expense of traveling to hospitals for testing and follow-up visits, and the need to provide regular blood vials to the centers for antigen testing (that’s necessary to ensure that your kidney will be a good match!). I’d heard a lot about Mayo Clinic, as well as Davis, on BAAKP calls, so I decided to apply to both. My family suggested NYU Langone; although it is distant, and New York City (like San Francisco) is very expensive, my wife and I often travel to NYC to see a daughter who lives there, and we couldn’t think of a more important way to use our retirement resources. All three centers were highly rated at srtr.org; Mayo and NYU Langone had among the highest ratings. (As of September 2024, NYU Langone is the highest-rated transplant center in America.)
THE WAIT
UC Davis approved my eligibility in March 2023, but not as active – that status was conditioned on getting a cardiac catheterization after starting dialysis (due to concern about my 2012 heart attack, and about the catheterization dye being bad for the kidneys). Mayo granted active status in late 2023. Both dated my eligibility from the date of UC Davis’ approval. After 3 trips for onsite testing, NYU Langone advised me of active eligibility in March of 2024 – but retroactive to September 2023, when my testing started.
I should note that before making me actively eligible, both Mayo and NYU (like Davis) wanted assurance about my heart condition. Mayo did a reduced-dye stress test which showed my heart was fine. NYU wanted a low-dye catheterization, which was performed near my home in February 2024 with, again, positive results.
Given my age, I elected to receive a high-KDPI kidney or a Hep-C kidney. (High-KDPI kidneys come from older decedents and last 10-15 years vs. 20-25 years for living donor kidneys; Hep-C is 100% curable but still carries a stigma.) Davis said the wait would be 2-3 years; Mayo, 3-4 years; NYU, an astonishing 10-12 months.
SUCCESS, AFTER SOME BIG BUMPS IN THE ROAD
That brings me to the roller coaster ride of June 2024. First, on June 1 my insurance changed from a regular insurance plan offset by Medicare to a “Medicare Advantage” plan. I called the insurer to ensure I still had coverage for my three waiting lists and was told that NYU and Davis were fine, but Mayo had not contracted with the new plan. I called Mayo and they immediately dropped my status to inactive, saying I’d become active again only if I changed insurance.
I had contacted Davis several times to see if I could be made “active” given the positive results of the February cardiac cath. They responded in late June, saying that they had reconsidered their “protocols” for active eligibility and now all patients would have to be on the “inactive” list for 5 years before becoming active; they’d review my cardiac status then. I explained that I had been told 15 months earlier that my wait would be only 2-3 years. They said there are no exceptions. I was crushed!
But three days later, lo and behold! My wife and I had planned a trip to NYC to visit our daughter, departing June 28. At 6 p.m. on June 27, while finishing my packing, I received “The Call” from an NYU surgeon stating that they had a kidney for me if I could be at the hospital by 9 a.m. the next day. I picked up my bag, raced to the airport, and got the last seat on the first nonstop to NYC. I arrived at Langone at 7:30 a.m. and had the transplant that afternoon. It was 9 months almost to the day since I had first come to the hospital for testing.
Shortly after the surgery – from which I never had any pain at all – I asked my surgeon about NYU’s average transplant wait time. He said 9 months for all patients. I asked how the wait time could be so short in New York when it was far longer everywhere else in the US. He said that NYU has only 250 patients on its waiting list – compared to thousands at UCSF and Stanford. NYU opened the transplant center in the newly built Kimmel wing in 2019, after hiring Dr. Robert Montgomery, a heart transplant recipient, from Johns Hopkins, to build a world-class transplant center. Montgomery’s direction is to aggressively seek kidneys 24/7, anywhere in the US, and work with the kidneys so that they can safely be used. Unlike many centers – which reject usable organs out of fear that bad outcomes will hurt their numbers – NYU’s goal is patient care, not statistics. (My surgeon disappeared at one point for a week; later he told me he had been traveling around the US, personally collecting livers for transplant!)
I note that srtr.org now reports (as of September 2024) that the average wait at NYU Langone is in fact 9 months.
LESSONS LEARNED:
I would pass on the following lessons learned to kidney patients seeking a transplant:
- If possible, begin your search prophylactically — before starting dialysis – as soon as your GFR hits 20. Pre-dialysis transplants avoid at least one surgery, and you’ll most likely be stronger, and hence have a faster recovery.
- Study srtr.org to identify at least one good transplant center close to you. (Choose “kidney”, search for a center, then click on “pdf” to get detailed data regarding one-year success rates, average wait times, and much more.)
- If you are mobile and have the means, identify at least one non-local center that you can get to without too much trouble. Best would be one that is near to friends and/or family (which may help with finding lodging), I think three centers is a good number because there may be bumps in the road that make one or two of them not work out –as happened to me!
- Make sure that the transplant centers you apply to will accept your insurance.
- Before committing to any transplant center, research the cost of renting a nearby short-term furnished apartment (ideally with washer/dryer/dishwasher) to be sure you can handle it. VRBO or Air B&B may be good choices except in cities (e.g., New York) that regulate them like hotels. Also be alert to broker’s fees, taxes, cleaning fees, and other costs that may not be disclosed on rental ads. Transplant patients must stay within 30-60 minutes of the transplant center for several weeks after discharge. (Public transit is often cheaper and sometimes faster than rental cars/cabs/Uber; if it’s available, be sure to ask the center whether you’ll be able to use it.) Hotels and motels may not work because, depending on the transplant center, you may be unable to dine out or even get takeout for a few weeks; and hotels are a lot more expensive than apartments.
- If one or more of the centers you apply to isn’t local, make sure that your local hospital’s transplant nephrology team will be able to provide care after you return home from your surgery.
- Keep in touch with your transplant coordinators – whenever you leave town, have a medical problem, etc. Always keep them informed about your availability and condition!
- You never know when you’ll get “The Call.” So have a “go bag” packed and ready, as though you were about to head out on vacation for a couple of weeks.
Seek solutions to any issues or concerns from your doctors and your friends at BAAKP.
Don’t give up!