I live in the New York Area and my kidney function has gotten to the point where my nephrologist is recommending me for transplant. In my initial research, I found information from the NIH and Kidney Foundation indicating that one’s choice of transplant center can make a difference and one should be selective in choosing which one. However, I’m struggling to find information on how I am supposed to make that choice and what to look for. In my immediate region, there are about half a dozen kidney transplant centers and based on best proximity to my home, I’ve narrowed that list to 3. But I’m really struggling to figure out how to choose which one. It seems to be such an important decision but there is little information out there on what to base my decision on. I called my nephrologist but she just said I could go to whichever one, which wasn’t very helpful.
How Do I Choose a Kidney Transplant Cent... - Kidney Transplant
How Do I Choose a Kidney Transplant Center/Hospital?
The govt makes the Transplant centers report statistics on their programs. That includes how many transplants they do, their success rate versus the national average and the wait time for a kidney by blood type. That may help decide who to go to or who to not go to.
My nephrologist said that while they are interviewing you, you are also interviewing them. You are going to have a long association with this group, before, during and after your transplant. You want a level of comfort with the people there. I am delighted with my center. Everyone, yes everyone, we met was in the nice enough to take home to Mom category. From the coordinator at the start to the docs, the nurses on the transplant ward, the whole bunch. My wife and I adore and trust the nephrologist that is keeping track of me afterwards. It helps make a confusing and scary process so much better.
Good luck. You will hear a lot about the benefits of having a living donor. Finding a donor, now that can be scary. But, it has worked out fabulously for me, and my donor is doing great. Turned out to be my pastor. You never know.
I agree with everything in this response!!! And yes yes yes seek and you shall find a living donor! My husband is mine and 2 others in my family are also living kidney donors. Happy to provide any insights and answer any questions. I also love love love my transplant center. And if you are not yet on dialysis, work hard to find your donor so you can transplant before ever go on dialysis. It’s called a preemptive transplant and I did it. Good luck and God Bless! You are not alone!
Thank you @Dexterlab. This all makes sense. That sounds like good advice from your nephrologist about "interviewing them". My long-time nephrologist didn't give me any choices but just gave me a referral sheet to the hospital she was affiliated with. When I called her back to inquire about the options in my region, her receptionist just relayed the message that "I could go anywhere I wanted".
I completely agree that being comfortable with your medical team is important (for any medical professional!). The reason I actually started searching around was because when i submitted my online appointment request to the hospital my nephrologist originally recommended, they never replied to me. When I telephoned them to follow up I got a very curt administrator who took down my information. This just raised some flags to me about the potential patient care if their administration was 1) not very organized and 2) not very service oriented. So that's when I started researching and realised I did have options, especially in such a large metro area as NY. But in some ways, that actually made it more daunting to realize that I could make a mistake by not choosing the best one for me.
In my research I came across this National Center for Biotechnology Information (part of the National Institutes of Health) paper about how transplant recipients choose a transplant center. The paper indicates that most don't have very good information and don't understand the disparities in outcomes that can come with different centers. See link here:
I live outside of NYC and had my transplant 17 months ago at Weill Cornell. I also went to Montifore initially but ended up needing a new nephrologist. Through a doctor friend at WC he recommended one at that hospital. I have had great success.
The transplant surgeon has been performing transplants for around 25 years and the nephrology teams there have been phenomenal.
Although there are about five Centers of Excellence in the NYC area and I assume they are all capable I can only offer you my personal experience
Thank you very much for sharing your personal experience. Any bit of information or first-hand account is helpful. Essentially, my choices are New York Presbyterian (Weill/Cornell), NYU Langone and Saint Barnabas and I'm struggling to gather tidbits of information on each. NYP Weill Cornell has a stellar overall reputation as an excellent medical center. NYU Langone has a strong transplant reputation. Saint Barnabas is the largest kidney transplant center in the NY area.
One other thing to consider besides success rates, which they all strive for is convenience of location as you will have to return to the clinic two or three times per week for blood work for a minimum of one to three months. The visits will be less frequent but you will have to continue clinic visits for up to one year. At Weil Cornell it is a first come first serve basis and has to be early, around 7am, so you can take your meds on time after your blood work up and the lab can process your blood and urine that day.
Thank you, that is very useful to know! I did eliminate several options from the original "long-list" due to proximity and accessibility issues.
That's going to be my problem as I live in a rural area and the closest transplant center is 1 and 1/2 hours away. The other is 3 hours away. I live on a farm with horses, dogs, and cats that require care. Another thing to consider is if you have private insurance the center accepts what you have.
FYI, I did a bit more research online and came across the Scientific Registry of Transplant Recipients (SRTR) website (srtr.org) which has transplant data for all transplant centers in the U.S.. It allows you to easily find transplant centers in your area and also has a straight-forward rating system out of 5 for how quickly recipients get deceased donor transplants and 1-year kidney survival. It also has summary data reports for each transplant center. This is the only thing I've found online that does this sort of data comparison.
Interestingly, for the New York area, the largest transplant centers: Saint Barnabas in New Jersey and New York Presbyterian (Weill Cornell/Columbia) don't get the highest "ratings". The best "rated" transplant center is NYU.
The American Kidney Fund (kidneyfund.org) also has a small section on "Choosing a Transplant Center". It's not very detailed or informative, though.
Just FYI for anyone in a similar predicament as me in the New York area, the main transplant centers I could find are (source: srtr.org)
-NYU (NYU Langone Transplant Institute, Manhattan) - 203 transplants last year
-New York Presbyterian Weill Cornell (Manhattan) - 265
-New York Presbyterian Columbia (Manhattan) - 204
-Mount Sinai (Manhattan) - 169
-Montefiore Medical Center (Bronx) - 156
-Saint Barnabas Medical Center (Livingston, NJ) - 338
-Hackensack Meridian (Hackensack University Medical Center, Hackensack, NJ) - 108
-North Shore University Hospital (Manhasset, NY) - 118
You also need to consider the community that the center serves when you look at the success rates. In my area, Georgetown has the best ratings, but John Hopkins is a great hospital, but they serve inner city Baltimore, with a more challenged and challenging population. The patients affect the outcome too.
Yeah that makes sense. I'm an analyst by career and so its very frustrating to only have one source of data information (srtr.org) and no accompanying qualitative analysis of the data. I'm used to being able to peruse dozens of research and analytical sources in my field constantly churning out research notes. So, I definitely understand that the data presented is limited and needs to be interpreted critically and thoughtfully.
They are all very good from what I have heard. Look up Dr. Sandip Kapur who is there head of transplant surgery. He did mine and from what I understand does all the recipients and another surgeon does the donor transplant. Dr. Kapur is wonderful and is very easy going and encourages his patients to live there life post transplant. Feel free to reach out if you need information
There's a guide that just came out for patients called Is a Kidney Transplant Right for me? esrdnetworks.org/toolkits/p.... There's a section on selecting a transplant center.
For me, I ended listing at two different ones though you have to consider your insurance. While you are able to list in more than one, keep in mine that your insurance may only cover tests for one. I was able to transfer all the tests from UCSF to UC Davis because all the tests were within a year. But UC Davis also required more tests and I would've had to pay for those myself. My nephrologist also pointed out that there's a lot of followup appointments after the surgery and I should consider if I wanted to travel that far for those.
Look at stats also for each center also. How many do they do? Success rate, etc.
Also take the distance into account. You will have very frequent visits with them especially the first year. In case of medical complications you would want to be able to go to them and their affiliated hospital in a short time.
Stony Brook University Hospital. The team there is excellent! The surgeons, Dr. Waltzer and Dr. Darras have been at the hospital for decades performing kidney transplant surgery. 100% recommendation. BTW, I had my three month post surgery appointment today and I am doing great! Hope this helps.
I had my transplant at NY Presbyterian/Columbia 26 years ago and it was very successful with a deceased donor. A year before, I had one that not only never worked, but I had sepsis and hospital infection that put me in a coma. I was in the hospital in NJ for 3 months. The hospitals were like night and day.
I like my nephrologist so much, that I moved to Florida last Aug. intending to fly up to see him twice a year. Because of the pandemic, I see him virtually .for now, and do blood testing locally. My surgeon was very good and retired.
I wish you luck in whatever you decide. Being close by isn’t always the he best choice. It took me 3 hrs. because of traffic to get to Columbia. from south NJ.
Not sure if anyone mentioned yet but the surgeon is important but not as important as the team and the transplant nephrologist IMO. I have not seen my surgeon since being discharged from the hospital, but have had to see the team and the T nephrologist VERY often . The truth is the transplant surgery in itself is not the most complicated surgery technically speaking, so if your surgeon is well-trained it isn't an "extra dangerous" procedure. The majority of the time transplant fails due to host/donor endogenous factors as well as behavioral factors (noncompliance of medications.being no.1). I hope you find a team of interdisciplinary professionals whom you feel good with. Good.luck!
Agree with this.
Thank you all for the advice. I get the impression what NYP Weill Cornell, Saint Barnabas and NYU Langone are all very well established and good quality kidney transplant centers. I originally was scheduled to do an evaluation at Saint Barnabas, but have switched to NYU Langone given its closer proximity and easier access from where I live.
I would honestly see if you could go see the center and when no one is looking talk to anyone who is in the waiting room or leaving the center. I wish the first center would not have let me go because they said I was a risk because I was getting a divorce and would be single and only had a part time job at the time. Good luck!
Hello All. I just thought I'd update my status and experience picking a hospital two years after I originally posted. I ended up listing at two hospitals: Saint Barnabas in New Jersey and NYU Langone in New York. I chose two because listing at two different centers that are in different organ procurement regions can help expedite the waitlist. I was extremely lucky and received a call under 12 months after being approved into both transplant programs. I ended up getting my transplant at NYU Langone and was very happy. The transplant surgery and in-patient care is in their brand new Kimmel Pavilion with private rooms for all transplant recipients. It was a very nice room and the nurses were all excellent, caring and responsive during my 6-day post-surgery convalescence. I must admit that the out-patient care (I've been post-transplant for 8 months now) has not been quite as good and I sometimes have to nudge the team on prescription updates and answering some questions. But overall I am very happy. I had a successful transplant, I couldn't fault my in-patient care and everything has gone well.
In response to my original question about how to choose a hospital, I would recommend the following having now gone through the experience:
-Do the research on the data. There are websites listed in this thread where you can see the number, success rates etc that you can use to compare different hospitals' transplant programs. While the data isn't superb and it comes with caveats, you can figure out how large a hospital' transplant program is and some other important data. This is how I narrowed down a choice of 6 or 7 hospitals down to a short-list of 3.
-Distance matters! I had to get blood work every week for months post-transplant and I was glad that I had chosen the hospital closest to me. I ended up choosing NYU over another Manhattan hospital because of proximity as they both seemed qualitatively excellent.
-Do try to list at 2 or 3 hospitals that are in different organ procurement regions IF that is accessible to you. I learned that is very common for people in the NYC tri-state region to list at both NY and NJ hospitals. This is not likely to be an option for most people unless you live near a state border that happens to also be an OPTN region border. Someone told me that they had seen some people list in up to 5 different regions! I'm not sure how practical that is though because when you get the deceased donor call, in my case they wanted me to be able to reach the hospital within 1-2 hours, though I would think there is some flexibility with that. You can find the organ procurement regions here: optn.transplant.hrsa.gov/ab...
-Get a sense of the qualitative experience. As someone else said, try to read the experience when you go in for the evaluation process, interview them, review their websites (do they guarantee private rooms post-surgery?), is this hospital known for transplants?. In my case, this is where I learned about NYU's guaranteed private room, their new building and that NYU is one of the premier transplant institutes in the country.
I would recommend getting registered with all three, especially if they're all well known for their excellence in post-transplant care. It may different from state to state but my understanding is you can be registered at more than one hospital to increase your chances of finding a kidney sooner.
You can only register with one Center of Excellence in New York. You can register with others out of state
Ah, yeah. I'm in Colorado so I'm not super familiar with how it works on the East Coast.
Thanks for the advice @tesslafera. According to the American Kidney Fund, it only makes sense to list at multiple centers if they are in different Organ Procurement Organizations (OPO) areas. Source: kidneyfund.org/kidney-disea...
In my case, it does seem as if Northern New Jersey and New York City are in different OPOs, so it might make sense to register in both.
I hope it works out for you friend!