Have a question: How many visits did you have to make to transplant centers to get on the waiting list?

[FelineFandom146]

Hello fellow CKD warriors, but especially those who have been evaluated to get on the kidney transplant waiting list? May I ask how many visits did you have to make to the transplant centers to finally get on the list? I'm curious because I just had Day 1 of my first evaluation this week. No tests were done after a three hour drive each way and I feel as if I accomplished nothing. All I did was spend three hours in education of lecture and power point lecture and the afternoon speaking with a Transplant Nurse, Dietiatian who nothing new to offer me since I already eat healthy, and a Social Worker who I had already spoke to on the phone the day before, which I felt all could have been done by video or phone and have already suggest this for long distance travelers. Anyway, when this center first telephoned me to make the apppointment for evaluation they made it sound as if they would do "all these tests" on my day of visit only to find out that I'll have to go back another day. Another center closer to where I live says I'll have to do three days of evaluation for education, tests and more. Is this pretty standard?

So again I ask you how many days of evaluation did you have to do? Thanks in advance for your replies and thanks again for your tips you offered me before I made the evals.

[Bassetmommer]

it so depends on the center. The first one was test after test for MONTHS and I am not kidding. 4 months. Then you repeat it as you get closer and again, 4 months. Now I am going to a center that is 1.5 hours away and they SAY they do as much as they can in a day. Now, I won't count since many of my tests rsults will just transfer over from one center to another.

[FelineFandom146 in reply to Bassetmommer]

Thank you Bassetmommer. Just curious. I know each center has its own requirement. Some share tests with others. Some don't. Just trying to get an idea for worse case scenario. They don't seem to just answer the blund question. Same with when I ask them what is their waiting list like. Instead of giving an estimate I am met with the canned reply of, "It all depends on different things. You can ask the surgeon." But I like to know in advance and be prepared. Besides, why would I even want to make an appointment at a center with a 9 year wait that is several hours away. I'd rather go someone else with a shorter list. Stay safe. Hope you fare better at the Erie Med Center.

[Bassetmommer in reply to FelineFandom146]

I would have to look it up but somewhere there is a list of centers, how many they do and what kind of transplants. I think it is by states. Maybe someone knows what I am speaking about

[Bassetmommer in reply to Bassetmommer]

to find kidney transplant centers, you can visit the Organ Procurement and Transplantation Network (OPTN) website and select "Transplant Centers by Organ," then choose "Kidney" and your state or region

[FelineFandom146 in reply to Bassetmommer]

Thanks bassettmommer. I did review this site several times already. Despite all the useable data, it lacks direct answers for median waiting time at different centers, though I've located most waiting times elsewhere. Thanks again. Stay safe.

[Eyak1971]

You got a lot of good information in these responses. I can only add my experience. I was registered in 2 centers. One a 3 hour drive and one in my own area. The one 3 hours away was quite extensive for the first visit with similar classes as you stated and performed the typical tests. The one closer actually accepted many of the results of the first which made the process easier. When the time came for a transplant the local center provided the opportunity sooner. And therefore my followup appointments for 3 years was much more convenient for myself and my family. Take care and the best to you.

[GardnerADK]

The transplant center in Burlington VT at Univ of VT Medical Center my spouse used in 2018 Nov to receive his kidney this place closed 3/1/25 due to the entire center in financial problems. I think we had to be at 4-5 appointments that lasted 2-3 hours each appointment on different topics to even see if you could get on the wait list. Our travel was 90 min minimum and ferry ride across the lake around $25 roundtrip. THen the tests were started at our local hospital and some in VT hospital, then we waited for the committee to decide everything and put my spouse on wait list. I wish more information was known then about the psychological possible depression that can happen to some people for assorted reasons post transplant and also the medical insurance was 'over the top complicated' due to my spouse is retired military with benefits and not on Medicare and used my private health insurance. Good luck.

[horsie63]

I also have a 3 hour drive. The center I go to, KU Med in Kansas City, KS sends out a video that covers all the education. We also met with all of the team and did the blood work, ekg, CT scan, and a scan of my abdomen. We were there for at least 4 hours. I was active on the list but then ended up in the hospital for 2 months so have been inactive. Redid everything this March but have to get a HepB series. I feel as if I've been on a hamster wheel and going round and round. I was trying to get a preemptive transplant but now I'm on dialysis waiting and waiting.

[Beba2024]

we have used transplantcoach.com website. It shows the wait times based on blood type using the SRTR data.

You will undergo a full body work up. MRI of head, chest, abdomen, colonoscopy, etc. etc. if all of your tests are updated the process can be faster. Once the center reviews all of your test results, your case is presented to their committee for approval and listing.

We have recently been through it and are listed at two centers. Happy to answer any more questions.

[Darlenia]

Transplant centers have different protocols but, in our experience, they all want to see you in person for the initial evaluation. The "meet and greet" is basically an interview during which, we suspect, they're evaluating one's personal behavior (awareness, compliance), motor skills (sitting, walking, balance, etc.), and more. In 2020, my husband's first transplant center took his weight and blood pressure and handed my husband a long "to do" of medical tests that he needed to arrange himself outside the center and complete within a 3 month deadline. This was exceptionally stressful - many doctors weren't doing colonoscopies and so on during the pandemic. At that meeting, his insurance coverage was also reviewed to ensure that financial matters wouldn't be a problem. Months later, we decided to list at a busier center with a shorter waitlist but a good 2 hour drive away down the notorious I-95. My husband also met with their staff face-to-face. He was told he was automatically accepted as a candidate there because he was already put on the transplant list by the first center. The two centers shared test results, but the second center wanted more frequent blood draws and it also wanted a different cardiac test which then led to a heart stent. (That automatically inactivated him at both centers for a time. (Truism: The more centers you're listed at, the more problems may be discovered.) The additional requirements at that center for blood draws meant my husband was constantly getting his blood drawn - often at Quest or LabCorp which, of course, needed orders on file. Or getting his heart checked. And so on. We found our hands full dealing with two transplant centers as well as a dialysis center. It was a treadmill - always looking at the calendar for the next thing to do, jumping into the car to go to appointments, etc. I recommend getting on the transplant list as the first major goal. Getting on the list, in our experience, was our passport to getting accepted at another. (After a few months, my husband received his gift at the more distant and busier center.) So what are the outcomes of the various centers across the nation? This link gives a great overview. Please be mindful that some centers may have a lower survival statistics but those are usually the ones that are trailblazers, giving transplants to some who wouldn't be given a transplant elsewhere: srtr.org/transplant-centers...