Kidney Transplant Evaluation

[annulla]

I'm scheduled for a kidney transplant evaluation in a few days. I was told that the appointment can take 4 or 5 hours. Can anyone please tell me what is involved with the evaluation?

[larrymontague826]

I am 2yrs+ transplant. I live over 2hr. drive from the transplant hospital. I had as much done the first day that I could get. I had interviews, blood work, x-rays, body scans. It easily took 5 or more hrs. but it was well worth it. The only trouble I had was that the hospital is so enormous and different departments were so far apart it was very tiring. In the long run it was well worth it.

[Hidden]

First, best wishes in your evaluation. You will learn a lot from this process. Things will surprise you. I went in to my evalatuion thinking I had a minimal shot, at best, of getting a new kidney. Voila! 9 months later my wife and I went in for surgery.

My wife and I had our initial workups in January 2020. Surprisingly, I was transplanted (e.g. living donor transplant) in September 2020.

I would imagine the process would be slightly different at each center, but evaluation would included — most likely not on the same day:

a) meetings with transplant nephrologist, surgeon, social worker and transplant coordinator.

b) blood work/labs galore 😀. They test you for everything.

c) imagining including MRI and X-rays (e.g dental, .

d) consultations with cardiology and others. They want to make sure you have a good "ticker." Since I was male and 50 years of age they had me do a stress test. Which I didn't complete due to low BP. Though, I passed the chemical stress test.

My wife, who was also a living donor — part of a paired-exchange — had her workup a few weeks later. Due to beginning of COVID, parts of my evaluation were postponed for months.

At least at my center, cases go before the entire transplant team. It was a wonderful day when all four of us (e.g. 2 donors, 2 recipients) where approved for transplant.

Hope you evaluation goes smooth. Oh, and don't be surprised if there are one or two "hiccups" along the way. To be sure, they can be stressful. Be your own advocate!

[Herkidney]

What an exciting time for you! I realize that may sound strange, but it really is a wonderful time because you will learn so much and receive great information and will hopefully be that much closer to “getting back to normal”. Just imagine - you will have so much more energy and you will feel so good and you will be able to spend time with your loved ones without feeling tired and ill.

As mentioned above, you will meet with many people on the transplant team including the social worker, the financial person (who will discuss insurance and Medicare - if you are in the US), the nephrologist, the surgeon, and others. You’ll most likely do some labs as well.

I had my dental, cardiologist and a few other appointments (mammogram and a colonoscopy) at a different times and locations. Also, they might ask you to get different vaccinations such as shingles, pneumonia, etc. - but you most likely won’t have to do those at the evaluation meeting.

After the meeting and all tests, the team will meet and discuss your eligibility for a transplant. I think it took about a month for them to let me know that I was accepted into their transplant program. One year and four days after I was accepted, I underwent my transplant surgery from a living donor.

During that year, I had to do several blood tests specifically for the transplant center (in addition to what my nephrologist required). The whole experience was not bad at all.

The important part of the whole thing is to try to stay as healthy as possible so that you will be able to have the surgery - so, it is important to keep a positive attitude.

I remember I received the call from the transplant center about my approval while I was at a meeting for work (before the pandemic) and I dropped everything to take that call.

I hope you get that call soon after your evaluation. I also hope that you will receive the same excellent care and respect that I received at my transplant center.

[Frenchie05]

I had my kidney transplant on the 8th November and my husband was my donor. I feel absolutely amazing and so grateful to my husband for this 2nd chance of living a normal life again! Things are going really well. I wish you all the best in your transplant journey and please be assured that your team will look after you throughout the process abs will ensure that you are in tip too condition before surgery would go ahead. And they can answer any questions or concerns you have along the way. Take care and good luck with everything x

[Vicsmom]

Just did another one the evaluation did last 7hrs

[DexterLab]

We'll, they have a lot to do. Part of it is educational, about the transplant and how it works at their institution. They also look at your insurance, your social system (who is going to take care of you post-op and get you to your appointments), and a snoot load of blood tests, like 20 tubes. They finished with a quick visit with one of their nephrologists. I got a chest x-ray. My place sent me to my cardiologist for a full work-up. Asked my dentist for any concerns, and then MRI and MRA of the head and an abdominal CAT scan. So I ran around for a couple of weeks getting all that done. Your place may want to do some of that as part of your evaluation visit. Some of my stuff was because I have PKD and there is some chance of heart valve and brain aneurysm issues with PKD. Luckily, they didn't find anything.

Good luck. I am almost 3 years into my transplant and it has been such a blessing.

[Darlenia]

Hi Annulla. Every transplant center has different approaches. Our transplant center visit only took a couple of hours. To get an appointment there, we needed a referral from our nephrologist, indicating my husband was a wonderfully "compliant" patient, etc. At arrival, we were greeted by a transplant doctor and his nurse. They looked over my hubby as he walked down down the hall to their office and, once there, took his blood pressure. We also were given a notebook and the doctor went over key aspects of it. (Later, a staff person called us at home and went over all of it thoroughly.) At the end of the face-to-face meeting, the doctor brought up a list of requirements that needed to be completed - dental, colonoscopy, heart tests, extensive blood work, etc . - within three months. This was also a great time for us to get our own questions answered. As the meeting ended, we were told that if we managed to get it all done in that timeframe, then a panel of transplant doctors would review the findings and issue their decision. So that's what we did - we got it all done. (All the doctors and labs in our area use MyChart so, as tests were completed, the center was automatically updated.) About a week or two, after we completed the requirements, we received the approval call. Later, we cross-listed at another center and that center used the same data with the addition of a few extra requirements of their own. At that center, the initial meeting was about an hour if you exclude the "waiting around" time. We received a deceased donor kidney exactly one year after dialysis (and about 8 months or so after getting approved by the initial center) at the second center. I'd like to add that my husband has an easy blood type (Type A), and a low PRA for the transplant and, because of his age at the time (70), we agreed to receive a kidney with issues. It's been 5 months post transplant and he's doing well, after experiencing some bumps in the road.

[Blue-Quilter]

Hi Annulla, Yes, it will likely be a long day. As others have said, you meet with a lot of people! My evaluation was on Friday June 3, 2019 and it took a full 8 hours. My husband had to come with me as he was to be my caregiver during my recovery. I don't remember the exact order of who we met with, but it started with the transplant coordinator who was an ARNP. She had sent me a packet in January with a DVD to watch explaining a lot about transplant, and some of the specifics of transplant at the University of Washington in Seattle where I was going. She included a list of tests that had to be completed before I met with the team. Among those was a cardiac evaluation including a two-part stress test, a kidney- ureter- bladder CT and an ultrasound, and a visit with the endocrinologist because I was told my Type 2 diabetes would undoubtedly be worse afterwards because of the meds I would be taking. On the day of the eval, I met with a surgeon, the nephrologist who would follow me post-transplant, the social worker to help with Medicare if needed (it wasn't), the psychiatrist to make sure I was mentally sound (the jury is still out on that one 🤣 !), and of course a trip to the lab where they took 27 tubes of blood from my right arm and another 14 from my left, as some of the tests required repetition from different blood draws!

Throughout the day, we continued to touch base with the transplant coordinator. She told us where to be at what time and gave us a map to get us there. The people were all amazing. At the end of the day, we were told the team would meet on Monday and discuss all the candidates they saw that day. They would make their decision by the end of the week, and I would hear back from them the following week. I heard back by the 15th and was placed on the UNOS waiting list in July, knowing it would be a three to five year wait, and I probably had less than three years left before needing dialysis, something I wanted NOTHING to do with, so I would be cutting it close. (Long story for a different post!) During the wait, I would have monthly blood draws that I had to mail in to make sure nothing had changed. So imagine my shock when I got the call on October 12, just three months after being listed with UNOS!

Everything about my transplant was unusual. If I heard, "Oh, this doesn't normally happen" once, I heard it a hundred times! It's been two years now and it's been a bit of a bumpy road. I was re-hospitalized three times the first year, followed by four emergency department visits the second. I still have labs every three weeks (typically it's every three months at this point) because I can't get a stable tacrolimus level and am still struggling to get my BP under the target they have set, despite being on FOUR different meds for it. My creatinine is not significantly better than my pre-transplant levels, which is disappointing, but I'm learning to accept it. I had to go on insulin following the surgery, something I wasn't told was even a possibility, and I wasn't happy about. Through a lot of hard work and discipline, I have lost 65 pounds since my surgery and was recently able to go off the insulin. My blood sugars are of course running higher than they were, but I am determined to stay off it as I have a genuine fear of needles that never abated the entire two years I was doing multiple shots each day.

As I was told, and I hope you've been told as well, transplant is not a cure for kidney failure. It is a treatment, but it is a darn site better than the alternatives! This isn't the life I imagined, but it is the life I've been given, and I am grateful for every day that I wake up. Living on "borrowed time" tends to change one's perspective on a lot of things. Make sure you have a solid support system in place, not only for your immediate recovery, but long term as well. You'll need them on the good days to help you celebrate, on the bad day to hold you when you cry (figuratively if not literally), and on the ugly days to just sit with you, knowing they care. This community is part of that support system, but you need real-life folks as well. They don't have to have had a transplant, but if you're lucky enough to find a group in you area that meets when you are available, so much the better! Anyone who's had a significant challenge in their life can relate. I wish you all the best! Do what you can to stay healthy now and afterward. And stay in touch here!

[scotlap]

I never spent four or five hours during one appointment, but it did take several visits to finally be ruled a perfect candidate. Providing urine samples started the process followed by several small vials of blood than some CT scans and finally a nuclear stress test. Between day one and the transplant, a total of nine months elapsed before I was able to share the gift of life with an acquaintance who is now a great friend! Call me if you'd like to discuss this further! 970-292-8360

[Gardner-NY]

Great question. Three years ago my husband received his kidney transplant and before that I remember the evaluation process. I was with him and he had three separate meetings at the transplant clinic to meet and talk to different sections of the clinic 'before' the actual tests were set up which took about 4-6 weeks long to get them all done. Some tests were done at the transplant hospital in Vt and some where we live 90 min away in NY, depending on the test. We tried to get as many close to home in NY. After they were done, then the transplant committee met with all the findings of the test to choose whether he could be on their wait list and he was chosen. Does this answer your question?

[littlelinda50]

I had my transplant May 16 2019. I had to have lots of blood tests and see all the doctors on the transplant team. I also had to talk to the social worker. Every center is different on what they do. Good luck!