Initial Transplant Eval

[PeaB4YouGo]

I live about 250 miles from my transplant center. My appointment times started at 0730. The center works with a place called Restoring Hope Transplant House. For a small fee (probably 1/4 what you'd pay at a decent motel), they'll put us up for the night before my appointments. Essentially, it's Ronald McDonald House for transplant patients. They serve not only kidney patients, but cardiac/pulmonary, hepatic and other transplant patients.

We asked the transplant center for a referral and reserved one night, then drove in the day before. I'm a former long-haul truck driver, yet I was near wore out after the drive.

So, at 7 o'clock the next day, I started off in Radiology. A couple of chest x-rays later, and I'm off to see a progression of RN/BSN/PA and lots of other initials, including MD. There was the initial visit with the transplant nephrologist. A couple pokes and prods, as well as reminders that pot smoking isn't a good idea after transplant due to mold issues (I have never considered that.) Then, the doc was replaced by my pre-transplant coordinator. She explained all of the ins and outs of transplant planning, including looking for a live donor and how to navigate my insurance company to get what I'll need in meds and etc...

It was at this point that my wife and I were told about a policy which states that I need to remain within 30 minutes of the hospital for 30 days!!! I had NO idea how we were going to afford the Transplant House, even at their low rate. It turns out that the transplant center rents out a block of hotel rooms downtown, and they have a free shuttle that runs from the hotel every hour. WOW! Bonus!! And, it doesn't cost me anything out-of-pocket. The hospital sends a bill to my insurance and they pay for it as part of the transplant process.

And now, it's time for the Nutritionist, who tells me about the various types of diets I may be required be on. I have no real requirements right now, but I have an idea of what to do once dialysis starts.

Finally, there is time for the social worker. She has info on community aid agencies, pharmacy discounts, support persons, and NKF (National Kidney Foundation, for you out-of-towners).

Then, if was off to visit the vampires. They took 14(!!!) vials of blood!!

Then came time to drive home. 4 hours and deep conversations, and we arrived.

One of the things I take away from all of this is that I don't remember my mom doing a lot of the things that I just outlined. Of course, I was 11. What did I know? She got my little brother and I involved with her diet routines to let us feel responsible. I went along with her to dialysis during my summers for a couple years, then she received a transplant in my freshman year of high school. I don't recall any restrictions for distance. We lived 90 minutes from the transplant center; the same transplant center I just visited. We'll keep it in the family.

So, that was my adventure. I'm sure that most of you have gone through something similar. I have an entire list of things that I need before I'm entered into UNOS. 3 different kinds of CT scans, an MRI, an ECG, a stress test, and a visit to the dentist to sign a paper saying my mouth is infection free.

I learned more than I anticipated. I have about a million questions I'd love to ask my mom. She died within a year of her transplant. I'm just now getting a taste of what she went through.

[bumblebee_tuna]

I've done the transplant evaluation three times by now, including the 14 vials of blood. And then they usually bring you for further testing every year and take some more blood... Every center is a little different but your description is spot on.

[Herkidney]

I’m five years post-transplant. I think the reason the transplant center wants you so close to the site during the first 30 days after surgery is because you’ll have multiple medical appointments per week during the first weeks of the surgery. Traveling that kind of distance several times a week just after surgery would be very challenging. Best of luck to you!!

[bestmom247]

So sorry for your loss. I live 3 hours from the Mayo Clinic and they have the samea rule. It is that was because during the first 30 days you will have appointments nearly every day at first and then they will taper off. That is why you have to meet with a Financial person during your eval. Tnhey want to make sure you can afford to go forward or provide you with information for help going forward. I just celebrated my first year on the list with the Mayo Clinic and also just got approved by Halifax, so now I can just sit and wait for a kidney.

[nonna70]

Thank you for the detailed description. I wonder how many centers have places for folks post-transplant?

[Hawaiilover]

Yes this sounds very familiar. I was overwhelmed with all the testing and information but thankful they were being so thorough. I did not have to stay that close after transplant. I am now 9 mths post transplant and doing well. Take 1 day at a time.

[Bassetmommer NKF Ambassador]

I just posted my journey with getting on the transplant list. For me, the first round of testing was five months. It was a lot of waiting around, doing the test, and then waiting around for the answer. Back in 2021, the answer was not good and I was not listed. I just redid many of the heart tests and others and now I am finally on the list here. They really make you go through a lot, but I ask why and they do have reasons for everything. Wishing you the best of luck and have patience. The end result of a transplant is a gift.

[Camppy3]

I had my Transplant last July, from a living Donor. You probably have to be close so if you are getting a non living you can get there fast. There is a lot of things you have to go through to get accepted for transplant and then after to get ready for transplant. 14vials is not bad, I have had 20 something at 1 time, that was before and after.I am not fond of needles, it has been all worth it! Good luck with your transplant.

[ILMA54]

I hate to brag, but... they drew 30 vials when I went in the first time. Likely, they did so because I have had issues with blood clots. To add insult to injury, I had to do the stress test after the blood draw.

This can be overwhelming, and we have had to deal with some version of what you experienced. Know that you are not alone. I often had to remind myself that the protocols they have developed are there to maximize the success of my transplant, and they are as invested in the success of the transplant as I am.

Every transplant center must do things slightly differently. Because of the number of tests and scans involved in the work-up, my transplant center had me come down for the day (I live 180 miles away). The day I started with a one-hour orientation for those of us who were being tested. In addition, they scheduled every test I needed while I was at their facility to avoid having to go to a million separate appointments.

I got my transplant in July 2021. Maybe it was because of Covid, but I did not need to stay within 30 miles for the first 30 days. For the first four weeks, they sent in a home health nurse 2X per week to do my blood draws. My transplant coordinator had access to my MyChart file to see the results. You might check if this is an option for you as well.

I had an appointment at two weeks post-transplant. They removed my stent, but because I could not pee, they had to reinsert the catheter, so I returned at four weeks and six weeks.

My post-transplant coordinator was my primary contact after my transplant. I e-mailed her 5x per day with questions for the first few months.

I am not sure if your transplant center has a support group. Mine does, and we were by Zoom once a month. Attendees include folks who are pre- and post-transplant. There is a lot of wisdom in that meeting, and you may find it helpful.

[PeaB4YouGo in reply to ILMA54]

Luckily, I don't have to travel for the tests that are req'd. They are letting my local clinic do the tests and getting results on MyChart. I was sure to bring that up during our meetings, and it was a relief.

[Beachgirl32]

Good day yes the eval can be very long and tiresome . I know next week I have to go through a list of test again. I been on transplant l two and half year . One test I didn’t have to do at beginning was a heart cath cause I wasn’t on dialysis at the time. They didn’t want me to have the dye. My transplant team said over 65 you have to have it so that will becoming this year. I know when my brother had his transplant in New Mexico he lived four hours away . His transplant team found me a hotel with shuttle to the hospital and he stay at the hotel after I know I stay with him two weeks and his friend another two weeks so yeah close to 30 days. I hope this is a quick journey for you I’m still waiting I know I’m a hard match I knew nothing about antibodies but found out my are high is why I’m a harder match we are always learning in this journey .blessing to you my friend

[6V53]

I had a 3 hour flight between where I live and the transplant center, so I knew I would be staying a while. I have had evals at 3 different centers and they were all slightly different.

I also appreciate the nice description. It would have been handy to have a little better idea of what would happen. Thank you, hopefully it will be helpful for others as they prepare for evaluation.

BTW, I did get a kidney last year. I got a call and had to be a plane within so many hours. When I got on the plane I was 5th in line and expecting a quick 2 day vacation to the big city. When I got off the plane 2 had dropped out. I was told to report to the ER npo at a certain time. When I got there another candidate had dropped out, leaving me number 2 in line with 2 kidneys available. So, I recommend going (if it is a good kidney that meets your threshold for KPI) even if you are not going as primary.

[Bunkin]

I’m so sorry for your loss. For sure it can be overwhelming all you have to go through. I finally had to tell myself quit thinking about all of it just go do it and be done with it. I tend to overthink.

[Darlenia]

That's a great description - so clear, organized, and humorous! I hope others find it useful. It's nice your center is is doing most of the required tests on their premises. Only a few were done at our center, my hubby was simply told about the remaining tests required and given a three months deadline to get them all in for evaluation by their transplant panel. The initial consult only last an hour or so. After we left, we had to scramble around to find doctors willing to do the procedures while we were coping with dialysis and more - and this was in the middle of the Covid epidemic when some hospitals didn't allow colonoscopies, etc. However, it all ended well! My hubby received a deceased donor kidney within the year - June 2021. We lived two hours away from the transplant center. Our center had a wonderful college-owned hotel that we stayed at....the transplant doctors simply wrote up an "order" for us, we took it over to the hotel, and were given a room. It was charity supported - one paid what one could afford. It's good that your center told you to expect a 30 day stay...it's better to plan to stay a while and go home early than to do the reverse. We often don't want to think of complications, yet a fair number of transplants require close monitoring. The good news is that very few transplants are lost, they just take some tweaking. I was struck by the fact your mom also had a transplant when you were just a small boy. You will definitely feel close to her now - more than ever. May her spirit look over you and guide you along this new journey! Keep us posted!

[hope1419]

Hi. You brought memories about my evaluations to be on the UNOS List back in 2018. I got on it about 5 months after I started the process. When I started my GFR was about 18. It was about 14 when I entered the list. I kept postponing dyalisis. Iread and asked and founf out that ther had been people who waited until their GFR was 7, othwrs started anytime under 15. I hate needles, so dyalisis was a last resource. I prepared for the peritoneal dyalisis when my GFR reached 11, but didn't get to get the "hoses installed". I was determined to find a donor. So, I read about how to ask as my time started to built on the list. A friend gave me an idea of getting an article in the local newspaper and Bingo. I found a donnor. I managed to keep my GFR around 13 during 4 years. I got transplanted 6 months ago. My GFR was 9.5 on the day of the surgery; and now it is around d 55 and 60. This is a very simplified description. The whole process has been a 5 year journey, but I have learned a lot and I am so thankful for my new chance. Bottom line, determine if dyalisis is what you want. I you can avoid it, manage with meds and diet until you get a transplant. Chances of succesful transplants are greater if you bypass Dyalisis, even higher from a live donor. Good luck in your journey!