Preemptive transplant

[horsie63]

For those of you with preemptive transplants, did you get started as soon as you could? My last lab was in Mar and I was at 22%. I've been dropping now for months and have labs due end of May where I think they'll be at 20% or lower. Other than being tired I feel ok and have started back working out again. I'd rather not start dialysis if possible. Were you glad you did it?

[Okie01]

I had preemptive and I’m so glad I didn’t have to have dialysis. That was my worst fear up until surgery that I might have to go on dialysis. My nephrologist wouldn’t let me start the whole transplant process until I hit 20% and we started to process ASAP. By the time I got my transplant, I was at 14% but was feeling well enough to not go on dialysis (just super tired and weak). Though I would’ve needed to start it soon if I hadn’t had a date for transplant. And I was told that a transplant works better if you didn’t have dialysis before. Overall, I’m very happy I didn’t do dialysis. It wouldn’t have added any quality of life for me.

[Transplant2018]

I also had a pre-emptive transplant and I am extremely grateful I never had to go on dialysis. My eGFR was 15 when I was transplanted. I had chronic fatigue and high blood pressure - both of which immediately disappeared following my transplant, when I felt healthy for the first time in a long time.

[steeens_]

I had the same experience! I was hovering around 20% when I unexpectedly received my transplant 6 months ago. Although there have been quite a few ups and downs, I can’t imagine being on dialysis right now. Other than the adjustments to the medications, my life has pretty much gone back to normal (but now I don’t feel like I’m going to pass out all the time). Also, getting rid of the feeling of not knowing what was going to happen next has taken such a large weight off my shoulders. Hope this helps!

[tas1kubra in reply to steeens_]

Gosh, I hate that feeling, the anxiety of eating anything, the anxiety of visiting a doctor, the anxiety of collecting 24-hour urine.

I know about my disease for 1.5 months now, and I still couldn't adjust it. It takes my mind completely, I can't focus on my daily tasks. Knowing what's waiting at the end of the road is really unpleasant.

[Herkidney]

I became eligible for a referral to a transplant center when my GFR was 20. From the date I was officially accepted into the program until I had my pre-emptive transplant was almost exactly a year. At the time of transplant, my GFR was around 9-10. I was fortunate enough not to need dialysis. I consider myself extremely lucky to have had a transplant and would absolutely do it again.

[DexterLab]

Same story. My PKD kidneys were doing ok until they weren't. I was ok with a creatine level of 3, which took 20 years to get to. Suddenly it started climbing, 3.5 in July and 4.5 in January. My nephrologist sent me to the transplant center that July, made it to the transplant list late September. Both the nephrologist and the transplant center advocated for a living donor and getting it done before I hit dialysis. Asked at my church for a donor, ended up being the pastor. Transplanted 3 years ago in February and was better in 4 days. I would do it again in a heartbeat. There was no question that I was going to kidney failure, and a pre-emptive transplant avoids getting sicker and has a better quality of life than being on dialysis.

[Powerfalcon]

This is just my experience. My mother was on dialyses for twenty years and I was determined not to go on dialyses. Because I had a willing donor ( yes , boy am I grateful to her ) I waited to till my nephrologist said it was a go. Thank goodness. While I felt pretty good when I went into surgery, I also had amazing turn arounds. My blood pressure went from high to low, my osteoporosis got better ( they can’t figure that one out) and while the medication and covid has been extremely challenging, I am so happy I got it. I notice that now that it is “semi over” I have less need to discuss it. I just think about it less. I don’t like to keep secrets but I also don’t feel compelled to identify as a disabled person. It is very personal. I want to model health and strength to my children in their twenties since they have a 50% of getting PKD in middle age. I honor whatever you feel is right for you. I think it is important for me to show people that we can live a good life. Good luck and just know, whatever you do is the right thing.

[horsie63]

Did everyone have living donors? I'm not on social media and don't belong to a church so I'm not sure how to "advertise" for one unless I do it through my work. I'm an introverted person and cringe at telling people I need a kidney. On the other hand I'd rather not do dialysis or die. Once I hit 20 and get accepted I'll put the word out at work and if I have to I'll sign up for facebook and whatnot. Thanks for your comments.

[Okie01 in reply to horsie63]

I had a living donor from my church. I told everyone through Facebook and Instagram but I imagine it would be difficult to find a willing donor, let alone a matching one, without those resources. With your situation, it might be better for you to start getting the word out earlier and give people time to think it over since you have a small pool to work with right now. My transplant center actually told me to make t-shirts with the most important info about organ donation on it and wear those around to try and find someone (I didn’t end up doing this but it’s a good idea). You could put your name, age, blood type, phone number, etc on it to advertise to a wider pool of people.

[Alfredmynewkidney in reply to horsie63]

I had a deceased donor. I had about 10 people tested. (Close family and friends who volunteered I didn't ask) I was like you and didn't advertise. But maybe I should have. And maybe I would have if I was about to go on dialysis. I did look at same websites but I did not sign up

[PKDpostTRANSPLANT]

I definitely recommend starting the process as soon as you hit 20%, esp if you do not already have a live donor. The wait time for a deceased organ can be long. And I also recommend trying to find a live donor, even though it is very uncomfortable. I was in the exact same position, I applied when I was below 17 (just because I dropped from 21 to 17). I had no live donor and for my blood type in my area I was told the wait would be 5-7 years. I started asking friends, family, and church and praise God I was able to get a live donor, about one year after I first applied. She happened to be the first person that was evaluated, so it happened quickly once I was accepted to the program (which took me 7 months). However, I'm sure it could take much longer if the people that try to donate are not accepted and you have to go through several possibilities. Even if it happens quickly, I have read that you tend to have better outcomes with preemptive transplants. The only real downside is possible losing some time with your native kidneys, but when you weigh that with the risk of possibly having to go on dialysis, I personally feel like it is worth it. I MAYBE could have stayed off dialysis for another year, but I also MAYBE would have been on dialysis for a year had I not gone ahead with the process. I say go for it!

[PKDpostTRANSPLANT in reply to PKDpostTRANSPLANT]

I should also say that I was at 14 when transplanted and that was with the first person that was evaluated being my match. Could have taken longer if that wasn't the case.

[lkhenderson]

I had a preemptive transplant almost 4 years ago. Over 7 years my disease progressed and when my sustained GFR hit about 18%, I was referred to my transplant center for evaluation. I was approved for transplant in September, my husband was approved as my “swap” donor in November and by the following July we along with 4 other strangers all participated in a swap donor program with 3 donors giving to 3 recipients. My GFR was 10% at transplant and I was knocking on the dialysis door. So so thankful that I did not have to go on dialysis. I highly encourage you to move as quickly as you are permitted to do so and securing a living donor organ is overall a better outcome too and you avoid dialysis. Good luck to you, you got this!

[Jepsos]

Yes!!! I was on the transplant list for 6 years, but I only started dialysis 1 year ago. I got my kidney transplant 4 weeks ago. I could not imagine being on dialysis for more than a year or two. I had too many awful side effects - allergic to dialysis fluid, catheter issues, etc…

[Alfredmynewkidney]

I had a preemptive transplant and so glad I did. I was listed with a 3-5 year wait and was getting close to needing dialysis. I got lucky and and got the call after 1 year!!! So glad to have skipped dialysis. I was able to continue full time as a NICU nurse working 12 hour shifts. I will admit I wasn't feeling awful, just tired. I have PKD so it was inevitable. I think I recovered quickly because I was still "healthy" when I received my gift. Good luck to you!

[horsie63]

Mar 2022 and May 2022 my eGFR is 22 so I still have a little time to learn as much as possible. I meet with my nephr Jun 7 and have already requested a renal dietician. They've upped my BP meds and so far that seems to be helping so maybe I have some time yet.

[horsie63]

Seems like I didn't have time...I'm now at 17 and my neph just referred me to the transplant center so the waiting begins.

[hope1419 in reply to horsie63]

Youbstill have time to get a preemptive transplant. Process your feelings, accept that you need to "ask the question" and you may get lucky. I first triedasking directly, and that didn't work. Too much pressure. So, I got listed first, Then, I had a local newspaper interview. They did an article , i included my transplant center info and my case number, so people could call without having to contact me. They felt less preassure that way. 3 peoplw tested, and I got a donor. I have not sone the transplant yet, and I am at 13 GFR.