hello, I am quite young but will need a kidney transplant most likely within the next year. I wanted to know what should I expect? At my age would I need probably a second kidney? How long will the kidney last generall? my living donor may be 57 and I am 34.
Thanks!
Hello Boxing,
Good luck with your transplant!
Look after yourself, take your drugs as directed, keep fit, eat well, and follow the professional advice etc … you will give you and your kidney the best chance at success.
I understand your concerns as I was 33 when I had my transplant. I’m now nearly 56 and it’s still going really well. I work, play sport, walk the dog daily etc, etc. I lead a normal life.
If you want some real inspiration, I recently played in a transplant badminton tournament with a 69 year old friend and he’s had his transplant (from his father) for 51 years. There is hope.
I wish you well.
Hello thanks for your response this is very inspirational! Was you’re a living donor? My living donor might be a 57 year old lady and I am a 34 year old man I wonder if that will impact the longevity of the kidney according to the docs it shouldn’t do. How was your first year after transplant?
While there are no guarantees & lots of variables on the match etc I think the key thing is that you’re being offered a living donor transplant so the average success rate will be higher. The following is on the UK NHS transplant website:
“On average, a kidney transplant from a living donor lasts for 20-25 years, while a kidney from a deceased donor lasts 15-20 years. This is very variable depending on the age of the donor and patient, and other medical issues. Please speak to your kidney care team for more personalised information.”
Mine was from a deceased donor so I am really grateful to have successfully made it to 22 years with no major issues.
In my experience the first year was full of lots of ups & a few downs, adapting to the drug regime, being able to be more active again, battling with my weight due to steroids, getting back to work etc. Go with the flow, do as you’re told, be adaptable, look after yourself, and enjoy your second chance 👍
Thank you so much! I am very grateful I have a potential match. So was you on dialysis how was that? I guess at some point I may end up on it as I am young.
So my current egfr is 40. But my half kidney has to come out due to tumors (genetic condition). What did you egfr go to with the transplanted kidney?
That is almost exactly my son's scenario. He was 38 and his living donor was a 58 year-old woman (my best friend) when he was transplanted six years ago. The only challenge he has is the size of her kidney not her age. His creatinine runs about 1.9 as the transplant team said it would but with no true health problems. He has had six years of so much better health and is still going strong. Best of luck with your transplant!
Wow so he has normal creatinine now that’s so good! Was your son on dialysis before this? How was it for him? I am hoping I will be able to come off my BP meds with the transplant as I ended up on them due to the lowering of the kidney function.
Creatinine isn't quite normal but it is his baseline (1.9 to 2.2) We will take it! Yes, we did clinic and then home hemo-dialysis for a little over two years. My son also had an aortic dissection with aortic valve failure when we discovered his kidney disease so he has other issues needing a BP med. His auto-immune kidney disease has also returned so technically he is still has CKF, but he is off many of the meds he was on prior to transplant. The anti-rejection meds and low-dose Prednisone have given him a bit of trouble but nothing like he had. He is doing so much better. His living donor angel is doing well too with no problems. She says it is the best thing she has ever done in her life. Wishing you the best of life and medicine, Kidney Warrior!
Thank you for the detailed reply and I am so glad he’s doing ok and I hope it may continue! How was the dialysis? At my age 34 I assume even after transplant at some point in my life that’s where I will be so just out of interest wanted to know what it’s like?
Has your 75 year oild living donor undergone any testing at all? A simple CMP test will show basic kidney function. GFR declines with age. If their GFR is not 85 or above, transplant not likely. Do not count on anyone being healthy enough to donate even if they appear to be in good health. . Only 1 in 5 candidates passes the health test.
hello, do you mean my 57 year old lol. Yes they did do cross matching tests and bloods in 2018 and they came out as a match and got 5/6 score. However, it needs to be re done now as now the kidney remaining I have needs to come out. Yes egfr is over 85.
Thanks for this reminder though! How has your journey been?
I was in for my transplant 10 wks ago, and I met a gent who'd had his first kidney for 34 years. He was in for his second transplant. I hear stories of more than 20 yrs. Unfortunately, there's always the other side of the coin. I'm rolling the dice, here.
Yep that’s what scares me you just don’t know what you’re will last too especially when your young at 34. Congrats on your transplant! How’s your transplant going? My blood group is O and apprently that’s longest on dialysis because we can only take from O
Actually, it goes good. Numbers are stabilizing, except for Tacralimus. That'll take forever to sort out, from what I've read. I'm not taking a whole lot, though, so that's a plus.
II just replied to your other post. I am so glad you have a matching donor. Since it has been a while, they probably need to re test her so that she is in good health to donate. My main advise is get informed about your condition, transplant, kidney care, antirejection medicines, side effects, insurance coverage, getting Medicare due to teanaplant, etc. I would go straight to transplant , skip dyalisis if possible. I am not sure if you are in the states and using the same scale, but GFR 40 sounds really high. I entered the list when my GFR was 18, and I had my transplant when it was 9.4. I read to wait till it was close to single digit as long as I was doing well. I consulted with my nephrologist all the desicions.
Side Note: look for my older posts, you may find more about my journey. Reading the other people stories in this site is enlightening. Sometimes it is scary, but many other times, it is inspirational and reaffirming.
Hi thanks for the response. So I have genetic tumor condition called Von hippel lindau syndrome I don’t have “kidney disease”’ meaning kidney keeps detoriating. This means basically I develop tumors in my kidneys. Due to this my right kidney has been removed and my left has had surgery on it. So I have half a left kidney left function at egfr but I have a 2.5cm lesion in there that will need to come out at 3cm hence why planning for transplant. I am based in U.K. England. The egfr 40 has caused my BP to go high so I am on 150mg Ibersartan to control it. I am hoping with a transplant my function will get better. The good news is the new kidney does let develop the tumors I am getting in my kidney due to the genetic code being diff
I reply to your other post glad you have a living donor . Sending prayers all works out for you.
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