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As I said I was fortunate to have a family donor. It hasn’t been quite 3 months. I didn’t go on dialysis before transplant my GFR was 20, but I was beginning to feel the decline. I am 72. Has anyone with PKD transplanted at my age? BK virus has raised its head. It in urine but not blood. They have currently reduced drugs to get my white blood cells up from 1.3.
Thanks
I've noticed a number of seniors are receiving transplants now. My husband was 71 when he received his transplant; he's 75 now and it's performing well. Thankfully, the BK virus didn't pop up with him - but my husband was on fungal meds for a time. (He agreed to accept a high risk kidney from a deceased donor with fungal issues.) Regarding BK, I understand that lowering your immunosuppressants to control it is routine protocol. Hopefully, others in this community will respond with their experiences and views too. You'll have some ups and down for a while until things are at their optimum. Hang in there!
Hi ,
Congratulations on your kidney. I am not your age but got BK very quickly after transplant. My doctors actually took me off one of the immune suppressants completely and it worked. Brought the BK levels right down and I never went back on it . I’ve been on Tacro and a steroid only for the last 5 years. I hope you get it sorted .
Good luck
I received my kidney at age 75.My donor ( mysister) was 70.
Hello, My spouse was diagnosed with PKD at age 30 while on chemotherapy for Hodgekins lymphoma cancer a CAT scan showed the PKD we did not know was there. He has been in remission from the cancer for 29 yrs when his GFR was down to 13 and he'd never been on dialysis and received his donated kidney at age 59. He had many serious problems the first 14 months including a rejection, then COVID-19 arrived and we still live like the pandemic is here now in our isolated lifestyle. It is over 6 yrs now since rejection, hemoglobin problems, CMV virus and a few other things I forget; your doctors in transplant are so important to your health in this transplant journey to get you feeling so much better. I wish you the best. I could write more, but will cut this short. Everyone's journey with this transplant is different is what I have learned reading this blog/website.
I to live in isolation even before transplantation, since covid. It is a challenge in mental health for me to be in group situations, even with family, it’s sort of like fight or flight. I am a single person so that even seems to make it worse. I wish I could find a happy medium, and have some human contact among family and friends. I do all my meds exactly as prescribed and l am very attentive to my doctors and staff, they are great. My meds are continually being adjusted, its still early in the game, i hope I can eventually find peace with my situation and begin to enjoy life more.
How long have you had your kidney transplant? All you wrote I resonate with. We have been married over 40 yrs, no children and lived in our current home over 25 yrs. We both have depression due to living isolated and other reasons due to the negative many side effects my spouse with the transplant has since day 1 taking the meds. His 3 nephrologists know all his issues and there is no fix. Possible med or doses of a med were already changed without resolution. I am the healthy wife, grateful too b/c I am doing more and more as my spouse' fatigue issues and more worsen. The newest brand new challenge is 6 UTI's in 10 wks and next week we'll know from lab work if the bacteria causing them is gone due to 6 weeks on oral high dose antibiotic "Cipro". Xmas week he was inpatient in a local hosp on 5 days of IV antibiotic that did not work either on this bacteria. Leaving the hosp going home he was positive covid19 and 24 hr later I had it---first ever. Medical staff caring for him refused to wear a mask though we asked repeatedly. I'm an extrovert and my first ever in life depression started 5/2020 due to working from home. I have given up all my many nonprofit committee work and group art meetings which are always 'in person' and don't see friends in their homes nor they enter mine. Everyone for 2 yrs now have been living life like covid19 never was here and I feel too uncomfortable being around them, so I rarely see them even outdoors anymore. Life for us is existing since his transplant and not living. I am out of answers. I find that people are quick to judge how we live. I respect people's choices in how they live and wish they would support ours. We have no family near and for years rarely hear from them anymore either. I communicate with people by email mostly and often.
I completely understand your situation. My transplant date was January 17, 2025. Most people don’t even try to understand the risk a transplant patient is up against. My own family, some of them, will drop by with no mask. I have to grab one, I literally have to explain why, as well as defending “ my space”. I hope I can sort things out when the meds are under control, I have had the first UTI in my life as well as dealing BKV. Thankfully it’s not in my blood . I wish I were better at distracting myself to get my mind off things. I hope to get to a point to continue my volunteer work.
Wow, so so new you just had the transplant surgery. It is a learning curve when you receive this "gift" on so many levels. I used to do tons of volunteer work and planned to do more when I retired from a college job of 23 yrs three years ago; but not doing any of the plans I had now. Anyway, Stand up for yourself and know you are not alone in your challenges. Write any time. hugs
Receiving a transplant I have found at a later stage in your life can sometimes have special problems, particularly due to medication. I received mine at age 70, and like many who attended pre transplant meetings, i was told a transplant was going to be great. I was on dialysis for 5 years, and I can honestly say I had fewer health problems than after I received a transplant. When you are older, you are usually already taking medication for health challenges due to aging. It may be your heart, your stomach, your eyes, etc. Adding toxic medications and steroids can bring on additional problems that affect your bones, your nervous system and etc. At 75 after 5 years transplant, I have experienced some of those negative side effects. You start to wonder if your pain and health problem are due to aging or the transplant medication? However, in the final analysis, you stopped wondering and the move on. As they say, there are no guarantees in life, and there is no redo . You make the best decision you can at that moment and hope it has a good outcome. Maybe that comes with age as you realize that you have more years behind you than before you.With all that said. Wishing every one a happy Easter.
Hi again. My husband with a transplant (and sitting near me) advises this: "My life is pretty normal. Of course, there are more doctor's appointment. My nephrologist's latest comment was the donated kidney would likely outlive me. Just make sure to eat well, exercise daily (walk, fitness routines), keep your mind active, find a hobby, distract yourself from dwelling on the aging process. Don't give it any oxygen. We socialize with senior groups to get out, make new friends. We recently planned a 3-hour train excursion, we attend local concerts and college plays Work on getting your life into a normal pattern. If you don't do something along those lines, depression occurs. If that should happen, get professional help - seriously. I still advise and consult for clients on a limited basis. If that's not available to you, volunteering is good! Get out and live after your immunosuppressants are at their optimum levels! Make it a priority to put worries aside and enjoy life.
I appreciate you taking the time to respond. It is the best of advice. As soon as my meds are leveled out, I’m going to push to make your advice happen. Seriously, thank you .
A lot of talk of BK. I never realized how prevalent it is. I had my transplant 11 years ago and have been living with BK almost the whole time. Unfortunately, my transplanted kidney was severely damaged by BK. It's still plugging along. My creatinine hovers around 2.5 and pretty much has been for almost 11 years.
My team had me on an IV med for a year, an antibiotic for years, and finally lowered my immunosuppressants which finally helped. Right now I'm on 2.5mg prednisone once daily and 4 mg of tacrolimus daily, 2 am 2 pm.
I had my transplant in my at 45. I'm 56 and will hopefully receive a second before dialysis
get rid of Bk and your count will go up - 20 isn’t that bad . Look for a really good kidney as you’ll probably only get one - wait as long as you can you should be feeling ok with a count of 20.
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