I've been fighting with the BK virus for over a year now. Nothing seems to help. My virema level has come way down but my viuria level is still around 145 million.
I have pretty severe GERD and take a large dose of Prilosec and pepcid daily.
I've had eight back surgeries and have to deal with chronic pain, which is being treated with opioids.
Forget trying to get a decent nights sleep. My BPH has me getting up 5 to 7 times a night for the bathroom. I won't bore you with allthe other stuff I have going on, but I think you get the idea.
I'm not sure how much of my gfr is artificially impacted by the above issues. I'm so worried about losing this kidney and at my age, 74, i think another transplant is very unlikely. I don't even remember my question anymore. I guess I'm just venting.
I hope y'all are doing well.
Joe
Written by
bisley
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Age will not prevent you from getting a transplant. The Cleveland Clinic transplants many people over 70. Your overall health, no matter what age, will impact whether or not you will be listed for transplant.
I’m sorry to hear your kidney function has declined. It’s a fear for all of us transplant patients.
You don’t mention your blood pressure. That impacts kidney health.
I can’t speak to BPH. If this is prostrate, they can do procedures to shave it down so urine can pass more freely so you don’t need to go as often. Speak to a urologist is my recommendation.
depend on the transplant center yes age can be a factor I’m on two transplant list one that is right where I live cut off age is 71 the other an hour and half has no age limit the surgeon told me he just transplanted an 83 year old. They go by the health of the person . So find out if your center has a age limit if it does try to get listed at another one .
Sorry you had some problems I don’t know anything about the bk virus hopefully someone who has experience it can give you some advice it seen having it over a year is along time and your transplant team should be able to help you I hope you get to feeling better.
I’m sorry to hear you are having such a hard time. Vent away if it helps relieve your stress and anxiety. We are listening. Prayers your health improves.
So very sorry to hear of your situation. My husband received a transplant (deceased donor) three years ago. He's turned 75 this year. We've had a very rough journey for a while too - he had multiple utis (he lived in the bathroom night and day) which ultimately turned out to be diabetic bladder neuropathy. He also wound up with a-fib, a ureter leak, shingles (may lead to a corneal transplant), a drop foot, brain surgery, and more. The ups and downs have been incredibly. Today, things have largely straightened out, although not perfect, and we've been grateful and happy. We are blessed he hasn't contracted the BK or CMV at this point. I know Jayhawker and others here has been struggling for a very long time with CMV. All I can say is to stay strong, to keep pushing for solutions and, while doing that, stay positive. I know my husband's transplant has hung in there throughout everything; it wasn't a perfect match and came with a history. But it's functioning well, although the eGFR is low too (in the 30s) and creatinine is near 2. His nephrologist thinks it'll probably bring him into his 80s and other conditions (a stroke, a heart attack, etc.) may take his life before it fails. We, too, sense that this will be his one and only transplant. Sending hugs your way.
Sorry you are having multiple issues complicating your health. I don’t have experience with those issues but hope you get some relief and some better labs soon. Hang in there.
I received my transplant at 70 and was on pd before that for 5 years. During that time on pd I rarely had what if worries but after the transplant my what ifs tended to overtake my appreciation of the ability to have one. I fault that lot to the medication and the constant testing that puts the idea in your head every time but also the lack of knowledge before the transplant of the possible complications. Those meetings you attend before transplant are always rosy and pure positivity but the reality is different for different people. Some more severe than others. Also as you get older, turned 75 here, no matter your limitations you constantly need to enjoy life but that becomes harder at times when you body says no and your mind says yes. And also sometimes as you grow older you become less social because you are no longer working and family and friends have other commitments. That is why this forum is so important to share your thoughts and know someone is listening. One of the good things about getting older is the strength that comes from experience. You somehow know that life is a constant test of the person you are. The people on this forum have been tested time and again and they are constantly looking for the right answer to the problem. But sad to say there are others not on this forum who have given up and are not looking for answers. Reaching out to others in that situation may be the next step in control of your own problems. Sometimes the answers come to us from the least anticipated source. Take care and keep sharing. We are listening.
vent away if it helps. I’ve had numerous issues after transplant also. I had very high BK virus levels weeks after transplant they stopped the celcept and I’ve never gone back on it . BK levels are good now 4 years later. I’m only on prograf and steroid. I have steroid induced diabetes and ulcerative colitis since the transplant and recently been suffering with chronic lower pain that travels to the top of my back . And the fatigue is relentless! So yes it’s not always roses and it’s frustrating when people think you’re cured since the transplant !
Hi Winner76, I hope you don’t mind me butting into your conversation. But I am on my 2nd round of ulcerative colitis and have been told by my nephrologist that there’s no treatment they can give me other than stopping my Mycophenolate as they think this is the cause? I’m so worried that I will start rejecting as I was told that it wasn’t a perfect match and my body will start attacking my beautiful new kidney donated by wonderful husband. Did you receive any treatment options? And is your function remained stable?
All I can say is wow. I'm still trying to get back active on the list but I'm having second thoughts. I do in center hemo and it's working well for me. I'm 60 and in relative good health altho I got a stent in Aug for coronary artery disease. I still work full time and feel good 99% of the time. So with all the issues that could...COULD happen with a transplant I wonder.
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