Any post transplant kidney recipients? (cyst, infect, blood, biopsy)

[Flamingo13]

My husband had a cadaveric kidney transplant 15 yrs. ago and now I'm afraid it might be failing - he is retaining fluid, kidney is putting out too much protein (and other recent bloodwork numbers are pretty bad) - going in for a biopsy on Mon. - I guess I'm mostly looking for support... But would love to hear of any others, nobody has started a transplant thread (that I could find). He has PKD (polycystic kidney disease) which necessitated the first transplant (after he'd had a heart attack and been on dialysis) thankfully, a donor was found. The graft (which he got dialysis through) is long since closed/clogged up). Doc. isn't trying to scare him but we of course are and don't even know what would happen next - ANYONE? with experience(s) with this? I would appreciate any info. TIA

[marlinfshr]

I don't know if this is permitted here but here goes. Google I hate dialysis. It is a forum, like this, that deals with support for people with kidney problems. I have been on dialysis for the past 8 month's and am now on the transplant waiting list. That site has been a lot of help to me and there is a section that has to do with transplant recipients as well.

[Flamingo13]

thanks - I'll check that site out

[Flamingo13]

I'll have to find the site now - his kidney is scarred an dying - functioning at 27%.. when it hits 20% it's back to dialysis and transplant list.

[amberlina26]

Sorry to hear your husband's transplant is failing! I can only imagine how you both are feeling right now. I agree with marlinfshr to check out the ihatedialysis site. When my husband first started out on dialysis, I was scared and that site is great for learning and support. If you are on Facebook, there are groups for PKD, transplant, dialysis, etc. that offer support and advice too. Don't know if his neph suggested it but it might be a good idea to see about getting another access (fistula or graft) placed so that it will be ready when the time comes and he can avoid a chest catheter. If you both are capable, I'd also research doing home dialysis, either peritoneal or home hemo, as the outcomes are better than doing in-center dialysis. My husband has been doing home hemo for 7 months and feels much better than he did for the 4 1/2 years he was in-center. His labs are all excellent and he is just better physically and mentally. Google Home Dialysis Central and it's a website that has more info on both forms of home dialysis.

If you ever need someone to talk to, feel free to send me a message. Prayers that your husband can get on the list quickly and that his wait time on it isn't long!

[Flamingo13]

Thank you amberlina - his Dr. did talk to him about peri. - he told him options are better than they were 15 yrs. ago. I am on FB but honestly just use it to keep up w/friends (and found old schoolmates). I don't know how to find groups... I'm going to try to find this ihatedialysis site now (he was put on prednisone and his blood sugar is way up - 407!!! and he's feeling crappy today). Plan to call the Dr. tomorrow (he just took his first dose of it yest. (Sat.)

[amberlina26]

Options are definitely better than 15 years ago. The machine we use at home is a NxStage machine and it's not much bigger than a large microwave and sits on a hard case that's about the size of an end table. It's easy to set up once you learn how to use it. To do home hemo, most places require you to have a care partner in case of emergency or to help if the patient can't do all of the work by themselves. There are patients that learn to stick their own needles in but some are unable and the care partner does it. In my husband's case, I do all the work since he's unable to. For peritoneal, you aren't required to have a partner but I've read that most people can only do it for a few years before it doesn't work anymore. It's also more of a risk for infection. Have to be very careful.