What do you most worry about?
My biggest fear is going into rejection or having my new organ start to fail. It seems as though rejection can potentially happen at any time, sometimes for no particular reason. I'm not as worried about going through transplant surgery again as I am of finding another donor if needed. I also worry that my uncle, who was my donor, would feel upset if this were to happen even though it would not be his fault.
I totally get you @meghansmith - I worry even when my values are not great that I am disappointing my dad - I need to make his kidney work well since he gave it up...
Hi Karin and Meghan, please don’t worry about disappointing your loved ones for donating to your transplant. They apparently loved you to do this and my guess is they have been aware of what has been happening. I believe if we do the best we can such as drinking fluids, taking anti-rejection meds, getting routine labs then we are doing the best we can. Of course, rejection is always a possibility so I try to relax if I see abnormalities in my labs and contact my transplant team. They sure know who I am at Mayo Clinic in Rochester!
Rejection is always a worry for me now post transplant. I can't even get normal people sick without worrying its something gone terribly wrong. I worry about getting a virus and not being able to fight it off, and should I or should I not go out and expose myself to potential germs, and increased cancer risks and getting cholangitis again (which I had twice).
I worry about spending time in the hospital, and the stress on my family. About my mental health and the toll this entire process has taken on me in ways I may not even realize yet. And I worry about how I'm treated differently because I have a transplant, and all the subtle ways ableism exists in the world, the fact that so many people don't understand. I worry that my partner will leave me, that I won't be able to grow my family, that I won't be able to be successful because managing my health is a full time job in and of itself.
More than I'm afraid of any big medical events, I'm worried about the small tolls my transplant has taken on my life and on those around me. Like its the small chips that could shatter the whole thing, rather than the big events.
I am new to this web site but happy to have found it. I am almost 4 years post op from a kidney transplant and have now gone into rejection. Just spent 9 days at Mayo in Florida having 7 sessions of a heavy IV treatment p (can’t remember the name). My creatinine was up to 2.78 when I started, did finally drop to 2.40 and now after being home over a week has gone back up to 3.40. Will be back at Mayo tomorrow for more blood work but not sure there will be any more to be done. I’m so weak and shaky at this point I can hardly function. Has anyone on here had my journey and had it turn around? I’m female in my mid 60s and fear I may not qualify for another transplant due to heart & lung issues. My mental health is really starting to suffer. Any positive advice or encouragement would be appreciated.
Hi Ms. SJTPatrick, I didn’t have a kidney transplant but did have a pancreas transplant. I experienced rejection at 3 months and then 2 years post transplant. Now at 14 years post transplant I’m experiencing a severe rejection. This one scares me so I can understand your fear. Hopefully things will turn around soon in a positive way. Don’t give up. I’m not giving up. We want to be healthy. Best wishes.
@SJTPatrick i’m not kidney so I can’t speak specifically to that (@Karin @Shelbycreates?) but I do know there are different forms of rejection, some of which are reversible.
this is hard. It’s all hard. Give yourself permission for it to be hard. The best piece of advice for me was to feel my feelings. I let myself have what my therapist calls a bed day. I will lay in bed all day and not focus on anything. Leaning on family, friends, and the community here on TL can also be a huge support. You don’t have to do this alone!
Yep. I resonate with this so much!
I'm so sorry you're going through this right now. It can feel so very scary. Of course, I don't know all the specifics of your case, but I do know that sometimes things are permanent and sometimes things do reverse themselves, even if the doctors can or can't explain it. What's important right now, like Ali said, is to feel your feelings. This is the time to use all the coping mechanisms you have for helping yourself feel better and return to a state of calm (as much as you can). So anything that feels soothing to you. And please, reach out if there's anything more we can help with to support you from afar. Sending virtual hugs!!
Thank you everyone. As expected they put me back in hospital at Mayo when I had only gone for bloodwork. I had packed a bag just in case. I’ve now been here for 13 days. Hoping to go home tomorrow but that’s just hoping. They came up with other treatments that I finished today. Seems all this rejection is related to the CMV and BK virus’s. Both of which I have fought since the beginning. They are still giving me some hope for a turn around but have also mention hemo dialysis. I had used the paritenial dialysis before. Only time will tell.
that's so hard! Long hospital stays are exhausting, and I find once I pass more than a few days my mental health really takes a hit, which is then harder to wrap my head around any treatment or ideas anyone is suggesting. I'm sending you so much love, and please keep us updated