Source
r/kidneydisease•
wegeners

riddled with anxiety

hey! I'm 24 and got my first kidney transplant in 2015. I was wondering If any of you also felt a constant anxiety about losing the transplant? every time I get a headache (and I have hereditary migraines) or feel a little queasy or anything I am terrified of the illness relapsing. I tried therapy but the therapist basically said "don't worry about it, you're fine and others have it worse than you", which I know but anxiety defies reason.

Posted Dec 31, 2019, 8:34 AM UTC

146
MrsAlder•

I got a transplant at the end of 2015 and I feel the same way. It especially bothered me at the beginning but most crises (one caused by the level of toxins caused by taking prograf long-term and one caused by an allergic reaction to the new med) were resolved. My levels over the past year have been stable and that’s helped. I know that my illness probably won’t recur (endometriosis on my ureters which resulted in silent kidney loss) but I know that at some point it will wear out.

My best trick is to just take it one day at a time and to take control of the things you can control like taking meds on time, eating healthily and some exercise.

It’s insensitive of your therapist to dismiss your fears as they are normal. A transplant isn’t the same thing as a cure. It brings a whole host of other issues including a fear of rejection or a recurrence of your initial illness. Have you considered finding a new therapist specialized in transplant recipients or a more specialized forum with people who have been there, done that?

Good luck and happy new year (with nice, stable blood results and kidney function).

6
wegenersOP•

Thanks for your kind response! I'm nor aware of any specialised therapy (at least not for this) where I live, but will try to find someone new in the new year. My cousin has cancer and said that her therapist is great, might try to get a booking with him.

I will say that I struggle quite a bit with exercise (and sometimes a balanced diet) since my original illness is Wegener's granulomatosis (they renamed it to granulomatosis with polyangiitis and my lung function is not the greatest either.

2
SymphonicZephyr•

Oh my goodness! You're therapist sounds.... Not helpful! I haven't gone through transplant, but am very close to beginning my journey on the wait list. I can only imagine the anxiety you deal with. There are a lot of variables at play, and I wish you had a therapist that was able to help you with your (very called for) concerns. From what I've read and been informed, there is a shelf life on the transplanted organ. I hope you can find a better therapist that can work with you, instead of writing of your fears that they should be helping you with! I also hope you have a good support group in friends and family.

6
wegenersOP•

Yes, thankfully my family is the best! Would not have made it this far without them. (Literally, my mom gave me the kidney) I put off therapy for a while after the negative experience but will try again in the new year.

1
SymphonicZephyr•

I'm so glad you have support. I hope you're able to find a good therapist this year.

1
TheJMatt•

Almost 5 years with my transplant. Still get anxiety everytime I do bloodwork. What sucks is my creatinine goes up .1 everytime I do bloodwork. When I first got my transplant I was at 1.4 now I'm at 2.1 5 years later. Not terrible but slowly declining. I have bloodwork in February to see where it's at again. I hope I make 10 years with this thing but who knows

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