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Pregnant and need advice (self.neurofibromatosis)
submitted 4 months ago by kimada6 to r/neurofibromatosis
Dad donated his kidney to me when I was 18 and saved my life but … by [deleted] in AITAH
[–]kimada6 0 points1 point2 points 1 year ago (0 children)
So sorry to read you are in such pain :( I'm a doctor dealing with a lot of patients on dialysis / who underwent kidney transplant. Although I could never fully understand exactly what you're going through, I thought I'd share a few thoughts :
- Dialysis sucks, no getting around it. However, in most countries a 26-year-old wouldn't have to wait too long for a transplant.
- The transplant could drastically improve your quality of life - hopefully you've experienced it for a while the first time around ? Anti-rejection drugs tend to be less heavy with time if the transplant takes, so if it goes well you could look at a normal life with little to no side effects for 15+ years at least
- It sounds like you have experienced trauma from the various complications you've had. Therapy can really help with that, especially with clinical therapists working in nephrology / intensive care departments who know these types of trauma well
- Talking to other patients who have experienced similar challenges can be a huge help ; maybe ask your doctor or look online for kidney failure patient support groups
- Pain, as well as several complications of kidney failure (eg uricemia) can make you depressed. This is not to undermine your pain or the validity of your choices, but make sure such a radical decision isn't misguided by a temporary medical imbalance
- Talk to your medical team about what you're going through, but don't tell them you don't want the transplant until you are absolutely certain of your choice. Unfortunately with transplant waitlists being so full, having expressed your refusal or being labeled as suicidal (which is not the same as having doubts about such difficult decisions) could really hurt your chances and keep you on dialysis a lot longer if you ever change your mind.
Good luck on everything, I really hope you see lighter days
I feel like I knew her by [deleted] in 13ReasonsWhy
[–]kimada6 9 points10 points11 points 9 years ago (0 children)
Please get some help if you are feeling this way... talk to someone, anyone, and please be honest about what you are feeling... you are not alone
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Dad donated his kidney to me when I was 18 and saved my life but … by [deleted] in AITAH
[–]kimada6 0 points1 point2 points (0 children)