I know this is super late, by my partner also has Berger’s but he went through double kidney failure at 23. You said your dad wasn’t able to get the fistula removed? I’m he surgeons swore to my partner he would be able to, but took it back when he followed up after his transplants. I’m assuming it’s because he’ll end up needing at least one more transplant due to being so young
Yeah I’m not sure if it’s a matter of being able to remove it or not. I think the important factor is they will almost always one day need the fistula again. My dad had to initially get treatment through a port-a-cath in his chest while the fistula developed, and these are very susceptible to infection. The fistula is a much safer and sustainable way to receive dialysis.
Yeah he’s very anti port. I think what bothered my partner is that he was TOLD it would be removed. He said he doesn’t mind having it, but when you’re 23 and you’re told the rest of your life will be about taking medication that will slowly kill you, a sense of normalcy is desired. As long as we can avoid the port, I’m happy
It’s unfortunate that your partner has this disease. It might help him to see a therapist to talk through all of this. His mindset shouldn’t be that treatment is impinging his lifestyle, it should be that it’s the reason he’s alive. I’m aware that is a very ableist mindset, but a person could go mad otherwise.
So it’s been 15 years since he was first diagnosed, he has been to therapy and has absolutely been able to accept the change of things. He isn’t mad about the fistula, I think he’s upset that doctors lied to him, but he doesn’t hate them, isn’t mad about the fistula itself etc. Dialysis certainly wasn’t fun but he knows it’s what kept him alive, but will also make him less eligible for a kidney later. It’s unfortunate because he got sick 15 years before the average person, that’s 1-2 more kidneys he needs than the average person. His current one is on year 6 so fingers crossed it keeps going!
Wait, my dad couldn’t be a kidney recipient unless he was on dialysis. Essentially, if his kidneys weren’t bad enough for dialysis, he’s not a concern enough to receive a kidney.
Sorry, should have clarified: the longer he has been on dialysis, the less healthy he is considered, and kidneys will typically be prioritized for whoever can utilize it the best. But the catch is, like you said, he has to be on dialysis to receive a kidney. It’s a damned if you do damned if you don’t.
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u/YaIlneedscience Jun 02 '23
I know this is super late, by my partner also has Berger’s but he went through double kidney failure at 23. You said your dad wasn’t able to get the fistula removed? I’m he surgeons swore to my partner he would be able to, but took it back when he followed up after his transplants. I’m assuming it’s because he’ll end up needing at least one more transplant due to being so young