Speaking of how dialysis can go badly, I saw this post on the r/dialysis subreddit:
I wrote a few times into this subreddit, but I have to share my problem with you. I started my journey in 2003. and as a kid I got a Catheter into my left side to try to help to my kidneys to work with plasmapheresis, because I have FSGS (this causes that I can’t get a transplant third time, because I had 2x tranplants and both failed in this disease). The catheter scarred my internal vein, so I got a stent. After I went through other diseases, I had a stomach perforation and a pancreas tumor (not cancer, but I don’t know the word), for 6+ months I was in the hospital, I had a permacath in my right side, when the doctors tried to save my life, they destroyed my veins on my arms (I don’t blame them). After they cured me (I was only 29 kg at this time, height 168 cm), they helped me to gain weight and I left the hospital when I was 17 years old and when I turned 18 they could make me a fistula, which worked 5 years, after it clotted the surgeon elevated my vena basilica, but my stent couldn’t handle the high blood flow (the previous fistula had lower flow) and my vein collapsed again and my hand was swollen, like a body builders hand, the skin never healed on that arm so my doctors closed the fistula. Permacath again for a short period, because they found a vein on my right hand and the surgery was successful and now it became its end. It worked 6 years and my surgeon told me there is no other option( no place for graft or anything ), only a Tesio Catheter: http://www.medcompnet.com/products/long_term/bio-flex_tesio.html , but I’m afraid, in my country there is no option for fistula on the leg, if my right vein fails, my life will be over, I mean they can put catheter into my groin, but what kind of life is that…
https://old.reddit.com/r/dialysis/comments/i9ah74/no_other_fistulagraft_options_im_only_31_and_on/
Holy shit. I know I complain a lot on this blog about how crappy my life is but I also admit that there are lots of patients who are worse off. My first catheter worked fine for 20 months. I had to go to the hospital to get it unclogged a few times but that’s just more sitting around. PD didn’t work eventually but I didn’t really have too many issues with the catheter or process, and did not get any infections. It’s been about 9 months now since I’m back on hemodialysis and again, the catheter is working great. My fistula is iffy but works when the needles are inserted correctly. Maybe we’ll find out more with the fistulagram next week.
I couldn’t imagine having all my access options fail. Dialysis sucks but short of a kidney transplant, there is no other solution to stay alive. I’d be freaked out if all the access points failed one after another. I think the original poster above thinks he is going to die and it seems like he’s in his late 20’s. Again, I didn’t start dialysis until I was 49 so at least I lived a semi-normal life until then.
I really think more resources should be spent on coming up with an implantable artificial kidney. Even the iHemo half-solution is better than hemodialysis today. Also, if the government would support PSA’s about live kidney donations as they did for drinking & driving and teen smoking, there would be a lot more live transplants and save a lot of patients from grief and risk of death. And we would save a ton on Medicare costs.
Life with chronic diseases 