Fistula clotted
Hello! I’m a 27F who started dialysis about a year and 8 months ago. I had my fistula put in a week after my perm cath was placed in March 2023. My fistula worked by June 2023 and a Year later it began to have issues.
4 fistula grams later and after months of complaining about pressure in my shoulder. I begged them at the last fistula gram to check up high in my shoulder for a possible clot and low and behold there it was.
A small vein had been taking the brunt of my outflow that’s supposed to dump into my heart and clotted up. A new surgeon wanted to salvage my access but took weeks to get surgery scheduled. Well two nights before surgery my arm began to hurt. From the top of my shoulder to my elbow. (Basically where my access is placed) and it got worse and worse. I called my nurse to see if I should be worried but they kept saying that I have surgery so that will fix it.
The day of surgery my thrill and pulse was gone completely. The surgeon came to me and basically said he can either try and take the clot out or schedule a surgery 6 weeks from now for a new fistula.
He said trying to take the clot out is unnecessary and that I should just get a new fistula. I decided to not get the clot out. However I’m still in so much pain.
I want to know if it is normal to leave a clotting fistula in. And should I get a second opinion…..
the surgeon said that my body would “eat away” the clotted vein and I shouldn’t be worried of the clots moving or effecting the rest of my body but the way it hurts doesn’t feel like it should be left in my arm.
Also I was originally told that my fistula was the only one they could make, so I’m even more worried that they won’t be able to make a new one in the same arm.
Has anyone else experienced issues with their fistula?