Any SLE people out there who are on or have been on dialysis???

[charm81]

Had a fistula done on Thursday. Which briefly is the joining of a vein and a artery in the arm. Was explained that lupus patients have smaller vessels so can be slightly more difficult to find a decent vein for connection. When procedure was completed under local anastetic there is meant to be a buzzing sound in the arm which is heard with a tetherscope. Unfortunately for me this hasn't happened. Said they will review it in 2 weeks. If it isn't working by then then I will have to go back under the knife. What I would like to know is if anyone has had this procedure, how long did it take to work or buzz?

Really don't want to have to go back to theatre!!! Any experiences would be greatly welcomed.

[pattismith]

Sorry l can't help with the answer to this , but l do have Lupus Nephritis and poor kidney function due to irreparable damage already done. I have found that learning all l can about my condition and how the kidneys work in general helps with questions l need to ask my Renal const. The Kidney Foundation has a really good website with lots of videos explaining how everything works in detail. Hard going but well worth learning.Knowledge is power - hope this helps as all these things are a worry and the more we understand about out treatment the less we tend to stress about, l hate being kept in the dark about what is happening - always ask lots of questions. Good luck with your treatment, let us know how things go. Thinking of you

[charm81]

Thanks a lot. Will check out above mentioned website.

[sandwiches]

I had a fistula formed for dialysis, but mine didn't work. It failed on the same day that it was formed. I had a permacath in my neck for a diaylsis which worked for a long time. I had 4 in total but after a while they stop working because of stenosis which is narrowing of the arteries. I then had leg grafts in both of my legs to diaylise. you have eight accesses on your body so that you can diaylise. I was down to my last access when i eventually got a transplant in 2010. Hope this info is not too scary for you. Good luck.

[charm81]

Hi sandwiches,

Your info is so helpful. I kind have resigned myself to the fact that it might not work. Was on Peritoneal dialysis was almost 2 years and now changed to haemodialysis. Got tesio in neck at minute but been told then it a temporary measure due to risk of infection. Not been told about all these access sites but don't fancy tubes coming out different parts of my body.

Hopefully it will work in a few days. Congrats on transplant. Hope you are well x