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[bliss85]

Hi I am a 29 year old currently on hemo-dialysis doing nocturnal 3 nights a week for 8 hours been on nocturnal for about 6 months, been on dialysis since 2009. I have an av fistula and a graph. Have had fistulagrams and eventually surgery to reduce my fistula. I received a transplant in 2002 from my aunt (live donor) and it lasted 7 years until I was 23. Now I am awaiting a new kidney tx. Pretty knowledgeable with anything, have even gone through PD training and home hemo training chose not to do them for various reasons. Feel free to ask me anything very open. I mentor kids and parents new to dialysis. Have also been to dialysis centers in USA and Canada (many different Centers) have experience traveling. Hope to meet new people with the same struggles that can actually relate! Cheers! I live in Vancouver, BC, Canada

[Zach]

Good to have you here joining in on the discussions!
Congrats on doing 8-hour nocturnal treatments, 3xweek.
 

[PaulBC]

Glad to hear you're doing so well! You must have been diagnosed young (16 or under if I'm doing the arithmetic right). What caused your kidney failure if you don't mind my asking?

My daughter is 9 now (diagnosed last fall) and doing well on PD, but I do wonder about her future. Of course, I'm hoping for a medical breakthrough in the next 20 years, but if not, she still has her life ahead of her and will have to manage. I know it is going to be a challenging road ahead. I'd be interested in hearing anything about your experience growing up with this condition.

[bliss85]

Thanks all! Paul I had a cyst in my jaw and required surgery to have it taken out...pre surgery it was found my creatinine level was 1200+ further testing found my kidney function at 4% and was first diagnosed with polycystic kd later changed to medulary cystic kd. I prolonged my kidneys long enough to get a live donor transplant and skipped having to deal with dialysis. I was 16 and didnt deal with all the changes well...struggled alot with diet but mostly with the strict immuno suppressant drug regime , lots of meds and having to be taken every 12 hours no exceptions was too much responsibility for me...i never planned properly and would often miss my meds...eventually leading to my kidney rejecting only 7 years. In hind sight i can only kick myself for not taking the meds as dialysis is far worse then the hinderance of any meds...I honestly cant say anything would have really changed this outcome in me...i was stubborn and a teen...wanted to go out and party and hang with friends...but in your daughters case she has experienced the outcome of not taking care of her kidney...where as i had not and took it for granted...im sure with a lot of support and education she will be fine...although that's not to say she wont struggle...But as an adult now this disease has only made me more mature and given me life experience beyond my years. I am not surprised your family chose PD my family was going to force me to do it luckily i skipped it...i would never want PD...my worst expierence of dialysis was having a permacath and central line. I hated everything about it. CHeers sounds like you guys are dealing with it well.

[PaulBC]

Thanks all! Paul I had a cyst in my jaw and required surgery to have it taken out...pre surgery it was found my creatinine level was 1200+ further testing found my kidney function at 4% and was first diagnosed with polycystic kd later changed to medulary cystic kd. I prolonged my kidneys long enough to get a live donor transplant and skipped having to deal with dialysis.

I'm amazed that you could manage that at 4%, and that you didn't present with obvious kidney failure (e.g. edema, fatigue) in the first place.

I was 16 and didnt deal with all the changes well...struggled alot with diet but mostly with the strict immuno suppressant drug regime , lots of meds and having to be taken every 12 hours no exceptions was too much responsibility for me...i never planned properly and would often miss my meds...eventually leading to my kidney rejecting only 7 years. In hind sight i can only kick myself for not taking the meds as dialysis is far worse then the hinderance of any meds...I honestly cant say anything would have really changed this outcome in me...i was stubborn and a teen...wanted to go out and party and hang with friends...

Our social worker did explain that missing meds is one of the main causes of transplant rejection in teens. It's hard for me to imagine skipping even one dose without calling for advice right after and spending the next week freaking out and waiting for every new test result to come back, but it's been a long time since I was a teen. My daughter is usually very responsible. That could change in adolescence, but I hope she builds up good habits first.

On the bright side, life with your transplant was normal enough that you could go out and party. That's good to hear. Things are very normal around here, even with PD. I am sure a transplant would ultimately be even better, but it's a big step and kind of scares me--especially the aftermath of wondering how long it will last. Seven years is a significant benefit, and I think I could sleep easy if I thought it was 15 years. If it really just doesn't take, or the disease recurs, it'll be more heart-breaking than going through this the first time around.

[iolaire]

Have had fistulagrams and eventually surgery to reduce my fistula.

Welcome, can you describe a bit about the reduction of your fistula, was it cosmetic?  I'm assuming the fistula area got large/knobby and that is what they were fixing?

Have also been to dialysis centers in USA and Canada (many different Centers) have experience traveling. Hope to meet new people with the same struggles that can actually relate! Cheers! I live in Vancouver, BC, Canada

Glad to see another traveler.  Have you happened to have any sessions in Bellingham or Seattle?  My bother and his family lives in Maple Falls outside of Bellingham so its likely that I'll receive treatment in that area at some point.  So far traveling and HD has gone good for me, but I still have some kidney function and handle D well at home also.  You can see in my signature some of my international destinations.

[bliss85]

Have had fistulagrams and eventually surgery to reduce my fistula.

Welcome, can you describe a bit about the reduction of your fistula, was it cosmetic?  I'm assuming the fistula area got large/knobby and that is what they were fixing?

Yes, I have been told by many nurses and doctors that it was the largest one any of them had seen since it was on my upper arm starting at my elbow area and going up my inner bicep to my shoulder it wasnt too much of a bother...although I was often self conscious of it as it was so big, it got so big due to me being a plumber and always lifting heavy things and i work out a lot and am very active. The surgery was not due to cosmetic although it was nice to have it reduced....it was getting infected and after several months of using antibiotics it would not go away so they had to cut out the lower half of the fistula and attached a graph for about 4 inches in the bottom...i do not use the graph as they are not as reliable or good for dialysis and dont last as long so i just changed my needle spots to my upper fistula which was never touched...but i am running into the same problem it is enlarging again...but not quite as much.

[Darthvadar]

 ...

Always good to have new people...

Visit and post often... We like talkative members!!!!!...

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