Wish me luck?

[kaeli211]

I've noticed that some of you write out a timeline of their experiences - I never looked at my situation from that perspective (can't see the forest for the trees, I guess?) so I thought I'd see how it would come out. Here it is - it's a tad longer than I expected it would be, even after I edited out all the self-pity and crying

My father has pkd - was on home hemodialysis for 5 years or so, received his transplant (cadaver) in the late eighties - he's 73 now and doing fine.
My timeline:
1991 -  diagnosed pkd during hospitalization for ruptured cyst - until this time none of us in my family were aware that we could inherit pkd from my father. i am second oldest out of 7 children - 5 of us have pkd and i am the first with kidney failure.

march 2007 - feeling horrible, told by my nephrologist impending esrd, i chose hemodialysis
april 2007 - left lower forearm (non-dominant) fistula surgery - failed
may 2007 - left upper forearm fistula surgery - failed
july 2007 - left forearm graft - failed
september 2007 - right forearm fistula surgery - succeeded (kinda)
(by now i weigh 200 pounds - zero energy. i've lost 40 pounds since then)
october 2007 - another fistula surgery to improve it
(note: during this time i honestly had no idea how awful i looked until mid-2008 when i ran into a friend i hadn't seen since late 2007 - she did a doubletake, then exclaimed "oh my god - look at you! you have color in your face!")
february 2008 - first dialysis (and first infiltration)
march 2008 - first balloon procedure (i will have at least 3 more infiltrations in 2008)
october 2008 - diagnosed severe dysplasia, need surgery to get on transplant list
october 2008 - second balloon procedure
october 2008 - diagnosed cataract in left eye (i am 48!)
january 2009 - fistula revision - very successful; you could drive a truck through my fistula now.
february 2009 -  leep surgery for dysplasia
march 2009 - cataract surgery
june 2009 - tested yesterday for dysplasia - if it's gone i'll be activated on the transplant list - up until now i've been accruing time but inactive.

So...wish me luck that I don't need any more surgeries to be activated? I've mentioned before that I have really bad RLS during dialysis, and if I'm in limbo for much longer I'm not sure what I'm going to do...I know that most of you have dealt with a lot worse than me and for a lot longer - any and all coping strategies would be greatly appreciated!!!
Thanks
Kaeli (it's really Caroline but I like Kaeli better)

[willowtreewren]

It is amazing how little is generally known about PKD. My father in law had it, both his kids got it, and my daughter has it (it affects her liver, too!). It is the genetic disease with the most incidence, yet not much $$$ goes into research for it. 

It's nice to learn more about you Kaeli. You have had a run of bad experiences with your access. I hope that is all getting better now.

Aleta

[Hanify]

I think you are coping as well as anyone!  We don't cope that well - I think we're just determined to beat it, or not let it beat us maybe?  Try to stay positive, and post often.  I think that really helps.  IHD is what helps many people get through it all.  Thinking of you.

[cariad]

Wow, Kaeli, you have certainly been through a lot. I am keeping a good thought for you that you will finally be activated - and more importantly, that your time waiting it out on the list is short and sweet!

Best of luck!