Starting dialysis soon, round 2

[KraigG]

Had my kidney/pancreas transplant almost 20 years ago. Back then, I was only on dialysis for 2 months before I got called for my new organs. The pancreas lasted 10 years, but the corrective surgery to repair the original routing got messed up, so it had to be pulled. The kidney hung around for another 10 years. This past week, my creatinine clearance level dropped to 20%, the magic number to get back on the waiting list.
Since I'm going to have a wait of at least 18 months, I'm going to have to go back on dialysis. Soon. My doctor gave me a prescription for a drug called Renagel, but when Wal Mart wants $269 for one month's worth, that's not going to be a priority. I'll load up on the Tums

[galvo]

   to the site, KraigG. What kind of dialysis are you planning?


edit: fixed icon error Epofriend. moderator

[KraigG]

Thanks, Galvo. Glad to be here! (not really).
Since I'm not working, and I like to have things in the hands of professionals, I'm going to do hemo again.

Have to get my fistula re-done, since they yanked that out after the transplant, as it had gone bad, and was cutting off circulation to my fingers on one hand.

[galvo]

Good luck with it all. Stick around here. Your experience will be valuable.

[billybags]

hi KraigG welcome to the site, Sorry things have started to go wrong after 20 years, you have done brilliantly to go as long as this. So its back to hemo, lets hope you will not be too long on it before you get another transplant. We live in the UK and my husband takes Renagel I did not realise how much they cost, we get them free on the NHS. Look forward to reading your posts.

[monrein]

   to IHD. 

[RichardMEL]

20 years is a fantastic run - specially given how the technology has changed in that time. Still, the time is coming to get back there sadly.

Luckily we get Renagel subsidised by the govt so it costs me $32 a month - thank God as it's a godsend for me. Hopefully the tums can help you out with the phosphates. Have they put you back on a renal diet yet?

All the best with it- it's good to have you here - your experiences could be very useful here, and hopefully we can help you out as you have to get re-aquainted with dialysis again. Hopefully your wait for a second gift will not be too long!

[okarol]

 

Welcome! good luck with hemo and being on the list. Here's info about a website where you can learn about Renassist, Genzyme’s reimbursement support team. http://www.renassist.com/ to help get Renagel Tablets.

 

okarol/admin

[Rerun]

Hi KraigG and welcome to IHD.  My cousin spells his name Kraig; you do see too many like that.  You had a great 20 years and I hope you get a new kidney soon.  Things on the Transplant side have changed for the worse in the last 20 years.  Tests and more tests and then you wait for fricking ever.  But, maybe you will be lucky.

This site is great for new information and humor.

        Rerun, Moderator

[looneytunes]

Hi Kraig and welcome to IHD!     It's a great site for information and support.  I'm looking forward to seeing you on the boards! 

[Lisa]

Hey Welcome!!!

[Zach]

Welcome to our community!
 

[KraigG]

Thanks to everyone for the wonderful welcomes! Not really sure how much I need the Renagel. Does it make a big difference? In what way?

I need an oral exam, and a colonoscopy, and I'm back on the waiting list in Chicago, even though I live in Southern California.

UCLA, where I have been going for my post transplant care, will not do another kidney/pancreas transplant since I've already had one. Rush hospital, in Chicago, on the other hand, is welcoming me with open arms. The transplant doctor told me they usually toss the pancreases out, since not many places do a pancreas only transplant. I'm hoping this unique situation I find myself in moves me up the list a bit.

Are you all on waiting lists already? I don't want to be on dialysis for years to come, which seems to be the case for a lot of you out there. I am not currently on dialysis, as I recall once you go on, you don't get off until a transplant is available.

Thanks to all,

Kraig

[RichardMEL]

Kraig - re the Renagel - your situation is very different to mine so perhaps the Phoslo will be fine(I've never used it, so can't comment on that). For me as a non Calcium Phosphate binder Renagel works really well for me lowering my PO4 levels significantly, and in conjunction with Calcitricol and Sensipar keep my Calcium and PTH on track which is important to minimise bone disease, which hopefully will really be good for me in the years to come. If your phosphates are high (a reason for them to give you a script for Renagel) then maybe you want to talk to the neph about phsolo if it will do the job they want, and what doseage you need.

Re transplants - I think you should be quicker than a kidney only transplant as K/P are usually mucjh quicker to come (at least that is my understanding). Forum member wallyz though may disagree as he waited quite awhile and had MANY calls before the right one(but now he is transplanted - hooray!). I'm on the regular transplant list down here in oz myself. Been waiting over 4 years so far. It will happen sometime I am sure. Luckily I am one of the ones eligable for a transplant - some folks aren't for any number of reasons. Hoping it will work out for me when the call comes and I can get 20+ years like you!!!