Hi, I'm just pre Di. Trying to get used to the idea

[KDMan6969]

Hey everybody. let me try to introduce myself,
 I'm a 56 YOA guy. I was diagnosed with FSGN in 1995. I have been on tons of meds, including cortesone, doing the dietary things, Trying to be good and stay positive about things for years. My GFR has been bouncing around 11-13 the last few months so my Nephrologist says I"m getting down to the wire. I am all plumbed for either CAPD or Hemo, so I guess I could go either way. I have been on the transplant list here for about 2 years, but the last bunch of tests showed that I might have some cardiac eschemia, so they have me on inactive status until I get that cleared up. Unfortunately the dye they use for the cardiac cath test they need to clear me is very toxic to kidneys and would probably wipe out any function I have left. My brother, 2 good friends and my sister in law all offered to donate, but for one reason or another weren't eligible or backed out at the last minute.
I'm really lucky to have a tremendously supportive wife and kids, with whom I share as little as I need to about what is happening. I just don't want to have it effect them. My Dad died of Ckd when I was 20 after 5 years on dialysis and I know what kind of impact it can have on a family.
I guess right now I am just really anxious about what is going to change. I feel like I am doing as much as I can to not freak out and approach the situation with some grace and humility, but it's pretty scary. any thoughts, reflections, wisdom or benefits of your experience would be really welcome.

Jim

[Rerun]

Hi Jim and welcome to IHD.  It is a very scary thing when you KNOW someone who has already gone through this.  Just remember new things happen all the time, and dialysis is much better than it was 25 years ago.  A lot has changed in the machines and filters, and medications. 

I think you should include your wife in your disease and your choices.  It will put an unnecessary wall between you two if she is left out.  Just my opinion.   

I think you will find lots of support here and information. 

Rerun, Moderator     

[jg]

Jim:

I agree with Rerun. There has been a lot of improvements in dialysis. You can check out the 70's thread in the General Discussion Forum for evidence.
Your life span is not determined by your father's experience.
I am ignorant of cardiac eschemia, but is another  non-toxic dye or another possible test?
About the transplant, if someone offers to donate but is not a match, maybe a swap is possible.

 
jg

[okarol]

  Hi Jim,
If you were my husband, I would want to know. What you're facing is overwhelming and it can feel even scarier on your own. You can work better as a team.
I don't know where you live, but wait times vary. It's true, a donor can always join a chain so you can get a good matching kidney.
This article may be helpful "Heart test found safe for pre-transplant kidney patients" http://ihatedialysis.com/forum/index.php?topic=16211.0
I hope you stick around and post more on the forum!
Welcome!

okarol/admin

[galvo]

G'day, Jim and . Wander your way through posts here; you'll find a lot of good stuff. Ask all the questions you like, you'll get answers here.

[Jean]

Hi there and  to IHD. Sorry for your situation, but I agree with every one else, you should not hide your disease from your family. I agree that sometimes it is so scary you would just as soon stay home and bury your head under the covers, but that doesn't help. I already know that. I dont have PKD, but I am pre-dialysis and have the same fears you do.

[Romona]