17th year on dialysis

[del]

This month (not sure of the date) is 17 years on dialysis for my husband.  There have been a few bumps along the road but for the most part things have been good. He started on PD and the major bump came in 2000 when that stopped working and he got really sick (came close to dying and the so called medical people were saying there was nothing wrong until he told them he was giving up pd wanted a catheter put in for hemo)  He was feeling better in no time!!  - there was no site like this then for support back then.  For the next 6 years he did hemo at a dialysis center a little over an hours drive from where we live.  We started asking about home hemo and when we found out there were a couple of people on the island already doing it we started to really push for it.  In Sept. 2006 we started training and came home with the machine in Oct 2006.  He started doing nocturnal home hemo.  Everything was not great at first.  For a while he was ready to give it all up and go back to the dialysis unit because he was having trouble sleeping.  Took him about 6 months before he got confident enough with the machine to sleep well.  Now he does not even want to consider going back to a dialysis unit - not even for a treatment if we want to travel somewhere.  The fistula he had in 2000 by an 80 year old doctor is still working perfectly.  Thankfully he has no other medical issues and can do all the things he normally did before dialysis.  He uses a chainsaw to cut our own firewood,  we have a boat that we enjoy using, he is always building and making things.  Transplant has been brought up many times but he has refused. His feeling is if something is not broken don't try to fix it. He is doing really well on dialysis and he feels if he has a transplant there may be other issues. The nephs agree with him.  Plus transplants are not done in our province(Newfoundland) so you have to travel to Halifax to have it. 

[Sugarlump]

17 years and still going strong
Must be doing something right   
I agree with you about the transplant though (after two failed transplants) I got a lot sicker.... 

[obsidianom]

I love Newfoundland. I got to go there to St. Johns a few years back when I was teaching up in Canada (medicine). It is a beautiful island. I love the Half hour time differance.
You helped prove my point about home hemo being as good as a transplant. My wife and I do 5 day per week home hemo for her and we decided to not do a transplant as she is doing well with this . Much better than in center. She walks 25 minutes daily on a treadmill singing.   
Congratulations on your hubby making it so long and WELL. It gives hope to the rest of us for the same outcome. Dialysis does not have to "suck". You dont have to love it but you dont have to hate it either.

[PatDowns]

I love Newfoundland. I got to go there to St. Johns a few years back when I was teaching up in Canada (medicine). It is a beautiful island. I love the Half hour time differance.
You helped prove my point about home hemo being as good as a transplant. My wife and I do 5 day per week home hemo for her and we decided to not do a transplant as she is doing well with this . Much better than in center. She walks 25 minutes daily on a treadmill singing.   
Congratulations on your hubby making it so long and WELL. It gives hope to the rest of us for the same outcome. Dialysis does not have to "suck". You dont have to love it but you dont have to hate it either.

And I'm going on 21 years of IN-CENTER HEMO BY CHOICE.  I do not want dialysis in my home.  However, I've had to fight for what I need in-center, and have changed clincis 3 times.  But, I do self-care, including cleaning my station area and stringing the machine.  Plus, I have found a nephrologist willing to work with me. 

As far as transplant, I would take one any day over dialysis.  Yes, there might be trade offs, but no longer hooking up 3-6 days a week would be well worth it for me.  Unfprtunately, my insurance situation precludes a transplant at this time.  Long story, but mainly due to past irresponsibility.  Yet, I'm not looking to the government for "salvation."

[Rerun]

That is wonderful. Keep do'n what your do'n.

         

[galvo]

An uplifting report, del! Congratulations to the old boy!

[Riki]

I don't blame you for not wanting to go to Halifax.  I hate having to go there.  I'm always treated like a criminal when I'm there because they think I do things to myself for attention.  One of the times I was there, I contemplated throwing a chair through the window and following it down, just to get away from them.  Thankfully, I didn't do it.  The kidney ward in that hospital is on the 6th floor of an 11 floor building.  I thank God sometimes that we now have nephrologists in our province so that I don't have to go there anymore, except for transplant.

I've thought about taking myself off the transplant list and just staying on dialysis like your hubby has done, but my mom won't let me do that.  I've been on D for 9 years so far.  Congrats on doing so well, to both of you!

[Zach]

Del, you're the greatest!
And so is your husband.

 

PS:  Love the new "toy!"

[fuzzyL]

love your letter!!! so encouraging!!!!  been on home hemo since Oct 2012--I too not excited about getting a transplant--am showing my wife your letter--thanks!!!