Getting back to dialysis after a long time in NY

[christian2170]

So here's my story. I got diabetes when I was five years old in 1975. Back then control was  being conscious or unconscious. So you were probably marching around as a kid and could be 200 to 300. I had a real bad time when I was 18 with my glucose's flying all over the place I was taking 2 shots a day and still bouncing like a yoyo. At the time I didn't know what to do so I checked into a hospital specializing in diabetes and spent 2 months there. They finally got it under control with a insulin regime that was so strange it made my doctor give me the glassy eyed look of wonder. But it seemed to work.

At this point they started noticing a slight increase to my creatinine. I was told not to worry it only went up a little It should really affect anything. So I went on my merry way. it was about a year later and it was still climbing. I got the same thing, It is a little higher but take this blood pressure med and it should be fine. So now I'm twenty and there giving me the bad news. Your kidney chemistry's are past the safe mark and now we have to get you ready for dialysis. So they stick a fistula in my arm and we are off to Westchester kidney center for what I never expected. So the doctor there was very nice. He tells me about all my options and say's  you may consider a transplant. My mother  was a big part in finding the University of Minnesota (Dr. Sutherland). I went out to see him he said your a perfect candidate and put me on the list. a year and a half later they call me up and they performed a kidney/ Pancreatic transplant on December 24th 1994. I still remember because I woke up with a big fat Santa clause hanging  over me and the first thing that popped into my mind was " I didn't make it".

From that point on it was like a whole new life. Normal glucose's 24/7. I had no restrictions. I did everything!!!. Worked out ate what I wanted when I wanted. I was ABSOLUTLEY Happy. It lasted for about 13 years. the n in 2004 it started heading south. I noticed my glucose's were starting to climb and my renal function was dropping.  I went to Westchester medical center and they absolutely killed it. They started giving me new anti rejection drugs and it started dropping like a rock. So now here I am at35 with a house a job and a kid and looking to go on dialysis.

So In steps my brother Mike. He says "I'm not letting this happen and gives me a kidney". To this day I would absolutely do anything for him. And really it's not that he gave me one. It's that he offered to give me one. And really there was no way anyone could stop him. So in we go for surgery and bang it takes off like a champ. So that was eight years ago. Three years into the transplant I had a rejection episode call CD-4 antigen response. I noticed it immediately. when your feeling better after a long time of not feeling better you notice anything out of the ordinary. So I got into the hospital they treat it and they say " this has to be closely watched". So from that point on I started watching like a hawk. My insurance company started give me crap about testing so much.

So next came the next issue. It seems they weren't testing me for the BK virus and my chemistry's started to slowly climb. it was .10 at a time. Little by little. So they try dropping the immunosuppression. It seems to get rid of it but it comes back when they raise it. Also by this time I'm on an insulin pump. If your a JV diabetic YOU HAVE TO GET ONE!!!!!. If I had one way back in the day. I'm almost certain that I wouldn't have had renal failure. So here we are with this double trouble attacking my transplant and my creatinine is now at 3.0. My doctor has pretty much stop contacting me with anything to do about it and now I starting to mentally prepare myself for dialysis again. Really the worst part about the whole thing it I have a 11 year old son and he too is a JV diabetic. So now he's going to see me go though all this. I try to maintain the fighter attitude. Im looking into at home dialysis and have heard some good things about it. I definitely remember being at the Westchester kidney center and not doing very well. So that's my story.

The doctor at NY Presbyterian says I should get on the kidney/ pancreas list over there which sound great but, I'm not sure it will work. I have had 2 transplants already. But I will go on the list. Any words of wisdom is greatly appreciated.

Thanks
Christian

[Zach]

The Rogosin Institute at NYP is one of the tops in the field.
Their in-center and home hemo programs are pretty good.

Regards,
--Zach

[Ninanna]

  what a great introduction!

[christian2170]

I did meet with the Rogosin at home hemo nurses a few years ago they were very nice and didn't give me that dead end feeling. They were telling me you can still feel and do anything you do now with a few exceptions. They really made my day!!! The transplant team on the other hand made me feel invisible while dealing with them. No insight, no enthusiasm just remain on the standard course and hope for the best sort of attitude.

[Zach]

I did meet with the Rogosin at home hemo nurses a few years ago they were very nice and didn't give me that dead end feeling. They were telling me you can still feel and do anything you do now with a few exceptions. They really made my day!!! The transplant team on the other hand made me feel invisible while dealing with them. No insight, no enthusiasm just remain on the standard course and hope for the best sort of attitude.

Sorry to hear about the Tx team.
As you can tell, I have preferred hemodialysis as my mode of treatment … so far.

Welcome to the IHD community!
 

[Poppylicious]

  Christian!

Love your introduction. Your brother is an absolute diamond.

Post often!

Poppylicious, Moderator

[Darthvadar]

Hello Christian...

Good to see you, and may I extend a warm  to IHD...

Hope to see lots of posts from you...

Darth, Moderator...

[cariad]

Hi Christian and to IHD!

You've been through quite a bit in life so far. Returning to dialysis after a successful transplant is just about the hardest thing in the world. Well done in keeping a strong face for your son. Many members use this site to purge all of their anger/sadness toward dialysis and kidney failure so that they can remain bright and upbeat for their family and friends. It usually works!

Your son is watching, but I would make clear to him that medicine is advancing rapidly and there is a good chance he will not have to walk down the dialysis path. Have you looked into islet cell transplantation? I have heard very positive reports (from trusted medical professionals) that this is curing (their word) many people of type I diabetes. It's early days yet, and I don't know the potential risks and side effects, but it is certainly a procedure for you to look out for on behalf of your child.

I'm glad you took the time to join us and look forward to reading more of your posts.

[obsidianom]

Home dialysis is worth doing. My wife and I have been doing it for almost 2 years now. We still go to the office to run the  practice 4 mornings per week  together.
WE live a life that has changed some with dialysis but is still quite full. We do dialysis 5 days per week. My wife at this moment is walking on the treadmill 10 minutes after we just finished dialysis. She feels GREAT these days as we increased her dialysis by a half hour longer per day . At 3.5 hours per treatment she is as energetic now as years ago before kidney failure. So you can do it too. We use Nxstage which is the easiest and most portable dialysis . You can travel with it.
Please feel free to ask questions about anything to do with dialysis. WELCOME!