I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: tigtink on August 09, 2016, 11:23:04 AM
-
Toledo gave me quite a challenge: I had to lose 35 pounds, in addition to the 20 pounds I had to lose for the other two centers, in order to even continue with the testing to get on their list. To add insult to injury, they rounded down on my height adding even more than I expected to the amount I needed to lose. The transplant surgeon at Toledo basically told me I would never be able to do it, citing statistics that say that only 5% of the patients they ask to lose weight lose enough to make it on the list. He even suggested I get bariatric surgery even though I had already lost 30 pounds and had only 20 pounds to go! I was furious and very disheartened after the evaluation appointment. But with careful dieting and lots of exercise, I finally met the weight goal they gave me. So far I am two pounds less than they want me to be, but I want to lose a few more pounds to give myself some leeway. I believe the exercise and weight loss have kept me off dialysis. My kidney function is holding steady in the 16% to 18% range (it had gone as low as 14% last year).
I'm not on their list yet. The transplant surgeon is on vacation this week (of course) so I have to wait until Monday for him to review my file and have the coordinator set up the rest of the tests. I need a chest x-ray, EKG, a CT scan of my abdomen, and clearance from their cardiologist, even though I have no heart issues and did great on my last two stress tests. The cardiologist will probably want to repeat the stress test. The coordinator sent the referral to their cardiologist's office three weeks ago today, but I've yet to hear from them. No telling how long they will hold up the process. So it is hurry up and wait again. They wanted additional vaccinations the other two centers did not require, but I took care of those a couple of months ago. Once I get on Toledo's list, I should move near the top of their list with my accrued time, but I have a few more hoops to jump through to get there. The weight loss was the big thing though, and I'm really happy I was able to achieve the goal they gave me. It wasn't easy. No one can ever accuse me of not having self-discipline after this!
Debbie
-
You should get a GOLD MEDAL for achieving your goal. What an absolutely incredible achievement! That's just soooo amazing! I know there will be more hoops and hurdles, but you are almost certainly right in thinking that you've already jumped through the most challenging hoop of all.
Congratulations to you!! This is just the best news! I'm so excited for you! :yahoo; :2thumbsup; :clap; :bandance; :cheer: :laugh:
-
Well done tigtink!!!
:yahoo;
:cheer: :cheer: :cheer:
Love and luck, Cas
-
Congrats! So few people can do this. Onward!
-
WOW!!!!! You have done Great!
I have tried to lose the 40 pounds the prednisone put back on me and it is very tough as I am NOT physically active so I KNOW you have been seriously working at it.
Congratulations, you've really earned it.
Determination like your's really needs to be rewarded, and not with cake and ice cream.
I Pray all goes well with your next Dr's review.
Keep on Taking Great Care of yourself,
Charlie B53
-
Thanks, everyone, for the encouragement. It has not been easy, but there have been many benefits. I feel better, my kidney function has been stable, the surgery will be easier and the recovery will be faster, and I've met some great people at the YMCA. It was so tempting to just drop the Toledo effort because I thought it would take me a year to lose that much weight, and by then I would be nearing the top of the Wisconsin list. But I was able to do it in less than four months. And spending so much time exercising kept me from sitting at home fretting about my kidneys and the transplant.
I think the thing that kept me going was having something I could actually DO something about. There is so much about this that is totally beyond my control. Focusing on the weight loss made me feel less helpless. I'm hoping my chances of getting a transplant before dialysis have increased because of this, so in the end it was all worth it. MooseMom, there were days when it felt like I was training for the Olympics! I just kept telling myself I would rather be spending time in the pool than in a dialysis chair.
-
:2thumbsup;
A very big congrats! That's no small accomplishment under the best of circumstances, let alone while also dealing with dialysis. I'm sure your efforts won't go unnoticed with your transplant team.
-
It's amazing what people can accomplish.congrats you deserve all the kudos you are getting.
-
Ugh! More waiting. I am scheduled for the CT scan, chest x-ray, and EKG next Friday but the cardiologist can't see me until October 21. I'll need a stress test and echocardiogram in the morning before I meet with him in the afternoon. Looks like the earliest I can get on the list is November. Yet another lesson in patience.