Disappointed

[jojosmommy]

I got a rejection letter from the transplant docs. Reading it felt sort of like this:    They said my BMI is too high.  I need to lose 40 lbs.  ?That's easier said than done. I know I can do it. I just wanted to express my disappointment.   

[boswife]

   sorry, i know how the 'initial' pounding must feel, BUT...... at least ya have a great goal to reach for     sending you some     to get ya through, and best wishes for and easier than ya think reaching of goal 

[willowtreewren]

And we will be cheering you on your journey to reach your goal! 

Aleta

[billybags]

You can do this.

[AguynamedKim]

I'm sorry for your letter but I hope you can get behind the weighloss goal and get yourself a new letter that says approved.  I'm sure there's others here who have lost weight to get on the transplant list - I hope they can chime in and offer some tips.  Cheering you on for the wieght loss!!!   

[RightSide]

I got a rejection letter from the transplant docs. Reading it felt sort of like this:    They said my BMI is too high.  I need to lose 40 lbs.  ?That's easier said than done. I know I can do it. I just wanted to express my disappointment.   

I sympathize.  I've sure had my share of disappointments along the road of ESRD, and I know how it can feel.   

Talk with your dietitian.  And look into a regular exercise program.  I'm sure you can lose that weight.  Just keep it off long enough to get that kidney!

[jbeany]

Ah, horribly frustrating, I know.  Hang there, and swear at them and throw things if it helps.   

Still, don't think of it a rejection, just a postponement...you can do this!  And from personal experience, there is no better incentive to get up and walk off your bum when sitting on it 3 times a week involves honking big needles stuck in you.

[WishIKnew]

I have been where you are!  Very frustrating!  You feel like crap, you must eat certain foods - like lots of protein -and they tell you to loose weight!  I was so mad!!!!!!!!  I actually went to a different hospital and they put me on the list at the weight I was but had me meet with a dietitian every month.  She was worthless, but I was able to loose over 30 pounds the first year I was on dialysis.   I've stayed at the hospital were they listed me and have not tried to go back to the first place.  Know that not every transplant center has the same BMI requirements.  Hang in there! 

[onestronglittlelady]

Sorry to hear you have to wait to get on the list. On the bright side you can do this! There are lots of people here to cheer you on. Good luck and keep us posted.

[jojosmommy]

Thanks for the encouragement everyone!  I knew you all could help me feel better! 

I have been where you are!  Very frustrating!  You feel like crap, you must eat certain foods - like lots of protein -and they tell you to loose weight!  I was so mad!!!!!!!!  I actually went to a different hospital and they put me on the list at the weight I was but had me meet with a dietitian every month.  She was worthless, but I was able to loose over 30 pounds the first year I was on dialysis.   I've stayed at the hospital were they listed me and have not tried to go back to the first place.  Know that not every transplant center has the same BMI requirements.  Hang in there! 

Unfortunately out of the 2 hospitals in my area, my doctor had already referred me to the one that was a little more lenient about the weight issue.  Guess he had his hopes up as much as I did! Oh well, all I can do now is put in the work and get the weight off.  The sooner the better!

Thanks again! 

[miket]

How do they expect you to lose 40 pounds? Aren't you tired from the kidney disease. I mean I get tired just walking a 1/4 mile... I don't know whether that is from being out of shape or being anemic. I'd love to workout. I miss some of the things I used to be able to do like... hiking in the PNW, basketball, golf without a cart, and well walking with my fiance.

[peleroja]

I know the feeling.  My transplant doc said he wouldn't put me on the list until I weigh 160 or less.  I'm hovering around 180, but my arthritis has gotten so bad that I can no longer ride my exercise bike.  Guess there's no transplant in my future.

[AguynamedKim]

I know the feeling.  My transplant doc said he wouldn't put me on the list until I weigh 160 or less.  I'm hovering around 180, but my arthritis has gotten so bad that I can no longer ride my exercise bike.  Guess there's no transplant in my future.

Peleroja, I'm sorry the arthritis is hurting you.  Are you taking anything for it?  I've been doing a lot of vitamin research lately and have come across a company that has a specific formula for arthritis sufferers.  I think the research they do is solid and so far their products seem solid.  The company is called xtend-life and it's a New Zealand company so for some reason I trust them more since they aren't here in the states.  I love you kiwis - I also love the fruit kiwi but I digress...  The specific product is called Arthrit-eze - http://www.xtend-life.com/product/Arthrit-Eze.aspx  Their products are not inexpensive - but if it makes it to thwere you can ride your bike and lose the last 20 to get you on this list it seems worth it to me.  I have not yet ordered their products though I'm looking to for the Omega-3s and Cholesteral products.  I would honestly hate for the arthritis to get in the way of something that could be very good for you and if a product like this can help, I say go for it.  I think they have a 6 month satisfaction guarantee on their products.

Perhaps any New Zealanders out their or anyone for that matter familiar with their products?

[rsudock]

I had a woman tell me at D that the Boston medical hospital told her to lost 50 pounds before they would do transplant surgery but then she went to Columbus hospital in Ohio and they said her weight was fine!!! Try another hospital.....don't give up!

xo,
R

[Steve-0]

I recently lost 35 lbs to get to a better transplant weight.... it can be done.  Chin up!

~Steve

[Poppylicious]

Ack, I feel your pain from the other side of things; I'm hoping to be a donor for my Blokey but the weight is holding me back.  When I achieved the BMI they wanted I was told that I had to lose a further amount.  It's ridiculous.  But it can be done!  Work with me, we'll get there!

 

[Phraxis]

We should collectively reach out to our respective resources and see if anyone has developed a reliable Program to loose weight on D to qualify for BMI requirements. This is a complex problem with limits to energy, diet and other practical considerations. Anyone have any research that they have accessed?

For my part, I lost allot of weight on D but was fluid obsessed.

[miket]

Don't give up you got this!!! Anything can be done! If there's a will there's a way.

[jbeany]

I lost 55 pounds while on D to get to a good weight for transplant, which was double what they had asked me to loose.  It's not impossible, it's just truly difficult.  I started at the beginning with trying to figure out all the reasons I had gained the weight in the first place.  A life time of cleaning my plate and ignoring when I was full was a big part of it.  Having no clue on real portions after years of eating from the buffet at my family restaurant didn't help.  My mother's habit of rewarding me with candy when I did something well as a kid was part of it, too.  A total dislike of all forms of exercise didn't help, either.  Being too broke to buy healthy fresh foods just added to the problem.  Add in the diabetic dialysis diet and it's an exercise in frustration. 

But I did it.  It wasn't any one magic thing - it was a little bit of everything.  When friends asked what I was doing, most of them were less than thrilled with my answer - "eat better, eat less, exercise more, stop at enough."  Everyone wants that magic bullet, but it's just a slow trudge - on the treadmill, through the produce section at the store, in the kitchen measuring out every bite, and through the meals, trying to eat slowly enough to be full before I finished everything on the plate.

[Meinuk]

Ouch.  If it is just your weight that is a barrier, can you ask that they list you as inactive so that you can accrue time on the list while you try to lose the weight?

I know that it is controversial, but has anyone explored gastric banding with you? We had a member (who is no longer posting) that had gastric banding in anticipation of transplant. I know that this is not uncommon in our population.

I have fought with my weight for the past 15 years, currently, the weight is winning. I was at the top of the BMI scale when I was transplanted (my surgeon also credits my giant PKD kidneys for a lot of weight).  My post tx nephrologist blames steroids for my current weight gain. (Personally, I blame the skinny man who bakes me scones for breakfast... but ultimately, I know that I have to get off my butt and do something about it - thank goodness for summer swimming!)

Talk to the Transplant Unit, and show them how motivated you are, ask them to work with you on this. The most important thing is that you DO NOT GIVE UP.

 

Anna

[Ang]

I got a rejection letter from the transplant docs. Reading it felt sort of like this:    They said my BMI is too high.  I need to lose 40 lbs.  ?That's easier said than done. I know I can do it. I just wanted to express my disappointment.   

went to clinic about a year ago i guess , saw a neph i'd never even seen let alone met.(newly arrived N.Z) she promptly told me i was fat and my BMI was above the levels acceptable for transplant.
my response was yeah whatever, get out and exercise, to get a transplant.
3 weeks later i get a phone call,get your %^^& into the hospital, we got a kidney for you.
world works in mysterious ways.
no i did not do any excercise  then but do heaps now