Weight Loss for transplant surgery............

[Nan]

I am new to this site and I am sure I will be looking here for answers to my questions and problems. I was told by the University of Minnesota that I needed to lose 90 pounds before I could be "called"for a transplant. I passed all of the qualifying tests for a kidney transplant and made the National List with being on "hold" till I lose weight.  I weight 269 and am 5 feet 5 inches tall.  OF COURSE...I would love to lose weight, and with my loss of appetite since kidney failure, and my exhaustion, I am not walking to the library or out for pleasure anymore.
This is all stressing me out.....losing weight seems like impossible for me, the U of M has suggested by pass surgery, which I am very familiar with as my daughter had the surgery 4 yrs ago, and after watching what she has gone thru....it is not something I would consider.  My internist feels that with my kidney failure and dialysis, that this is NOT an option.  Help!!!!!





EDITED: Topic moved to proper section "Dialysis: Transplant Stories" - Epoman, Owner/Admin

MODS WAKE UP - Epoman

[Bear]

Hmmm, let me see...269/2.2   =   er...about 122kg. Ah, O.K. Well I'm 1:83 (...6' in old money) and currently have a 'target' weight of 125.5kg. I was 142kg when I started haemo...partially due to all the glucose I sucked in while on P.D. !
THe surgeons "won't look at me" until I'm at least under 110kg. THat's fine, as I'm in no hurry for a transplant & all its new complications. But I'll get there one day...
You have to remember excessive weight is big complication in surgical procedures. It's also no good for you while you're lying there in recuperaton either...
I agree about NOT going the stomach by-pass thing. No unnecessary surgery!!
I know it's hard, but if you can get decent dialysis, your energy levels should go up. Mine has...eventually...now my Epo prescription has been up'd. 
Best wishes....

[kitkatz]

See our weght loss thread under diet.

[charee]

Hi Nan I have pkd also and have been told i have to lose weight before i can go on the list, i have been trying but its hard when you don't have the energy .My goal is to start walking everyday will have to start off slow but iam hopeful that i can increase as time goes on .Good luck to you and  wish you well .

[BigSky]

You need to do some type of exercise to get more stamina. Otherwise you will never build stamina sitting around.

Start out very slow.

The thing to remember is you are not going to feel better tomorrow or the next day just by walking.  You need to look long term and set a goal.  Set goals in 12 week periods.  Such as in 12 weeks I want to be walking 30 minutes a day without getting tired or worn out for the rest of the day.  Then make a schedule to reach that goal.



So walk 5 minutes every other day for a week.  After that first week add a couple of minutes to each time you walk.  When you reach 15 minutes of walking in the morning take and reduce the time by 5 minutes and then in the evening walking that 5 minutes plus a minute or two adding time each day.  Keep a journal of how much time you walked, how you physically felt.

If there are some days you are very very tired trying to do it cut back on time a bit.  Feel better maybe do a little more time.

If you feel 5 minutes is too much, start at a time you feel you can do.  Even if it is only 1 minute a day and only adding 15 seconds a day to it will greatly help out your stamina in the long run.

Also apply the same principle to your diet to speed up weight loss.

[Zach]

BigSky is absolutely right.  Ask your Doctor, he'll confirm it.
Every little bit of exercise does work!       

[Black]

... I was told by the University of Minnesota that I needed to lose 90 pounds before I could be "called"for a transplant. I passed all of the qualifying tests for a kidney transplant and made the National List with being on "hold" till I lose weight.  I weight 269 and am 5 feet 5 inches tall.  ...

I know a PKD patient who has a 40 pound cystic liver in addition to her cystic kidneys -- her stomach is huge but the rest of her is NOT fat!  Expecting her to lose weight would be ridiculous.  My husband's kidneys were estimated to weigh between 22 and 40 pounds several months ago -- considering he has gone from a waist of  38 to 44 inches, and now has to wear suspenders, I suspect they are closer to 40 pounds or possibly even more.  For many years his normal weight was 205 to 220 -- he now weighs 270 -- only is stomach is "fat".

Has anyone estimated the weight of your cystic kidneys, or possible cystic liver?  When they calculated the 90 pounds did they take into account how much your kidneys weigh?  If you weigh 269, and 40 pounds of that is kidneys, then you actually weigh only 229.  So, if your target weight is 179, then you only need to lose 50 pounds.  But if the actual target weight for you is 139 plus 40 pounds of kidney then you do need to lose 90 pounds.  If your kidneys are still growing -- losing 10 pounds and having it replaced by 10 pounds of cystic kidney would make it appear you are not losing weight.  If you haven't discussed any of this with your doc then you need to do so.

Have you had your adrenal and thyroid function checked?  Adrenal insufficiency and hypothyroidism can cause debilitating fatigue and weight gain.  For thyroid testing do not settle for TSH testing as it is frequently not an accurate measure of thyroid function -- ask for Free T4, Free T3 and Reverse T3.

All that being said, pester your health care team to make you feel as good as possible, stay on your diet, and exercise as you can.  I can't imagine being in your shoes but many have been, and they lost the weight to get their transplant.

Please keep me posted on how you're doing.

[Nan]

Dear Black...Thank you for your very informative letter....yes indeed my liver is also covered with cysts.  I have asked my nephr many times....."exactly HOW BIG ARE my kidneys and liver.  I do carry extra weight around my middle, and I have had two cysts rupture in the past...not fun!...and they DO cause me constant pain.  I guess I need to "pin" that doctor down on the sizes of my infected organs!
BigSky...Thank YOU for taking the time to give me idea's to work on....we all know we NEED to exercise...but darn it....it is just getting out there and starting....you have given me...."food for thought!" Thanks.
To the rest who have answered.....thanks....every little bit helps!

[nkviking75]

I am new to this site and I am sure I will be looking here for answers to my questions and problems. I was told by the University of Minnesota that I needed to lose 90 pounds before I could be "called"for a transplant. I passed all of the qualifying tests for a kidney transplant and made the National List with being on "hold" till I lose weight.  I weight 269 and am 5 feet 5 inches tall.  OF COURSE...I would love to lose weight, and with my loss of appetite since kidney failure, and my exhaustion, I am not walking to the library or out for pleasure anymore.
This is all stressing me out.....losing weight seems like impossible for me, the U of M has suggested by pass surgery, which I am very familiar with as my daughter had the surgery 4 yrs ago, and after watching what she has gone thru....it is not something I would consider.  My internist feels that with my kidney failure and dialysis, that this is NOT an option.  Help!!!!!

Nan, our situations are strikingly similar, including the state where our transplant centers are located.  (Mine is the Mayo Clinic.)  I have a relative who had bypass surgery.  Her experience was enough to put me off on bariatric surgery, plus everything I need to do to lose weight the conventional way, I'll still have to do after surgery.  I have not been a blazing success at weight loss, but the 35 lbs I did acheive greatly increased my stamina and sense of well being.

One piece of advice I got is to wear a pedometer (about $3.50 at Walmart) and watch the number of steps I take in a day.  Then gradually try to up the number of steps.  You don't have to do it in a big burst of activity.  You can do a lot of small things, like taking  the steps more often, parking a little farther away at the mall. and so on.  Those little things do add up.

BTW, I still have a long way to go too.  Don't get discouraged.

[meadowlandsnj]

This is all stressing me out.....losing weight seems like impossible for me, the U of M has suggested by pass surgery, which I am very familiar with as my daughter had the surgery 4 yrs ago, and after watching what she has gone thru....it is not something I would consider.  My internist feels that with my kidney failure and dialysis, that this is NOT an option.  Help!!!!!

Contrary to what some medical people would have us believe weight loss surgery is not a "cure" for obesity.  I also know people who have had this and spoke to a nurse who takes care of people who have had it and it's no walk in the park.  They have you believe that BAM all your problems are solved after WLS and you can live a happy life.  In some caes that may be true but the more research into I read the more I see it as a huge money making scheme for the doctors.  For some extremely overweight people it may have been great--a lifesaver.  But not everyone is a candidate.  You have to commit to living with this the rest of your life, follow the eating plan with the extra protein and the supplements.  God knows I've been overweight in my life, I went all through my school years as overweight.  I lost weight by exercising and trying to eat right.  I know first hand how hard it is and it's a constant struggle for me.  I need to lose weight now, about 30-40 lbs.  I've been doing Weight Watchers and doing pretty good on it with the points system.  You lose it slow but you learn how to make choices and portion control is important. 

Donna

[glitter]

Nan,I feel for you-I have to lose over 100 lbs to be considered to be my husbands donor- I have never been thin-it is daunting...

[coravh]

Hey Nan. I had my transplant at the University of Minnesota in 2002. I'll be there in Nov. for my annual check up. I think that the folks that work there are great.

I know it is hard to lose weight, but you will be so much better off after the transplant. I fell into a rut and was in awful shape pre-transplant. Because of that it took me a lot longer to recover. I regret not pushing myself harder. Are you anemic? Is that part of the reason you have problems walking? If you are, you should get more aggressive with your team to treat the anemia. It will make a world of difference. Even if you can't do much, try walking for only 5 minutes several times per day. If you keep that up, you will be able to increase your walking time and decrease your weight gradually. After the transplant my arms were very weak, so when I got home I started pumping soup cans. they were easy to hang onto, and not that heavy. You could try something like that. It's not a big effort, but every little bit counts and it's something you can do even when you aren't strong enough to walk around.

Good luck to you. I'm rooting for you.

Cora