weight loss and gain after transplant

[cariad]

I appreciate all of the input you've shared and am sorry for the controversy this topic seems to stir up.

Oh, good heavens, Diane, no! You have zero reason to feel sorry. Controversial topics are the reason many of us feel comfortable on IHD, because we can express our honest opinion. Plus, how were you to know that this is one of those issues that I cannot be silent about (and others probably feel the same).

I recently visited another renal forum, one for transplant patients, and was reading along and saw a moderator's note saying that this person had deleted the name of a transplant centre from a member's post, because the person had a bad experience at that hospital. The note explained that the mod did not want people who were listed with that centre to be scared by this information - it's a different way of looking at things to be sure. My feeling is, I WANT to hear the range of experiences about these hospitals, and I assume that if someone on IHD asks, they want to hear honest opinions and answers from anyone who has a comment.

Glad things seem to be going so well. Your doctor sounds like a sane one - not all of them are.

[Chris]

I am the oddball, didn't gain weight after transplant and prednisone hasn't even given me chipmonk face (insert your joke here).
Ensure Plus is getting intolerable to drink, so just give me what weight you do not want.

[kellyt]

I gained 30 lbs after transplant and am still having difficiulty losing it.  After transplant my stomach was huge!  It's not as big now, but it's still bigger that it's ever been, and I'm talking a little pooch.  I have a big stomach, but it was bigger after translant.  I HATE IT!  For me it's harder to lose weight on on these meds, but I have been off Prednisone for over a year now.  I'm not still gaining and I lost about 6-7 lbs after stopping the Prednisone.

The horrible side effects I've had post transplant have been the weight gain, the change in my body overall and my hair!  I couldn't go 2 days in a row without somone commenting on my hair (strangers mostly) and I haven't had a hair compliment since transplant.  The meds have messed up the curl and the textrure. 

Oh well...such is life.  I have a kidney and I complain too much.   Good Luck!

[cariad]

I am the oddball, didn't gain weight after transplant and prednisone hasn't even given me chipmonk face (insert your joke here).

This is my point, though. Chris, you did not gain weight on prednisone. If your doctors truly believe that you need to gain weight for health purposes, I imagine you would not appreciate it if they came to the conclusion that "you don't care about your health or your transplant because you're not gaining weight - you must not be trying" rather than attempting to find the reason behind why you cannot seem to gain anything. They probably don't know why you aren't gaining weight other than people are different. Those who do gain large amounts of weight (large being relative) are often accused of being out-of-control, binging, slothful liars who just don't want to put the work in. I have seen this issue from both the overweight and underweight side, and it was infinitely easier from the underweight side - you are not viewed as undermining your own health, you are viewed with sympathy, at least I was. In kidney failure I could not gain weight no matter what I did, and I tried. When I had my eval, I needed to have a BMI of at least 18 or I would be excluded from the trial. They told me to step on the scale and she told me I could take my jacket off, and I just said "that's OK" and jumped on the scale. She was confused by this response, but said nothing. I weighed 102 with my jacket on, putting me at a BMI of exactly 18. That coat was going nowhere!

As much as I am skeptical by the 20lbs statistic, I have to admit that it is almost dead-on for me. I would like to lose 10 pounds, but it is not a health issue, it is a cosmetic issue and I admit this. I actually now weigh around what my LA nephrologist always wanted me to weigh. (Maybe it's a bit of a mental health issue in my case.)

Oh, Kelly! I just loved your last photo and I thought your hair looked gorgeous. I somehow never got round to telling you. I know how much it messes up one's self-esteem to gain weight. I hate it, too, and I really cannot blame the prednisone because I've been off it 5 years. But I definitely cannot complain - I know I gained weight because my health improved so dramatically and if I never lose another ounce, I'll still be thrilled with the results of the transplant.

[RichardMEL]

Interesting about the 20 pounds comment (that's 9kg for us metric folks). I was told putting on weight post-tx was absolutely normal but never really given a figure - one time I heard +10% but yeah, don't know. It certainly jives with me because I gained about 7-8kg, which was bang on 10% for me, and just under that 20 pound mark - now I do fluctuate a bit +/- 2-3kg (mostly on the + side *blush*) but I do find that it doesn't get TOO out of whack.

It's hard when you want to ENJOY food, and I rationalise to myself that "Yes, you should have that super yummy ice cream/ice coffee/fried chicken/whatever because you just don't know how long you will have this gift and opportunity" but I do temper with exercise and I have made changes at home like low salt/cholesterol free spread, I use unsalted cashews when I cook(or eat), I never add salt to stuff when I am out and about (but you buy a buger and friess and it's salt central anyway) and I use skim/low fat milk, order a "skilly late" when out etc(though recently I've cut the lattes and just have a macciato - just a "dash" of milk).

I do agree with Cariad though that you seem to get to a certain point and you just can't take off more than that post-tx weight you have put on. Docs have never mentioned a concern with my weight, but I'm not sure if they really bother to seriously take note of it. I am aware though and do weigh myself on a regular basis to keep tabs. When I don't walk for a few weeks or don't do as much as normal due to weather, or travelling or whatever then yeah I will put on a bit, but it does come back usually which I am pretty pleased about.

I do worry though that I do know that big weight fluctuations can be unhealthy so try and be moderate with my meals, snacks etc... of course I am about to leave the country on holidays and know I will "let go" a bit to sample new/different foods etc... but that's life!