Losing Weight Frustration

[HippieMama]

Hello everyone.  I haven't been on the forum for ages.  I decided to come back because I really need to be able to chat with other people who really understand what I'm going through.  My hubby loves me and is always there for me, but he really doesn't "get it". 

I have known that I've had PKD for almost thirteen years.  My kidney function has declined quite a bit.  My function level is to the point that dialysis looks a lot closer than I would like it to. 

I have to lose quite a bit of weight in order to be placed on the transplant list when my evil beans finally fail.  This is a source of frustration for me since it is a very slow process.  I get tired going through my normal daily activities, when I add working out to my day, I am totally exhausted.  I keep working because I know I have to lose the weight in order to qualify for a transplant.  I am tired of people telling me that if I just use this diet or that diet that I would lose weight faster.  People just don't understand  that I can't do the fad diets due to my kidneys. 

I am not sure what my point in posting this is.  I guess I'm hoping to find someone else with kidney disease that is working to lose weight.  Maybe we can chat and support each other. 

Andrea

[smcd23]

Andrea, I am surprised you didn't lose weight from just being on the pre-dialysis diet. Then again, from what I understand the pre-D diet is lower in protein than the D diet, so I assume you have to get your calories from carbs? If I am wrong, please tell me!

I have been struggling to lose weight since I had my son. Since I only have 1 kidney, I am paranoid about the amount of protein I can take in per day. What I've found helpful is signing up for myfitnesspal.com I have the app for my iphone so I can literally scan the barcode on anything I eat and it pulls up the nutritional information. I have a set # of calories and I try to stay in them each day. I also started doing a meal replacement shake at lunchtime most days. I am using the Body by Vi shakes. They have a decent amount of soy based protein, but I mix them with OJ, fruit and ice. The mix itself is decent tasting so you don't need to mix it with anything too strong. I've slowly lost close to 20lbs since I started.

I am not trying to sell you either of those things, just letting you know what I found that is working for me. Every person is different. I for one will maintain a weight once I hit it, so if I lose a few lbs, maintenance isn't a big deal for me. Same is true in reverse, I gained close to 100lbs when I was pregnant, and I've carried it around (minus the 25 or so that came off with delivery) for almost 3 years until recently.

What are you doing for a workout? I don't work out, I don't have time. But doing small things, like a short walk after dinner or parking father away at the store or taking the stairs when you can do add up. (And if you use the myfitnesspal thing, you can also track your exercise and that will increase the # of calories you are allowed that day).

Might be worth checking out that site, or keeping track of what you eat during the day. I was shocked at how many calories I was taking in per day, even though I felt like I wasn't eating that much.

I'll be a weight loss buddy for you even though I don't have true kidney disease (though I guess only having 1 puts you in that category according to some doctors). I know how hard it can be especially when my friends are losing crazy amounts of weight fast using things that could be really dangerous for you and I. That gets discouraging.   

[jbeany]

Hippie, we did have an active weight loss thread going for quite a while, and then it died out.  Feel free to read through it and post again, even though it's not been active for so long (you'll get a warning message - just click through it).

http://ihatedialysis.com/forum/index.php?topic=1571.msg391261#new

If you get us started again, many of us will be grateful for the kick in the seat.  I lost 60 pounds with an effort that began shortly before D, and continued right up until transplant.  I've gained 10 pounds since spring, between exams and eating junk food while I was kitchen-less during my move and remodeling, so I need to join in.

And if you want to know how - it was a 3 E diet.  Eat less, Eat better, Exercise more.   Nothing easy, nothing quick, just slow and effective.  Need to focus on that again until this 10 pounds of pizza and fast food goes away!

[HippieMama]

Thanks for the replies.  I will take a look at that link that was posted. 

I gained weight over a number of years.  Emotional eating following my father's stroke when I was caring for him, pregnancies, and multiple miscarriages packed on the pounds.  I have slowly been losing weight.  I've lost about 25 pounds in the last nine months. 

Being pre-d I have to watch the amount of protein I take in.  I had several people suggest the Body by Vi shakes, but I haven't checked with my doctor to see what he thinks about those.  I haven't met anyone using them that has PKD. 

[Cordelia]

I have PKD and I've done it.

I lost 75 pounds, after starting dialysis.

Excercise, (not just watching what you eat alone) is key.    I've been on the renal diet for almost 2 years.

I feel SO much better losing all the weight I used to carry.

I cut out all soda and juice AND dairy.  Drinking water is best for you. Oh yeah, and I cut out all the junk food, including fast food. Once I cut out those foods, the weight started dropping. I used to be a size 18. I'm down to a size 12. I never thought I could do it, but I did.

It's not easy, but  I lost all this weight in about a year and a half.

One thing that I will add....I couldn't lose ANY weight before I started dialysis. No matter how hard I tried, what kind of diet I tried. Nothing worked. I have a very big feeling that my problem was fluid retention, bigtime. Once I started dialysis, everything changed. I wonder how much of that weight was fluid, looking back now.

You may be retaining fluid weight and not realize it like me at the time. I know now, it likely was the cause of me not losing the weight I needed to.

[HippieMama]

I know I have a fluid problem.  I've been having more problem with swelling since they started me on a new medication.  I feel like the pilsbury dough girl, lol!

[Cordelia]

That's likely why you're finding it difficult to lose weight.  I know I had the same problem. Dialysis made a huge difference for me.

[jbeany]

Yes, it's frustrating to be losing fat, and not seeing it on the scale because your body is collecting fluid instead!

[Cordelia]

HM, what stage of renal disease are you in now? Do you know?

[HippieMama]

HM, what stage of renal disease are you in now? Do you know?

I recently changed to stage four after learning that my function has decreased more. 

[Cordelia]

I just wondered being that you may be retaining fluid, what your stage might be.

[MooseMom]

Once I entered CKD5 (though still pre-D), my appetite was still decent, but when I sat down to actually eat, I didn't eat much.  I do not eat junk food, and I do not drink sugary soft drinks.  I have never had a sweet tooth, so I was never tempted by the usual culprits.  I did continue to exercise.  I exercised every day...I swim, cycle and walk. 

Despite all of this, though, every time I went to the neph, I'd weigh a couple of pounds more.  I had to finally accept the fact that my kidneys were failing and that it was most likely the case that I was retaining fluid.

Since my surgery, I've lost 15 pounds, and I can promise you that it was all fluid.  What was sorta frustrating was that my tx team calculated my BMI based on the weight of my fluid filled body.  I was classified as "overweight" (but just barely), so if they were to recalculate, my BMI would now be normal.

Fluid retention can be insidious.  I have very thin legs, so the fact that they were retaining fluid wasn't obvious to anyone but me. 

[Cordelia]

Oh my goodness, MM, you were stage 5 pre d?  How did you ever have the energy to excercise?   That's amazing!!

Going up a flight of stairs for me (when I was in stage 5 I was living in a raised bungalow.) was a huge chore for me, I was so short of breath!

[HippieMama]

It is reassuring to see that some of you had an easier time losing weight after the fluid came off once you started dialysis. 

[MooseMom]

Oh my goodness, MM, you were stage 5 pre d?  How did you ever have the energy to excercise?   That's amazing!!

Yep.  But exercise has always been a stress reliever for me, especially swimming.  So I just made myself do it.  I felt I was "in training" for a transplant, whenever that might have happened.  I wanted to be in tip top shape.  But it was not easy.  I had to marshall my energy, and there were naps involved.  LOL!

[Cordelia]

HM, yes, it was easier after dialysis. Pre-dialysis, forget it, no matter how hard I tried, I could never lose weight.

MM, that's so awesome.  Swimming is great!

[conchman]

Strange I am way pre "D" but with the PKD, my portion control seems to have automatically fixed itself.  Meaning, with the pressure on the one side where the cysts are running amuck, and due to the pain the suckers can create, I cannot eat anywhere near what I used to without adding to the pain, so I eat less.  I have lost almost 10 pounds without even "trying".  Good luck I agree with most it should be a full circle attack, eat right, get as much excercise as you can (within doctors agreement) and just take care of yourself...I am rooting for you... 

Good luck and come back for support when needed, we are always here, unless we are there...