How Do I Win This Battle?

[peleroja]

Throughout all of last year and the early part of this year I managed to lose 60 pounds despite being on PD.  I did it mainly by riding my stationary bike 10 minutes at a time, 8 times a day.  Then in April of this year my life went to hell (detailed elsewhere on the board), and due to back to back surgeries I was unable to ride my bike for 2.5 months.  Since I was back on PD, I gradually gained back 20 pounds.  Now that I am back riding my bike, things seem to have changed.  I no longer have the strength to ride 80 minutes a day.  Most days I can manage 60, sometimes 70.  I'm on one extra PD fill, so my dextrose from the dialysate has increased.  My food intake remains approximately the same.  For a couple of months I was doing the lose a pound, gain back a pound routine.  Now, however, I am steadily gaining half a pound a day, despite my best efforts.  The reason the weight loss is such a big deal for me is that UCLA will not even put me on the transplant list until I weigh 160 or less.

So, my question to y'all is how can I increase my exercise?  Before you start typing, I am unable to walk for any distance due to arthritis in my lower back.  I have practically no upper body strength, so I'm not sure about weights.  Overall I seem to have lost a lot of strength, most likely due to all those multiple surgeries (my torso looks like I'm a stabbing victim!).  A body doesn't heal as rapidly at 66 as it did at 16!

Ok, now you can start typing.  Constructive suggestions, please. 

[KICKSTART]

I wish i had a magic wand. I dont really think i can be of much use to you, only to suggest that you give yourself a bit more time to recover. What about instead of pushing yourself to do the 80, be happy at the 60 and aim to do one minute more each day,then you might achieve your target in baby steps rather than leaps. Although you are good with diet , do you have a dietician? It might be worth seeing if she could make some suggestions ? I know exactly what you mean about PD and weight , over the past 4 yrs i have gone from skinny to what i would call fat
(well it is for me) As soon as i get back on my feet im going to look at somehow shedding those pounds !

[jbeany]

I agree with kickstart - get some advice from a good dietitian.  Try keeping a food diary, and see if the dietitian has any suggestions for ways to cut calories while still staying in a renal diet.  Make sure you have a good handle on portion control, and increase the fruits and veggies.  Several studies I've read recently have shown that purple and blue fruits can increase weight loss and hold off weight gain, so make sure you are getting lots of cherries and blueberries.  The 10 or 20 minutes of exercise you are missing would only have burned off a couple hundred calories, so if you can figure out how to cut that out of your diet, you should start losing the weight again.

You don't need a lot of upper body strength to lift weights - you just have to start really small.  Get some little one pound hand weights and just do lots of reps.  I use mine while I'm on my treadmill - you could do the same while you are on the bike.  Pedal and swing the weights back and forth at the same time.  Every little bit counts!

[pamster42000]

I would encourage you to go to a physical therapist's. They are triained to help people find the right exercises that pertain to their own personal needs and goals.

[twirl]

with your determination -- you will and can do anything

[Stacy Without An E]

First, I have to congratulate you for taking your personal health into your own hands.  As wel all know, doing any type of exercise while suffering through Dialysis isn't easy.

I had a similar issue where I'm working out four days a week, but can't seem to get rid of my muffin top belly.  Everywhere else is getting toned and looking better, but my stomach just won't go away.

At this point I was under the mentality that I could eat whatever I want, as long as I didn't miss those four days.

That's a little bit of a fallacy.

For the next month, I'm eliminating all dairy, all processed food and eating more fruits and vegetables.  I'm also eliminating any bread that has enriched bleach flour in its ingredients.

I'm already feeling better, my digestion has improved and I'm looking forward to a slimmer middle.

There's obviously something different than before with your Dialysis and I'm hopeful you can find it so you can get back to your regular exercise routine.

[Deanne]

Do you live near anyplace that offers water exercise? Something like that might give you the exercise you want without hurting your back or other joints.

[willowtreewren]

I was going to mention aqua exercise, too. Is there a wellness center nearby that offers a heated pool for arthritis sufferers?

I keep my pool pretty toasty when I can and spend a "relaxing" yet strenuous 50 minutes working out in it every day. Really helps.

The tip about talking with a dietitian is also excellent.

You can do this. Look at what you have already accomplished.

Aleta

[Savemeimdtba]

She's on PD though... so she's not allowed to get in a public pool with the catheter. 

I need to start exercising as well.. since I started PD I gained back all the weight I lost while on hemo (i didn't lose that in a "healthy" way per se, but still )

[MIbarra]

I'm surprised the hospital won't put you on the list while you lose the weight!

Weight was the same problem before my transplant, but my hospital listed me, put me "on hold" and then allowed me to wait my time on the list while I lost some weight.

[Savemeimdtba]

They won't put me on the list either... I keep meaning to ask my Neph about the "hold" I have been hearing about here, that would certainly be better and more fair in my opinion. 

[cariad]

Peleroja, I am sorry that you are going through this. I wish I had some useful suggestions for you, but I think those have already been covered by others.

I have to say, I will add this to my reasons to loathe UCLA. I have said this in other posts, and I will say it here to you: they have no right to withhold medical treatment on the basis of weight alone. This is lunacy. They won't even list you as inactive? If I were you, I would demand the credible, scientific, peer-reviewed research that supports this decision. If they have it, I would sure like to see it.

I am all for diet and exercise if it is done to feel better or just attain a look that the individual prefers, but I become enraged when it is mandated by doctors under these types of threatening circumstances.

I wish you the best of luck with the weight loss and with UCLA. 

[Ang]

diet  and  exercise ,slowly  but  surely  is  the   go

[bountyhunter_ga]

Hello , like you sometimes I can watch the weight just climb.Seems like the closer I get to my transplant the heavier I get.

I have learned to live without salt, Once you learn not to use salt it complicates the matter, but it gets better.

Don't buy any more can foods, use only fresh cut vegetables and fruit. Cut any meat protein down to 4 oz a day.

If you just absublutly need salt, use citric acid food grade found on ebay.  Do what works for you, make it a change of life so its not work. and good luck,,

[Des]

My heart goes out to you .... battling with weight..... it really is a battle that a very few doctors understand.

My surgeon explained to me that "operating" through layers of fat is dangerous and the wound does not heal as quickly. He also said that such a big op places a lot of strain on the heart and other organs... Now a heavy person already strains the heart... so the complications during the op goes up and it is just more dangerous to do the transplant. (your heart can just stop)

I know it sucks but I think the risk taking must be on the pasients head and if one is willing to take the chance,  why not? They don't see it like that and they want to keep the risks down to a minimum.

My BMI is 34 . it has to be 30 before I got listed.... but I saw the surgeon and he accepted me as I only have a fat "ass" and my abdominal area is "skinny" (sorry it is the only way I could describe it heheheh)

Get a second or third oppinion on this.

Hope you get this sorted out SOON.
 

[cariad]

My surgeon explained to me that "operating" through layers of fat is dangerous and the wound does not heal as quickly. He also said that such a big op places a lot of strain on the heart and other organs... Now a heavy person already strains the heart... so the complications during the op goes up and it is just more dangerous to do the transplant. (your heart can just stop)
 

Hmmmm, I take issue with much of what your doctor is saying. BMI does not just measure a person's fat content - it is a completely random, quite inadequate, measure of height against weight. There was a newspaper story in Britain about a year ago profiling a man who was turned down to donate bone marrow because he was over a certain BMI. If I recall, he was a professional weight lifter. The NHS would not make an exception.

Even if you are talking about a person with a lot of fat, 'dangerous' is not really the most accurate word. I would say 'inconvenient' is better. From what I have read, surgeons are taught from day one to detest fat because it makes their job more difficult - harder to see, that sort of thing. I disagree that all heavier people strain their hearts in some especially bad way. Peleroja mentions exercising much more than I do, and people's bodies adjust to whatever weight they are.

I have been listed since 2007. People who are supposedly underweight have markedly inferior health outcomes in transplant, yet my BMI was probably around 17 when I was listed - no one said a word. Then I became really ill and my BMI fell much further. I was never put on hold or made inactive or anything. This screams weight discrimination to me. Where are the PubMed articles that say "Here we have proof that obese individuals suffer these terrible outcomes in transplant, whereas those who lose X number of lbs (not all of which will be fat, incidentally) have no worries whatsoever"? If someone were to tell me that I would be denied my choice of healthcare (which I pay dearly for already) based on some physical characteristic of mine, they had better have a stack of research to support their demands. All I could find were a few articles whose results contradict each other. Not impressive.

Des, I think your suggestion about getting more opinions is excellent. My center will transplant people up to a BMI of 35. It really does vary widely over here.

Good luck, peleroja!

[RightSide]

There is now a school of thought that bouts of vigorous aerobic exercise are no better, and may even be worse, than just keeping mildly active throughout the day.  Walk back and forth through a big indoor shopping mall.  Park your car far from where you need to be and walk the rest of the way.  Vacuum and shampoo your carpets frequently.  Mow your lawn often.  Etc.

[bette1]

Have you tried adjusting your diet.  Due to our really tight budget, we have practically stopped eating out and are doing most every meal at home.  I usually do three sensible meals and desert, I cut out sweetend drinks and I lost 10 lbs.  I just made the list at 158, so I feel your pain.  It seems a bit unfair because PD automatically adds weight because of the fluid.

[Hanify]

Firstly you should be proud of yourself for still managing the 60 mins!  Wow, I couldn't do anything like that.  Good on you.  I would only suggest to look at preservatives - i.e try to cut them right out.  It's a pain having to do everything from scratch, but it's worth it.  Have a look at Restorer's website for some food ideas too. http://www.crookedkitchen.com/
I was just recently in Samoa, and had a few swims - oh joy.  It made me realise how good swimming would be.  But as mentioned, we're not allowed dammit!  I can't believe someone hasn't come up with a good cover for the catheter.

[peleroja]

Thanks, everyone, for suggestions.  I've started incorporating what I can into my diet and exercise programs.  I actually had a pretty good day yesterday (in spite of 101 heat in SoCal), and managed to do 80 minutes on my bike.  Yayyyyyyyyyy me!  One day at a time.

[Hanify]

Man I am soooo impressed.  You're an inspiration!