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#1 susieq40

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Posted 12 November 2010 - 04:04 PM

Well, last week my lung doctor finally got back to me. It's been 3 months since she told me about needing a transplant. WELL....now she says I have to lose 70 lbs in order to be put on the list. GRRRRRRRRRRRR why couldn't she have told me this 3 months ago!!!!! oh!!! I'm so mad and frustrated!! All I could do was..say ah huh...and she says call me back at 3 or 4 that day...and I just hung up, and bawled!!!! She said that they won't even put people on the list that have a BMI over 30% because they just don't do well.... So I cried so hard..I gained 40lbs just from chemo, and prednisone for 9 months. I mean..40 lbs I didn't need to begin with! I just feel like this is such a huge undertaking..I mean I can't exercise in a fashion to burn calories to lose weight. And I've been on every diet out there it seems like throughout my lifetime, because I've always been somewhat overweight, but it was not too bad until 6 years ago, when I started staying home with the boys when we first got them. I can't stand the liquid diet drinks, it's the after taste, and I burp them up my esophagus all day. I was even on a diet when I was 21 years old after my second child that was 650 calories a day, and I lost 50 lbs in 4 months. But that was so extreme, and now you shouldn't even go below 1200 calories. The 650 calorie diet helped mess up my digestive system and metabolism. That's been 22 years ago...wow...

So anyway, my husband came home because I was crying uncontrollably. He called the doctor back, and found out she didn't think that weight was going to be a factor. I don't understand why didn't she find this out when we knew that I am headed that direction. So to say, I'm a little steamed is an understatement. So frustrating!!!!.

But my hubby and I decided that we've been really lazy in our eating habits and lifestyle and needed a change anyway. But It's not going to be easy. I don't know what I'd do without him in all of this...

I just hope I have enough time. In the meantime, the lung doctor is still going to send me to meet a lung doctor that specializes in ILD and a Rheumatologist that specializes in Sclero. Maybe we'll get more ideas and hopefully something we can do to slow down the lung disease. All we can do is hope. All my friends and family are willing to help me get through this. It's so hard not to be depressed, and try to be more positive.

Warm HUGS and best wishes to all those out there having a difficult time!

#2 Jeannie McClelland

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Posted 12 November 2010 - 05:11 PM

Oh Susie, what a blow. I need to lose 30 pounds - would it help to have me be a diet pal? We could check in each week and see how each other is doing. I bet there are others on the Forum who would join us.

I'll be holding you in my thoughts and sending you warm hugs on a daily basis!
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#3 enjoytheride

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Posted 12 November 2010 - 05:20 PM

How frustrating for you- I'm so sorry that you have this on top of everything.
But I am impressed with your hubby. What a help he'll be.
(((hugs)))

#4 red

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Posted 12 November 2010 - 11:01 PM

Susie, I'm so sorry to hear of your troubles. Please know we are all there for you, you are in our thoughts!

I've gained weight on prednisone too, and could stand to lose 30 - 40 lbs. If it will help you to have diet pals, I'm in with Jeannie on this! Please let us support you in any way we can,

red

#5 Sheryl

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Posted 13 November 2010 - 12:02 AM

SusieQ, it is wonderful that you husband is willing to go through this challenge of losing weight with you. I feel so bad that your doctor was so forceful in her dealings with you. I guess sometimes they feel that for our own health and well being we have to be shaken up a bit to listen. If we aren't willing to help ourselves how do we expect them to help us. It takes work and energy and more work and a will power to shove aside all our favorite snacks. I'm willing to work at losing 30 to 40 pounds. It will be hard with my favorite season on us but I had already decided to cut back severely and after the New Year to really kick my plans in gear. I am diabetic so it makes it even a bit harder for me to lose weight but I don't plan on having that as my way out. I just found out my Cholesterol is really high once again, along with all the Triglycerides. I get the diabetes under control the rest of me goes wacky. Life can be a constant battle but hey it's life. I want to live it for a very long time if possible. I'll do what it takes no matter how long it takes. Just as long as I am here on this wonderful planet. My box of chocolates my husband is finishing off then he too will learn to eat smaller portions and better food choices also. Jeannie, I guess we will have to give out bunches of Broccoli or bouquets of Cauliflower, instead of Chocolates. Okay! I am ready.

Strength and Warmth,
Sheryl

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#6 Shelley Ensz

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Posted 13 November 2010 - 03:03 AM

Hi SusieQ,

I'm terribly sorry for your bad news. I can only imagine how upsetting it must be!

Ask your doctor if you can see a nutritional counselor for advice. We were required to go through an assessment and counseling with a nutritionist before my husband was accepted. I remember he had to fill out a lot of questionnaires for it and we had an hour session with a nutritionist, even though my husband was within the healthy weight range already. So even when you get to a more svelte weight, they will still want to make sure you are eating right and getting all the nutrients you need. They are really big on both diet and exercise both pre- and post- transplant. As you have just so unceremoniously discovered. And this will be just the first of many hurdles to jump over, so major congratulations to you -- and your husband -- on already putting your chin up and thinking of positive ways to tackle this!

It might also help to understand their reasoning with this. One is that a lung transplant is a really major surgery and people who are not in the ideal weight range do not fare as well. In transplant terms, this means they die off faster, which of course is the outcome that you are wanting to avoid. Another part of it is that at transplant, they will give you massive (really massive!) doses of prednisone (and other drugs).

My husband developed insulin-dependent diabetes literally overnight of his transplant, because of the prednisone. So he went from perfectly normal blood sugar to needing both short and long acting insulin shots (altogether about five shots a day). Overnight! So we had to become instant experts in diabetes, insulin, food management, etc. By extremely careful monitoring and planning, with slight reductions of his long-acting insulin for every two days that he didn't require short-acting insulin (testing five times a day), and with gradual reductions of his prednisone, too, he was able to become diabetes-free in three months. Now, he started at a normal weight so can you imagine the insulin odds he would have been up against, otherwise?

Since they are going to go out of their way to introduce you to the wonderful world of diabetes, tending to things now will help arm you for that great adventure. Sort of like a soldier, going to boot camp!

They were fierce on my husband continuing and expanding his exercise, too. Even when he needed 8 to 15 liters of oxygen with activity, he still worked part-time as a restaurant greeter (on his feet for hours at a time). He went to a sit-and-be-fit exercise class twice a week. He walked in the malls every day for at least 20 minutes and/or a certain distance. And they always wanted him to do more than that, and to quit making it into a two-hour walk because he would stop and chat with all the shopkeepers. Think in terms that you are preparing for a medical marathon of sorts.

You'd certainly think that being so sick that you need a transplant in the first place, not to mention on drugs that cause weight gain, and suffering from scleroderma, that it would get you off the hook for this massive endurance exercise, wouldn't you? Unfortunately, it is just the opposite. However, after transplant you'll thank your lucky stars that you stepped up the plate, and did whatever it took.

Also, if you have hypothyroidism, which many of us do, you may find that you actually need to eat more in order to lose any weight. I can't lose weight unless I eat at least 1700 calories a day (but not much more than that), including a lot of fiber. That's actually very hard for me, you know, what with heartburn and G.I. issues, so left to my own devices my eating falls way below that, whereupon my body goes into hibernation mode. So do not make the automatic assumption that you need to start starving! Actually it might be just the opposite -- and that might not be any easier, either.
Warm Hugs,

Shelley Ensz
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#7 miocean

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Posted 13 November 2010 - 05:15 AM

SusieQ,

I sympathize with you in two ways, needing a transplant and losing weight. I was in the kidney transplant program, not lung, and things might differ, but here are some things I can share:

Different transplant centers have different requirements. We were told by a transplant surgeon at a support group if you are turned down at one center because of your weight, investigate another location. 40 lbs. may seem like a lot to you, but there was a very heavy woman at my dialysis center and I asked her if she applied for a transplant. She said she didn't qualify because of her weight, they wanted her to lose more than 100 lbs. and she had already lost 100!! She really was pretty amazing, worked full-time as a teacher and was always smiling and joking, an inspiration to me.

I became sick 4 months before the kidney came along and started losing weight. I went from 173 to 153 and actually got reprimanded by the nutritionist and nurse practitioner. Then my scleroderma doctor did the same thing when I lost 5 more pounds over a 3 month period. Like you, I've had weight issues my entire life and in the past was only able to maintain 140 lbs., a good weight for me, through vigorous exercise. That is what I weigh now and I monitor it daily because of the prednisone. My body tends to want to weigh 170 and I don't like that weight.I am not able to exercise very much, I have ILD and just don't move very well so I watch what I eat and if the scale goes up, I cut back a little.

It is most important to watch your calories. Not that I am advising this, but a nutrition professor at a major university just did an experimental study on himself. For a few months he ate nothing but junk food, high salt snack foods and twinkles. He kept his calories to around 1600 a day. He lost 20 lbs. and his cholesterol went down. As soon as he added meat to his diet it went up again. Try to eat healthy foods but watch your calorie count and even without the exercise you should drop some weight.

I hope things work out for you, that you get on the list and get a lung right away. Keep us updated, please,

miocean
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#8 NorthStarHope

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Posted 13 November 2010 - 08:49 AM

Oh my goodness susieq,

Sometimes I truly do not understand people in the medical profession, that have some control over our lives. They seem to not have enough concern for our feelings. This is something they should have let you know earlier, so you had some time to make some decisions.

I once went to a doctor after being in accident cause by a delivery truck who was totally at fault. The accident caused me back problems for the rest of my life. Being upset after all I went through, the doctor had nerve to actually tell me I was too fat and it would help if I lost weight. I am so sorry you had to deal with this, they should be ashamed of themselves. Wishing you the very best.

Sincerely,

northstarhope

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#9 Jeannie McClelland

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Posted 13 November 2010 - 01:05 PM

I've been thinking about the exercise thing off and on all afternoon. One of the really popular weight loss programs awards extra points for exercise, but what counts as exercise is much broader a range than you would think. My oldest daughter has lost about 70lbs. with this program and I had seriously thought of joining the local group, but a) it cost more than I wanted to spend, B) I often don't have the energy to go out to the meetings and c) I know I wouldn't go during cold/flu season or in cold/bad weather.

So, I started looking around online and one of the international drug companies has a great site with all sorts of health tips and information. They even have a great FREE weight loss program that you can customize for your needs. It has a complete list of activities (from running a duster to running a marathon!) and awards points for how long and how hard you go at whatever the activity is. It keeps a log of both what you eat and what you do in the form of a diary in which you enter data and adds up both calories eaten and calories expended in 'exercise'. There are lots of options in the program and it will even make balanced menus based on things like needing to cut down fat, sugar, or salt and your food preferences. If anyone wants a link to it, PM me and I'll give it to you.

Susie, thanks for helping me be motivated to get on with the weight loss!

Warm hugs,
Jeannie McClelland
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#10 Joelf

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Posted 13 November 2010 - 07:47 PM

Hi Susie

I'm so sorry to read your post. I can sympathise totally with you as I also have joined the Prednisolone club and put on weight.

Trust me, I know exactly how you feel about your weight and it is so upsetting. However, I would agree with you and certainly not subject your body to a really severe diet; as I'm sure you've found before, the results are only transitionary and as soon as you eat normally any weight lost soon goes on again (and more!! ;)) As Shelley so rightly says, as soon as you restrict your calorie intake , you'll find your body goes into starvation mode and your metabolism slows right down making it even more difficult to lose weight. I know....I've been there!! ;)

Personally I've found that the best way to lose weight is to moderate my portion sizes and only eat when I'm actually hungry rather than picking between meals. I've found when I've put myself on a very restricted 'diet' that it's almost impossible to maintain it ( I can't live on milk shakes for the rest of my life!)

I can see how difficult it for you to burn off the excess weight with exercise but just doing a little bit more each day will help you. I have also had to curtail my exercise a little since having Sclero, as I know now that my lungs will hurt for a few days afterwards if I've overdone it. It took me quite a long while to accept it as I have always been a very active person, but I find that now I can do enough to keep fairly fit without actually killing myself.

I do hope that you are not waiting too long for an available lung for your transplant and shall be thinking of you.

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#11 Amanda Thorpe

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Posted 14 November 2010 - 02:32 AM

Hello Susie

Like Shelley has said this is just the beginning of your transplant journey and it is of course something you can do. How do I know this? Because you are a sclerodermian and we are tenacious and determined, we have to be!

Since having my pacemaker I have made an effort to loose weight, I probably need to lose about 10 pounds and have already made a start. Like you I can't exercise in the traditional sense so I look at household chores as an opportunity to exercise. Tomorrow I intend to vacuum and that's my exercise for that day.

As for food I pay attention to calories and the sugar content of carbohydrates and it works for me. I also have one day a week when I allow myself treats so that I don't end up craving things. Whenever I cut things out in the past I would always crave whatever I couldn't have, even white bread which I don't really like, just because I couldn't have it.

It's great your husband is coming on board because it's easier to change your eating habits with someone else.

Let us know how your weight loss campaign goes and take care.
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#12 susieq40

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Posted 14 November 2010 - 06:17 AM

Thank you, thank you, thank you for all the support you gals. It's so hard to change...but Change is good.

Had a hard week of less carbs and less fat. Hubby is trying really hard to make sure we eat good. He's made really good chicken and pork, seasoned with meat rubs, to add flavor. Flavor is huge.

Adding more veggies and less carbs. I love my loaded baked potatoes, but I'm gonna have to change that down. Being more balanced is the key and smaller portion sizes and remembering HEALTHY SNACKS for in between.

It is definitely easier to do this with
a partner. I have been exercising at the hospital 3 times a week. They bumped me up to 40 minutes. Wow. It's not at a huge fast pace but I'm moving my body. Yesterday, I bent over to pick something up though and strained my back. So hopefully it will heal fast and I'll be back on track. This is hard, but it'll be worth it.

Just had to get past the shock of it all. The doctor should have told me in the first place. But anyway...Will keep everyone updated. I'll try to be here more often. Heaven knows support is the key!!! And I can use as much of that as possible!! Thanks everyone!!! It helps so much to know other people know how I feel and have been in the same sort of situation.

It stinks to be sick and then add requirements to it. Just gotta face that this is my life...and this is how it's going to be, for a long time. Exercise and
eating right is gonna be the way to go for the rest of my life...just gotta keep telling myself that.

Hugs to Everyone!!!! Thanks again!!!
Susieq

#13 Amanda Thorpe

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Posted 14 November 2010 - 07:33 AM

Just gotta face that this is my life...and this is how it's going to be, for a long time.
Can we make this a sclerodermian motto? Truer words were never spoken, way to go Susie.
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#14 Joelf

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Posted 14 November 2010 - 08:04 AM

So glad to hear that you're feeling a little happier and more positive, Susie. :VeryHappy:

There will be no stopping you now!! :)

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#15 debonair susie

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Posted 14 November 2010 - 09:50 AM

Hi susie,

I hope that your neck is doing better since you strained it.

What great news, that you are being so proactive with an exercise program at the hospital, to work along side your deligent eating habits. (I'm proud of you...Keep up the good work)! :jump-for-joy:
Special Hugs,

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#16 erika

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Posted 14 November 2010 - 10:39 PM

Dear Susie and girls,

Since 3 years ago diet has become part of my life and I am happy for that. I am on a diet due to some food intolerance and in the few months I started my diet I have lost 15 kg. Needless to say that I feel much better and my figure looks much better.

I do not have ILD but I had problems with asthma. My breathing has almost completely recovered since I am on a diet. Only my face looks worse but I contribute that to sclero (loosing chin volumn) and aging.

The secret for me was fruit for breakfast, salad/vegetables for lunch (with some goat cheese or fish) and for dinner lot of veggies and salad with some meat. No bread. I did not exercise at all but that would be additionally helpful. All my family has accepted fruit for breakfast which I find perfect. Quick, tasty and goes directly into my blood stream. I take my salad/veggie lunch to my work and my colleagues there have also started to do so.

Susie, wish you luck which ever diet and exercise plan you choose. It is important to work in this healthy direction. Not only because of your transplant requirements.
Keep us updated.

Erika

#17 susieq40

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Posted 15 November 2010 - 01:24 PM

You can use that as a motto...It's hard to get to that realization...that this is what my life is going to be like from now on...but it is what it is...Thanks for all the support!!!

#18 Sweet

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Posted 17 November 2010 - 05:37 AM

Awwww SusieQ, I'm so sorry. One day at a time my love. :emoticon-hug:
Warm and gentle hugs,

Pamela
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