Obesity in CF

[emerenta18]

Hello all! I hope you're doing well and I know I don't come on very often but I was just looking for some insight. I'm from Ireland and there are little/no people who are pancreatic sufficient with CF so my dietician isn't really sure of the effects of obesity in CF, which is probably very rare everywhere anyway! I just wondered if perhaps there might be more people who are PS in the US and therefore perhaps more likely to be overweight? My BMI is 32 and my dietician would like it to be under 30 because transplant centres generally dislike transplanting people with a BMI over 30.

I'm not near transplant stage yet but I guess they want to make sure that this won't be an issue in the future. I just wanted to know if any of you have a BMI over 30 and if this affects your CF in any way? To be honest I know I need to lose weight but I think that being overweight has helped me to stay relatively healthy lung-wise.

Anyway, I've managed to lose about 13 kilos in the past couple of years and I'm going to try to lose 10 kilos more and that will get my BMI into the overweight rather than obese range.

Thank you very much!

 

[suziesmom]

Before my daughter, who is now 23, was born I was quite nervous as large babies run in my family. My Grandmother weighed 14 lbs at birth and I was 10lbs 6 oz. I was pleased when my daughter weighed 7.5. She was small and delicate, so unlike me. She was not diagnosed until she was 11 yrs old. They gave her enzymes and told us not to be alarmed, but that she was going to put weight on rather quickly. She did. Now, though, she could stand to lose a few pounds. She is always asked if she is pregnant. People have been asking her that since she was 14 or 15. It gets old! She really needs a diet - but Drs. are a bit hesitant to put her on one and quite frankly so am I. I sure would like an answer about this! When they diagnosed her they told me to feed her as much bacon, as much "grease" as she would eat. They also told me to have her drink half & half. Sorry, I know that I am absolutely no help at all. Does anyone else out there have any experience with this type of problem?

Hello all! I hope you're doing well and I know I don't come on very often but I was just looking for some insight. I'm from Ireland and there are little/no people who are pancreatic sufficient with CF so my dietician isn't really sure of the effects of obesity in CF, which is probably very rare everywhere anyway! I just wondered if perhaps there might be more people who are PS in the US and therefore perhaps more likely to be overweight? My BMI is 32 and my dietician would like it to be under 30 because transplant centres generally dislike transplanting people with a BMI over 30.

I'm not near transplant stage yet but I guess they want to make sure that this won't be an issue in the future. I just wanted to know if any of you have a BMI over 30 and if this affects your CF in any way? To be honest I know I need to lose weight but I think that being overweight has helped me to stay relatively healthy lung-wise.

Anyway, I've managed to lose about 13 kilos in the past couple of years and I'm going to try to lose 10 kilos more and that will get my BMI into the overweight rather than obese range.

Thank you very much!

 

[gunelle]

Well I'm not obese but need to lose some weight. I am ps, and gain weight easily. My fev1 is 76, when I was 10 kilos lighter my fev1 was 84. I felt better physically... So I think it's better to be fit than to carry extra weight around also for cfers. Ps I have also weighed 10 kilos more than now

 

[kmhbeauty]

I am not obese but I am at a overly healthy weight. I am 5'7 and 150lbs. Anything more then 150lbs makes it harder for me to get around. I am a huge eater which is why I think I have always been so healthy. All I think about is food, and I eat large portions. I eat very healthy though, and am on an all natural health food diet. If you want to loose weight in a healthy way, get a Nutribullet. The nutribullet blends up whole fruits and veggies into juice. I do a mix of fruits and veggies, flaxseed, and turmeric spice. I do not get why doctors would say to eat bacon and half and half. There are healthy fats that someone could consume to gain weight instead of trans fat. Trans fat is so bad for our bodies, it clogs arteries and basically sticks to the body. Your sure to get fat consuming large amounts of trans fat.

 

[semnle34]

Well I have never had issues gaining weight despite having pancreatic insufficiency. I have struggled with my weight for years trying to keep skinny. I diet and exercise and sometimes even skip my enzymes so I dont absorb every calorie or gram of fat in the foods I eat. (I know, I know, its bad for me to do that). Yet I still gain weight. Ive had my thyroid checked, Im not diabetic yet (borderline) and still struggle. My doctor has a problem with me "dieting." He said there is a direct coralation between carrying healthy weight and higher lung function. My FEV's are usually in the mid to lower 80's and fluctuate in between exascerbations. There are plenty of CF'ers who are of "normal" weight that dont have to drink calorie packed drinks to gain. You are not unusual although everyone I know with CF has problems gaining weight. Why some of us are able to gain and why others cant is beyond me.

 

[Jet]

I've struggled with my weight off and on through the years. I'm pancreatic insufficient and have CFRD too. Luckily my FEVs are always solid 90s or better. It wasn't until the last few years that my clinic even worried about or discussed my weight. I guess now that I'm 50 they may be worried that something else, a heart attack or stroke, and not just CF might catch up to me.

 

[azdesertrat]

Wow, I had no idea there were any obese CF patients out there.
I've always had major issues keeping weight on. I got up to 139 lbs. last January. I got sick, lost 30 lbs. in about a week & haven't put it back on since. I have never met- or even seen an obese CFer when I go to any of my doctors.

 

[Beccamom]

I had trouble putting on weight as a child. Now my thyroid is a mess and I easily put on weight. As for being asked if she is pregnant, is you daughter bloated? My CF dietitian recommended I try a gluten free diet to help with bloating. The more strict I am about the gluten free diet the smaller my waist regardless of actual weight and I feel better. Now I hope to also gain the less inflammation effect from the gluten free diet. I am down a pant size at the same weight.

Before my daughter, who is now 23, was born I was quite nervous as large babies run in my family. My Grandmother weighed 14 lbs at birth and I was 10lbs 6 oz. I was pleased when my daughter weighed 7.5. She was small and delicate, so unlike me. She was not diagnosed until she was 11 yrs old. They gave her enzymes and told us not to be alarmed, but that she was going to put weight on rather quickly. She did. Now, though, she could stand to lose a few pounds. She is always asked if she is pregnant. People have been asking her that since she was 14 or 15. It gets old! She really needs a diet - but Drs. are a bit hesitant to put her on one and quite frankly so am I. I sure would like an answer about this! When they diagnosed her they told me to feed her as much bacon, as much "grease" as she would eat. They also told me to have her drink half & half. Sorry, I know that I am absolutely no help at all. Does anyone else out there have any experience with this type of problem?

 

[Melissa75]

There is something called the BODE index in measuring severity of COPD. In that scale, if your BMI is under 21, you get a point against you, an indication of the severity of the lung disease.
So, while 18.6 - 25 are considered "normal," aiming for over 21 is a probably a good idea.

On the other end of things, which is what this thread is about, I would make it a priority to get low enough to qualify for a transplant. While frame and weight distribution need to be accounted for, over 30 BMI still likely puts a lot of pressure on your chest when you sleep and strain on your joints and tendons when you move around, and this all influences your ability to recover from major surgery.

 

[AH11201]

Before my daughter, who is now 23, was born I was quite nervous as large babies run in my family. My Grandmother weighed 14 lbs at birth and I was 10lbs 6 oz. I was pleased when my daughter weighed 7.5. She was small and delicate, so unlike me. She was not diagnosed until she was 11 yrs old. They gave her enzymes and told us not to be alarmed, but that she was going to put weight on rather quickly. She did. Now, though, she could stand to lose a few pounds. She is always asked if she is pregnant. People have been asking her that since she was 14 or 15. It gets old! She really needs a diet - but Drs. are a bit hesitant to put her on one and quite frankly so am I. I sure would like an answer about this! When they diagnosed her they told me to feed her as much bacon, as much "grease" as she would eat. They also told me to have her drink half & half. Sorry, I know that I am absolutely no help at all. Does anyone else out there have any experience with this type of problem?

I'm pancreatic insufficient, and my mother was also told to feed me as many calories and as much fat--of any kind--as possible. I was a HUGE meat eater and, while I also enjoyed vegetables, I ate tons of crap. For instance, I was addicted to Nutrament and would drink one (sometimes 2!) with meals. Now I look at that stuff and am disgusted—I think canola oil is one of the first ingredients. Gross. So yeah, I was probably eating more calories in middle school than I am now, at age 20. This ended up with my being overweight and my doctor one day telling me I should lose weight and cut out the supplements (i.e. Nutrament, and sometimes ScandiShake) cold turkey. I cried. My dad still makes fun of me for that, but I am still genuinely angry about the whole situation. I've found you really have to take responsibility for your own health in terms of what you eat, because CF doctors really aren't taught to be concerned about this--until you weigh too much. I really like and respect my CF doctor now, but I get so frustrated by the narrow-minded nutritional view that even she expresses. When I started eating healthier and cut out junk, the bad stomach aches I had experienced forever were basically gone. This spoke volumes to me, way more than my weight dropping. If you want somewhere to start for reworking your daughter’s diet, I would say look at the website Mark’s Daily Apple. I’m currently a big fan and think it makes a lot of sense for CF’ers. Good luck!

 

[tarheel]

My BMI is 21.7 and I got told by my transplant center to loose weight. Yeah. I was really hunched over and working to breathe that day, and they happened to notice that prednisone gives you some lovely stomach handles. Not a muffin top, mind you.

I was teased and bullied as a kid for being fat- I was always on absurdly (toxic) high levels of prednisone. We're talking 60-80mg for a 6 year old. I wanted to do something about it, even as a 6 year old (kids are cruel to each other) but the docs said absolutely not.

I guess what I'm saying is you know you. You know if you need to loose weight. Listen to yourself. I know I would have saved myself a lot of pain if I had earlier, and now I'm standing up to my transplant team on the grounds their request is unreasonable. (Updates on that later im sure) Do what's best for you.

 

[sugarcookie]

Before my daughter, who is now 23, was born I was quite nervous as large babies run in my family. My Grandmother weighed 14 lbs at birth and I was 10lbs 6 oz. I was pleased when my daughter weighed 7.5. She was small and delicate, so unlike me. She was not diagnosed until she was 11 yrs old. They gave her enzymes and told us not to be alarmed, but that she was going to put weight on rather quickly. She did. Now, though, she could stand to lose a few pounds. She is always asked if she is pregnant. People have been asking her that since she was 14 or 15. It gets old! She really needs a diet - but Drs. are a bit hesitant to put her on one and quite frankly so am I. I sure would like an answer about this! When they diagnosed her they told me to feed her as much bacon, as much "grease" as she would eat. They also told me to have her drink half & half. Sorry, I know that I am absolutely no help at all. Does anyone else out there have any experience with this type of problem?

I can't believe that people are so cruel and rude to ask your 14 yr. old if she is pregnant. That is horrible. My personal relationship with weight is that I didn't start dropping huge amounts of weight until my PFT's have consistently been 30%, and in the 20's when I am sick. It takes a lot of energy to breathe, which burns calories.

 

[sugarcookie]

I am not obese but I am at a overly healthy weight. I am 5'7 and 150lbs. Anything more then 150lbs makes it harder for me to get around. I am a huge eater which is why I think I have always been so healthy. All I think about is food, and I eat large portions. I eat very healthy though, and am on an all natural health food diet. If you want to loose weight in a healthy way, get a Nutribullet. The nutribullet blends up whole fruits and veggies into juice. I do a mix of fruits and veggies, flaxseed, and turmeric spice. I do not get why doctors would say to eat bacon and half and half. There are healthy fats that someone could consume to gain weight instead of trans fat. Trans fat is so bad for our bodies, it clogs arteries and basically sticks to the body. Your sure to get fat consuming large amounts of trans fat.

Right on! Good for you for being on an all natural health food diet. There are healthy fats, which are really crucial for people with CF. Peanut butter, trail mix, cheese, granola, avocado, etc.

 

[rubyroselee]

Hi,

My highest BMI was 31, which was about 1-2 years post-pregnancy. So at my highest I was 5' 7.5" 198 lbs. I was extremely lazy at that point in my regarding my own health because I had two small boys and was working full-time, so I didn't have time to eat right or exercise much. I have managed to get down to 185 lbs for a BMI of 29, so I went from obese to overweight over the last couple years. I can definitely stand to lose some weight, so now that my life is less hectic, I am eating better and exercising more. However, that wasn't always the case for me - I was very thin and underweight as a child and teen. For some reason I started gaining weight in my 20's and I'm really not sure why, other than just that I became less active and metabolism slowed with age.