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CowTown
05-25-2006, 06:43 PM
Okay, I have to say that this topic came up at my doctors appointment this past week and it frankly p!ssed me off that the nutritionist even mentioned it to me. It felt like she must have been high or something to have given me the G-Tube booklet to read and said it is an option if I'm interested. I'm sure she felt my piercing eyes after her bringing that up, and I couldn't even help the irritation in my expression.

I know many of you have discussed this topic before but I wanted to ask it again based on my experience this week.

She said the national weight to height ratio has recently increased, so what I'm "suppose" to weigh is 124 lbs now up from 120 lbs. Both those numbers are completely out of the question for me, but my appetite is lovely. When there's good wholesome food in front of me.....I eat and enjoy! When I really focus and put efforts toward weight gaining I usually gain around 4 lbs. Typically I'm 101-103lbs (and 5-3"), which isn't much and I know I need to gain and would love to be 110. I was 108lbs once in my life but it only last 1 month at most.

Anyways, I really thought the G-Tube was for people who first and foremost weren't eating much on their own, low appetite and possible very sick lung-wise. Is this not the case? Has anyone used one while they didn't feel it was neccessary? I have basically shrugged this whole thought off, and my husband agreed and said the nutritionist was probably just thinking of me as a number, a statistic and not to worry about it. He knows how much I LOVE food! Poor thing, he always is trying to lose weight while I bring home all the super goodies to eat.

Any thoughts?

I don't even want to entertain the idea of getting one. What are your experiences when/if you were really sick or not at the time of getting one?

CowTown
05-25-2006, 06:44 PM
And, is it realistic for people to get a gtube placed for a temporary time, gain the weight and then have it taken out? I know it is a surgery, but that's all I know.

LisaV
05-25-2006, 07:26 PM
my thoughts?
I was 5'2" and weighed 99 lbs when I was married. (We won't discuss my weight now.) My 34-year old daughter is 5'3" and weighs (at most) 105 lbs when she isn't pregnant. Neither of us have CF. Both of us have always been incredibly healthy. My daughter is all muscle and senew.
The charts are just charts.
I say eat hearty. Exercise and build up your muscles. Enjoy strawberry shortcake with whipped cream for desert.
Make your husband suffer. (Goodness knows I did ....)

NoExcuses
05-25-2006, 07:38 PM
Hey Kel,

I don't know much about g-tubes, but I do know a bit about nutrition and CF.

If your weight is low, it usually means your body isn't getting as much nutrients as it should have to be strong enough to fight off viruses and infections.

Just having an apetite is great, but if you're burning off a ton of calories just breathing/coughing/existing, then you may need more nutrition that your good apetite is giving you.

Rao used to always tell me he believes that high weight = high lung function. And I would always argue NO! it's the other way around. high lung function = high weight because high lung function = not burning as many calories coughing or breathing. But he explained that keeping weight & nutrition up can give the body fuel it needs to fight infection and ward off viruses. And that will keep lung function high.

I'll be honest - I was about 110 in college and I was pretty happy with it (I'm 5'2). I'm 120 now... not cuz anyone told me to gain weight. I just get too many free meals at work so I've gained a good 10lbs. I wouldnt' mind being 110 again (probably cuz I live in LA and you can never be too skinny), but my strongest feeling is that if I exercise and eat well, then I'm at the weight I should be.

So I'm cool with my buck twenty. <img src="i/expressions/face-icon-small-smile.gif" border="0"> <img src="i/expressions/face-icon-small-smile.gif" border="0"> <img src="i/expressions/face-icon-small-smile.gif" border="0"> Sounds like you should be cool with your weight too. But then again, I'm not that informed with regards to G-tubes.

RoyalPrince
05-25-2006, 07:38 PM
what exactly is the benefit of a g-tube anyway..? i mean i know you pour super high calorie nutrient enriched stuff into your stomach for the purpose of gaining weight but why not just pour it into your mouth and swallow it's not like it gets lost along the way and doesn't make it to your stomach if poured into the mouth right..??... i guess what i'm asking is where is the benefit if your stomach can only hold so much stuff... is it that different if you pour it into a g-tube rather than your mouth...

CowTown
05-25-2006, 07:56 PM
Lisa, that sounds about right to me too. I've always heard of people (non-CF) that can easily be 102 range, 5-2 or 5-3, wear a size 0 or 2 pants or dress and feel/look just fine. I do know that in pictures I think I can look too thin at times but I seriously don't believe I need a GTube!

Amy, I've always heard from Shapiro that the studies have shown that lung function and weight go hand in hand. If there's a decrease in weight, then your lung function goes down at the same rate and vise versa. I'm not sure about the other way around, but maybe. I've always been at this weight range for ages even while my lung function was in the 80s-90s. I do want to gain weight in order to help my lung get better and I know the more nutrition I have will help me overall.

Donovan, the nutritionist said that the benefit of having it is that at night when I'm sleeping I can hook up a can of food, be fed and get extra calories while I'm sleeping. Those were her words. I'm thinking.....I'd really rather just pig out at dinner and have a yummy desert before bed than do that. If of course I wasn't able to eat and didn't have an apetite, then that's a different story. But that is not where I am right now, luckily enough.

littledebbie
05-25-2006, 08:05 PM
All I have ever been able to figure out is it's easier and one less thing to worry about, so unless it's a little kid who just has way better things to do than eat <img src="i/expressions/face-icon-small-wink.gif" border="0"> and Mom is pulling out hair or you are so sick you don't want to put in the energy to eat....what's the point? i am not interestded in one I am 5'1 and 96lbs, i eat like a healthy teenage boy. It's been mentioned to me before and I said i wasn't interested, i think it was offered because: A) I am small and B) they thought it might be more convenient for me. No thanks. Now if I were to ever get so sick i was literally to tired to eat, I would reconsider.

anonymous
05-25-2006, 08:13 PM
My husband loved bedtime snacks.

Biscuits with butter and honey. Homemade hot chocolate with whole milk, a little heavy cream, cocoa, and lots of sugar. Gooey smelly cheese and crackers. Marshmallow fluff and peanut butter sandwiches (yuck). strawberry milkshake made with Ensure (he liked it),heavy cream, strawberry syrup, and strawberry ice cream. Everything came with gravy, extra butter , sugar, something.

....that's why we won't talk about my weight now.
but truthfully even if when I'm down to 125 lbs, 10 lbs of that would be on my stomach and I would look pregnant. And there's nothing as silly looking as a pregnant 61-year old.

which is why I'm swimming laps at the Y now every day.
-LisaV
of course if you have GERD then real true bedtime snacks are a no no, you have to at least give the food time to get "on its way"....

Cariann2005Rob
05-25-2006, 08:17 PM
Ok so here is my story... When i first got to hawaii after getting married I had only weighed 80 lbs at 5'3". and my body was in shut down mode so they told me i needed a g-tube. so i got one! I now weigh 107lbs.... I feel sooooo fat!! lol! but they say i am a healthy weight now! so i asked them if i could get it out but they said no since its a surgery and i have yet to get a lung transplant which may be in a few years but they dont think i should get it out until after i have had one! so i am stuck with it!! I hate it! it leaks on all my shirts and the only time i use it now is when i go into the hospital and/or lloose weight! so From my point i would say that i wouldnt get one! your weight looks good to me! but from a docs point of view it maybe different! as long as you are eating and all your levels are good there should be no reason why you would need to get one yet!! alright well i wiil talk to you later...
Cariann 21 w/cf cfrd mrsa

catboogie
05-25-2006, 09:31 PM
kelly,

if i were like you and very opposed to getting the g tube (and i don't blame you) but you can also see that the docs/nutritionist have reason to want you to gain weight, then i would set a goal for myself. make an effort to gain a certain number of pounds, and keep them on, before your next doctor's appointment. why i say this is because i suspect you have a little voice in the back of your head saying <i>i could do this if i had to...but i haven't really had to yet. </i> you may be right. i hope so! but now is the time to find out. i agree with amy that nutrition is SO important to staying healthy. i don't think appetite really matters besides making eating easier. i know for myself, even with exercising 4-5 days a week, i am as healthy as i've ever been and i also weigh as much as i ever have. i don't think this is a coincidence.

good luck!

laura

anonymous
05-25-2006, 10:17 PM
Sounds like everyone is giving good advice. I agree with catboogie...set a goal to add a few pounds to see if you can reach it. Even if it means setting a timer to wake up in the middle of the night, down a high calorie drink and go back to sleep. (My ds has never tried this, but at the moment is not needing to gain weight, it just would be an option I would try first). Sounds like a hassle, but I think getting the g-tube would be even more of a hassle.

On a side note. Why did they increase the weight charts? Is it because America is getting obese, and they fixed the charts so more people would be considered a healthy weight, instead of overweight? If that's the case then I wouldn't worry too much about being on the chart.

perl
05-25-2006, 10:39 PM
1. a weight chart is just a tool to use, not gospel
2. docs & nutritionists -- it's their job to present every option to you
3. you know your body better than anybody else.
4. the consideration of a g-tube (meaning the avoidance of getting one) may be a good motivator for your own weight-gaining goals.

i know when my doc started talking about a port, it scared me enough to bump up my efforts of maintenance.

i'm 5'5" & usually around 112 (yes, 115-120 would be better!). according to the chart at my last clinic visit, i'm supposed to be 130. the heaviest i've been is 120 about 12 years ago & i certainly don't need to be heavier than that to be healthy.

CowTown
05-25-2006, 11:16 PM
Thanks for everyone's feedback! Yes, it is a bit of a motivator having heard the word. I had set a goal for myself 1 month ago to get up to 105, and did it. Deserts after dinner is the trick for me. If I have them regularly, I usually always gain. I was also jogging and trying to gain muscle mass too, so I will get back to all that now. I do know I can do it, but actually keeping it on for a long time is the hard part.

LouLou
05-26-2006, 01:51 PM
There's a great article in the CF Roundtable about this exact topic by Kathryn Martinet who 'gave in' and got a g-tube. I highly suggest you read it. Also, there's a article in the same magazine by the doctor that has CF who finally decided it wasn't in her best interest to be as skinny as she was.

I just got it yesterday in the mail. If you pm me with your mailing address I'll copy it and mail it to you or you can order from their site. It's a good read. Maybe you'll want to subscribe.

ewhsdavism
05-26-2006, 02:02 PM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>MyNewfy</b></i>

And, is it realistic for people to get a gtube placed for a temporary time, gain the weight and then have it taken out? I know it is a surgery, but that's all I know.</end quote></div>

Actually yes. I've had 3 g tubes placed for that matter. It was really nice bringing my weight up...then them taking it out. But then I lost weight, and I had to get another one <img src="i/expressions/face-icon-small-sad.gif" border="0">

all in all...if your having problems with your weight, I would suggest getting a G'tube. Like I said, I've had 3. If your religious about getting your feeds in...it will work wonders on you....

Mike approves YES on G tube!

thelizardqueen
05-26-2006, 02:09 PM
I have problems with my weight. I'm 5'6 and weight about 115-120 right now. I know that if I buckle down real hard and try my best, I can get my weight up to about 130-132. I'm completly against g-tubes, as is my doctor unless absolutly necessary. He's seen me put on weight when I really try so he knows I can do it fine without a tube. I say that if putting weight on is so VERY hard for you, and it can't be done, then go for it, or at least consider it. But if you know that with a lot of high cal foods and a heavy diet you can do without, don't bother getting one. I've fought g-tubes twice, and I'm doing fine.

LouLou
05-26-2006, 02:19 PM
Google BMI

Mine is 22.5
CFF suggests 23-24+ for women, 25-26+ for men

If you are below a 20 you are malnourished.

I am 5'3" and 127 lbs. Your lungs will be much healthier if you a good weight. Honestly I can't imagine being more than a 22.5 but I guess I should be striving to weigh more too.

In college I tried to stay at 116 because I liked the way I looked better at this weight. I was very susceptible to illness at this weight and caught twice as many colds...one of which led to pneumonia that caused me to loose 10% lung function that in 7 years I have been unable to recoup.

LouLou
05-26-2006, 02:25 PM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>LouLou</b></i>

If you are below a 20 you are malnourished.
</end quote></div>

Before someone attacks me about this statement.
Here's where I got it
<a target=_blank class=ftalternatingbarlinklarge href="http://www.med.umn.edu/peds/cfcenter/cfoutcomes/bmi/home.html
">http://www.med.umn.edu/peds/cf...utcomes/bmi/home.html
</a>
The Body Mass Index (BMI, a ratio of body weight to stature) is considered as a good indicator of nutritional status. Nutritional status is tightly associated with preservation of lung health and ultimately with life expectancy in CF. Thus it is extremely important to keep the patient's nutritional status at the best level possible.

In adults the BMI is represented as the ratio of weight to the square of height. A value below 20 represents the presence of malnutrition. The higher the BMI value the more optimal the nutritional status is.

CFHockeyMom
05-26-2006, 02:26 PM
Like lots have said, a chart is just a chart. It's my understanding, however, that Cfers are supposed to carry a little extra weight (reserves) for when they are battling infections.

Does that necessarily mean you need a G-tube? I don't think so. If the Dr. thinks you need a few extra pound (regardless of the frigging chart) then try and cram in a few more calories. If you were trying and trying to gain weight and were wasting away in spite of all the extra calories then I'd say go for it.

CFHockeyMom
05-26-2006, 02:31 PM
Here's a good place to get BMI info...

<a target=_blank class=ftalternatingbarlinklarge href="http://www.cdc.gov/nccdphp/dnpa/bmi/">BMI calculator</a>

CowTown
05-30-2006, 11:36 PM
I know Mike Davis (ewhsdavism) has had 3, but I'd like to ask you and others who have had one what was the final determining factor for you to agree?

I'm starting to reconsider b/c I think my health is just taking a nose dive overall and I wonder if others felt like they needed one ONCE their health got to a certain point. Was saying yes a combination of lowered lung function, coupled with other things, or did anyone get a GTube with a goal to ONLY gain weight and health maintenance? I don't know if this makes sense.

I don't want to deny myself of getting better, and am really uncomfortable with my health lately. Maybe all the elements involved for me would be a reason in itself to get one. My fev1 since April of last year has gone from 57% to 36% today. Granted I have an infection right now, but I've never ever been close to these numbers before now. 57% was very low for me last year, and now I keep going down. I can't seem to maintain my fev1. And now I need to start oxygen while I exercise because I live at high elevation. And I have a mean bug that is terrribly hard to kill and probably the reason for my pft dropping. And...I should really weight more. Do you all think I should get a gtube and try to help myself out that way? I feel like so many different things are going on with my body, I'm loosing perspective. Maybe I just need a 2 week tune up in lock-down?

I am open to the mean, bad and the ugly as far as responses go. I'm getting worried, so I want to hear other's opinions.
Thanks.

thelizardqueen
05-31-2006, 12:06 AM
If you feel you need a g-tube, then get one. Don't let us tell you either way, because you know that deep down if you want it, and it'll make you healthier, you'll get it. I would only get one if I knew that it would help me, and I've exhausted all other options.