I have read through a bunch of feeding tube threads already but have some more questions.
I don't think I'm in desperate need of this, but my doctor, nurses and nutritionist keep bringing it up and want me to think more about it. I kind of want some of your advice on whether to do it or not. What do you think?
<b>Here are my stats:</b>
I believe my BMI is about 18 and should be around 21 or 22 (not a huge difference). I'm 5'3" and weigh between 105-108lbs. My goal for a long time has been 110, but haven't quite hit it yet. Almost. They want me to weight 112-115lbs. I don't think I look stickly, but I'm sure some people probably would think so. FEV1 is between 38-42%
Today my nurse said that the CFF told her to start encouraging CFers to use feeding tubes earlier then later. They apparently said that people might have more benefit from them if they were to use them with higher fev1s and before it's considered a 'last resort'. Right now a gtube would not be a last resort for me, but a way to pick up my BMI since that's the only thing missing from my schedule of treatment. I'm doing everything I can with medications/treatments, etc and she said my nutrition is the only major thing lacking out them all.
Although they say they can't guarantee my lung function to improve b/c of the existing damage I have, they say if I were to gain more weight it could help maintain what I have that much longer, etc.
<b>My Questions:</b>
1. Why would someone opt to put that tubing down your nose for feedings instead of the gtube/mickey button? I know one is not a surgery, but the whole nose thing sounds awful!
2. Is the surgery for a gtube general anesthesia? Is it considered a major surgery or minor?
3. Once you gain the weight you want with the gtube and then you stop the feedings, how is it that you are able to maintain that weight if you're used to not eating that many calories? I'd like to think that I would stop the feedings after like 6 months or something, but I'm not sure I'll be able to eat the crazy amount of calories that the tube provided. Any thoughts?
4. If you stop the feedings and get it taken out, how many people have been able to keep it out versus having it put back in? What are those odds like?
5. Can you wear bikinis anymore, or do you switch to 1 pieces? Just curious. <img src="i/expressions/face-icon-small-smile.gif" border="0">
6. Based on my stats above, would you do it or would you feel like you don't need it for whatever the reasonings?
7. As an adult, any of you consider it more dangerous to get now versus as a kid?
That's it for now. Thanks for any input!!!
I don't think I'm in desperate need of this, but my doctor, nurses and nutritionist keep bringing it up and want me to think more about it. I kind of want some of your advice on whether to do it or not. What do you think?
<b>Here are my stats:</b>
I believe my BMI is about 18 and should be around 21 or 22 (not a huge difference). I'm 5'3" and weigh between 105-108lbs. My goal for a long time has been 110, but haven't quite hit it yet. Almost. They want me to weight 112-115lbs. I don't think I look stickly, but I'm sure some people probably would think so. FEV1 is between 38-42%
Today my nurse said that the CFF told her to start encouraging CFers to use feeding tubes earlier then later. They apparently said that people might have more benefit from them if they were to use them with higher fev1s and before it's considered a 'last resort'. Right now a gtube would not be a last resort for me, but a way to pick up my BMI since that's the only thing missing from my schedule of treatment. I'm doing everything I can with medications/treatments, etc and she said my nutrition is the only major thing lacking out them all.
Although they say they can't guarantee my lung function to improve b/c of the existing damage I have, they say if I were to gain more weight it could help maintain what I have that much longer, etc.
<b>My Questions:</b>
1. Why would someone opt to put that tubing down your nose for feedings instead of the gtube/mickey button? I know one is not a surgery, but the whole nose thing sounds awful!
2. Is the surgery for a gtube general anesthesia? Is it considered a major surgery or minor?
3. Once you gain the weight you want with the gtube and then you stop the feedings, how is it that you are able to maintain that weight if you're used to not eating that many calories? I'd like to think that I would stop the feedings after like 6 months or something, but I'm not sure I'll be able to eat the crazy amount of calories that the tube provided. Any thoughts?
4. If you stop the feedings and get it taken out, how many people have been able to keep it out versus having it put back in? What are those odds like?
5. Can you wear bikinis anymore, or do you switch to 1 pieces? Just curious. <img src="i/expressions/face-icon-small-smile.gif" border="0">
6. Based on my stats above, would you do it or would you feel like you don't need it for whatever the reasonings?
7. As an adult, any of you consider it more dangerous to get now versus as a kid?
That's it for now. Thanks for any input!!!