cysticboy1026
New member
i need advice about taking my pills
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any mothers able to talk to me about cf
- Thread starter cysticboy1026
- Start date
cysticboy1026
New member
thx i will talk to you under the chat server if u would like to i
can swallow its just sometimes i wish i never had these pills and
there is more but its i cant get a transplant i also have scoliosis
and i cant get a brace cause it will restrict my
breathing and i dont weigh enough for transplant its sad
can swallow its just sometimes i wish i never had these pills and
there is more but its i cant get a transplant i also have scoliosis
and i cant get a brace cause it will restrict my
breathing and i dont weigh enough for transplant its sad
I can't do the chat right now because I am at work, but I can write something quick.
You aren't the only one who really wishes that you didn't have to take any medications. There are many other teens and adults with CF that feel the same way. I know some of them can come on and talk to you if you want them to. I can't say anything to make it go away or to make it better, but sometimes life is just really tough and you have to just keep pushing and trying.
You can't get a transplant because you have scoliosis? Is that what the doctors say? Are you needing a transplant right now?
Have you ever tried out a brace for the scoliosis? There are some "more comfortable" ones (although none of them are ever comfortable) and you might give them a try and see if you have any problems breathing. My husbands mom has scoliosis so I've seen some of the braces that she has. Maybe you can ask to try one out.
Do you eat a lot and just don't gain weight. Do you need ideas of really good foods to eat that might help you gain some weight? We can help out with that and give you some ideas if you want. Weight gaining doesn't happen right away, it can take a while but I can give you some ideas to gain weight if you want, and I'm sure others can too.
You aren't the only one who really wishes that you didn't have to take any medications. There are many other teens and adults with CF that feel the same way. I know some of them can come on and talk to you if you want them to. I can't say anything to make it go away or to make it better, but sometimes life is just really tough and you have to just keep pushing and trying.
You can't get a transplant because you have scoliosis? Is that what the doctors say? Are you needing a transplant right now?
Have you ever tried out a brace for the scoliosis? There are some "more comfortable" ones (although none of them are ever comfortable) and you might give them a try and see if you have any problems breathing. My husbands mom has scoliosis so I've seen some of the braces that she has. Maybe you can ask to try one out.
Do you eat a lot and just don't gain weight. Do you need ideas of really good foods to eat that might help you gain some weight? We can help out with that and give you some ideas if you want. Weight gaining doesn't happen right away, it can take a while but I can give you some ideas to gain weight if you want, and I'm sure others can too.
Dustin,
All that stuff you said IS sad. I really wish you could talk to my son. He's pretty shy (especially talking about cf) but I think it would help you both. He doesn't know any other kid with cf except his brother. He hates to do his meds too. He has to get up at 5:45 to do nebs. But he usually goes back to sleep because he's tired, then he's late for school. He has chest PT and more nebs at night. Then he has to hook up his g-tube because he also has trouble gaining weight. (he's 75 pounds) He doesn't like to eat most of the time. He mostly justs wants to be normal and play video games and hang out with his friends. It must stink for you guys. Taking care of your cf is a lot of work.
When did the doctors talk to you about a transplant? Do your parents help you? What do they think about all of this stuff? Sometimes its hard for parents too and it helps for you to talk to them, but it would be cool for you to talk to some other cf kids.
We'll try the chat again, maybe you guys can talk.
Jane
All that stuff you said IS sad. I really wish you could talk to my son. He's pretty shy (especially talking about cf) but I think it would help you both. He doesn't know any other kid with cf except his brother. He hates to do his meds too. He has to get up at 5:45 to do nebs. But he usually goes back to sleep because he's tired, then he's late for school. He has chest PT and more nebs at night. Then he has to hook up his g-tube because he also has trouble gaining weight. (he's 75 pounds) He doesn't like to eat most of the time. He mostly justs wants to be normal and play video games and hang out with his friends. It must stink for you guys. Taking care of your cf is a lot of work.
When did the doctors talk to you about a transplant? Do your parents help you? What do they think about all of this stuff? Sometimes its hard for parents too and it helps for you to talk to them, but it would be cool for you to talk to some other cf kids.
We'll try the chat again, maybe you guys can talk.
Jane
S
skh
Guest
Hi, my daughter is 15 and she has cf. She doesn't like taking her enzymes or doing her treatments either. But she does them faithfully because she knows they help her. Take your enzymes with your meals this will help you gain weight.
It's not fun getting up early to take your treatments or giving up part of your evening to do them. This what my daughter's doc told her about doing her vest treatments. He said think of it as doing a work out. Some kids get up a lot earlier than you to go to swim practice or hockey practice etc. Think of your treatments as your exercise. You are exercising your lungs. When you think of it that way you really aren't too different from the rest of the kids. Everyone makes commitments - just to do different things.
So, please continue to do your treatments - they are so very important to your health. And continue to take your enzymes as this will help you gain weight in order to have that transplant!
Are there any special foods that you like? My daughter likes icecream. She has a malt/shake just about every night. She doesn't like the scandi shakes just regular icecream. She also love pretzels and cheese. We never limit the amount of food that she has. Sometimes she will eat a whole box of mac and cheese as a after school snack! Are there any foods that you just love...if so eat them!
Please keep us posted - we care.
Sue
It's not fun getting up early to take your treatments or giving up part of your evening to do them. This what my daughter's doc told her about doing her vest treatments. He said think of it as doing a work out. Some kids get up a lot earlier than you to go to swim practice or hockey practice etc. Think of your treatments as your exercise. You are exercising your lungs. When you think of it that way you really aren't too different from the rest of the kids. Everyone makes commitments - just to do different things.
So, please continue to do your treatments - they are so very important to your health. And continue to take your enzymes as this will help you gain weight in order to have that transplant!
Are there any special foods that you like? My daughter likes icecream. She has a malt/shake just about every night. She doesn't like the scandi shakes just regular icecream. She also love pretzels and cheese. We never limit the amount of food that she has. Sometimes she will eat a whole box of mac and cheese as a after school snack! Are there any foods that you just love...if so eat them!
Please keep us posted - we care.
Sue