oh i forgot another one. no picc lines. well, no one would probably be able to get one in anyway but if they could id flat out refuse. i dont want another repeat of what happened last time i had one. [snapped off on removal. bad bad bad.] apart from the steroids and that, i dont care what is done to me.
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cf deal breakers
- Thread starter wallflower
- Start date
Kybert, I don't have CF but I do have Crohn's and Prednisone is my number one deal breaker. I've had numerous central lines, surgeries, colonoscopies, tube feeding, etc... but I will never go on steroids again!!! It was so much worse than just the outwardly side effects like chubby cheeks. It caused glaucoma, kidney disease, osteoporosis, rapid weight gain (resulting in stretch marks), pancreatitis, gallstones, suicidal thoughts, insomnia etc... It did help my Crohn's tremendously but screwed the rest of my body up. My views have changed a little bit since having a son. I would take steroids again if it was the only thing out there to keep me alive---he's more important than any side effect!
As many others here I've been faced with several of my "dealbreakers". The first one was a port. I fought that, said I'd never get one. Now I've had two, and I don't know why I fought them so much! They make life so much easier.
Second one was O2. I was convinced that once I went on O2 my life was over, I was past the point of no return. So when I did go on O2, it was very hard for me to accept. I fought the doctors, was very depressed, never wore it - until it was really starting to become apparent that I needed it. It was really hard for me to wear it in public, now I don't even care! It's amazing what you get used to, that seemed so insurmountable before.
Next is transplant - i always knew I would get one - but it would be way, way in the future. So it was never very real to me. Now I'm very close and can't wait. I am also very scared! I dread the vent - I know you are on it after surgery - and the numerous bronchs - I've never had one before.
So I think that lots of cfers have dealbreakers, but as we get sicker, we are eventually faced with them all - and you find yourself making decisions that you never thought you'd make, just to live a little longer.....
Sorry if this is depressing!!<img src="i/expressions/face-icon-small-smile.gif" border="0">
I did once refuse to let them draw my blood in the hospital - they had just drawn it that morning and came back for more - because they screwed up and didn't get enough the first time. I told them tooooo bad - I was sick of being poked! Also refused to take stool softener at the hospital too - I didn't ever take it so why should I now?? Also refused to let students do IV's on me, especially after being poked for like 30 min. one time! Sometimes you just gotta stick up for yourself!!!
Martha CF, 30
Second one was O2. I was convinced that once I went on O2 my life was over, I was past the point of no return. So when I did go on O2, it was very hard for me to accept. I fought the doctors, was very depressed, never wore it - until it was really starting to become apparent that I needed it. It was really hard for me to wear it in public, now I don't even care! It's amazing what you get used to, that seemed so insurmountable before.
Next is transplant - i always knew I would get one - but it would be way, way in the future. So it was never very real to me. Now I'm very close and can't wait. I am also very scared! I dread the vent - I know you are on it after surgery - and the numerous bronchs - I've never had one before.
So I think that lots of cfers have dealbreakers, but as we get sicker, we are eventually faced with them all - and you find yourself making decisions that you never thought you'd make, just to live a little longer.....
Sorry if this is depressing!!<img src="i/expressions/face-icon-small-smile.gif" border="0">
I did once refuse to let them draw my blood in the hospital - they had just drawn it that morning and came back for more - because they screwed up and didn't get enough the first time. I told them tooooo bad - I was sick of being poked! Also refused to take stool softener at the hospital too - I didn't ever take it so why should I now?? Also refused to let students do IV's on me, especially after being poked for like 30 min. one time! Sometimes you just gotta stick up for yourself!!!
Martha CF, 30
<blockquote>Quote<br><hr><i>Originally posted by: <b>Anonymous</b></i><br>Diane,
It sure was! How did you know?!?!<hr></blockquote>
The reason i knew it was Chloramphenicol, is because i used to take it years ago and then it became unavailable because of some serious side effects some people were having. My doctor has recently mentioned putting me back on it, when we couldnt seem to find anything else i havent been on for a long time. Only problem is they dont supply it here in the us anymore except in iv form . Although they have it orally for veterinary use. I told my doctor if i ever NEED to go on it i would definitely have a talk with my iguanas vet and see if he can get it for me.
I hate the idea of getting it in the form of iv. From what i hear Chloramphenicol is supposed to be pretty effective for b.cepacia so i guess thats why my doctor wants to get me on it at some point.
It sure was! How did you know?!?!<hr></blockquote>
The reason i knew it was Chloramphenicol, is because i used to take it years ago and then it became unavailable because of some serious side effects some people were having. My doctor has recently mentioned putting me back on it, when we couldnt seem to find anything else i havent been on for a long time. Only problem is they dont supply it here in the us anymore except in iv form . Although they have it orally for veterinary use. I told my doctor if i ever NEED to go on it i would definitely have a talk with my iguanas vet and see if he can get it for me.
I hate the idea of getting it in the form of iv. From what i hear Chloramphenicol is supposed to be pretty effective for b.cepacia so i guess thats why my doctor wants to get me on it at some point.
<blockquote>Quote<br><hr><i>Originally posted by: <b>Anonymous</b></i><br>Diane,
It sure was! How did you know?!?!<hr></blockquote>
The reason i knew it was Chloramphenicol, is because i used to take it years ago and then it became unavailable because of some serious side effects some people were having. My doctor has recently mentioned putting me back on it, when we couldnt seem to find anything else i havent been on for a long time. Only problem is they dont supply it here in the us anymore except in iv form . Although they have it orally for veterinary use. I told my doctor if i ever NEED to go on it i would definitely have a talk with my iguanas vet and see if he can get it for me.
I hate the idea of getting it in the form of iv. From what i hear Chloramphenicol is supposed to be pretty effective for b.cepacia so i guess thats why my doctor wants to get me on it at some point.
It sure was! How did you know?!?!<hr></blockquote>
The reason i knew it was Chloramphenicol, is because i used to take it years ago and then it became unavailable because of some serious side effects some people were having. My doctor has recently mentioned putting me back on it, when we couldnt seem to find anything else i havent been on for a long time. Only problem is they dont supply it here in the us anymore except in iv form . Although they have it orally for veterinary use. I told my doctor if i ever NEED to go on it i would definitely have a talk with my iguanas vet and see if he can get it for me.
I hate the idea of getting it in the form of iv. From what i hear Chloramphenicol is supposed to be pretty effective for b.cepacia so i guess thats why my doctor wants to get me on it at some point.