hey so my husband has CF and he was diagnosed at 3 months old, and they told him that he wasnt supposed to live past 13, then when he made it to 13, he was told 18, so he went out and smoked 2 packs of cigarettes a day and did drugs, he is 30 now and he is definetly paying for it... his biggest fear is that he is going to die very soon, and its scarey to know that its a possibility. im not too sure what to say to him to make him know that things will be okay..he cant breathe, he fears that he will not wake up if he does go to sleep, but im seeing on this site that there are a lot of older CF people, i guess what im trying to ask is does anyone know the average age for a CF person with no lung transplant? My husband no longer smokes, he drinks, but that is it...no drugs no nothing.
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questions??
- Thread starter jchelle
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hey so my husband has CF and he was diagnosed at 3 months old, and they told him that he wasnt supposed to live past 13, then when he made it to 13, he was told 18, so he went out and smoked 2 packs of cigarettes a day and did drugs, he is 30 now and he is definetly paying for it... his biggest fear is that he is going to die very soon, and its scarey to know that its a possibility. im not too sure what to say to him to make him know that things will be okay..he cant breathe, he fears that he will not wake up if he does go to sleep, but im seeing on this site that there are a lot of older CF people, i guess what im trying to ask is does anyone know the average age for a CF person with no lung transplant? My husband no longer smokes, he drinks, but that is it...no drugs no nothing.
What are his pft's? Is he on anxiety meds?
stop drinking booze and start drinking a lot more water, I used to have like three beers when I played poker with friends and I found that just after three beers I started to feel ill so I quit and never touched a drop for over 4 years. Water will keep him hydrated and will actually loosen up mucus so it is easier to get out.
He also may need a tune up with some IV antibiotics, always worked for me.
Dave,
He also may need a tune up with some IV antibiotics, always worked for me.
Dave,
To me, it sounds like he needs a good clean out and to change his lifestyle...no excessive booze, exercise more etc.... Also, doing treatments is very important to maintaining lung health...chest physio, inhaled antibiotics if he is growing pseudomonas, pulmozyme and or hypertonic saline etc.... If he takes care of himself, his life will only improve. I was a late diagnosis in my 30's, I am now 41. My lung functions are about 30 but I also have other issues that would affect those numbers...it's a long story. I regularly do IV antibiotics, about 4 times a year and am O2. There are other people on this board who are older than I am and have classic CF. Doctors should not say a person is going to die at X years, it really is damaging. They don't have a crystal ball, they should know that CF does not fit into a single mold...people present differently even if they have identical mutations. There are many factors in play with CF, there is much doctors need to learn.
If your husband is having as much difficulty as I think he is, he really needs to sit down with his doc (hopefully he is seeing a doc who is knowledgeable about CF at an accredited center) and discuss his issues and come up with a different treatment plan that will help him have a better quality of life.
I hope this has helped...I will be thinking of you guys
Jenn 41 wCF
If your husband is having as much difficulty as I think he is, he really needs to sit down with his doc (hopefully he is seeing a doc who is knowledgeable about CF at an accredited center) and discuss his issues and come up with a different treatment plan that will help him have a better quality of life.
I hope this has helped...I will be thinking of you guys
Jenn 41 wCF
It sounds like your husband isn't getting the quality of treatment and care that he should be getting. I second what people have said here and suggest that he seeks a CF team in the area (if this isn't already happening). But it sounds like there's some things that you could be missing. Each case in unique, that we know for sure, and being stuck on life expectancy numbers isn't helpful because every person is in a different situation.
D
DmT145
Guest
It sounds like both you and your husband need to educate yourselves on CF. Mis-education or undereducation got him in this mess in the first place and remaining ignorant of CF and how to treat it will not change anything. You cannot assume that doctors are going to take care of everything and he (along with you) must be an active partner in his health management.
I was in the same position as your husband. Until I was about 30 I was determined that I wasn't going to die from CF (my motto was live fast and die young). I didn't die but I didn't do myself any good either.
He is going to have to decide whether he wants to stay alive or not. If he really does then he's going to have to start doing the things that he needs to do to get healthy.
I'm not on here a lot but if he wants to get hold of me privately feel free to do so. I'll try to give him the best advice that I can. It's not going to be easy but if he is willing to make changes he can stay around to see what the world has in store for us.
He is going to have to decide whether he wants to stay alive or not. If he really does then he's going to have to start doing the things that he needs to do to get healthy.
I'm not on here a lot but if he wants to get hold of me privately feel free to do so. I'll try to give him the best advice that I can. It's not going to be easy but if he is willing to make changes he can stay around to see what the world has in store for us.