please, can anyone relate?

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anonymous

New member
Hi My name is Crystal im 18 and i do not have CF, but my Husband whos 22 does. I Love him more then anything. He told me the day we met he had it, and i really did think anything of it at the time. I didnt really know what it was. but as time flew. i feel so deeply in love with this man. I know one day im going to have to life with out him. the doctor told him his life expectency is 40. 40!! thats less 20 years. Hes everything to me, I cry myself to sleep on his shoulder alot. becuz i dont wanna lose him. I watch him sleep becuz i dont wanna miss anything. I know i still have alot of time with him, with its still not eenough.

Is anyone here going through the same thing?

Does anyone know the average Life expectancy for a Male with a Mild Case of CF?

He coughs alot. I always keep his inhaler next to my nightstand.
Im scared to lose him, cuz it could always be sooner. but at least i have the memories. but i dont know how i could go on without him. I already know we wont be able to have kids, so we plan to adopt. thats hard in itself, becuz i will never have a kid of his to be able to raise, to help me cope when hes gone, he wants me to move on and love again, but i dont think that will be possible.
 
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Purplelungs

New member
Dont listen to the life expectancies. They figure everyone who is older than that number and all those who die before it. Websites say for any cfer its 33...but that number rose from 31 in just a year....With all the new meds coming out, advances and last resort transplants lives are being prolonged why longer than anyone has expected. When I was diagnosed they said life expectancy was 11....I am now 22 and going strong. Sure I have hospital visits and things but I dont plan on dieing anytime soon. Dont think your husband will just drop dead at 40 for all anyone knows he will live till he is 80.
How often is he in the hospital? Has he ever been in the hospital. You said you keep his inhaler by the bed. So I take it all he does now is an inhaler and not full on breathing treatments and inhaled antibotics....Just what I got from your post if I am wrong sorry. Does he get chest infections alot? If he has never been to the hospital...or maybe goes in once a year...I say he is doing fantastic...and if all he needs right now is a inhaler....wonderful....That means he must not have much lung involvment now. Less lung involvement now means less lung damage...which is wonderful for any age but at 22 even better. Again if i am wrong I am sorry. But its still the same....just because a doctor said 40 doesnt mean it is so. I know this is cliche but no one is garrunteed (sp?) tomorrow. Make every day as if its your last. If you do that if you or him live only a year or 50 years more you will have such a wonderful life, no matter how long it is. Yes there will be hard times, some very hard, some you think you cant get through, but there are times that are so wonderful just because you are together, times you are so happy you almost forget the worst of times. Again I know i am repeating...but dont listen to any life extpectancies they only make you worried and scared. They rise every year anyway. Its just best to ignore them and go on your way as if you werent given a time line. Yes enjoy eery minute of life but everyone should do that anyway.
 
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Emily65Roses

New member
When I was born, my parents were told I was more than likely not going to see my 18th birthday. Now I'm 21 and they're telling me I'll live to 30s or 40s. It always changes. And if he's really mild, he's doing better than me (I think I'd classify myself as moderate), so he's probably got even longer than I do.
 
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anonymous

New member
He's never in the hospital except for his checkups. He just coughs alot. he has a inhaler which helps him cough less. He was diganosed with CF last year. up untill then he had no idea he had it. He used to be a chain smoked, he smoked since he was 15. he quit last Decemeber for me, cuz i couldnt deal with a smoker and i knew how bad it would be for his health. so thats one reason why im worred about him as well. you are right. noone really knows when somone is going to die. i hope your right. thank you so much for responding.
 
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JazzysMom

New member
When I was diagnosed at 7 my parents were told I wouldnt live to my teens. Then I hit my teens & they were told that twenties were out. Now I am 37 with a child & up until the last few years have done very well. I think it is very important to pick & choose what you take to heart in the medical world. Life is not a gaurantee no matter what so my best advice is to enjoy your husband each & every day even when times are rough. I heard a lot of crap when I got pregnant about how unfair it would be to live a child without a Mom etc. I have a fabulous husband who is a great Dad & a great, large family including Aunts that she adores. I lost my Dad at 17 and my friend died of Cancer leaving her 3 year old daughter. It sucks no question, but in order to beat the odds, you really need to try & live not just exist.
 
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CrystalDaniels

New member
He's never in the hospital except for his checkups. He just coughs alot. he has a inhaler which helps him cough less. He was diganosed with CF last year. up untill then he had no idea he had it. He used to be a chain smoked, he smoked since he was 15. he quit last Decemeber for me, cuz i couldnt deal with a smoker and i knew how bad it would be for his health. so thats one reason why im worred about him as well. you are right. noone really knows when somone is going to die. i hope your right. thank you so much for responding.
 
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anonymous

New member
Cf is such a complex disease and different for everyone. DO NOT believe in life expectancies. Nobody knows when they are gonna die. Do not focus on numbers!!! When I was diagnosed in 1972 at the age of 2 they did not expect me to live past 5. Well, I am 33years old and live a very full life. I am married to a wonderful man!!! Concentrate on keeping your husband healthy. He should also do all he can to stay healthy and strong. So, when he does get sick his body can be strong and fight it off or bounce back to his normal baseline. The best advise I can give anyone with CF is to start early in keeping your self strong and healthy. EXERCISE, do all your meds so that your body is strong when it gets sick and can take it!

Think positive and do not focus on the time you will not have him and focus now. Not to be cliche' or morbid but anyone can get hit by a bus tommorow and die. We do not know when the good Lord is gonna call us home. So enjoy the time now!



Jennifer 33yrs old with CF and CFRD
 
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anonymous

New member
Crystal,
Not to change the subject, BTW you and your husband look GREAT together, but how did you post that pic? Just curious. I didn't know this website was capable.
Jen
 
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Emily65Roses

New member
I didn't know the site was capable of pasting pictures either. And I have to say, I agree, you guys make such a cute couple. <img src="i/expressions/face-icon-small-happy.gif" border="0">
 
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CrystalDaniels

New member
just html < i m g src = ''> no spaces except between img and src so inside it should be img src

then you need to fidn your pic, you cannot do it off email or your hardrive the picture needs to be on a website, you can put it on photobucket.com or picturetrail.com
both are free.

right click on the picture click on properties then copy the website URL

post that in the parenthiese (<b>''</b>)

and thats it!put it in the profile portion of you profile.
 
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anonymous

New member
I have 2 boys with cf which is hard work i would like to talk to someone who is living with cf to hear how they feel about it.
 
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CrystalDaniels

New member
its really really hard for me, my husband has it. I really dont know how to deal with it. but i do. i have no other opition. I lov ehim to much to let him go.
 
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Purplelungs

New member
Since he is never in the hospital I say you need to chill out. Dont worry till there is something to worry about otherwise your going to make yourself sick and when you need to be strong and put together your going to fall apart. If your falling apart now barely able to cope how are you going to handle it when he is admitted in the hospital for the first time, or needs some surgery....whats going to happen when his health declines in the future. I am not judging saying you are this way now. I just mean "what if".... I know its really hard now, not knowing the future and what it will hold. But if he didnt have cf would you be so worried about the future like you are now....this goes for anyone living with a cfer. On the good days you just go about as if it wasnt there, yes very hard....the cfer still does their meds and things ...but there is no need to dwell on things you can not change, you can still fight and do all you can to stay healthy, help your partner or kids stay healthy, but there is really no need to worry till you have something to worry about. Other wise it will be harder to handle when the time comes. I know it sounds alot easier said than done...its taken me years to actually do as i say and i still worry sometimes. I just repeat to myself 'this is pointless i cant do anything about it but fight'....I know it must be harder on the caregivers than the ones with cf...but its still something good to say to yourself...even if its just work or school stuff.
 
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anonymous

New member
Crystal,

What a great picture - you both make a wonderful looking couple. I think your hubby has a great future and you shouldn't weigh too heavily on the "what ifs." Researchers are coming so far with CF. With any of us, there are no guarantees. Enjoy every day and try to not worry so much. It will be ok. <img src="i/expressions/face-icon-small-smile.gif" border="0"> Carey
 
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anonymous

New member
Crystal, Having a husband with CF-I understand where you are coming from. But I have to agree with all the other post, you can't live your life with your hubbie thinking about all the "what if's". My husband was diagnosed at 2, and I see that your husbands situation is very different being that he was just diagnosed; but it has taught me to appreciate every single day with him, and savor all the little things more than I ever use to before I met him. The reality of life, is that anybody could die at any time for any reason. My husband could die from a car accident, not CF. I could die from an accident, on the front lines, in an airplane crash...you never really know. At least with his CF diagnosis you know that the time MIGHT (and I say might with a lot of emphasis) be shorter so everything in life becomes a little bit sweeter.

Just out of curiosity, what do you mean when you say mild case? Does he have lung involvement? Like cronic lung infections, congestion...? When he was diagnosed, did the doctors have him use a nebulizer or recommend any chest PT? What about digestive issues, does he have trouble gaining weight, trouble in the bathroom? How about infertility, did the doctors discuss any of that with him. I know my husband was hit with the CF infertility information (THat infertility in CF males is a high percentage) at about 16 and the doctor just gave him very vague information and no solutions or recommendations.

I am just wondering (again) because I am also a young married person, how long have you two been married?

It's nice to see you on this board.

Julie (wife to mark 24 w/CF)
 
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anonymous

New member
One important suggestion for your hubby to keep his health up is to have him try to stay physically active while he can. I think this is very important in keeping strong lungs.
You both look great!
 
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anonymous

New member
<img src="<a target=new class=ftalternatingbarlinklarge href="http://img.photobucket.com/albums/v655/jlphillips/IMG12.jpg"">http://img.photobucket.com/albums/v655/jlphillips/IMG12.jpg"</a> alt="Image hosted by Photobucket.com">

Testing photo here:
If it turns out its a pic of (left to right) my son no/cf, me, my daughter carrier cf, and my step son w/cf.
Jen
 
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