how do u deal with cf as an adult?

[snickers1228]

Joined: May 2005
Sunday May 15, 2005 5:19 PM


..it seems to me the older i get the more trouble i am havein, i was never put in the hospital until i turn around 20 i am now 21 i have had 4 pic lines in the last year and been in an out of the freakin hospital so much when i get sick i dont want to go to my check ups cause its always bad news..it seems that it was so easy to deal with this illness when i was a child, i didn't get as sick and i was able to do alot more stuff..i just recently got married and found out i cant have a family and if i were to get pregant i have a chance of worsening my cf.....when i was like 5 they told my mom that the life expectancy was about 13 and then told her 25, so what is it now? i am so scared i aint going to enjoy a full life with my husband...i dont think my husband understand the dont really understand that i am going to get sicker and might end up dieing which i am so scared about...i cry myself to sleep cause i am afraid..i need help how can i get my self out of this stage i am in....

.

 

[Emeraldmirror]

I feel the exact same way. I live with my boyfriend I have for almost a year now. I've lived on my own before and what not, I just turned 21 and it seems like i just keep getting sick. I was in the hospital once when i was 16 for resistant bacteria.. and I wasn't sick, in fact i was a little pissed i was there to begin with. Now I keep spitting up some blood, I was off work for a month and it's only been three months and i'm starting to get sick again... I think basically it's just take it one day at a time. I think it's harder on the patients who grew up a little healthier, maybe one hospital visit or two, because once you have to go more than once every few years it really hits you. That's how i feel about it anyway. But i think one day at a time, enjoy the time you have.


Ashley 20 w/cf

 

[Dustin82]

I argee with u two I was health as a horse went in to the hospital once a year for a tune-up I made it 2 year without needing a tune-up and then I turned 20 and now I hate going to checks because it is the same story PFT's are low it is that time to go back in for awhile. The thing I hate is I feel good but that dumb computer screen said I dont and I know they have to go by something but one bad day and it cost u a ticket to the hospital and a few thoasand later.lol Everyone tells me to just live life and what happens is out of your control. Like I aways said "I did not pick CF it picked me" I think in my mind that CFers are pretty tuff people. (Just what I think I dont want any fights because of that statement) u just have to fight and not give up

 

[Emily65Roses]

"I think in my mind that CFers are pretty tuff people. (Just what I think I dont want any fights because of that statement)"

I can't see why anyone would argue that statement. Hahaha. We all deal with a bunch of garbage and I think we're all a bunch of pretty strong badasses. lol <img src="i/expressions/face-icon-small-wink.gif" border="0">

 

[thefrogprincess]

I'm all for sympathy but no one has answered her big question!

The average life expectancy for a CFer is now in the mid 30's. And it keeps getting higher every time they develop a new drug or treatment. So please don't feel like you only have a few years left. You have as much time as you want!

As far as having kids goes I would get a second opinion because while pregnancy can be rough for a CF patient most people get right back to where they were after the baby is born. And as long as you are careful and do what the docs say you can have a happy healthy baby. Or of course you can adopt.

If you just aren't able to get out of this blue funk your in, you may want to talk to your doc about an antidepressant. I usually don't condone them but sometimes its the only thing that helps.

 

[Diane]

There is something you must ALWAYS keep in mind....Healthy people die young for all sorts of reasons. Just because we have cf does not mean we will automatically be marked for an early demise. I lived my whole life not making any plans for a future because i didnt think i'd have one. Whats funny about that is...... here i am at 40 and i still dont like to make long term plans. I have seen a lot in my life take place, and i have a firm belief of ...."when its your time, its your time and thats that". Ashley is right about cf'ers who grew up healthy and then had to get used to changes in their life by cf's toll. When i developed b.cepacia i had to start getting iv's and going into the hospital, and doing treatments and all the usual cf protocol that i never used to do. I feel lke i just got diagnosed with the "real" cf. I had it pretty easy growing up, and the b.cepacia hit my life like a ton of bricks. Its amazing what we can get used to and what we can conform to when we have to. Bottom line here....................... keep remembering that healthy people die young and were able to live in peace because they had no idea their time was limited. Just because you have cf does not mean you will absolutely die young. Theres always hope for a good viable treatment somewhere down the line soon that will help us all. Take things as they come and let this illness know it will not take anything from you that you arent willing to give!

 

[anonymous]

All I've got to say is that if anyone with CF has made it 20 years without a hospitalization they are very lucky. My daughter is 11 years old and is in the hospital approximately every 3-4 months. Is it easier on her that she is "used to it" because this has been her norm since age 7? NO

She has missed out on her childhood - as well as the fact that she will miss out on her adulthood as well...........................

 

[anonymous]

To the original poster,

Unfortunately, I do not have a solution as to how to emotionally overcome living with this disease. I struggle with this as well. That being said, I find a lot of comfort from this site since everyone that posts on this site understands this disease. Therefore, I encourage you to post as often as you like.

In addition to this website, I also seek couselling offered by my CF clinic when I need that human connection. Have you considered counselling? They are there to help when things get too stressful.

Dxat35.