here's my fear.....

[welshwitch]

I am a healthy 25 year old woman with cf. I have gone to a CF clinic all my life. The thing is: I have been told that I have had a "mild" form of this disease all of my life, one of the more "rare" strains of this. (the exact strain or mutation I don't know.) I have never been hospitalized, never had to get a "tune up", never had CF stop me from doing anything I wanted to do. I only take pills, I don't do any treatment (vests, inhalers, etc.) except running. My lung function has always been over 100%.

This is all great, but my fear is that a.) one day I will go to the dr. and they will tell me that it is now time to start treating my CF more proactively because my body is starting to shut down and b.) it is hard for me to face the reality of this disease when the physical effects seem to be so mild and c.) I am 25 and have been told all my life that I am going to die young, but nothing has happened yet and it's really emotionally confusing for me! I almost feel guilty.

Any words of wisdom? Thanks!

 

[Purplelungs]

I am 22 I hope i have some words of wisdom..

First off stop feeling guilty....live it up....all of us cfers who have hospital stays and what not would want you to. We dont want you feeling sorry for us....heck live for us while you can....Now I am fairly healthy for a cfer....i havent been through half the stuff some of my friends have, but i do have some friends that havent been through half the stuff i have....The ones that were worse off then me always made me promise to do all things i want to know while I can....have no regrets. (i speak in past tense because some of them have gone)....So I will keep my promise to them...Sure I may have some limitations but I wont have regrets.

If and when that day comes that the doctor says hospital time...dont freak out. Doesnt mean your going to die the minute you get in that hospital room. It will be stressfull and scary, I wont lie. But you will get the hang of it. Also the first hospitalization doesnt necissarily mean your body is shutting down. It just needs some help getting back up to normal....i wont lie some people do get sick really fast and go down hill really fast...but that doesnt mean it happens to everyone, neither does the first i said. Yes facing the reality of it is hard to face when your doing great...sometimes even when your not doing great...call it denial or whatever you want....You still know the "facts" but you dont have to dwell on it.

Dont listen to what you have been told all your life...about dieing young...Heck I say if your going to listen to it learn from it and just do all you can while you can (just like i said above applies here). Dont listen to all the life expectancy stuff.... if you must just say you wont die then. Take care of yourself, exersise(running is great) and do your meds like you need to....that helps alot in keeping yourself healthy for as long as possible.

I say stick to what you have been doing...it seems to be working for you so far. Live your life well, make sure you have no regrets...Thats what anyone can do.
Amanda

 

[anonymous]

I recently celebrated my 53rd birthday. I have had an incredible life in spite of and because of CF. I know about the fears. I've been through the worst of them, but am still going strong. I even had an episode several years ago that required me to be on a ventilator for awhile. I work full-time, have two kids and an amazing husband. I am an expert at carting around oxygen and not being remotely embarassed about it. As my doctor frequently tells me, don't stop doing anything you're doing, because whatever it is, it's working.

Live your life the way you want and don't let the CF ever become an excuse. There are lots of things I can't do anymore - for example, I won't be running any marathons. But the truth is, I don't think I'm the type of person who would have ever wanted to run a marathon anyway!

 

[thefrogprincess]

I'm 23 and never had a tune up either. My lung functions are in the mid 60's. Just 5 years ago they were up in the 80's. It was such a slow decline that I really didn't even notice it. It wasn't like I woke up one day and was like "What happened?!?"

The point is, don't worry about it. You're not going to get sick overnight and as long as you take the meds you are on and keep running (way to go on that!) you're going to be healthy for a long time! Enjoy it.

 

[Diane]

I know exactly what you are saying and i was once in your shoes. I was also healthy and didnt have a need for treatments and such and always said when the time comes and i NEED to do these treatments ill deal with it then and do them. Well the time came when i developed b.cepacia. Things changed in my life and i had to learn to deal with the changes. Its amazing how when you're so healthy you cant imagine a day when you wont be, but when it happens you find ways to cope and deal with it. Your body wont just one day "shut down" and decline is usually gradual, and you sometimes dont even realize it. I never thought id ever have something like b.cepacia especially since i was always so "mild" and doing so well all those years, but things happen. I adjusted, and if the time ever comes that you experience changes, you will adjust also. Dont feel gulity one bit! Enjoy every single minute you have of being well !!!! Life is short even when you are well , so enjoy it all!!<img src="i/expressions/face-icon-small-happy.gif" border="0">

 

[anonymous]

thanks guys!!!

i feel SO much better hearing all your kind (and non-judgemental) words. I always say to myself, "life is short LIVE IT UP!" but then moments of darkness creep up every once in a while. It's good to know that the possibility of hospitalization won't just be a black and white situation, because everything in life so rarely is black and white, rather, shades of gray. I consider myself extremely lucky to be in this current position of health and I need to give myself more credit for dealing with the psychological side of this. Thanks for a realistic and non-watered down window into your experiences...although my parents constantly tell me "You'll live to be an old lady!" I sometimes wonder if they too are in denial.

Take care everyone and don't get down on yourselves!

 

[ClashPunk82]

You sound pretty healthy to me so I am sure it will stay that way for a long time. Don't think about all that stuff because it just makes you scared and overwhelmed. I am glad to hear you are doing so great. For me I have been sick all my life and right now I am being listed for a lung tx. My PFT's are about 20 right now. Although I can't do a lot I try to do what I can. I have a great boyfriend and he treats me great and we go to the cape every summer and he takes me out shopping to buy me things! <img src="i/expressions/face-icon-small-happy.gif" border="0"> Although I can't travel really or work I am happy with my life and am glad I can do what I can. I also have a great family and without them and my boyfriend I don't lnow what I would do. Just live your life, be happy and don't let CF get in your way!!! <img src="i/expressions/face-icon-small-tongue.gif" border="0">

 

[anonymous]

First of all Id like to say you are so lucky to be in the shape you are in. I went through my whole childhood not going to the hospital once until I was 16. You really have nothing to worry about. Youll get used to it slowly

 

[welshwitch]

I am lucky, huh! I think everything is going to be OK. I should be thankful to be doing so well and not think of myself as some freak who shouldn't be doing so well (even tho doctors sometimes wonder why I am--they can suck it!) Thanks again for all the positive comments and I think this is a great supportive online community.

 

[anonymous]

To the original poster,
I want to tell you that you dont really have anything to worry about. It sounds like your doing really good. Im 22 and started going into the hospital when I was 16. Yes it was scary the first few times, but you kind of get used to it. It's not like your going to wake up one morning and all of a sudden your on your death bed. For me, I think, its slowly getting worse, and its just something that Im dealing with. Dont let it get to you, live your life the best you can and have as much fun and fullfillment as you can. And Id like to say that you are so lucky to be as healthy as you are and you probably got a long way to go before you start to worry. Look at me, since I started to get worse, Ive had a child, am working full time and my PFTs are still in their 70s. Good luck! vickysmommy1@netzero.com