New in Town

[Benjamin Griffith]

Hello there I am 23 and I have cf, I was told I had it when I was 21 and it has been a fight to work it into my life and learn how to have cf and a life.the reason I am on here writing this is cause I need help, I need someone to talk to. Who knows what it is like to have cf and a life. My family tries but they can never know what it is like. Please someone help me...

 

[Gorf]

I live in Ohio, would be glad to talk to you, I am 47 year old with CF. If you want my FB account info, just ask.

 

[Benjamin Griffith]

That would be awesome! If I can have your info I just need someone to talk to who understands

 

[JustDucky]

I am also a late diagnosis, it it still overwhelms me nearly 8 years later. I totally understand what you mean about family trying to understand but they simply can't, not unless they live with CF themselves. It does get better, juggling CF and life...although there are times when CF demands more attention than your social life. And of course there are good times when you feel like you can tackle the world, even with CF. You will learn how to listen to your body, CF'ers I have found are very in tune with their bodies. I know that if my temps hit 100, something is brewing and it is wise to call the doc and jump on the infection. You will also learn to become proactive in your care, if your gut is telling you something is wrong, stay with it and don't let any doctor tell you any different. We know our bodies so well, I think many doctors respect that. Let me know if you want my FB, I will give it to you

Jenn 40 wCF

 

[Benjamin Griffith]

I would like your Facebook info, I need all the help I can get...

 

[Aboveallislove]

Benejamin,
I'm a CF mom so I can't really relate to what you are facing, but I can imagine it must be so hard getting such a late diagnosis. For our son (3.5), this has been his life since 2 weeks old, so he hasn't known anything else. For you, it must be just overwhelming. I am so sorry for that. But I read daily here and there are so many folks your age and older who have such great lives and our such an inspiration. Also, I just wanted to suggest you get Kalydeco if you haven't yet. Given your late diagnosis, you MUST have some residual CFTR function and Kalydeco would help. If you aren't familiar with it, post back and I can give you a quick summary.

 

[Printer]

What do you mean, CF and a life? Those of us with CF have a life. Tell us what you are asking. What is going on that you don't have a life?

Bill

 

[Benjamin Griffith]

What I mean and I am sorry that I was not clear.. I feel like all I ever do is treatments I wake up do treatments, go to sleep do treatments but if I am on cayston three times a day it just feels like treatments treatments all the time.. I can't keep a job cause when I get sick the fire me because I was out to long or if I am on a pick that makes it worse so I feel like cf is my life that is what I mean by that. Again I am sorry it was clear.

 

[Printer]

OK Ben I understand. To some degree, everything in your life will continue to revolve around CF. You have had 21 years of untreated CF and therefore 21 years of CF damage. To offset this you have only had 2 years of treatment.

The treatment will "catch up" and your life will begin to normalize. Hospitalizations and IV treatments will become further apart. As this happens your life will "normalize". However, you will always have CF.

When I was your age and still not dxed, I took me forever to get my BS. It got easier as time went on.

Good luck,
Bill

 

[Deb]

Please understand that there is a lot of life outside of CF. While you are overwhelmed right now, once you get routines established and accept your disease you will be able to lead an active life. I was diagnosed at 24 and even though I was doing very well at that time I was still told I would probably live 15 years. I am now 52 and my life has never been better. Did I have some rough times? Absolutely. In fact about 2 years ago my husband was shopping for cemetery plots. But thanks to a new commitment to exercise and new drugs I have bounced back.
As I said I am 52, have been married for almost 30 years, have two grown children, a college education and I work full time and workout 5 days a week. All of this with CF and one lung. Life is good.
I wish you all the best as you navigate the newness of your diagnosis and develop a routine you can accept and then you can focus on life. You have CF, don't let CF have you.