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Posted 10/22/2007 11:05 PM (GMT 0)
Hi everyone,

After having worked for a research project about the lives of CF patients, I am pursuing CF as the topic for my undergraduate senior thesis. I’ve decided to turn to this forum as a way of hearing about CF from the people that know it best (that’s you). Though I have done quite a bit of reading about CF, I still have a few questions that I hope some of you with CF, with family or friends with CF… really anyone that knows more than I do, could help me out with.

Please know that all of your responses will be treated with the greatest respect and all of your comments will remain anonymous. Feel free to PM me if you’d prefer your messages to be more private. I am so eager to learn more about CF and I am confident that any information you provide for me will be extremely helpful.

So…

I’m interested most in how CF impacts the sense of self, specifically in terms of living with CF into adulthood. Consider the following:

1. I have noticed talk about adults with CF as being an exception, or that some people are living longer than they are “supposed to” with CF. Have you made life decisions based on the assumption of a shorter life expectancy?

If so, how do you feel about those decisions? Regretful? Happy? Disappointed? Optimistic?

2. How central a role does CF play in your identity now?

How has the role of CF as part of your identity changed over the course of your life?

Feel free to let me know anything else about CF that wasn’t asked about in these questions (and I’m sure there’s tons to tell). My research is focused mostly on issues faced by adults living with CF, but I’d appreciate any feedback. Thank you so much!


Martha

Post Edited (MarthaK) : 1/1/2003 5:46:38 AM (GMT-7)

Posted 10/24/2007 4:52 PM (GMT 0)
Hi Martha, Welcome to Healing Well!

In answer to your questions:

I don't believe I have made an major desicions in regards to looking at how the furture may effect me. I've done the opposite, and rather than looking forward to my future, I try and only think about now, and how I can help me now. When I did used to give myself goals, they were always getting broken, and I always got disappointed because I couldn't quite reach where I expected myself to be.

With life expectancy, I try to see is as a target age to get to. I've beat 2 life expectancy's now, at 5 and 12. I can't stay very positive about what the future holds, or the life expectancy, because I have seen CF friends who have reached 31, one in there 50's, but far too many in there 20's. The CF life expectancy is an average, so I know that for all the really young people I have know who have died, there must also be the same amount of old people with CF.

I am a very CF thinking person. Everything I do in my life has something to do with CF in it. If I go out to the shop, I have to consider exactly how my lungs are feeling, or what level of tiredness I'm at before I even consider going. I don't like showing total weakness in public. If I don't look at every aspect of how I feel before leaving the house, it's more of a shock and worry when say, my chest starts playing up.

I find myself panicking a lot, if I'm not expcting something to happen.

I also have to be on constant alert for infection signs. I prefer to spot signs before an infection starts to actually effect my chest. That way IV antibiotics can kick in before it really starts too effct me fully.

Ermmmmmm............................Can't think of anything else you might want to know, but if you think of anything you want to know more about, feel free to ask. I'm happy to answer any questions you want answering.

Posted 10/30/2007 7:52 PM (GMT 0)
Thanks for your help... I really appreciate your willingness to share your experiences!
Posted 11/9/2007 9:16 PM (GMT 0)

Hello! I'm happy you are taking such an interest in CF, it will help research go far! I'll do my best to help you out!

The first question I'm going to say no to. I dont want to base my desisions off of this because I dont want to say that my life will be short, heck, I might live longer than you. Anything could happen, so if I'm going to base my life plans on having a shorter life, then every body else might as well too! They healtiest person on the face of the earth and they could be in a car accident or something.

I have to base my life around it. I take so many pills and treatments, but I try to live as normal a life as I can. I play basketball and I'm one of the fastest runners on my track team. I'm a stronger person for it, I know not to take life for granted, becuase it could be gone in a blink of an eye. I know you have to fight for what you want, whether it's as simple as fighting for a lower price at a thrift store or it's fighting for your life.

I have to go now, but email me at [email protected] if you have any more questions! Dont hesitate to ask!

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