New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

Awol
New Member


Date Joined Feb 2007
Total Posts : 14
   Posted 2/15/2007 11:10 AM (GMT -7)   
My name is Angie, Im completely new to this forum and any sort of group support associated with my CF. Im 27 and was diagnosed with CF at 6 months old. I was always quite healthy for someone with CF, especially for a rebellious teenager and young adult who rarely did what I was supposed to... of course, Im paying for it now. I could be much healthier if I had submitted to treatment a long time ago. My attitude, however, I believe has greatly contributed to my success in that I have never lived as though I was sick, I never allowed CF to become my identity and I did everything that a normal, healthy person did and I believe that has kept my mind healthy which in turn has kept my body (relatively) healthy. I didnt really start getting sick until 5 years ago. I mean, I had problems in high school, such as episodic arthritis and the occasional lung infection but nothing that I couldnt recover from. I never did breathing treatments and I didnt even know that I needed to. Now I do 4-5 albuterol treatments and 1 pulmozyme treatment and I wake up in the night with my chest so tight that I have to do a breathing treatment and sleep indian-style with my head over 3-4 pillows to keep from having to cough. Im in so much pain that, despite my over-all health being fairly good, I have to take pain killers just to get around. I cough so hard that I bruise ribs and pull muscles BUT I also build muscles, I have KILLER abs :). I wish I could go back 9 years and erase the years that I drank excessively and hung out in smoky bars and trade them for responsible evenings of monopoly and risk and breathing treatments. My whole life Ive taken advantage of the fact that Im healthy for someone with CF and now I feel like a fool who has wasted the advantage and Im spending a lot of time now trying to get back to where I was, to no avail. All I can do now is keep a healthy mind and not do anything that will jeopardize my health any further.

When I was in 2nd grade I had a friend with CF (the only other person I have ever known who also has it) and she was very sick. While I had a cough, she had diabetes and was very frail and coughed harder and more frequently than I did. She eventually moved to California for better treatment and while Im not positive, because we didnt keep in touch, I dont believe that she is still alive. It creates such a strong reality of the situation that I have never wanted to face and only lately have I been willing to think and possibly accept that I really only have a good 5-10 years, maybe, left of my own life. I recently got married and I have a dog and no chance to have kids. I feel constant guilt over the fact that I got married because I love my husband so much and I dont think its fair that he is with someone that wont be with him forever and while I did inform him of my dis-ease, we never really spoke of the reality of my young death. I dont want to go through this alone but it isnt something that he is able to talk about and I really want to hear from others who are going through the same thing, it may provide some sanity!! I really have a great sense of humor despite this not-so-funny posting, Im a lot of fun to talk to, really! SO, I really hope to hear from people like me... and well, if there isnt anyone in my situation... congratulations :)

MarkR
New Member


Date Joined Sep 2004
Total Posts : 12
   Posted 2/16/2007 12:31 AM (GMT -7)   
Hi Angie
Mark here, I know what you mean about not knowing if your friend is still alive. I've lost allot of friends to CF.
Oh by the way welcome to our little site.
For me, I was real sick as a baby. My parents decided to move to California also for better treatments, well it worked. I went all through school and some college with out getting sick. My first hospital stay wasn't until I was 20 yrs. old. But since then I think I have spent more time in house then at home. now I am 4 years post doublr lung transplant and doing pretty good.
So hang in there girl, there is hope out there.

Awol
New Member


Date Joined Feb 2007
Total Posts : 14
   Posted 2/16/2007 4:05 AM (GMT -7)   
Thank you, Mark for responding! What is it like having a lung transplant?? Obviously it was successful so how does it feel, breathing and all??!! I would think that the first time you took a deep breath you would practically choke on all the air! Its amazing the way our bodies get used to surviving on so little oxygen. I drove up Pikes Peak, which is 14,000 ft, on my honey moon and my oxygen sat. level was between 45 and 50 and I was still walking, barely, but walking nonetheless... its crazy!

It feels strange talking to someone else who has CF, it is unreal kind of, it almost doesn't feel right. Sometimes when I tell someone that I have it I feel like I am succumbing to it, making it real, as if it isn't otherwise. I've worked hard in my life to make sure that people know me as Angie and not the girl who has CF and I don't want that to change. I guess here I don't have to worry about that because everyone has it. Despite feeling a little weirded out by talking about it, I'm really excited to have so many people around (virtually) who know exactly how I feel. I would like to be able to get past the whole CF aspect and have fun conversations and get to know people but I guess I am not really there yet, I am in serious mode for once (maybe twice).

I hope I hear from you again, let me know about having functioning lungs!!

Angie

MarkR
New Member


Date Joined Sep 2004
Total Posts : 12
   Posted 2/18/2007 12:26 AM (GMT -7)   
Hi AWOL
Hope all is well.
When I had mt Transplant and woke up in recovery, I couldn't believe the feeling. To take a deep breath with out feeling the junk in my lungs. But it wasn't as good as when i came down off all the drugs. I am a new man and it feels great. The doctors are worried now that I might be trying to reject. My PFTs came down some and I got fluid built up around my lungs. But I can't tell, I'm having to much fun.
I know how you feel about talking to other people about CF, it felt awkward for me to at first too. Don't worry you will get used to it. I did. But after 43 years its crazy what you can get used to. Like you said living with not being able to breath you learn to cope pretty good. The nurses used to ride me about always saying that I was fine. The couldn't hear any air moving in my lungs and they would ask me if I was ok. and I would say I was fine.
Any way You take care of yourself and keep in touch.

Later
Mark

Pour on the fat and hope for the best!!!!
New Topic Post Reply Printable Version
Forum Information
Currently it is Wednesday, December 07, 2016 5:31 PM (GMT -7)
There are a total of 2,734,357 posts in 301,205 threads.
View Active Threads


Who's Online
This forum has 151325 registered members. Please welcome our newest member, artgal234.
351 Guest(s), 12 Registered Member(s) are currently online.  Details
don826, Celeste15, Artist Mark, Wanda1225, Teamchris, Serenity Now, Gear, Huddie, ChickNorris, time2reclaim, Fairwind, artgal234


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer