Is there anyone here with Cystic Fibrosis who also has any kind of disabilities?

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Michael19
New Member


Date Joined Aug 2009
Total Posts : 4
   Posted 8/6/2009 12:06 PM (GMT -7)   
Hey everyone,
I'm 15 years old and I have Cystic Fibrosis.Dispite dealing with CF a year ago I
I had a skateboerding acadent when I grinded down a rail of 14 stairs I lost my balance. That mess resulted in me fracturing my spine and leving me paralized from the waste down.
I'v never really met anyone with Cystic Fibosis before let alone someone who is disabled with CF. Is there anyone here in these forms like me? If so how do you find getting around or exercising/playing sports that helps with CF and so on.

Gemsi
Forum Moderator


Date Joined Feb 2007
Total Posts : 1050
   Posted 8/6/2009 1:06 PM (GMT -7)   
Hi there Michael, and welcome to the forums!

I have aswell as CF, an undiagnosed muscle wasting condition. This makes me disabled so I have to use crutches. I find it very hard, trying to excercise enough for my CF, while trying to avoid pain in my arms and legs. Too much excercise, can leave me floored all week in pain, as I struggle to even get off the sofa sometimes. I am 23 years old, and keep myself busy in summer doing face painting at gala's to raise money for my social club. It's tiring but totally worth it. The rest of the time, 3 days a week, I go to college. I'm starting another new computer course in September, and I'm quite excited about it:)

Nice to meet you Michael!

Gem
Moderator of the Cystic Fibrosis Forums
Diagnosed with: Cystic Fibrosis, Asthma, ABPA, Clinical Depression, Mild Liver Cirrohsis, Mild Osteopenia, Erythema Nodosum. Waiting for final diagnosis on Muscular Dystrophy type symptoms.
Medication: Creon 10,000, Vitamins A,D+E, Serevent, Salbutamol, Paracetamol, Tramadol, Nefopam, Ursodeoxycholic Acid, Trazodone, Slow-Sodium, Azithromycin, Metachlopromide, Omeprazole, Tobi Ineb, Fresubin Liquid Feed, Skandishakes. I use PEP device as my physio.
Had a Port-a-cath fitted on chest wall since Nov 04
Help support the forums so we can support you:  http://www.healingwell.com/donate
Sometimes, I feel that I should go and play with the thunder - then I get scared and run away.


Michael19
New Member


Date Joined Aug 2009
Total Posts : 4
   Posted 8/6/2009 2:09 PM (GMT -7)   
Nice to meat you too!
I use crutches as well too at times but I need a brace in order to stay standing up but mostly I use a wheel chair because I'm compleatly paralized from the waste down. I cruched my T12 vertabre which damaged my spinel cord leaving everything in under the injured area paralized. I find it kind of hard to exercise because I still have alot of back pain because there were other fractured areas on my spine but I play basket ball and use athleatic equitment that are made for people in wheelchairs like bikes and a skate like sled for playing hockey. I have alot of upper body strangth because my arms are like my legs now and I exerise them alot and also lift weights. It's hard to exercise though because I tire easly because of cf.

Abbs
New Member


Date Joined Sep 2009
Total Posts : 11
   Posted 9/28/2009 2:38 PM (GMT -7)   
Hello there! I am new here, obviously.
I'm 18 and have cystic fibrosis, but I also have idiopathic scoliosis (a curvature of the spine, for those of you who don't know what it is). Anyway, I had really bad scoliosis- a 95 degree curve, and it was harming my breathing. Which is bad!!! I breathe pretty badly anyway.
Anyway, in January 2007, I got my spine fused and straightened. I now gave two rods in my spine along with about a billion screws. But my spine's curvature is now 20 degrees! Yayyyy.

Gemsi
Forum Moderator


Date Joined Feb 2007
Total Posts : 1050
   Posted 9/29/2009 2:46 AM (GMT -7)   
Hey Abbs, welcome to the forums!

Thanks for telling us about that!!

One of my friends has a seriously bad curvature problem. So far it's not affecting his breathing. His parents were really worried about the spine straightening op, with it taking about 10 hours to do, and whether it's safe to be under that long for a CF patient.
They've decided now that they're not going to do the op, unless it starts to effect his breathing.

It sounds like a really painful op though. I'm glad you went throuh with it, and that it has helped you so much!:D

Gem
Moderator of the Cystic Fibrosis Forums
Diagnosed with: Cystic Fibrosis, Asthma, ABPA, Clinical Depression, Mild Liver Cirrohsis, Mild Osteopenia, Erythema Nodosum. Waiting for final diagnosis on Muscular Dystrophy type symptoms.
Medication: Creon 10,000, Vitamins A,D+E, Serevent, Salbutamol, Paracetamol, Tramadol, Nefopam, Ursodeoxycholic Acid, Trazodone, Slow-Sodium, Azithromycin, Metachlopromide, Omeprazole, Tobi Ineb, Fresubin Liquid Feed, Skandishakes. I use PEP device as my physio. Had a Port-a-cath fitted on chest wall since Nov 04
Help support the forums so we can support you:  http://www.healingwell.com/donate
Sometimes, I feel that I should go and play with the thunder - then I get scared and run away.
I'm from the UK!!!!! If anything I say makes no sense to you, let me know so I know how not to be so English.


Abbs
New Member


Date Joined Sep 2009
Total Posts : 11
   Posted 9/29/2009 9:23 PM (GMT -7)   
It does take ten hours, which is a LONG time to be under, especially for us CFers. But for me, anyway, my recovery was fast. Incredibly fast, according to the doctors. Even for a normal person without CF.
Anyway, I wish your friend luck, but if he does have to get the surgery I would recommend going in to the hospital two weeks prior for a cleanup. I'm positive this helped my outcome.

timboy
New Member


Date Joined Nov 2009
Total Posts : 18
   Posted 11/6/2009 5:38 PM (GMT -7)   
Meds I'm on are making me deaf. So it goes. But definitely -- life is tough with Cf. Anything paired with it (or combined, if multiple disabilities) makes things exponentially worse. I mean, I can't fully understand what you're going through. All I can say is I'm humbled just hearing about you if you're still choosing to make the most of life. I suggest you try.
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