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Hey. Glad you're out of the clink (as we used to call it!), and looking to work out! I've just started exercising again, and so far, so good. Sore, of course, but not bleeding. I got a health assessment at my new gym, and explained everything to the trainer. My doctor said to exercise a...
Me again! I remembered two other things that help: 1) swimming pools. The pressure from the water can help. 2) compression gloves and socks. VERY useful. Good luck!
Hi! Sorry you're having so much trouble. I have what is termed "CF Arthropathy," which is essentially, RA without the degeneration. It just hurts in every joint in my body sometimes. I take Neurontin (generic name: Gabapentin), which is used for arthritis in an off-label kind of way. I've...
I've coughed up blood at the gym too, and as alarming as it was, it never happened again. On the other hand, I've coughed up blood in all kinds of situations, and they are almost always after a strain on my lungs (once after I carried a couch up some stairs with a friend, once after a five mile...
Hi! I was just remembering a time when I ran away to my room in the middle of nebulizer and therapy. My parents let me sit for a few minutes and then came in and said, "None of us want to do this, but we're going to do it anyway." They were immovable in their conviction that the therapy would...
I'm so sorry. We're out here. And depression can come with the CF territory--I've had it, and others I know have, too. Can your daughter's clinic have someone talk to her? Sometimes just a phone call from someone who has been through it can help. It gets better.
Long-time patient at HUP. They are the best! The staff are wonderful, doctors amazing, CRNP Marianne is phenomenal, and nutrition folks are great. I used to go to an adult clinic in Philly where I said the staff were lovely and really doing their best to keep me alive until I died. Then, for...
So sorry, sweetheart. Break ups SUCK. Can you still contact his family? I agree about the clinic perhaps helping you explain to your fam what's going on and what you may need. And I believe if you find the right person, they won't care if you're sick. I've been married for fifteen years...
I'm sorry to hear that you are so depressed. It's tough with CF sometimes. On the crying thing, though, I don't cry, mostly because I am so dehydrated all the time I don't really have tears. It doesn't mean you don't feel stuff, you know? See if you can't get out there a bit more, find some...
All of my PFTs (with numbers, charts, and graphs) have always been given to me or my parents (back in the day). Something is wrong here! Wage a campaign!! Knowledge is power!
I do use Pulmozyme! I was on the Phase two study for it back in 1992! Definitely a wonder drug, but I still get plugs. They're infrequent, thankfully. Sorry about all the morning hacking!
Hi! I'm surprised no one has mentioned this, but I get excruciatingly painful mucus plugs that feel like a nail on one spot every time I breathe. It's where a sort of clot of mucus has blocked a alveoli, and it's just awful. However, if you can grit your teeth through the pain, concentrated...
Hi everybody. I'm a frequent viewer and commenter, but I've never started a thread. I've been totally slacking off my exercise, and I need some encouragement. I'll be 40 in a month and a half, and I used to belong to a gym, exercise regularly, and now I just don't. I have a treadmill and...
Cool idea! I was diagnosed at birth and am turning 40 in a month and a half and still can't believe it! Lots of luck!! You're welcome to stay with us in Philadelphia anytime. Just PM me.
I've had a therapist since I was a teenager, largely to deal with CF issues. It's a difficult disease, and the isolation from others only makes it worse. I started to have depression when I was 30, and got on an SSRI plus Abilify. However, it wasn't until I started meditating that I got more...
I agree with this whole-heartedly. It is to your cousin you must appeal. And it's six feet now! The last thing you want is to exchange bugs. It sucks, you know, but just tell any well-meaning relatives and Skype Skype Skype!!!
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