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Hi Kyeev, Sound similar to me. Duke actually just gave me the go ahead a few weeks ago for relocation and transplant, and here I sit in Durham, waiting for my first class tomorrow! I'm actually excited to get on with it, even knowing the risks and dangers. The quality of my life has been...

Headed to Duke in 2 weeks to start the transplant process. They said it was time and I shouldn't wait any longer. If you have any words of advice or wisdom, I'd love to hear it. thanks a bunch.

Hey Sarah, Have you had any other indications that it might be the Orkambi that is causing this? Any other changes in your health?

I'd add wearing a mask on public transportation (bus, train, plane) and getting the QUAD flu shot in early sept and then again in January. Yep, rest is critical. Not skimping on sleep at night and a nap during the day if needed. If we've been in a place that we consider "germy" or heavy in...

You'll get the hang of it pretty quickly. Just make sure you follow sterile procedure. Ports are so much nicer to have at home than regular IV or PICCs. There are also some terrific Utube videos online that you can look at to refresh your memory and help learn the process. My port has been...

Ditto. When I was a kid I had a pet chicken until my CF doc found out about it. Bye bye chicken. Dried droppings can easily grow the fungus Histoplasmosis, which can lead to fatal respiratory disease. They can also carry Salmonella and E. coli. No one needs those. We also had to rehome my...

Have you been tested for asthma? I developed it in my early 30's. Have a hyper-reactive airway. Like you, cant tolerate much inhaled meds, although advair and (surprisingly!) Cayston for short periods of time (12 days on, 12 days off). But cant even nebbie albuteral without reacting. The...

Hi. I've been approved for transplant at Duke, and I'm just waiting at this point....waiting until it's time to get listed. I'm not really sure what that means. The quality if my life has changed so very much, but how bad does it need to get? I'm not sure where that line is. It would really...

HORSES are allowed? Seriously? I could go back to riding and training again?

Jeannie85, my daughter (who is 11 and does not have CF or any allergies that we are aware of) does that too, and has done it for years. Twitching her nose, wrinkling it, sniffing, etc all seem to be habit for her. She does it more when she is nervous about something, bored, or worried. I'm...

I think when you are learning a woodwind instrument, you use a ton more air than normal because you have no technique. Once she gets technique, it should be a lot easier. Although I have a pretty low FEV1 and FVC, I can still play the flute a bit because I learned good technique as a...

Hmm, I wonder why I thought you were at Duke. I have to ask, since I am very curious, but are you walking at that high incline for the whole 50 minutes? If you are, goodness gracious! What happens if you have only 1-2 degree of incline, can you walk faster, mix it up more? Sounds like...

Yep, I can imagine that 50 minutes 5x a week on just a treadmill is pretty darn boring. You're at Duke, right? I'm pretty much in the same place I think, regarding FEV1. When I discussed exercise with Duke pre-transplant, they said that they wanted me doing 20 minutes on the treadmill, 20...

Tammy15, Duke will give you a whole packet on relocation and options. Its pretty useful. And keep in mind, Duke may accept him, but say it's not time yet. That is where I am sitting, in the "not quite yet" category.

lefty, I did notice that as my lung function declined, the harder I worked out, the more asthma and reactive airway disease I would have (but no blood). What happens if you moderate your workouts? Good luck at the hospital. Please let us know what they find.

I have chronic sinusitis and am planning on being transplanted sometime in the near future. Your post galvanized me into action. I'm now doing saline rinses at least once a day, if not twice. Thanks for the kick in the booty.

I wish I knew!! I have never coughed up blood, then suddenly last Friday, yeehaw, there it was! After about 7-8 hours, it stopped. Why did it start in the first place? Lefty, it sounds like your FEV1 is pretty good. I've asked docs about coughing up blood and the quick and very...

Ethan, Yes, I have CFRD. I put ON weight though when I was developing and lost tons of lung function. No one could figure out why since I was distance running 6 days a week, swimming, and biking. My A1C was normal, and my late morning glucose readings were normal. But I did some research...

Thanks Julie. I was looking back over my post and frankly, I'm a bit embarrassed. I was distinctly whining, and I hate that. I was going through a 5 minute bout of self-pity and I happened to be logged onto this forum. Sorry folks. I'm over it now. But Julie, I WILL take any prayers you...

Julie, Yes, I have heard several CF express their displeasure with Orkambi. But *shrug* for some it works well. I really think that they should have a lot more warnings on information page. I was also totally pissed that when I started having issues with the drug, Vertex stopped all their...