Wow! I couldn't agree more about the "professionals," at least the ones that seem to hold a monopoly on their respective practices in my town. I sure hope you have a different doctor now!! I will definitely investigate saline infusions! Thanks for the tip.
As I'm sure you've noticed from my post, I can be very critical when pointing out all the bad things that have happened. I can also give credit where it's due, and after yesterday, believe me, it's DUE!
I had an appointment with National Jewish Medical Center in Denver yesterday. This appointment lasted six hours, but I didn't have to sit and wait for anyone ONCE. The entire experience moved like a well-oiled machine. They made my local hospital look like a butcher shop.
As noted, I HAVE done a lot of research into this (especially pancreatitis), but it's sometimes hard to find definitive answers to cystic fibrosis that is diagnosed in adults. In my case, my lung disease is mild. It's my pancreatitis that is debilitating. The doctor yesterday told me that eventually (probably in a few years) my pancreas pain will go away because my pancreas is basically cannibalizing itself. Once it finishes destroying itself, although I'll basically have a "dead" pancreas, I won't have any more pain. I probably will develop diabetes, though. Unless I develop pancreatic cancer (or cancer somewhere else in my GI tract), though, he told me that my lung disease will definitely be the cause of my death.
They gave me so much "stuff" yesterday, including a very nice book (hard-bound, no less), "Now That I Have CF." The entire book is devoted to adult-diagnosed cystic fibrosis.
National Jewish is THE place to go for this disease. This is their expertise. I had previously felt as if I'd been thrown to the "wolves" and had lost all trust and respect for the medical "professionals" as a whole. My experience yesterday has restored my faith.
They gave me prescriptions for a box (5) of Fentanyl patches, more Vicodin for the pain that isn't "hospital worthy," more Xanax for the incredible anxiety I have (I awake in the middle of the night, panick stricken, almost every night.) They re-began me on paroxetine at double the dose I had previously been on, feeling it might work better for me. They gave me an "Acapella" device to use daily that helps to get rid of the mucus. (I was surprised to find that the use of this device, as they directed, is exhausting! Now I understand why patients with cystic fibrosis are so tired as a result of the treatment they need to undergo.) They gave me an entire box of Creon sample bottles (pancreatic enzyme). They gave me samples of Qvar, Pulmicort, and two ProAir HFAs.
They advised me to apply for Social Security disability, and I met with the social worker for a very long time. She also wants me to have my "CICP" (Colorado Indigent Care Program) case re-rated because she feels I'm paying too much now that my income has decreased so much.
The only "snag" is that if I need to be admitted, they admit through a university hospital near them, again almost 80 miles from where I live. As it was, we had to rent a car yesterday to get there, so I don't know how, in an emergency, I would be able to get to the hospital. That's why I'm so grateful for the Fentanyl patches. A few weeks ago when i had a "hospital-worthy" attack, the two patches previously given to me by the hospital (which I saved) helped very much to get me through the attack. Only drawback is they take a while to get into your system, but once they do, they last for three days. So maybe these new patches will help prevent another hospital admission, as the others did.
I'm now "officially" in the CF register, and I've very eagerly agreed to participate in any research projects where they may need my help.
I don't know what's going to happen regarding my health, but at least now I'm in the hands of people I trust, and trusting is very hard for me to do at this point.  |
Thank you, Janie. - Marmann
