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Thanks very much for your post and your prayers. My main intent in posting was to inform people that this disease can be diagnosed in adults, even after having a relatively healthy childhood and adulthood. In all the medical notes I've ever done, I have never seen a newly-diagnosed case of CF in an adult.
My second intent, admittedly, was that I was/am very angry about the way this DNA testing was conducted, and I wanted to warn others out there that this could happen to them, as well, and if they're uninsured when the testing is done, they're not going to be able to get health insurance if the test is positive. I did contact several attorneys over this matter. They were either uninterested in my case or were already being treated by one of the physicians in this large monopoly of specialists that spans several states. I also contacted HIPAA, but they didn't feel this fell under their purview. The last thing I did was to contact the State Board of Medical Examiners (with a copy to the State Medical Society). I received a reply from them just a few days ago wherein they informed me that they had opened a file and are planning to investigate the case.
About a month ago, I applied for Social Security Disability benefits (as well as SSI benefits, since my income is now so low). I hear that 75% to 80% of these cases are denied on first try, so I'm not holding my breath (no pun intended). The SSI program is a needs-based program. It's basically welfare, and I almost requested they not file that application because I felt so ashamed. I had never been on welfare in my entire life. However, I DO need the medical insurance desperately, and even if I were approved for and began receiving Social Security disability benefits TODAY, I wouldn't be eligible for Medicare for roughly 2-1/2 YEARS, whereas medical assistance is immediate with SSI. I'm still working as much as I can (which isn't much). I'm hoping my employer doesn't fire me because my job is the only source of pride I have remaining in my life these days.
As far as your adult-diagnosed ADD, I'm very sorry to hear that. Are you taking medication, and if so, is it helping at all?? I hope you can get treatment and that the treatment helps. For a while, I thought I might have the same thing, but then I realized all the drugs I'm taking would be enough to cloud up the brain of a genius, so I'm pretty sure that's not what is causing my inability to concentrate, etc.
In your case, it seems that you've had an "AHA" moment, where you can look back at your life and realize that this is a disease you've probably had all along, but, as you said, medical technology is advancing, and we're learning new things every day. Certainly, nobody knew of or much about ADHD when you were a child.
I never had an "AHA!" moment with this. About a dozen years ago, I had my gallbladder removed because of stones. I had a hysterectomy due to a prolapsed uterus in 2001. I've had sinus infections and bronchitis a few times, but I don't believe I've had them more than "normal" folks. In fact, before I became ill in 2006, it was probably close to a DECADE since I even had a normal cold! In July of 2007, I apparently had pneumonia during one of my hospitalizations, but I didn't get the sense of a "problem" or even feeling as if I had a "cold." The first "really bad" cold I felt was during my hospitalization in August of 2007, and, ironically, that was my best "oxygen" hospitalization out of all of them; I needed very little, if all, oxygen during my hospital stay. The "cold," however, was the worst I had had in my entire life. I even complained to the nurse about it (which I never ordinarily would have done with a "normal" cold). That was the same hospitalization when the DNA test was taken.
I was fortunate enough to visit National Jewish Medical Center (about 80 miles from my home). My doctor is the director of the Adult Cystic Fibrosis Program there. He said I have TWO "disease-causing mutations." He told me that my pain will eventually stop once my pancreas totally destroyed and replaced with scar tissue. (I've read that people with chronic pancreas have an increased chance of developing pancreatic or other digestive cancers, and my mother died from colon cancer.) He said, instead, lung disease is probably what will kill me. X-rays showed bronchiectasis (which they said is secondary to cystic fibrosis), and my PFTs were abnormal, but my pulmonary problems aren't the main thing with me right now. In fact, although I'm noticing an increase in sputum production lately and the tendency to become short-winded more, this part of the disease seems to be something that is coming on so slowly that I barely realize it, for which I'm very thankful.
I think, other than my loss of pride as a human being, the main thing that saddens me is all the children and babies that have died from this disease, and I feel very guilty if I sound like I'm complaining. I'm NOT complaining (except for the way the doctors acted), because I feel so fortunate to have been on this planet for all these years that if I die today, I will have at least had an opportunity to live my life that so many babies and children weren't fortunate enough to have.
As I first wrote, though, please keep my experience in mind, in case someone you know and love suddenly develops digestive problems that can't be explained, are labeled "idiopathic" and become chronic, and tell them to be certain to have insurance before agreeing to or requesting a DNA test. If they have cystic fibrosis, the CF Foundation offers to assist in the payment of premiums if someone can't afford them, but they urge people to maintain health insurance. In my case, even before the diagnosis of CF, my health insurance premium rose to 50% of my gross annual income, and I simply couldn't afford it any more. In addition, between the copays and deductibles, etc., I still owe a LOT of money to other medical providers the my "insurance" wouldn't pay.
Again, thank you for your prayer, and I will send out one to the "Big Guy" for you, as well. I truly hope you can find a medication that will help with your ADD. (By the way, I don't consider it to be "just ADD;" it's a disease that can really mess up your life!)  |
Thank you. Please see message. - Marmann
