I'm so sorry to hear about your husband's cousin's wife. Do you mind sharing how old she was and if she suffered from this all her life or was diagnosed as an adult?
As far as how I was treated, it's been five months now since I found out, and I just get angrier and more frustrated every day. I wonder, if that test had been negative, if I would have ever notified that my DNA had been collected in the first place. Now I'm wondering if it's been collected before without my consent or might be again in the future without my consent. I even wonder if this is done routinely to patients who are uninsured and considered "indigent."
All I know is that this is becoming an increasingly difficult disease to manage, and even before the DNA testing was performed, I knew I was getting sicker and sicker.
I'm thinking VERY seriously of filing a complaint with the Board of Medical Examiners. In fact, I have printed out the form but haven't filled it out yet.
I'll wait and see what happens at my appointment with the CF Clinic on Wednesday before deciding whether or not to do it.
I again thank you very much for your post and hope everyone who reads this will know that adult-diagnosed cystic fibrosis can happen and is happening, from what I've read, with increased frequency. I never knew that, and although I obviously have my "issues" with how this was handled, this is my way, I guess, of "shouting it from the rooftop" so that others might be informed because I don't want another patient to go through my experience. As they say, knowledge is power.  |
Thank you. - Marmann
