Hi there,
I'm Sharron in Baton Rouge, LA......... I quit smoking 8 years ago. I've been looking for a support board and info for my emphysema dx.... can anyone help?
here's my synopsis:
1982 I had emerg. open heart surg w/multiple blood transfusions.. I've always had
allergic bronchitis about twice a year. In
2002 diagnosed with hepatitis-C from transfusions in the 1980's. Liver was Advanced Stage 3 Fibrosis, almost cirrhosis. I treated with PegIntron for 48 weeks. it killed hep-c virus at 1st 3 mo. ck. .. my liver is scarred but only to a regular stage 2/3.
I began having problems with breathing the first month of hep-c tx. I needed a nebulizer the entire 48 weeks of Interferon shots.
2 mos. after Interferon treatment I saw a pulmonologist b/c I was so short of breath. He did x-ray; he saw 'something', did CT Scan. Still couldn't tell, so Bronchioscopy, still couldn't tell, so lung biopsy... no cancer but suspicious cells. ....went in for needle biopsy and no shadow or growth was there to biopsy.
2 months later had to have stents in my left main artery where 1982 blockage had been. I was diagnosed by cardio with adult onset atrial fib. (I think it's been there forever) I can't do blood thinners cause I can't get dressed every other day for the blood checks. It wears me out... one day out is 2 in bed.
I was on the doc merry-go-round -my life consisting of docs and drugs. I stopped and I got off! I stopped seeing docs... only my Internist who specializes in Infectious disease. I see him every 6 mos and do complete chem panels every 2 mos.
I am almost home bound and have been since the emphysema dx. Currently I use a nebulizer 4 to 5 times a day and Advair and Prednisone. My O2 is always in the upper 90's, HgB and RBC's low. No Oxygen needed.
I worked for the same group of Ophthalmologists for 30 years... When I lost my job I lost my health insurance, car, condo, did bankruptcy and moved into an apt. I live alone on SSD with Medicare. 2 sons and 3 grands.... I love living alone, with my puppy... I still drive, do lite shopping for groc.. & scrapbook stuff (I'm obsessed with creating a family story-pictorial history for the kids). I used to travel a lot.. and lecture.... and take poetry classes.... and....
After hep-c dx. I found a support message board, called Voices, on the Internet and made so many valuable friends. I learned more from them than I ever could from a physician.
My problem is ......... do you guys get out and about easily? I am prone to depression - my mom and only sibling did suicide 1981 & 1997.. Bi-Poplar 4's. I'm not bi-polar and manage my depression OK........My therapist of 20 years died of lung cancer last year and I see a psychiatrist now but he doesn't have a clue, he just accepts Medicare.
I suppose I need to find a support group on emphysema ... and if one more person tells me I don't look sick, I'm gonna spit nails! I don't look sick! Is there a place for me to find info. I was terrified until I learned all I could about hep-c. Now I need lung info.
Sharron