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New here.. I write way too much, sorry

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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.


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Hi Sharron! Welcome to the board!

I did a little looking around and here's what I found...


(Local chapters can refer to support groups for persons with chronic lung disorders (emphysema, chronic bronchitis, asthma, pulmonary problems, etc.) if available. These groups use names such as "Easy Breathers," or "Family Asthma Support Group.")


(Online. Support for persons afflicted with emphysema. Offers information on local support groups. Forum for sharing ideas ans help in dealing with emphysema. Advocacy for research.)


(Online. 1,000+ members. Provides support for people with any type of interstitial lung disease (including pulmonary fibrosis). Opportunity to meet others with similar conditions, experiences, and knowledge.)

Hope this helps!!

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That address will take you to a site that has several differnt message boards that I think you will find information and also very comforting. Cancer or emphysema or the two of them combined is in NO WAY a death sentence.

Good luck and try a positive approach to life and keep a sense of humor. Those two things make all the difference int he world.

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Sharon, I have family with your condition and as with any health problem it can get you down at times. Take it a day at a time and try not to let it overwhelm you. Just reading some of the problems others have here will make you understand it happens to others besides yourself. Hope can be found here with alot of support. Good luck to you and may your day be worry and pain free..

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I'm still not sure I'm in the correct place to post a reply to everyone............

I'd like to thank the folks here who have offered help to me. More than that I'd like to say how wonderful it is to be here around people with such courage and hope and faith and fortitude. (I seem to have lost my faith along the way and don't feel ready to delve into that yet).

The comfort of just reading your stories, seeing your persistence and hope in the face of your own life battles is amazing.

I've been sick for 4 or 5 yrs. now so I really try not to talk about how I feel to family and friends... they're sick of it as am I. It's so hard not being able to work, or walk,....when work, independence, and self support were so crucial to me........after reading here last night I remember why a support group is so very necessary.

I again say thanks , and to everyone here I send all my southern healing energy to you. I felt helped just reading your courage. None of you seem to feel anything other than gratitude for what you have and hope for what you will have.

I'll probably hang around till I can find an Emphysema group. It helps to see your courage and hope as I once again try to adjust to another step lower of living impaired.

For anyone who believes in the mind/body connection most of my health issues are shortly after mama's suicide. I couldn't deal with it the first couple of years. I tried to hold the emotions in and my body spit them back out at me.

I tend to forget I lost a kidney too. 3 stone surgeries and a ruptured removal - that was back in the early 1980's and I had a radical hystermectomy at 28. Those were so long ago I really do forget about them.

After reading lots here last night I realized how much I do need a support group. What wonderful and caring friends are made thru these situations.

It feels so good being allowed to ramble on and talk again. There aren't words to thank you guys........ and I do feel a bit ungrateful in the face of what you are living so hopefully with. My wimpy health seem so easy next to yours.


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