Hi new from Orlando
Hi, just wanted to do a short, I hope intro. My name is Cindy and as stated I'm from Orlando. I was diagnosed with Wegs in 1972 at the tender age of 20. Later determined to be limited Wegs. I've been mostly symptom free for the past 40 years, but with hindsight I realized there were signs (skin, constant runny nose, neuropathy). About 10-12 years ago I had a brochoscopy for a lesion in my lower right lobe. They were unable to get to it because of a bloody airway. My lung partially collapsed and I was in the hospital for a week. All washing came back negative for Wegs, of course. I was followed with CAT scans for two years with no noticeable change.
About a year ago my lung capacity changed and after changing primary care Docs I found one that referred me to an Interventional Pulmonologist. A CAT scan in April that showed two lesions in my bronchial tubes. The doc elected to follow up in 6 months because my father had passed on the day of my appt. Don't think I would have been able to cope with a bronch right then. My 6 month followup was two weeks ago and the Doc decided to do a bronch. This was done with full knowledge of what had previously happened with the last bronch. (I had the report.) The doc found bronchial stenosis in the right bronch and the bronch intermedius. He stretched both using balloon dilation. He then used an Argon plasma laser to control bleeding and excise the lesions (which were benign but consisted of granulation tissue). These were obstructing the airway. 90% in one location and 50% in the other.
Right now he's sending the biopsy off for a second opinion to a pulmonary pathologist (probably Mayo). (He didn't think the hospital was thorough enough.) I currently have a partially collapsed lung (again). Since he removed 50cc of blood, my thought is this caused the collapse. So coughing, hard to breathe, very short of breath right now. Using an incentive spirometer. Plus I'm on 40 mg of predisone stepping down over 1 month. Before starting that today I had just finished a dose pak for a week. He wants a definitive diagnosis before adding CTX. I'm in agreement with that.
My original dx was made from an open lung biopsy in 1972. It was sent to AFIP (Armed Forces Institute of Pathology.) They no long exist. It was then sent to Mayo for a second opinion. They both came back consistent with Wegs.
So a somewhat scary time for me right now. Very stressful needless to say. Holidays, not working since I can't breathe, and more drugs.
Sorry this wasn't as short as I had hoped.
Cindy
Cindy
Earth is just a stopover and whatever you achieve there is only a small part of the deal. The Afterlife Of Billy Fingers
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