Lynn Bastian – Living in Spite of PAH
My journey to my correct diagnosis is similar to that of many others. I quit smoking over 30 years ago and slowly but steadily gained weight. I got to a very uncomfortable size and knew I needed to do something. I started to exercise and get serious about my health. It seemed the more I did the harder it got to breath and do everyday things. I went from comfortably walking a twenty minute mile to barely able to get to the end of my driveway. I would get dizzy when standing up and find it difficult to breathe.
The look on the technicians face clued me in that something was off
It felt like a bucket of ice water was being dumped over my head. I was diagnosed with asthmatic bronchitis. But the inhalers really didn’t work. I didn’t want to go to the doctor. Why would I pay someone to tell me I was a very overweight woman who needed to lose weight and exercise?
It got to the point where I would have terrible coughing spells, but nothing would cough up. A doctor decided to X-ray my chest and found a shadow in my right lung. This led to an ECHO. And the look on the technicians face clued me in that something was off. I was referred to a cardiologist. She performed more tests and told me I had an enlarged pulmonary artery and needed left/right heart cath.
At which point I made the mistake of looking online to see what that meant.
The cath showed the right side of my heart was enlarged and I had some tricuspid valve regurgitation. But they couldn’t find out why, so she referred me to Dr. Stuart Rich at University Chicago Hospital. I had to get the rest of the tests to confirm the diagnosis of Idiopathic Pulmonary Hypertension. VQ, PFT, CAT scans, etc.
I continued my treatments with Dr. Marci Gomberg at UCH. I started with IV Remodulin administered by central line catheter, and the Hickman. Revatio was added and then changed to Adcirca. I took warfarin for a few years as well as Aldactone, Inderal, Lasix, potasssium and my numbers improved, from 79 to 40. Last fall I started Letairis, and Uptravi. I successfully discontinued my IV Remodulin. So now I take all oral meds. I started Pulmonary Rehab last spring and continue. With improved treatments, I have lost a lot of weight and am much more active with more stamina.
I use oxygen at night and during exercise, and have gone on a Mediterranean Cruise, a Caribbean cruise and spent a week in Dublin, Ireland for vacations.
I attend the Elmhurst a Support Group and recently started leading the Chicago Southside Support Group. My daughter Leah has attended two Biennial Conferences with me, Indianapolis and Dallas. We have participated in the O2Glow walks in Palatine and other fund raising events like Chicago Trivia Night.
I believe that the more we can share our PH stories, the more family, friends and health providers can become familiar with this RARE INCURABLE PROGRESSIVE disease which leads to awareness and earlier diagnosis and treatment.
There is SO MUCH you can get help with through involvement with PHAssociation. I am grateful for all those who have lived with this disease and led the way for better diagnosis, research, development of treatments and emotional support.