I'm 47 years old, I have 8 beautiful children and a very supportive, wonderful husband. I was diagnosed almost 8 years ago with obstructive airway disease caused by allergies. I was treated for almost 7 years with increasingly stronger medications.

In the summer of 1995 I was so bad my husband took me to the hospital in the middle of the night. My family doctor sent me to a pulmonologists, who sent me to a cardiologists, who sent me back to the pulmonologists. This went on for about 2 months. I was getting worse and getting mad. I finally got in the face of my cardiologists and explained exactly how nonfunctioning my life had become. He then did a heart catherization and found extremely high pulmonary hypertention.

He apologized profusely and sent me back to the pulmonologists. He explained what primary pulmonary hypertention was and set up an appointment with some doctors at the University of Maryland. That was in October, I had to wait until the end of January before they could fit me in. When I did get in I sat for less than 5 minutes and talked to this world reknowned doctor who told me I did not have PPH. I cried and questioned his knowledge. I had searched and found everything I could get my hands on about PPH. I didn't like it but I did understand it and I was willing to deal with it, and now this guy is telling me I haven't got it.

He really was wonderful (after I calmed down). He called a rheumatologist over to talk to me and diagnose me. It took her less than 30 seconds to tell me I had scleraderma, CREST, and my breathing problems were due to pulmonary hypertension caused by systemic sclerosis in the lungs. I had no clue what she was talking about. I came home and the drug treatment that the doctors from Maryland had recommended were started by my pulmonologist and a rheumatologist.

That was February of 1996. I have been on the treatments for a year now. My pulmonary pressure is half of what it was a year ago. I can do most household chores, shop (sometimes with the electric carts provided by the stores), anyone looking at me would not know what I have and am going through. No one in the general public has a clue what the red dots all over my face are (telangentosis). I couldn't dress myself a year ago, I was in a wheel chair, I couldn't carry on a simple conversation, forget about singing, I just didn't have enough breath.

When I look back just one year it's unbelievable. My lungs were so bad the doctors treated me very aggressively. I am on cardizem, prednisone, plaquenil, coumadin, os-cal, l-argennine and pepcid. Of course I did all my homework and read that bioflavonoid, B-6, zinc, and vitamin A. could help, so I take these daily as well. My rheumatologist tried his hardest to get me to eat more fish, I just hate fish but I did compromise and I do take salmon oil capsules daily as well.

I have chemotherapy (cytoxan) once a month. My improvement is astonishing, my doctors are submitting a report to the National Institute of Health for a grant to study other pulmonary hypertention patients with scleraderma, using this same combination of drugs. I hope they get it, it has helped me so very much.

The game plan for the future: continue on the same medications and chemo, testing every six months my pulmonary lung function. As long as it shows at least a 10% improvement over the last PLF tests things will stay the same. If the improvement is less than 10% they will back off the chemo to every 3 months and make any necessary adjustments to the other medications. I know I've gone long with this tale. I hope it helps someone.

I can be reached at: PburgFred@AOL.com

After Feb 28, 1997, reach me at:
Dorothy Sneider
2001 Coe Ct.
Perrysburg, Oh 43551

Back to CREST/limited page.

Copyright © 1997 Dorothy Sneider