I was diagnosed in November of 1991. I was recently (six months) divorced with a three year-old son. I worked as a nurse in a doctor’s office. I had been having problems with my heart racing ever since the birth of my son and I had some shortness of breath. The doctor and I thought that it was because of the stress of my abusive marriage and the stress of my divorce.

One day, I passed out at work, but everyone laughed it off because I had just drawn blood on my dad. But as the day progressed I couldn't make it from one end of the hall to the other end. So, one of the doctors scheduled an Echo to look for mitral valve prolaspe. Well, of course, that wasn’t the problem. The next afternoon I went to see a cardiologist. I had gone to a cardiologist a year before after being hospitalized with a strange virus. It was something like mono, but we really don't know what it was. I then developed pneumonia and then something like asthma. So I saw a local pulmonologist who did a chest X-Ray and gave me some inhalers. He saw something on my CXR that he couldn’t identify, so he took it to the radiologist at the local hospital, but he said that it was normal. I learned a year later that it was a severely enlarged pulmonary artery.

A year later, I was back at the cardiologist. He looked at the CXR and put me on a treadmill. I only lasted three minutes and my heart rate was over 200bpm. He told me he wanted to do an RHC the next morning, so my mom and I went to the hospital. After the catheterization my mom acted strange. My preacher was there, and he acted strange too, but no one would tell me anything. I should have known something was going on because my baby brother brought me a brush, perfume, chocolates, and books for my night in the hospital after the catheterization. My best friend brought me what I still call my “sick gown”.

The next morning I went through some more tests and then the doctor sat on the side of my bed and told me, "you have primary pulmonary hypertension, and you will not live two years without a heart/lung transplant.” I laughed and pulled the covers over my head, and then I heard my mom crying. Whoooooo. You think the strangest things at a time like this. I sat up and said to him, “you mean I can't have any more children?” You see, even though I was divorced, I still wanted more than one child.

The doctor got me an appointment at the University of Alabama Birmingham to be evaluated for the transplant. I went to Birmingham with my mom and my son in tow. The hospital was great. They arranged daycare for my son and a room for my mom. We went by the daycare to see where it was so my mom could take Nathan the next morning, and on the door of the daycare they had a sign that said we have chickenpox. Oh well. This was not my year.

The good news was that after a week of literally being poked, prodded, and catheterized, I didn't need the transplant right away after all because I was responding to calcium channel blockers. My doctor stayed on top of my pressures by doing RHCs every six weeks for years. I did great on CCBs. Lasix was later added, but that wouldn't work so one doctor tried Demedex. That worked, and then Coumadin was added, and then potassium because of the Demedex. I did great for a long time.

Let me backtrack again. In 1992 I met a wonderful man who knew about my PPH and my limited prognosis, and he fell in love with me and my son. We fell in love with him. We were married in June 1993. He does more than just take care of me. He's amazing.

I had a collapsed lung in 1994 and started going downhill in about 1995. We changed CCB brands, and that worked for awhile. Several years later I was still searching for the perfect PH specialist and I find one in New Orleans. We tried Viagra before it was even being tested, but I couldn't handle it. But the CCBs started working again. When my doctor moved to Houston, his office referred me to another doctor in New Orleans, and I still use him. I finally had a doctor that listens.

I got worse again and he tried Sub-Q Remodulin. I think all of you that are able to use that are the toughest people in the world. My stomach actually had big holes in it from the medication. I developed cellulitis, so thank goodness we stopped that. I went on Tracleer the day it came out on the market and it worked for five years with my other medications. Last spring I got a cold—and I never get colds—but this one went to my chest and I ended up in the hospital; I nearly got pneumonia. That was the beginning of a spiraling downhill time for me. We were ready to try Flolan, but I begged my doctor to try Ventavis again. I had been on it the year before, but didn't do well on it. This time though, Letaris was coming out and I wanted to hold out for it. Well, the Letaris, Ventavis and Norvasc combination seems to be my cocktail of the moment.

I'm in my 17th year and I plan on being here for 17 more, then 17 more. My son is in his second year of college and my husband is still the love of my live. I get tired a lot, but I love life. I want to be around when we finally find a cure for this dreadful disease.

Now, some lighter stuff. I have been interviewed by the local CBS station a couple of times to talk about PPH. I have been in a magazine. The magazine was a faith based publication and I would not be able to handle this at all if it weren't for my Lord and my church. Recently, another patient and I started a support group in Mobile. I keep telling them I'm going to separate off one day and start a Baldwin Co. group.

I hope this will help someone. Don't give up. Keep looking for the doctor that you feel good with.