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Patient story

Jill Shaw

Hello, My name is Jill. I am a twenty eight year-old wife and mother of two young girls. My story started about two and a half years ago, right before I became pregnant with my second daughter. We were adding an upstairs onto our home because we were planning on having more children. My first daughter was about 18 months old at the time. I still hadn't lost all of the weight I had gained while carrying her, but I figured that since we were going to have another baby soon that I would just lose it one time instead of two! It was the day that we put the stairs in and I climbed them for the first time that I was out of breath by the time I got to the top. I laughed it off as being out of shape.

I had just gone off the pill in an effort to have another baby. I got pregnant the first month that we tried. That put the pressure on us to get the upstairs finished within the next nine months. My husband, my father-in-law, and I undertook this project by ourselves for the most part. All day while my husband was at work I would care for our older daughter and work on the house when I could. We were all exhausted, and on top of that I was pregnant. The shortness of breath got worse, and when I went for my first prenatal check-up I mentioned this to my doctor. He said, "of course you are out of breath, you are pregnant!" I agreed. I continued my pregnancy with no problems. We finished the house in the nick of time as well!

After giving birth to my second daughter I continued to be exhausted and out of breath for the next several months. But then again, I was exhausted after my first daughter too, and I was now taking care of two babies. At my six week post-pregnancy check-up I told my doctor that I was still short of breath and exhausted. Again, he chalked it up to being a new mom and not sleeping well.

I thought that I would take up jogging to get myself back into shape...that lasted for about three and a half minutes! I started jogging down our road and was so embarrassed because I had to quit about a block into it. That day is when I started hiding how short of breath I became doing such small things, like carrying my girls or walking up the stairs. I was so ashamed.

My daughter didn't end up sleeping through the night until she was six months old. When she was about four months old he gave me a prescription for Ambien and told me to go downstairs three nights a week for some much needed rest, and to let my husband take care of the baby. That wasn't easy seeing as how I was breastfeeding! But that is what I did. It did not help at all. After she turned six months old and was sleeping through the night, I went back to my primary tor and said, "listen, something is wrong with me. Maybe I am just that out of shape, but let's do some tests and find out for sure."

My doctor really listened to me this time and really listened to my heart. He thought he heard a faint S4 gallop and sent me to have an EKG and an echo done. Ironically, between the day that I had these tests done and the day that I got the results, I had watch one of the baby birth stories that all of us new moms love so much. The woman on the show had PH. They talked about her symptoms and how much danger she was in when giving birth. When my husband came home from work I told him that I thought that I had this condition. I got online that night and read about it. I prayed to God that I was wrong. A couple days later I called the doctor to get my results. The nurse obviously did not know what PH was because she said, "well, the bottom of the chart says Pulmonary Hypertension." My knees buckled. I had a follow up appointment later that week, so for the next couple of days I read all that I could find about PH on the internet. It was grim to say the least.

Here I was, with a two year-old and a six month-old, thinking that I had two to five years left. My husband and I met with my primary doctor and he basically said that this was out of his expertise. So he sent me to a local pulmonologist within the week. What a piece of work this guy was! He looked into my eyes and told me that I would not live to see my girls go to grade school, and that my only hope of living past two years would be a lung transplant. He sent me to the Cleveland Clinic and told me that I would immediately be put on the transplant list. Here I was—for the most part a healthy young woman—just a little short of breath and tired, and he is telling me that I am as good as dead. I still don't understand why he didn't tell me that he knew little about PH, and why he just didn’t send me to someone else. I will never be able to forget those words. My husband and I left his office and just sat in the car and bawled our eyes out. My father-in-law was watching our girls, and it took me forever to be able to stop crying enough to go get them.

I had gotten my diagnosis the day before Thanksgiving 2006, and finally got into the Cleveland Clinic January 15th, 2007. In between November and January I spend a lot of time planning for my death. I started writing to my daughters, getting my will and life insurance papers in order, and telling my husband about my last wishes. I will never forget the couple weeks after my diagnosis before I went to Cleveland when I saw a CD at Target that I had been wanting to buy. I wouldn't buy it because I thought, "Why waste the money on a CD when I am going to die soon?"

I was at the Cleveland Clinic for five days. I was put through all of the standard tests, pulmonary function, echo, EKG, blood work, right heart catheterization, etc. We had taken our girls with because we didn't know how long we would be there, and we had never left them overnight before. My dad flew in from Nevada to help us out. It was confirmed that I had severe PH—class II-III—and I also had rheumatoid arthritis. My pressures were in the high 80s. We stayed in a hotel, and between the stress of all this and the kids not sleeping I was extra exhausted. I ended up fainting on the second-to-last morning that we were there. I still don't think it was from the PH. I just think that it was exhaustion.

My doctors immediately recommended that I go on IV Flolan, and they started talking about all that it entails. We were just so overwhelmed. I didn't even really feel "sick." How can I go from normal to being on an IV everyday all day for the rest of my life? Would I have a life if I chose that? I asked what my other options were. They told me about Revatio. I opted for that. My feeling was that I would rather have a year of quality life than 3 years of feeling bad.

It turns out that I made a good decision. A year later now, my PH doctor is astounded with how much better I am doing. My minute walk test improves every time I go to Cleveland, my BNP is down to 15 (it was 244 last year), and my echo shows improvement in every area of my heart except my right ventricle. My class has gone from II-III to I. In an effort to normalize my right ventricle my doc just increased my Revatio dosage from 20 mg three times a day to 40 mg three times a day. I haven’t been short of breath at all in the last six weeks of increased dosage! What a miracle.

Through the last year, my husband, my wonderful girls, and I have had an outpouring of prayer from friends, family and complete strangers. We are eternally grateful. I believe that my marriage is stronger now and my relationship with my girls is better as well. My three year-old knows that I am sick, and that a lot of days I am tired, but for the most part we live a normal life.

It is so strange, this disease. People look at me and could never tell that something is wrong, but I am indeed living with this very serious and rare disease. I still cry nearly every day because of this. I have a lot of sadness and anger that I am really trying to deal with. Life just isn't fair sometimes. I still wonder if I will get to see my girls grow up. I think I will. I can't imagine getting out of bed every day if I didn't think I would.

 

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The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.