Patient story

Heather Wilson

When I was first diagnosed with Pulmonary Hypertension in the spring of 2006, I was so scared because I was so young and I didn't know what to do. I was a teenager and only 1 year past high school, and this is not what I had in mind in terms of what the future held for me.

The doctor that diagnosed me was Dr. Rizzo and he was running a lot of tests on me to see how high the pressure was in my lungs, so he did a right heart cath and found out my pressures were in the fifties. He didn't know what to do so he said he wanted me to have a heart and lung transplant. He was finding a good hospital to the transplant. When we got home from the doctors, I got a letter from John Hopkins saying that I wasn't a candidate for the transplant. When I was reading through the letter we got a phone call from the hospital where there is a Dr. that is a PH specialist who wanted to give me this medication called Remodulin. It was going to be a Hickman catheter that the Remodulin was going to go through and when I go home there will be a pump that will hold the Remodulin. Then the hospital called again saying they had a room for me. My mom took me to the hospital and went to the 6d unit to meet the Dr. who would be taking over my case. His name is Dr. O'brien and he was from the Temple Lung Center. He became a PH specialist in Delaware. The first night I was there he put me on oxygen and I had to sleep with a c-pap.

The next couple of days there he spent telling me about this medication Remodulin and how it is going to be going through a catheter. Then I got the catheter in place. The nurse from Accredo came in to teach me how to mix the Remodulin. It took 2 days to learn and after those 2 days I was allowed to leave the hospital. When I got home I had to clean out a spot for where I'm going to keep my supplies. So my mom had gotten 2 plastic cabinets from wal-mart. When I had to change the Remodulin I had to change pumps you were to do this every 48hrs. I had a couple of problems with the catheters; they either got infections or came out.

In January of 2007 I got blood clot in my right shoulder and they had to take the line out and Dr. O'Brien started me on the sub-cutaneous pump for the Remodulin. When I learned that pump it took me just a day to learn. Dr. O'Brien told me I would have to stay in the hospital for the weekend and that I could go home on Monday. I had no problems with this pump over the weekend so I was able to go home on Monday. I had no problems when I got home or even up to now.

When my family heard that I got pulmonary hypertension they were still wondering how I got it because nobody in my family had nothing wrong with their lungs. At times it could be difficult because of the heat and then the cold. I'm trying to educate myself with pulmonary hypertension and I'm learning everyday about pulmonary hypertension. In March of 2007 Delaware had their first support group for pulmonary hypertension. When I was first diagnosed with pulmonary hypertension I felt like I was alone and there was nobody I could relate to and now I can with the help of the support group and meeting people off the computer with pulmonary hypertension.

I didn't know when I got pulmonary hypertension there were all of this medications that you have to take. I take coumadin, oxygen, sleep on a c-pap at night, subq Remodulin, mag-oxide, potassium, and lasix. If all these medications are going to keep me alive then I'm going to take them. I also take medications for depression. My depression got worse when I got PH. Each day is a new day and I don't take life for granted. I hope anyone with Pulmonary Hypertension will share their story. I know my story probably doesn't make sense but at least I wrote it.

Thank you for reading and you are not alone.

Heather from Delaware


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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.