Patient story

Jhenna Pacelli

Jhenna Pacelli and fiance Mike MacDonoughMy name is Jhenna, I am 22 years old and I would love to share my journey with you! In October 2009, I started noticing that I was having difficulty getting around. I was out of breath very easily, and I had this miserable cough that wouldn't go away. I went to an urgent care facility in November of 2009 and was told that I had bronchitis and given antibiotics. I also noticed that day my pulse rate was 115 and my blood pressure was high, which is very unusual for me. After about 2 weeks I returned to the same facility because I was not feeling any better. They told me that I didn't have bronchitis; it was just a cold and I should take cold medicine for a week. I also told my doctor that I was having difficulty breathing and I noticed my blood pressure and pulse rate were still off. The doctor didn't seem concerned, so I continued my normal routine, which was working 40+ hours a week lifting hundreds of pounds of dog and cat food every week. (I was the manager of a pet store)

A week before Christmas, I felt so much worse. I couldn't even climb up the stairs without feeling like I was going to pass out, so I decided to try a different urgent care facility. They took my blood pressure that night and, sure enough, my blood pressure and pulse rate were still unusually high. The doctor also ordered a chest x-ray because I still had that bad cough However, she didn't seem too concerned because she gave me more antibiotics and told me she would call me with my chest x-ray results.

Three weeks went by and I had not heard anything from the doctor, so I decided to just give up--I must just be out of shape. My mom did not feel the same way and she decided to call herself to get my results. At first, the nurse told us that the chest x-ray was normal and then ten minutes later I get a phone call from the doctor telling me my heart looked enlarged that I should go to a primary physician to get a referral to see a cardiologist because of my high blood pressure. I couldn't believe what I was hearing, I had a possibly enlarged heart and this doctor waited three weeks to tell me.

I then went to my primary care doctor in January 2010 and she referred me to a cardiologist who performed an echo. The echo showed that I have severe Idiopathic Pulmonary Hypertension (IPAH) and I needed to go for a right heart catheterization as soon as possible. I couldn't believe what my doctor was telling me, I was so scared, I actually started crying. He then suggested that I go see a pulmonary specialist. On March 16, 2010, my pulmonary specialist did a left and right heart catheterization to make sure I had no other complications. The results were devastating and confirmed that I had severe IPAH.

My pulmonary specialist told me that he usually admits people into the hospital with the results I had, but for some reason I was a lot stronger for someone with these pressures. He told me my best treatment option would be either IV Remodulin or Sub-Q Remodulin and he was going to also put me on Adcirca, Coumadin, and Digoxin. I chose the Sub-Q Remodulin because the risk of infection was a lot less and it seemed to be more convenient. I definitely had my ups and down with the Remodulin, but I am happy to report today that I feel great! I can now climb up stairs and I don't feel like I am going to pass out anymore. The Adcirca did not work out for me, so I was changed to Letaris, which doesn’t have the same side effects for me.

I am going for a consultation for a lung transplant because my specialist wants to make sure I have back up options just in case my PH worsens. I am very lucky to have a supportive family and fiancé. I don't know how I would have gotten through this without them. I love them with all my heart! I hope to help raise as much PH awareness as I can, to make sure no person has to go through what I went through!


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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.