Susie's Story

My journey first began when I was 29 years old. I was always active and I began to get short of breath after a little exertion. I let it go, figuring I must be out of shape. I let it go until I was dizzy and my left arm was going numb. I went to my doctor, who did test after test to try to figure out what was going wrong. I was sent to a heart specialist, where I only saw a nurse. I was sent on my way, and the nurse told me that I was just out of shape and that I needed to start an exercise regimen. Embarrassed by this, I didn’t go to the doctor again for several months.
I finally went back again with the same symptoms. I was tested again. Again, nothing. I was put on high blood pressure medication and I was sent home. It would be another six months before I went in again. But now, symptoms were worse, and now my left arm was going numb as well. My doctor did more tests. This time a chest x-ray was done, and an Echo and CT scan were performed.
One month later my life changed. My doctor told me that my right ventricle was enlarged. I did not think that it was as serious as it was until I made the mistake to go on the internet and search. I ended up on some old sites with old news and I was scared to death. I literally pulled some of my hair out and was crying so badly. Word of advice: Do not go to unreliable or old internet sites, because they will scare the heck out of you!
Later, I went to the Mayo Clinic to see the specialist, and I was immediately hospitalized because they thought that I had a small blood clot in my lungs. I underwent two cardiac catheterizations and the pressure in my heart was 110. I probably would not have lasted going undiagnosed much longer. I was counseled on my condition extensively at St. Mary’s Hospital; what a great place, so caring. I returned home to Michigan, scared to be away from the safety zone I felt that around me when I was at Mayo.
I had gone into a depression for quite some time, I was so scared to leave my kids and husband without me. I signed up for the conference in 2006, but I couldn’t bring myself to go. After I got over that depression I decided to make sure I would know all that there is to know about this disease, no matter how painful it may be. I researched the newest medication, the best doctors, nutrition, exercise; anything I could find. I am now in control of my health.
I decided to do research on a doctor at the University of Michigan. Her name is Vallerie McLaughlin. I made the decision to have her monitor my condition. It was the best thing I’ve ever done. She is the best! My mindset has changed since meeting her. She makes me feel as though I have control of my life but she is right beside me. I am not just a number to her. I was on Ventavis when I went to see her, and she increased my high blood pressure medication to 720 mg a day, she started me on Revatio, and, recently, on Tracleer.
Now, five years after my first symptoms, I feel great. I ride a stationary bike four and a half miles, four times a week. A few years back I could not walk through my yard without having to sit down to catch my breath. I do ask questions every time I go to the doctor now, and I am not afraid to ask about anything that can help me. This February will be my two year mark. That was when I was diagnosed, at least. My doctor says I can walk farther than a healthy woman my age, and that makes me feel great! I am still nervous when I go to my doctor, but at least I am informed now, and I am armed with more knowledge.
I believe that there is hope for all of us. We must not forget about everyone in our community and beyond who are dedicating their lives to finding a cure for this terrible disease. I do not know how long I will be able to feel this good, so I thank God for every day I wake up alive. I wrote my first letter to the editor last night and I plan to submit it as soon as I proofread it. To all of us with PH: May God protect us and guide us in our time of need. And a big thank you to all of the people behind the scenes. God bless you all. My mom and dad always said I was one in a million!

Susie