OUR JOURNEYS

Patient story

Victoria Fink

I was diagnosed with PPH in May of 2004. At the time I was working as a nurse’s aide in a nursing home. I started to get what felt like heart burn a lot and my arm would start to ache. One evening this got quite bad so my shift nurse checked me out and said everything sounded good but she still wanted me to go to the hospital. I figured okay no biggie because when I was pregnant with my daughter in 2002 my mother took me to the ER because I thought I was having a heart attack and they said I had acid reflux so I figured this was the same thing. Well they did an EKG and said it was irregular I was spending the night. The next morning I got shipped to a better hospital to do more tests. They did every test under the sun and when they did the echo on my heart they came and told me I had PH. So then it was more testing to see what caused it. Eventually after a week in the hospital I was told I have idiopathic pulmonary hypertension and the pulmonologists said more or less to go home and get things in order.

My cardiologists told me he had little experience with this and sent me to Dr. S. Murali. He was such a godsend because he explained things and told me yes it is serious but it is not the death sentence it used to be. I also met Carrie Melegari who is the nurse I see when I go to my appts. She is more like my best friend than my nurse she has helped me through so much and still does. I owe a lot to them. Dr. Murali started me on Tracleer and it helped a lot. I never thought I was sick until the Tracleer made me feel better. Since then I have been put on Maxide, Potassium, Metoprolol, Warfarin, Prilosec, and Revatio.

I feel good most of the time but I miss what I can't do. I have learned to look at things differently though. I miss the horse I gave up because I couldn't care for him but at least I am still here to ride with my sister. I can't take care of my big kids (elderly) but I can take care of my son and daughter and see them grow up, God willing. I have also realized age is not a curse but a blessing. I am going to turn 30 in Sept. and I can't wait. Last but not least YOU HAVE TO BE POSITIVE!! My family has had a difficult time dealing but they let me have hope that things will be okay and I will live a long happy life. Every night I pray that God will send us a cure and I know he will answer but until then God bless and don't ever give up.

 

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NORD

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.