I was never "normal". I remember as a child, I would lose my breath before the other children. As a teen, I would get tired and couldn't be athletic. At 20 I had emergency open heart surgery to repair a hole in my heart. The Dr told me I would feel so much better. I did, for a short time. It all started again.... short of breath, flushing and getting tired easily. I figured it was because I was over weight and I smoked. That's what everyone thought.
At age 27, came the diagnosis, Pulmonary Hypertension. I was told life expectancy was around 2 years. I was scared and confused. No one I talked to had ever heard of it. I knew immediately I would need a specialist. I did research on the internet, made an appointment, and quit smoking. I started oral therapy and I felt a bit better though I was very depressed. I'm the one in my family that thinks I have to take care of everyone else. I let the depression win and I stopped my treatments. I could not afford the copays for the medicines. I didn't tell anyone this or I would have quickly learned of the help that's out there.
I continued to get worse. I reached out to another specialist. I was told five years earlier that I wouldn't live more than two years. I had proved them wrong. How much better could I have been if I would have kept up my treatments? That's when I met Dr Frank. He did not sugar coat anything. I was quickly scheduled to have a permanent IV in my chest to receive meds 24/7. I wasn't really given any options. I didn't argue. A month later I walked into his office without the assistance of a wheelchair! He was very impressed and confessed to me that he had thought I had waited too long and wouldn't make it to my follow up. I proved him wrong too!
Maybe I can beat this! I have now been on treatment for almost five years and I am doing great! I went back to work part time. I recently started walking a mile a day. I replaced old hobbies with new ones that doesn't require much exertion. I like canning, knitting and crocheting. I have good days and bad days. But as long as I'm still having good days I will continue to PHight! I have a new attitude about this disease. There is no expiration date stamped on my body! I firmly believe your attitude can break or make you in this disease. I allow myself down days. It's normal! I have days when I can't do the things I want to do. It's normal! All of this is MY NORMAL. We are all different but I try to stay as positive as I can. I absolutely love talking to other PH patients. I try to keep them positive and strong as well. I could have given in ten years ago. I think I was close to that. I'm glad I started phighting. I now have a 2 year old niece that is my heart! I thank god that my meds are helping. My pressures have lowered tremendously! I have joined many support groups and love being an inspiration to the newbies as a long time survivor! Ten years and going strong!!
Editors note: I saw that Michelle works as an optical technician, which sounds like a very busy job! I asked her a bit about her position and she says she works about 20 hours a week and that she loves what she does.
The PHight or Flight Project would like to thank Michelle for sharing her incredible PH journey for PHighter Friday!
* If you have an inspirational PH journey that you would like to share to help provide hope to those who are newly diagnosed, please contact me at firstname.lastname@example.org. More information about sharing your PH journey for a #PHighterFriday can be found under the Share Your PH Journey/Contact tab.