I spent quite a few years in and out of hospitals being treated for every respiratory illness that you can imagine before finally being diagnosed with primary pulmonary hypertension.
My story isn't unlike many others here. I am a very happily married woman. I have a husband whom I adore and who adores me. We have three children, two boys and a girl. Brennan is 13, Justin is 9, and Rebecca is 9 also. I wouldn't trade my family for the world. Even through my roughest times when I didn't have any energy left to get out of bed, they all just came to me and never blamed me for it. I have the most amazing parents and a best friend, Amy that I have had since I was 5 years old that supports me in ways that I will never be able to repay.
I have had severe asthma since childhood and chronic bronchitis also. When I first started to get symptoms of PH, I went to my doctor and explained that I was getting more and more short of breathe and having a hard time even walking to the mailbox. He, my pulmonary doc, of course suggested adding more asthma medications and repeating the usual pulmonary tests. We did this and it didn’t help. As it got worse, I was placed on antibiotics for 50 days straight, including some IV antibiotics. I started passing out frequently. I was sent to UPMC medical center where I spent 2 months straight for testing. They still did not test me for PH. I finally begged them to send me home. I was basically told that it could just be asthma and anxiety.
Anyone would be anxious after being treated like a lab rat for almost 3 years with no answers. About a month later, I came down with bronchitis again and went to my primary care doctor. While I was there, he asked me to meet a new PH specialist in the area. I told him I would meet him, but I was tired mentally and in body and was not ready to be a lab rat again. This wonderful man walked into my room at the office 3 minutes later and introduced himself and asked if he could listed to my chest and ask a few questions. I agreed just to be polite. He did his five minute exam and turned to me and said " I believe that after looking at the book of a file that you have and seeing you, you have pulmonary hypertension".
I think I just laughed at him. I told him I would give him 1 month to prove it. Well, 1 month later and a stress echo and RHC, he was right and I actually hugged him. I was just relieved to finally know what was wrong with me. After being told for years that my only problem was depression and anxiety, you start to believe that you are crazy. Part of me wanted to drive to Pittsburgh and scream at all of the "EXPERTS" and tell them "see, I am not crazy, you idiots." I was actually enraged at them for so long. Then I learned that this disease is rare and they just DIDN'T know about it. I have learned to forgive them now. I have been taking Revatio 20 mg 3 times a day and CCB's.
At first I felt so much better, but now I have been feeling worse than I did before. I guess that is my cue to call that wonderful doctor to let him know. I have written many letters to my senators to help get support for the PH bill and I have gotten letters of support from them. I continue to have faith that they will find a cure for this illness. I only hope that I can help play my part in it. My family continues to be my wonderful support system and I love them so much for it.