Below is Joe's Journey. He shared his Journey as part of the Journeys Luncheon during PHA's 8th International PH Conference and Scientific Sessions in June 2008.
My name is Joe Barnes. I come from western Massachusetts about a half hour from New York. I have two kids, one of whom was born after my PH journey began. I was diagnosed back in November 2001 after the typical misdiagnoses that most PHers get. That lasted for about three to four years. The doctors back then started treating me for asthma and pulmonary emboli until I complained I couldn’t lie down flat anymore; I couldn’t even walk 20 feet without passing out.
So finally the pulmonologist who was working on me at the time re-looked at my case and then said, “You have PH, and I’m going to send you down to Boston for this nasty surgery to get the lungs taken out, cleaned and put back.” So, I went down, and that’s the day I met Dr. Waxman because the surgeon I went to see called him down and said, “You’ve got to break the news to him that he’s got the longer haul instead of the short run.” And he, at the time not totally realizing everything, looked at both of us like we were nuts because my wife and I were both extremely happy that we didn’t have to go through this hairy operation and we got to go home.
But then when we went home and read up on the Internet, that’s when we hit rock bottom. ... But even though it was tough, sunshine always came back.
... Over the past eight years, I’ve gotten to know everyone on Ellison 10 — it’s the cardiac floor, where they stick people who are put on Flolan®, and they’re like part of my family as well. They know my life, my family and almost everything that’s happened to me since I first met them. I get greeted like I’m a dear friend every time I get hospitalized. They greet me with more hugs and kisses than I get back home from my wife. Kind of makes me feel like I’m cheating every time I get hospitalized.
I’ve also gotten to know a couple of great research nurses. ... I was also on the Flolan®/Viagra® study when I was meeting them. Just being on a study was one heck of an uplifting experience on its own between all the jokes whenever you tell anybody that you take three Viagra® a day every day, so that’s always one good thing after another.
I’ve developed this strong relationship with everybody, and even if I bump into them on the outside of the hospital, they still give me a hug and ask me how I’m doing and how everything’s going. I wouldn’t give up my relationship with everyone at Mass General for anything in the world.
Through the journey I’ve had with PH, I feel that I’ve had a lot more to deal with than any person should have to, but I just keep pushing. ...
At one point back home, the doctor accidentally bolused me with an extra three-quarters CCs of Flolan®. He turned white as a ghost. I turned red, hit the sheets, and my blood pressure dropped, and he’s sitting there shaking. The nurse ran out and grabbed a chair for him — she wasn’t worried about me. And he said, “I thought I killed you.” I just told him that sooner or later I figured somebody was going to do it, so at least he got it over with so I don’t have to worry anymore.
I’m very prone to infections because I have a high white count all the time and my lines would always get infected. The first line I had lasted about four years, and I’ve been through about nine since. So I told them enough was enough; I didn’t want another line. I didn’t want to have anything to do with Flolan® anymore since the side effects had gotten so bad, and they couldn’t lower my Flolan® dose down anymore since my breathing had gotten worse. So then Dr. Waxman and Arlene talked me into Remodulin® and made it sound like a new car coming. So I agreed to it. I said, “Go ahead, put the line in. Let’s go.” And within two days, my breathing was back the way it was before I ever got sick. I still couldn’t do everything I wanted to do. I couldn’t walk up a whole bunch of stairs at a time or walk uphill. I thought my days of being able to walk over a mile, do my own yard work, go swimming or even ride a bike with my kids were long gone, but now I can do it all again.
Even though the disease can be a real downer in life, it also brings a lot of positives with it that are incredible. I always say that every day I can wake up and do something I couldn’t do the day before, it’s another blessing in my life. I don’t look at my life with remorse or sadness since that doesn’t get you anywhere, but rather with humor and laughter since, in my eyes, they’re the best two medicines in the world. I feel that my caregivers, especially from the medical end, and my family and friends have been the greatest blessings in my life. And I wouldn’t be here if it weren’t for them, so I thank them all from the bottom of my heart since they are the most important part of anyone’s PH journey. And I wouldn’t be here or be able to do what I can again.