|With the Terezin quartet at The New School in New York City|
I was diagnosed with a stage IV case of IPAH when I was 20. I was transplanted the first time at 26 and then again two years later. Over those years, it became clear that "my" mindset and can do attitude wasn't mine alone. It belonged to many of the people I met who had Pulmonary Hypertension. But once a diagnosis comes, how do we cope? How do we move forward with a life despite the seeming impossibility of our situation? How did I move forward?
The value of worthy distractions
|A performance at a TED conderence at the |
Hotel Del Coronado on Coronado Island, CA
My physical, spiritual and emotional well-being were largely grounded in a determination to focus on the can instead of the can't. The body is amazing. It learns to cope -- to pace itself -- but I think the only way that happens is if we embrace the possibilities we have as opposed to lamenting over those we don't. Despite the clumsiness of my pump (in my day, it was really big), the shortness of breath, synchope (sp??) and complicated medications, I learned how to really live with PH. I couldn't run a marathon, but I could sing. I wasn't going to be a great mountain climber, but I could paint. I couldn't eat salt, but good fruit is the best thing in the world anyway and it doesn't need salt. I couldn't climb to the top of the Washington Monument, but I could get another graduate degree. I couldn't play intermural sports but I could run an after school music program for kids in Baltimore. I learned my limits and how to live within them. Eventually, I lived in Italy, Hungary, Israel and in China all while I had PH. I performed in major theaters around the world. I met my future husband and fell in love. By focusing on what was possible, my emotional and spiritual health was excellent which in turn, helped me professionally and my overall physical well-being.
I Never Wanted A Transplant
|A performance in the US Capitol Rotunda|
With my lift team at the Cleveland Clinic
Transplant is undeniably amazing. It's also a challenge. First, let's talk about amazing. I never could run. Seriously. From the time I was a little girl, it just wasn't something I was able to do. But the other night, I ran all of the way from our flat to the Lincoln Memorial in Washington DC with my husband. Its something that until I did it, was unimaginable. I never feel like I'm going to faint anymore. This is also a huge deal since much of my life was spent trying to figure out whether an activity would land me unconscious. I can eat salt and people finally really enjoy my cooking -- something that was a challenge when I couldn't add salt to anything. I don't have the pump anymore. I'm married (though I suspect my husband and I would have married regardless of whether I received a transplant since we began dating when I had PH). We just took an amazing trip to Patagonia where I climbed some of the most beautiful mountains in the world. Life is good. The challenge is, this is my last shot. When I had PH, if things went south there was always another medication they could add to my regimen or if all else failed, transplant. There is no safety net for transplant. I was crazy fortunate and my insurers and hospital let me go on the list for another transplant and I got it, but that doesn't always happen. A first transplant is hard enough to get. A second transplant is nearly impossible. The word rejection is super apt
|Relearning how to climb stairs after the transplant|
because when it happens, it feels like the organs are rejecting you, personally. Its like the old, more vengeful version of God right inside of you all of the time. It knows whether I took my meds on time, whether I ate shellfish, whether I crossed my legs, whether I'm exercising, whether I am doing everything I'm supposed to do. When I rejected, I experienced guilt in a way that I never had before. It reminded me of when I didn't get into the college I wanted to go to, steroids. It was devastating and I felt like I was making my donor die all over again. The process of watching my body break down so quickly didn't give me time to grow used to my condition. It was hard and fast and
cruel. With PH, right before my 1st transplant, I didn't want one. All I wanted was to move to Canada to be part of one of Duncan Stewart's stem cell studies. I could still walk around -- albeit slowly. I wanted a cure, but if one never came, I was happy to spend my life living with PH. I'd already been diagnosed with PH for over 5 years and I was very happy with my life. While I was on loads of meds -- revatio, aspirin, diuretics and flolan among others -- I was used to living with and coping with my disease. What I didn't totally accept until two friends with PH died was that there is a window of opportunity for transplant. Wait too long and it closes. When I crawled through my window, the glass was broken and it left some nasty scars, but it lead to somewhere amazing. There is a story of a young woman who's removed her name from the transplant list in England because the wait is too hard and she wants to travel the world. While I understand her sentiment -- I kind felt the same way for many years -- being on this side of the experience I am so grateful to have made it. My life is filled
|With my husband in Palos Verdes, California|
The Take Away
I want a cure. I hope and dream and pray for one. But for now, I try and focus on what I can do with my doctors, with my community, with my family and my friends. In the last weeks of waiting for my first transplant, I painted a beautiful table. It sits in my front room as a reminder of the beauty that can come in our darkest hours. If we look towards action, it will wisk us away and carry us toward the wondrous.
|The table I talk about at the end of the post|
|With my sisters after my wedding|