“Recently, I passed the 10-year anniversary of my transplant, and I’m doing things that I never expected to do.”
To be honest, when I was in my teens and early 20s, I wasn’t disciplined about my treatment and my health. I guess I was resentful that I had to take care of myself in a way that my friends didn’t. Being compliant and working and trying to have a social life — sometimes it was too much. I was hospitalized several times for pneumonia, and my prognosis was not good.
In my early 30s as my health was deteriorating, I was placed on the lung transplant waiting list. I was dependent on oxygen, and I had colds that lasted for two or three weeks. My lungs were bleeding, and I had hemoptysis frequently. But even as I struggled, I knew I had to be compliant with my treatments, and I exercised in whatever way I could, usually on the treadmill or by swimming with my oxygen on.
In 2000, at the age of 35, I received a double-lung transplant. Despite my condition, it wasn’t an easy decision. There was no guarantee that it would go well, there were a lot of risk factors. After my transplant, I was in the hospital for 13 days, but I felt elated when I could take a deep breath without coughing. I hadn’t been able to do that since I was about 10 or 12 years old.
Recently, I passed the 10-year anniversary of my transplant, and I’m doing things that I never expected to do. I try to do up to an hour-and-a-half a day of anything that’s cardiovascular to keep my lungs clear. To maintain my health, I go to the gym, swim, play tennis, and go bike riding. I have been in the Transplant Games twice, and I’ve won a silver and a bronze medal. I didn’t expect to be able to do these things; I just hoped that my transplant would enable me to get off oxygen and be a little more independent.
One of my inspirations during my toughest years and since has been participating in and serving the CF community. For many years, I felt isolated because I didn’t know anyone with CF. It wasn’t until 1997 when I went to a Cystic Fibrosis Research Inc. conference in California that I met people who were living and working with CF. These were people I could talk to, and they would understand what I was going through. At the conference, I met a volunteer who worked on the “CF Roundtable” newsletter, and she asked me to join the Board. I began to volunteer on the publication, which I still do today. I also volunteer for the New York Organ Donor Network, and I participate in CF walks.
I appreciate every moment I have, and I appreciate the surprises that life sometimes brings. For example, one day, I was walking my dog, and I met a man at the dog park. His name is Steve Downey, and we got married in September 2008.
I’m committed to staying compliant because I don’t want to slide back into sickness.
Favorite Holiday: Thanksgiving. You can eat whatever you want all day.
Favorite Food: Japanese
Favorite Pastime: Several. I love reading fictional literature and non-fiction. Cooking. I love to go to the movies, and I watch a lot of documentaries.
Favorite Movie: Paradise Lost (documentary)
Favorite Music: REM, Liz Phair, Bob Mould, Led Zeppelin, trip-hop, Olive, Air, Morcheeba, and ‘80s stuff
Favorite Color: Olive
One Word that Describes You: Quirky
Role Model: My mother. I lived with her when I was too sick to be independent, and she’s always been there for me. She has kept me from giving up. She and her parents escaped from the Nazis in Austria, and I think that’s where I inherited my survivor skills.
Favorite Words of Wisdom: Do unto others as you would have them do unto you.
Dream Vacation: Somewhere tropical or in the Mediterranean, where the food is good and I could play tennis and be in the water. No computers.