May 21 2013

Andrea Eisenman

“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
Nickname: Andy
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.

May 21 2013

Ryan Nickson

“Even though I am still very private and do not tell many people about my CF, I am happy to share my story and hope it can positively affect at least one person’s hope of having children.”
I am an extremely private person, and for most of my life, I kept my cystic fibrosis diagnosis a secret because I did not want my friends to treat me differently. I was sneaky about taking my medications, and if seen, I would tell friends they simply aided digestion or even throw them away. In my youth, I did not fully understand how important my medication was.
In spite of CF, I have generally lived a normal life. I played soccer, cross country, and track during high school, and have continued running and began playing hockey. My proudest athletic moment was in 1999, when I placed fourth in Division 1 Ohio 4x800 meter relay at 7:55.6 – which is still a school record! As I get older, I have to work harder and harder to stay active, but I am determined to stay healthy.
My wife and I recently became the parents of healthy, beautiful twins, a boy and a girl, after a difficult series of genetic tests and a testicular harvest. They were born at 32 weeks and 4 days. We are excited for our focus to shift to the kids and for our family to grow by two.
Even though I am still very private and do not tell many people about my CF, I am happy to share my story and hope it can positively affect at least one person’s hope of having children.
Things I Love: Running, cars, hockey and making improvements around the house
Favorite Color: Green
Favorite Food: Chinese
Favorite TV Shows: Burn Notice and Psych
Favorite Sport: Football
Dream Vacation: Somewhere warm and beachy
One Word to Describe Me: Competitive
Advice to People With CF: I would encourage them to never give themselves excuses and to push themselves every day