Lucy’s Story
I am a 35 year
old with Cystic Fibrosis (CF). What's different about my story is that I was
not diagnosed as a child. CF is a genetic disease, so I was born with it. As a
child I had pneumonia at 8, and 11 years of age. However, each time I was
medicated and had no lasting effects.
I had pneumonia
again at 13. At this point I started seeing a specialist. I was hospitalized
for 2 weeks. One doctor had suspected CF, but at the time the only test that
would prove it was a "sweat test". This basically measures the amount
of salt in your sweat. People with CF have a higher amount of salt in their
sweat. However, my sweat test came back negative. A CF specialist out in Boston
also confirmed that I did not have CF.
I continued to
do well after this episode. Then, at the age of 22 I began to lose a lot of
weight. By the age of 23, I lost about 20 pounds. I was skin and bones. After
about 1 1/2 years of going to doctors and ending up with a collapsed lung, I
finally came to find out, at the age of 24, that I had CF. It was proven by a
genetic blood test.
In 1992, after multiple doctors highly recommending a double lung transplant, I finally found a doctor that believed it was not necessary, and placed me on pancreatic medication, nebulizers, and physical therapy. After 3 months of treatment, I gained 30 pounds, and increased my lung function from 33% to 45%. If I had gone with the opinions of the majority of doctors, I would have gone through an unnecessary transplant much too early. Of course the possibility of a transplant is still there, but I'd rather continue what I am doing and treat that option as a last resort, at the same time allowing medical researchers to perfect the transplant process and hopefully find a cure.
February of
1999, I began another 2-year struggle. My doctor put me on Pulmozyme. I had
taken it when it had just come out years ago, but when I got pregnant we
decided to stop it. Well, this time, for some reason it caused me to bleed.
From that day on I went downhill. Although my lungs sounded clear, I just could
not breathe. That's when I first tried steroids. What a great drug.... at
first! It gave me so much energy. But every time I tried to wean off, I just
got worse again. I then ended up on IV antibiotics at home almost every 6
weeks, at one point for 5 weeks straight. Then in November of 1999 I ended up
in the hospital. My Oxygen level was below 90% and my lung function was at 33%.
I couldn't walk 2 steps without running out of breath.
I had a long
recovery, and had to stop working permanently. I gained about 30 pounds from
the steroids, my face looked like you could pop it with a needle. After all
this I started my recovery. Tried extremely hard to get back on an exercise
routine. After being on steroids for a straight 6 months, I was finally weaned
off, March of 2000. One year later, June 2001, my lung function was back to
baseline - a miracle!
And I finally lost all of the steroid weight. Now, another year later, June
2002, I'm doing well. Since I stopped working I have made my full time job
ensuring that I do my therapy and exercise every day. And believe me - it
really is a full time job!
I now have a 7-year-old son, Joseph,
which I consider a true miracle. People tell me that I am very courageous and
am a fighter. I believe that Joseph is what gives me the strength to
fight.
-Lucy