Club CF 70+

If you are one of the many people LIVING, BREATHING and SUCCEEDING with CF, we want to hear from you! Show the world what you have done!
Click here to submit your story. All applicants will receive a CLUB CF t-shirt.

August 09 2018

Deborah J.

When were you diagnosed?
I was diagnosed at age 32, two days before giving birth to my son Stephen, who now 38 years old and just completed a post doctorate at Oxford on climate prediction.

Tell us more about yourself:
I had a very healthy childhood, was very active and rarely sick, but my younger brother died of CF at age four. He was sickly from the time he was born. We were told that he died of pulmonary fibrosis. It was January of 1956 and CF was not given that official name until later on that year. We did not know then that CF was genetic and hence my brothers and I were not tested. I was very healthy until age 19. My college roommate left a window open one night and I got very cold, woke up with a terrible cough and pain in my chest. The cough turned into my first lung infection and from that time forward whenever I caught a cold, it went directly to my lungs. In my twenties, I was told I had bronchitis.

A years and years of trying to conceive, when I got pregnany, I got really sick and was hospitalized three weeks before my son Stephen was born. A pulmonary specialist was called in to consult. He asked me a question no doctor had ever asked me. He asked me if there was anything unusual about me. I laughed and whispered, because I could barely breathe, that yes when I play tennis or am outside in the heat - that when I come inside and my sweat dries, I have salt crystals on my legs. I went on to tell him that I could only wear white sandals in the summer because any other color would get white salt stains in them in a few short days! His eyes bugged out and his mouth dropped open! Then he asked me if I had ever been tested for cystic fibrosis. I said what's that? When he told me, I said that is what I have. He said well we have to test you. I argued, no, that's it! But of course, he had to and yes that became my official diagnosis.

I participated in a lot of CF research in my center until I got too old. Then, and still. I tell the doctors that they should continue including me and other older survivors like me in their research. Why have I survived and my little brother died at such a young age? We had the same parents, same genes. And so, I say to any doctor reading this, study us! I will do anything to help children born with this disease.

Describe your daily treatments, medication, and routine:
I only take medicine if I am sick. I stay positive. I drink lots of plain old water, and I exercise a lot, aqua aerobics, walk up hills, chase my grandchildren around and play ping pong! I used to play tennis and racquetball but my knees are talking to me so I have switched to ping pong.

What motivates you to stay healthy?
My children and grandchildren! And my goal of being the oldest person with cystic fibrosis!

What was your worst day with CF?
My worst day was when I was giving birth to my son. I had been diagnosed with CF two days earlier. I did not know if I would live long enough to see him walk let alone go to kindergarten. My heart was aching, and I was so very scared. But I decided I would do everything I could to get and stay healthy.

What was your best day?
My best day was giving birth to my daughter Suzanne, now 32 years old. After giving birth to Stephen, the doctors told me not to get pregnant again. But I fell pregnant five years later. It was quite a surprise because my husband and I had tried to conceive for several years before I had Stephen. I had the normal healthy pregnancy and Suzanne weighed ten pounds and three ounces and I gave birth to her in three pushes and I thought I deserved a metal! Suzanne is now a bilingual teacher in a top-notch school here in Mexico. She has the three children I chase around.

Do people know that you have CF?
Everybody that knows me knows I have CF. You just have to explain that constant, but lung clearing cough! "No, I don't have a cold, I have cystic fibrosis", then they inevitably ask if I smoke. I laugh at that! "No way, I'd be in my grave already!" Also, I tell them because I also tell them not to come visit if they have a cold. I run, like really run, from people with colds. I have run out of stores, jumped out of taxis, gotten out of long lines if I notice someone has a cold. I wear a mask on public transportation and wash my hands thoroughly when I get home. Yes, I am a bit neurotic, but hey, I am still here and still kickin'!

What do you do for fun?
I play with my grandchildren, play cards and scrabble, write poetry and string beads from my now 35-year-old collection of beads. I wrote a poem about having CF. it is very funny and poignant too. I'll send it to anyone who wants a chuckle!

What are your goals?
My goal is to be the oldest person with cystic fibrosis. I am seventy and still in good health. I am retired now and had a fabulous career as a school psychologist in an early intervention program. I loved my job and was very good at it. I would also like to be a speaker at a Cystic Fibrosis conference some time. I can be very inspirational and I have a great story to tell and a sense of humor!

August 23 2013

Jim Dresch

I have always been an extremely positive person. Whether I am feeling poorly or feeling really healthy, I try my best to keep a hopeful, can-do attitude. My story is similar to a number of CFers, as I was diagnosed with the disease later in life. I struggled with health issues through my childhood and a majority of my adult years. Misdiagnosis after misdiagnosis eventually led to the doctors telling me that I had cystic fibrosis when I was 51 years old. I am now in my 70s and managing my disease the only way I know how – with a positive outlook on my life.

While many other people my age are retired, I find that working in my barbershop several days a week helps me keep a schedule, not only in my professional life, but in my personal life as well. With determination and dedication, I stay compliant with all of my medical treatments – something that I encourage everyone with CF to do. Compliancy truly does make a difference.

I am extremely blessed in my personal life – I have a wonderful wife of 44 years, and have two children and four grandchildren. We love spending time together; something that only encourages my positive attitude further. I consider myself lucky every single day that I have such a loving family and such a wonderful life, and I plan to continue to live with hope.

If I could give anyone out there with cystic fibrosis advice, it would be to stay very positive and remain compliant with all of the treatments that you discuss and agree upon with your CF Clinic.

I love to… golf and go dancing with my wife.

My favorite…
Colors are red and black. Food is roast beef with mashed potatoes and gravy.
Music is rock-n-roll from the 50s and 60s.
Football team is the Vikings.

If I could visit anywhere in the world, I would go to New York City.