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!
Because my diagnosis came late in life, I led a typical life – the only major medication I had to take was inhalers regularly. About twenty years ago though, my health took a downward turn. Now, I am listed on New York and Massachusetts for a lung transplant.
After my diagnosis, I started doing CF treatments every day – four to five nebulizers in the morning with a vest, and again in the evening. I am currently in a pulmonary rehab program, involved in yoga classes, and try to stay active all of the time. I am motivated to stay compliant with all of these treatments and remain fit because of my family.
Color is purple.
Food is chocolate.
Musical artist is Sting.
And team are the Mets.
If I could visit anywhere in the world, I would go to Egypt to see the pyramids.
My role model has always been my mother because of the kindness she showed everyone she encountered.
If I could give someone recently diagnosed with CF some advice, I would tell them to read and learn as much as possible – and to seek out your local CF Clinic. Stay positive… and stay compliant!
I am both grandmother and primary caregiver for two beautiful children with cystic fibrosis. Raising my grandchildren – Elijah (7) and Renae (5) – has been a major adjustment for me, especially after raising my own four healthy children.
Every morning, Elijah and Renae wake up, take their medication, eat breakfast, and head to school. They both go to the school nurse during the day to take their enzymes and to do their breathing treatments. Once they arrive home, they take enzymes with their snacks and do treatments again before bed. Elijah also has a nurse come over to help set up his feeding tube before he goes to sleep.
Both my grandchildren play sports – Elijah likes baseball and Renae is in gymnastics – and both of them like to swim. I see an obvious difference in their health when they are active. It amazes me daily how they go about their days as though nothing is wrong and live every day with joy.
My favorite color is blue.
My favorite food is Chinese.
My favorite holiday is Christmas.
I love to watch the Hallmark and Discovery Channels.
If I could give other caregivers advice, it would be to remain patient and advocate for your child with CF. Learn as much as you can and talk to other families affected by the disease.