People with CF who are LIVING, BREATHING and SUCCEEDING at 60+ most likely are retired and possibly enjoying grandchildren. It’s all about hobbies and a stroll in the park with loved ones.
THEY are a true inspiration to the CF community!
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.
I am 60 years old, married with a daughter, and am living, breathing, and succeeding with cystic fibrosis. When I was younger, no one knew I had the disease – we all thought I just had chronic respiratory issues. Because my CF mutation does not affect my digestive system, I was not diagnosed until I was 55 years old.
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!
“Life expectancy is just a number – and I always try to prove the doctors wrong.”
From the time I was young, I knew that a double lung transplant was a part of my future - it was just a reality I had to face because I have cystic fibrosis. What I didn’t know was that a transplant comes with a whole different set of complications.
My parents found out I had cystic fibrosis when I was just 6 months old – and a shock because we did not have it in our family history. I grew up in Watertown, NY with my three younger brothers who, fortunately, do not have CF.
Because I have always known about my disease, I have not allowed it to impact the way I choose to live. I knew from a young age that I needed to be compliant; that I needed to exercise regularly to keep myself as healthy as possible. I went to school and college like anyone else – I just had a few extra things to deal with. I slept in a mist tent, had to go to the hospital to get IVs, and did all of my normal treatments.
Eventually, in spite of my hard work, I did have to have a double lung transplant. After transplant, I lost my sight – a rare complication of the surgery. I found that I had traded one set of battles – ones that I was used to – for an entire new set. I have found inspiration in my wife and children; they inspire me to keep moving forward and to stay positive. They make me proud every single day.
If I had to give someone with CF advice, it would be this: no matter what happens, just live life to the fullest and as normally as possible.
If I could visit anywhere in the world… I would go to Ireland.
My friends call me Juice.
My Dad is my role model.
My favorite color is… blue – I would love to see it again.
I love to eat… Italian food.
My favorite holiday is… Easter.
My favorite sport is… baseball.
Yesterday is history. Tomorrow is a mystery. Today is a gift, that’s why it’s called the present.
I was diagnosed with cystic fibrosis at the age of 53 and it changed my life. I was sick my entire life, constantly in and out of the hospital. Because of my illness, I did not start school until I was seven. In spite of this set back and because of my love of school, I eventually earned math education degrees and taught high school math for about fifteen years. While I never participated in organized athletics, I did participate in dance, musical theater, and acrobatics. Now that I am older, I try to walk as often as possible and dance with my granddaughters to keep my lungs healthy.
I am now 68 years old and I fight every day to remain compliant. I am always grateful to my history in teaching because I consider my medications, exercise, and treatments as a type of homework – something to which I easily relate. I take my thyroid medications every day then check my email while I do my treatments and then, weather permitting; I go for a 30 minute walk.
My life and goals revolve around my family. I want to see my grandchildren grow up, get married, and give me great-grandchildren. I am the chairperson for a Great Strides 5k and am proud of the money we are able to raise annually. By raising funds for CF, I feel like I am making a difference in the future CF generations’ lives. I constantly strive to imitate my father’s strength and bravery and hope to always make my family proud of the way I fight.
Color is… pink
Food is… Italian
Holiday is… Christmas
Movie is… The Sound of Music
Athlete is… Larry Bird
If I could go anywhere in the world, I would… be at home with my whole family.
If I could give someone recently diagnosed with CF any advice, it would be… Stay
hopeful and remember that your diagnosis is not a death sentence.
I was diagnosed with Cystic Fibrosis in 1995, at the age of 47 after years of suffering from chronic sinus infections, a chronic cough, pseudomonas infections, and sundry other symptoms. I am currently 61 years old and have been married to Lew for 33+ years. I took early retirement in 2000, from my position as a certified school psychologist, due to constant infections acquired from working with infants, toddlers, pre-schoolers, and autistic children. Since then, I have been involved in volunteer activities for various CF organizations, both state and national. I currently serve on the Board of Directors of a state organization as well as USACFA, where I am also Secretary. I volunteer with the Medical School at the University of Michigan for its Family Centered Experience, providing first and second year medical students with the opportunity to learn what it’s like to live with a chronic disease. I am also a member of the Patient-Family Advisory Committee for the CF Center at the University of Michigan. Additionally, I volunteer at my local library and with the Michigan Humane Society.
Initially, after diagnosis, I was completely compliant with all the recommended treatments while still working full-time. However, finding the time to get adequate sleep and exercise was next to impossible. Despite my compliance with treatments, I was on IV antibiotics an average of every 12 weeks. After 5 years of declining health, I decided to take early retirement, which was the best decision I could have made as far as my health was concerned. I was, and still am, able to sleep as many hours as my body requires, to exercise frequently, to rest during the day if not feeling well, and to avoid people who are ill; these were never options while I was working.
During my years of retirement, I began phasing out some of my treatment regimen, as the above routine seems to keep me healthy. However, I’m vigilant when it comes to hand-washing (or using Purell, whichever the case may be), and am willing to increase treatments if the need arises. I keep informed by seeking out and reading the latest research on CF. I also maintain a positive attitude and a sense of humor. I feel that these factors - volunteerism, attitude, and humor - as well as the support of my husband, are as important as the medicines and treatments that I will continue to receive throughout the remainder of my life. My husband and doctor might take exception to this and add that my stubbornness and feistiness also keep me going. While this works for me at this point in my life, I don’t recommend that others do the same. What works for one person doesn’t necessarily work for another.
Although I’m pretty insistent in determining the terms of my care, I will do whatever I consider reasonable in order to achieve my goal of living a very long and fulfilling life. So, if medications and treatments need to be increased in the future, I won’t argue. I know that CF is a monster that can turn quickly and rear its ugly head. That’s why it’s good to be prepared with knowledge, a great doctor, and flexibility in one’s attitude. The key to maintaining one’s health status is to be as knowledgeable about your own body as well as to be a very informed medical consumer.
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