June 28 2009

Amy Purdy

My whole life I have always considered myself a caring person. The decision to become a social worker was an easy one for me. Originally from Long Island, I attended the University of Albany for my undergraduate degree. I later graduated from Adelphi University, where I earned a Masters degree in social work. Throughout my education, I had numerous internships that helped me realize that social work was the right fit for me.
 
I have been a social worker at St. Vincent’s CF Center in New York City for over 10 years. There are over 170 cystic fibrosis patients where I work full time for the center, allowing me to form many great relationships with me patients – I even know what most of their favorite bubble gum flavors are! I have the opportunity to work with various issues including medical insurance, medication compliance, CF education, transplant issues, and general support.
 
Having CF definitely complicates a person’s life, and taking a toll on patients in different ways. I try my best to make my patients feel better, whether they are young, old, or family and friends. My job is to educate my patients and their families while trying to alleviate their daily stress.
 
My favorite holiday is… Easter.
My favorite food is… pickles.
My favorite move is… Hunt for Red October.
My favorite musical artist is… Elton John.
I love to play tennis.
My nickname is Aimes.
My friends and family would describe me as… cheerful.
My sister is my role model.
June 28 2009

Laura Tillman

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.

June 28 2009

Richie Keane

“Exercise has always been and will always be a part of my daily routine.”
 
I grew up in a tight-knit family of nine kids, three of whom, including me, were born with cystic fibrosis. I had a relatively normal childhood – I was actively involved in sports, like baseball, football, skiing, bowling, and basketball. Because I exercised regularly, I was able to stay out of the hospital for the most part up until I was a freshman in college. Severe pancreatitis forced me to leave school and start working a full time job.
 
Cystic fibrosis, while it has not defined me, has affected the way I live my life. As I get older, I notice how much it changes the way I make plans for the future: how I have gotten in the habit of planning day by day or month by month, instead of making longer-term plans. Prior to my transplant, my medical compliance was a habit, almost like muscle memory. I took 40+ pills a day, did a sinus wash at least once a day, have dealt with my diabetes for years, exercised regularly, and did a number of other treatments. My doctors told me, after my transplant, that because CF forced me to be disciplined and scheduled, my chances at success increased significantly. The one long-term goal I did set early in life was to keep my lungs as healthy as possible for as long as possible – and I succeeded in that goal.
 
To this day, the thing I am most proud of has nothing to do with my disease – it has to do with my family. My wife and I helped raise our two nieces, and I am proud to say that they have grown into loving, beautiful women. My wife and I will soon celebrate our 25th anniversary, and we have so much to be thankful for – especially the family we were able to build together.
I enjoy… fishing, golfing, playing with my dog, staying active, managing a restaurant, and taking vacations.

My favorite…
Color is red.
Food is pizza.
Holiday is Christmas.
Movie is To Kill a Mockingbird.
Song is Freebird.
Team is the Jets.
Athlete is Joe Namath.
If I could visit anywhere in the world, I would…  go on an African safari.
My friends and family would describe me as… witty.
My role model is… my doctor of 45 years, Dr. Jack Gorvoy.
If I could give someone recently diagnosed any advice, it would be… stay active and keep a regiment.
June 11 2009

Jennifer Alawadi

“You come to love not by finding the perfect person, but by seeing an imperfect person, perfectly.” –Sam Keen
 
I first met my husband, Mohammad, over the internet in 2003. We spent long hours chatting, both over the phone and online, and after three short months, I made a trip to Chicago to meet his family. In him I found a very wonderful person who, despite his ill health, inspired me in way I never thought possible. Shortly after my visit, we married. It was then, when I became Mohammad’s wife, that I realized the great responsibility of his illness and joined him in his fight against cystic fibrosis.
 
There were a multitude of hurdles to jump before we received Medicaid. With Mohammad originally uninsured, we were unable to afford all of his expensive medications and, as a result, my husband had to receive oxygen from a concentrator every day. At first considered ineligible for Medicaid, Mohammad struggled to survive off of donated medications from pharmaceutical companies. Since we have started to receive health insurance, he has been able to receive the medications and tests he needs to make it through each week, however; our battle against CF continues.
 
With our CF center two hours away from our home in St. Petersburg, Florida, and Mohammad bed ridden and unable to work, the every day fight still proves to be difficult. Struggling to pay the bills and make rent, I am constantly juggling the roles of caretaker and homemaker. I have to be a shoulder to cry on, a cheerleader when Mohammad has in infection, an advocate among doctors, a housekeeper, a nurse, and most importantly, a wife.
 
Now that Mohammad is 42, there is a greater need for him to stay compliant. Every morning I wake him up early and help him with his treatments and airway clearance. However exhausting the daily treatments are, I am thankful for the hours it gives us together. Mohammad has an extra spark for live – making every minute I spend with him a reward in itself. My goal each day is to do whatever I can to make my husband feel more comfortable and to continue breathing – with the hope that he will receive a lung transplant and more freedom in the future.
 
Through the challenges Mohammad and I have faced with CF, I have found there is more to live than previously imagined. There is a great love and respect that we share for each other and, most importantly, there is hope. Hope that Mohammad will get a lung transplant, that we will make it through the next day and week. I am grateful that my husband never loses hope.
 
My favorite holiday is Halloween.
My favorite food is Indian.
My favorite pastime is visiting aquariums and the beach.
My favorite movie is Ever After.
My favorite color is teal.
My friends and family would say that I am chipper.
My mother is my role model.
June 08 2009

Meranda Honaker

“We always have to have hope that things will work out in a good way.”

When I was eight months old, I was diagnosed with cystic fibrosis. Growing up in the heat of North Carolina, I lived a normal, active childhood. Living with CF became more challenging during my late teenage years when I developed CF-related diabetes. I have been able to overcome the most difficult days by maintaining a positive attitude, following my doctors’ orders, and most importantly, by being as physically active as possible.

During my years as a high school student at New Hope Academy, I learned the importance of routine exercise and being compliant with my healthcare. By participating in routine physical activities such as tennis, swimming, and jogging on the treadmill daily, I have more energy, less stress, and an overall improvement in my ability to lead a full life.

Now, I am 26 years old, and I continue to put my healthcare first. Currently, I am a full-time online college student and am working toward receiving a Bachelor of Science degree in communications from the University of Phoenix in 2012. I hope to use the knowledge I gain in college to educate and encourage other members of the CF community.

My favorite…
Food is Mexican
Movie is The Notebook
Color is Carolina Blue (Go Tar Heels!)
Music is anything I can dance to
My role model is Tiffany Christensen
My dream vacation is to go to Disney World.