Care Givers

Individuals who are LIVING, BREATHING and SUCCEEDING as Caregivers are true warriors to all of us with cystic fibrosis.

Parents, siblings, extended family members and good friends all offer encouragement, a smile and support just by being there. Caregivers also include the health care team—the doctor, nurse coordinator, respiratory therapist, social worker and dietician—that heals, nurtures and educates people with CF.

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.

May 12 2011

Bob Esparza

“Laughter might just be the best medicine.”

In September 2010, I did a podcast with Jerry Cahill, and I talked about my son Tyler, who is 10 years old and has CF.  In that interview, I said things that I’ve never said to Tyler, and that I’ve only said out loud to my wife and a few other people.  (Podcast can be found at http://www.jerrycahill.com/episode-0094-bob-esparza-being-a-cf-caregiver-parent.)

A few days after the podcast was posted, Tyler and I listened to it.  When it was over, Tyler’s first question to me was: “Will my life be shortened by CF?”  I was crushed when I had to tell him that it might, but that we do the best we can with nutrition, treatments, and exercise.

When Tyler was five years old, he was hospitalized with a bad asthma reaction.  Our allergist decided to do a sweat test because of one or two other symptoms that Tyler displayed.  The diagnosis of cystic fibrosis came as a huge shock to both my wife and me. We were completed uneducated about the disease and did not know anyone in our families that had it.

My wife and I went into over-protective mode for the first six months after Tyler’s diagnosis. We told the staff at school, supplied pamphlets about the disease, had an endless supply of hand sanitizer, and tried to keep him in a bubble. Eventually we saw how our actions scared our son and completely changed our method of caring for him. We came to the realization that there is a difference between living with the disease and letting it control your life. From that point forward, we have worked hard to make sure that Tyler has felt as normal as possible.

Fortunately, Tyler has not been hospitalized since his diagnosis five years ago and only presents mild symptoms. We have been able to take him off of medications and enzymes and rarely have to use a compression vest or have to manually dislodge mucus from his chest. Our doctors at the Children’s Medical Center in Dallas have been amazing and have always been able to stop infections with antibiotics. When I see the struggles that other CF families are going through, I remember how blessed my family is.

Tyler leads a fairly normal, active life for a ten year old boy. He dreams of playing professional baseball player – and we encourage his dreams by giving him access to as many physical activities and sports as possible. We know how important it is for Tyler to remain active and are lucky that he loves to play with his friends and his siblings.

For now, we try to keep the “CF facts” to a minimum. When he asks questions, we answer truthfully, but do our best not to scare Tyler. I know that eventually we will have to have an in-depth conversation about the disease and its impact on his life, but I hope that it will be well into the future and that, by then, we will be discussing the cure.

As a family we love to… play in the pool and “grill out.”
Our favorite vacation spot is Destin Beach, Florida.
Tyler’s favorite…
Holiday is Christmas.
Food is lasagna.
Pastime is baseball.
Movie is Avatar.
Color is red.
Tyler’s family and friends would describe him as reliable.
His role model is Derek Jeter.
His friends and family call him Ty.
Tyler dream of going to a New York City Yankees game.

November 02 2010

Sandra Kindel

“Being a caregiver will forever be the most rewarding thing in my life. “

For a parent, there is nothing more difficult, more painful than watching your child’s health deteriorate while being completely helpless to prevent it. My son Michael was 15 years old when cystic fibrosis took him from this world – but those 15 years were the most precious for both me and his three brothers and sisters.

Michael’s struggles with health started just one month after he was born and continued throughout his brief life. The doctors diagnosed him with cystic fibrosis when he was four months old, which shocked my entire family and completely changed our lives. Raising a child who is different for any reason can often be a burden on a family, but I am proud to say that all of my children loved and supported their brother and were always proud of his inner strength and positive attitude.

Growing up with CF, even when it prevented him from attending school, did not hinder Michael’s academic experience. He was always a straight-A student, graduated from middle school, and even received a scholarship to attend high school. Michael always tried to remain active when CF allowed - was involved in the Make a Wish Foundation and participated in walk-a-thons to raise funds for various causes.

Michael’s health deteriorated quickly and we were told by doctors that he would need a lung transplant by the age of nine. His health improved slightly and therefore did not go through with the transplant. The improvement only lasted for a short time, and eventually we all knew that there would be no more miraculous recoveries. I was Michael’s mother, his caregiver, but it was my son who truly gave us all strength. He told his siblings and me that he was ready to go with a smile on his face, that he was prepared, and soon after that, he left us.

Michael’s death introduced a very dark time in my life, but by remembering his strength and his optimism, I was able to come out stronger. I am now a respiratory therapist and work with many people who have cystic fibrosis. My story as a caregiver is not only one in which I cared for my son, but one in which I have been able to touch countless lives and make people’s individual journeys a little bit easier.

While no day is easy without Michael, I know that he has guided me to where I am today and will always help me in my walk through life and my calling as a CF caregiver.

April 14 2010

Don Warner

I think every family who has a child with CF goes through a time when they have to decide if they want to be public about it – who they want to tell and how involved they want to be within the CF community. Many kids don’t want to be defined by CF or treated differently – which is how our daughter, Angela, felt.

So Angie had a “normal” life – at least as normal as it could be. Kids with CF humble me with their discipline and courage. Sure, Angie became discouraged sometimes, but I never sensed that she felt her life was unfair. For most of her life, Angie thrived. After being diagnosed at three months, she was not hospitalized again until she was 18. In high school, she was a cheerleader, an honors student, and had an active social life.

We worked with wonderful caregivers at the University of Minnesota. Dr. Warren J. Warwick believes in a very structured approach. He says, “You are always in preventative mode. Don’t skip therapies, even when you feel well.” My wife Linda and I helped Angie follow his advice. I was up at 5:30 every morning to get Angie’s 60-minute therapy done, and we had a similar routine every evening. IF she had a cold or more, we did therapy sessions three to four times per day.

We lost Angela when she was just 21 in 2003. She has complications with a bowel obstruction that led to surgery. Within hours of her surgery, she developed a sepsis infection that spread into her lungs. We stayed with her in ICU for 86 days, with her on the ventilator and heavily sedated. Family and friends visited daily to show their support and love.

During and after that experience, I decided to stop keeping a low profile. In 2003, we started the Angela Warner Foundation to support CF research. We started the Angela Brooke Warner Scholarship Endowment at the University of Minnesota in 2005, and completed the Angela Warner Children’s Memorial and Prayer Garden at Gethsemane Cemetery in Minneapolis in 2008. It is a place of comfort and peace for people who have lost a child and has a special area of dedication to those who have lost their battle with CF.

When Angela was diagnosed with CF, our world changed forever. But we had a full life too. Angie was her mom’s best friend, and Angie and I shared a love a sports and enjoyed our special walks along Laguna Beach. Angie was a wise soul, and during those walks over the years, we discussed everything from the stars above to the ocean life below, eventually sharing thoughts on life, mortality, and eternity.

You never completely get over the loss of a child. You learn to live with a broken heart, and try to stay connected to family and friends. That’s why I wrote my book, “Walks on the Beach with Angie: A Father’s Story of Love,” about our experiences. It details her 86 days in ICU, but primarily tells her remarkable story – sharing our reflections on coping with enormous loss and how to move forward with life. I hope that it can help other families who face similar challenges.

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 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.

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