What I have learned through my research

Along with both working with the Cystic Fibrosis Foundation and gathering research through my own personal experiences, I can say I have definitely answered my research question. There are numerous ways that someone afflicted with CF, or even someone associated with a person with CF (such as a friend, family member, doctor,etc) can tell their story and create awareness. Through my research, I found that there are many different outlets such as:

  • Blogs
  • Journals (Online or hand written)
  • Poems
  • Paintings
  • Songs
  • Speeches
  • Books
  • Events, walks, parties, fundraisers
  • Day to day talking

I chose to write a blog because I felt it was the best way to tell my sisters story, showcase important photos and also because she said this would have been the ideal way she would tell her story. Through my life experiences I have found that going to events such as walks-for-a-cure, participating in public speaking and posting on social media have been a successful way to create awareness about CF.

Ways to spread awareness of CF

Ways to spread awareness of CF

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On the Road to Recovery and a New Future

It has been over a month since Cat got her double lung transplant. Although the disease is now cured in her lungs, it still affects other internal functions. Having a transplant comes with its own set of issues and complications. Cat now takes upwards of 20 pills a day to avoid rejection of the lungs, bacterial infections and aids digestion. She also contracted Type 2 diabetes and has to take multiple insulin shots a day. With a lung transplant come new responsibilities and independence. Cat can now fully breath on her own, and is practically back to a normal life. She looks forward to “learning how to swim, going back to school, having a career and doing activities I’ve never been able to do before.”  It has been one of her goals to educate and make people aware of CF and what it entails. Although this blog show a glimpse of what it is like to live with CF, it helps give insight into the lives of a CF patient and their family.

Cat a mere month after receiving her double lung transplant

Cat a mere month after receiving her double lung transplant

Making a Big Decision

After the second collapsed lung, Cat realized her health wasn’t going to improve much. Normally after getting sick, she would go back up to her normal level of health, but this time she was declining. She had to be on oxygen 24/7. Walking a few short feet to the bathroom left her breathless.  Often patients with CF describe this feeling of breathlessness as “drowning from within.” Cat knew she had to make a decision about a lung transplant, and after getting support from other CF patients, medical personnel and her family, she put herself on the active list.

After being on the transplant list for about a month and  a half, the call came in. Lungs were available! Everyone was so excited and supportive. Before we knew it, Cat was admitted in for surgery and 8 or so hours later, she came out. The Cystic Fibrosis Foundation states that the success of lung transplantation is measured by the average length of survival of the person who got the lungs after the operation. Of people with CF, over 80 percent are alive 1 year after transplantation, and over 50 percent are alive after 5 years. Everything was successful and she was now on the road to recovery. The room number of hers loomed large and bright…room 308.

Cat after the surgery  in room 308 at the Sulpizio Cardiovascular Center

Cat after the surgery in room 308 at the Sulpizio Cardiovascular Center

Cat post surgery and still under heavy anesthesia
Cat post surgery and still under heavy anesthesia

Getting sick and coping

As Cat got older, the symptoms of CF slowly got worse. Unfortunately, CF is a progressive disease and as of right now, there is no cure. About 6 months ago, Cat experienced what is called a pneumothorax, or otherwise known as a collapsed lung. Cat was admitted into the ICU and they determined she would need to have a chest tube put in to drain the fluid in her lung and to help it re-inflate.  Cat was scared, the procedure would be done without putting her to sleep. My mom and I stood right next to her as the doctor inserted the tube.

After the collapsed lung healed, Cat was discharged. After a couple days of being home, she developed pneumonia and went back to the hospital. Her lung collapsed again, and at this point, the doctors said she was at end stage and her best option was to get a lung transplant. We were all scared that there wouldn’t be enough time. I had never seen my sister so sick. She was so ill that she could no longer breath on her own…they had to attach what is called a Bi-Pap machine which forces air into her lungs.

At her lowest point...unable to breath on her own and unable to sleep because of all the pain

At her lowest point…unable to breath on her own and unable to sleep because of all the pain

The lung on the left is the collapsed lung, the lung on the right shows severe damage from CF.
The lung on the left is the collapsed lung, the lung on the right shows severe damage from CF.

Growing up with CF

As Cat got older, she ended up defying the odds of the short life expectancy of CF. It came at a cost, however. CF requires multiple medications to be taken everyday, including breathing treatments in the hopes of clearing up the mucus that keeps accumulating in the lungs. Cat would have to use what is called a Nebulizer which is a cup that is attached to a small air compressor that helps clear the airways and thin the mucus.

CF not only affects people health wise, but mentally and emotionally as well. Cat was always on the thinner side because the digestive system is affected by CF. Patients with CF have a hard time getting nutrients from the food they eat and are often underweight. Cat was also self conscious because she was constantly coughing everywhere she went, and people would often stare. Cat felt secluded and had a hard time making friends.

My family and I could only do so much to help Cat foster a healthy relationship with kids at her school. Cat was unusually shy and I would often find myself being frustrated when I would go out with her and people would ask her questions and she wouldn’t respond. I felt that I had to constantly defend her when we were children.

CF affects many aspects of the body

CF affects many aspects of the body

This was the Nebulizer Cat used for her breathing treatments

This was the Nebulizer Cat used for her breathing treatments

Diagnosis

Cat was diagnosed with CF when she under 12 months of age. The doctors predicted she wouldn’t live for long. The age expectancy for a child born then was around 9 to 10 years old. My mother was sad, stressed and confused. After the diagnoses, Cat and her family would be changed forever.

According to the Cystic Fibrosis Foundation, it is overwhelming caring for an infant diagnosed with CF. The care of infants involve numerous things (as for adults as well) such as diet plans that typically include high-calorie, high-fat diets, therapies to loosen the clogged mucus from their airways, and mucus-thinning drugs and antibiotics when needed.  Parents have to use extra caution to avoid the spread of germs. Germs can easily get caught in the airways and cause infections.

My mom getting a chance to hold her tiny daughter in the NICU

My mom getting a chance to hold her tiny daughter in the NICU

Seeing my sister for the first time

Seeing my sister for the first time

What is Cystic Fibrosis?

What is Cystic Fibrosis? According to the Cystic Fibrosis Foundation, “Cystic fibrosis (or CF) is an inherited chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States (70,000 worldwide). A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that:

  • clogs the lungs and leads to life-threatening lung infections; and
  • obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food.”

According to my sister Cat , CF “has and will always be an ever constant challenge in my life, but I  will continue to deal with those challenges that arise and continue to live my life as positive and strong as I can.”

RQ: How do patients and families of patients afflicted with Cystic Fibrosis tell others their story and raise awareness of this genetic respiratory disease?

This is one of the many faces of Cystic Fibrosis

This is just one of hundreds of thousands of people affected with CF