Cysters and Fibros: Loving and Losing Friends to Cystic Fibrosis

With the internet and increasing survival of CF patients many of us have found fulfilling friendships within the CF community, and some have even found romance within the CF community. In fact, it was a CF patient who coined the terms "Cysters and Fibros" just a few years ago. Since the birth of "Cysters and Fibros" many of us have enjoyed using this term to describe our more-than-friendship-but-family-surviving-CF-together perspective in the CF community. For a decade I have enjoyed researching CF online, seeking out support groups, and befriending others with CF. I have met some of the most incredible people who have CF, and unfortunately I have lost some of the most amazing friends I have ever had. I admire many of our Cysters and FiBros; we battle the same disease, offer advice to one another, and become a pillar of support for one another in dealing with this devastating disease. When I'm at home spending hours on breathing treatments, vest treatments, or just feeling bad I can turn to FaceBook or Skype and chat with another Cyster or Fibro who is also doing treatments or not feeling up to getting out of the house.

My first "group" of CF friends were found over a decade ago. I discovered a CF message board and e-mail support group full of older, wiser, more experienced CFers. I was only 17 and had not experienced many serious complications from CF (yet). What I discovered was a great group of people, but also the fact that being an adult with CF is (1) a blessing to survive childhood (2) full of complications, hospital stays, and often times great suffering. My "group" consisted of CFers across the United States. I thought it was nothing short of amazing (keep in mind this is over a decade ago) that I met people with CF from New York, California, Pennsylvania, and Maryland. This was back before Skype and when the only pictures you could see of one another were uploaded onto AIM or slowly sent through e-mail or snail mail.

My first group of CF friends consisted of Jim, BJ, Don, Kristin and Joey.

Jim, BJ, and Don had already received lung transplant when I met them via CF message boards.

Within six months of getting to know Jim, he died from rejection. His suffering was long and miserable and extremely sad for me to hear him talk about. The night before he died we talked about religion and he asked me to pray that he would die in his sleep. I refused. But he died later that night, in his sleep. This was my first experience with CF and death; I was heartbroken for weeks.

Then there was BJ. His transplant was successful and his health remained stable for two years. He did not like to go out much, but enjoyed talking on the phone. He and I would exchange gifts in the mail. But one day I called and he sounded terribly weak. He was not up to talking and was not his usual self. His body was rejecting his transplanted lungs. His doctors were not hopeful. We e-mailed daily and then one day I did not receive a reply from him. I worried. I called his house. There was no answer. Two weeks passed, and finally I received the bad news that BJ died. A few weeks later I received a Beanie Baby stuffed animal dog named "Courage" that BJ bought me for Christmas shortly before he died. His mother mailed it to me along with a note BJ wrote thanking me for my friendship and telling me to "stay strong" and "fight CF harder than anything you have ever fought for." Shortly before BJ passed I found out I had CFRD and was frustrated that I would have to take insulin shots daily. BJ talked about all he had gone through with transplant and said, "You are stronger than you think Meranda. You will see. Give yourself more credit. It's just a shot. You will go through a lot more with CF." He was right. I turned out to be much stronger than I ever imagined and I have faced great challenges with CF. These days, insulin shots are the easiest part of my daily regimen.

Don, was, well Don was full of life. His transplant was a success and he lived five years post-transplant. Don was in love with life and his personality was one that you could not help but find infectious. Don was all about having fun, laughing, and had the funniest voice I have ever heard. I liken his speech pattern to that of a high pitched, fast paced, better enunciated version of Donald Duck. And, yes, Don's first name was indeed Donald. Don was the eldest of our group, but his perspective on life was probably more similar to an 18 year old. He did not worry about life or health problems. He simply wanted to live and love. Eventually Don met and married a beautiful woman whom he cherished. She worked in the medical field and would stay by his side when his health began to fail. Even in the midst of death Don remained hopeful. He said he always knew he would be transplanted and remained positive. Unfortunately, after celebrating 5 years of post-transplant life Don experienced a bowel obstruction that would lead to surgery and subsequent complications. Don passed away due to complications relating to bowel surgery; his lungs and heart were still in excellent shape when he died

Kristin was very sick from CF and a multitude of secondary CF complications including CF liver disease. She had so many complications from CF I could not fathom, at that time, how she could have so many secondary complications and still be alive. She was not compliant with her therapies, which always prompted me to practically beg her to start taking. I was concerned about her and wanted her to get better. I knew she needed her breathing treatments to get better, but she assured me that they did not help her and they were a waste of her time. Unfortunately, as time passed Kristin became less receptive to my calls and e-mails. She was dying. She knew she was dying and she knew that I knew she was dying. I couldn't cheer her up as much as I wanted to. She was suffering. She was living in the hospital. Her lungs were failing, she was not a candidate for lung and liver transplant due to history of noncompliance--which was fine because she did not want one anyway. Despite having a feeding tube she became very underweight. One of our last conversations she talked about Heaven, and how she knew she'd never be sick again when she died. We said we would dance together in Heaven someday. I knew that would be one of the last times I would speak to her. She was terribly sad, not only because she was dying, but because she felt as though she was dying alone. Despite her giving her all into her failed romantic relationships, she never met a guy who was willing to stand by her side and love her as she endured the sufferings of CF. It was heart breaking to watch her date loser after loser. Eventually I received a call from Joey saying Kristin died--and we cried together over the phone for over an hour. Now our CF group was down to two.

Sweet Memories: Kristin and Joey were friends even before I came along in the group. We used to prank call each other on three-way when Joey or Kristin was in the hospital. We would all laugh so hard we would spend what seemed like hours coughing and choking from laughing so hard. Although, looking back on it, I'm sure as soon as they heard my strong southern accent they knew it was me trying to pull a prank. I now realize they were likely laughing at my inability to change my southern accent to sound like someone from up North rather than a little country girl. I'm sure I sounded much like Forrest Gump before puberty if he were trying to imitate a Northern accent.

We are now in the year of 2012. Joey and I are still alive, though we went a few years without talking to one another. Both of our lives have changed a lot since we lost contact with one another. Joey received a double lung transplant and is now happily in a relationship with a mutual friend I introduced him to years ago. Joey and I text each other and have talked on the phone a few times over the last several months. I'm grateful that he's still alive and has found love. I hope to see him continue to do well and remain happy for years to come. Joey is the last of my original group of CF friends. We have talked about being the last two left from our original group of friends and how difficult it is for us to watch friends pass away. After talking about the sadness of losing our friends, we sat in silence for a few moments as though we were both realizing the same thing: CF life is not for the weak hearted. Simply put, "It's not easy being wheezy, baby."

I have made new friends with CF. Some of them are still living and others have since passed away. It has been difficult. It has been heart breaking. I have learned a lot about CF and especially life through my Cysters and Fibros. I am grateful for social networking and the ability to connect with my CF friends across the world. I am always eager to meet new friends and lend a helping hand where I can. And I cherish the friendships I have with my Cysters and Fibros.

If you have time please see: http://65redroses.livejournal.com/ the documentary about Eva and her life with CF is very inspiring. Eva's story featured her friendship with two other CF women and how they all helped one another. You can also purchase the 65RedRoses DVD through this website. Eva's documentary was recently featured on the Oprah Winfrey Network OWN.