Some people stop by my transplant blog an often wonder: who is Shannon and how did she get involved in Cystic Fibrosis (CF) and organ transplant awareness in the first place?
Well, it is a long story that span over decades but for the sake of your eyes, I will grace you with the cliff notes version of our own personal battle and the love of my life that started it all.
My now husband of 10 years, Greg, was in college chatting with me through an IRC before we met in person when the news came out. We had known each other for over a year and “spoke” almost daily through an online chat board and phone calls here and there – yes, we met 900 miles away through the wonderful Internet. That day he broke the normal conversation and said that he loved me very much but that he had something bad to tell me. I was scared and as I typed back to find out what it was, my hands started to shake. He told me “I have CF and I can understand if you don’t want to be with me anymore”. I was shocked. CF?!?!
Then I started to think a little. “What is CF?” I had no clue of what that meant. In 1995 it was not a very often heard of disease on Long Island, New York. He explained that it was Cystic Fibrosis and told me that it was a disease that effects his lungs and digestive system. I was shocked but still didn’t understand. He then told me that it was fatal. I asked when he caught this ugly disease and I think he laughed a little (because everyone asks that). I believe that at this point, his fingers were trembling also. “Cystic Fibrosis is not caught, it is something you are born with” was what I was told next. I kept thinking it was something like AIDS. He told me that he would understand if I no longer wanted to speak to him. Why would I want to deal with something so horrible. Well being the person I am, I took a deep breathe and calmed my hands down a little. My reply was simply “It is too late for me to leave you, I am already in love with you and will be with you forever”. Being that we were on the computers, I don’t know how he reacted emotionally but the next thing I read is “Good, I love you so much and don’t want to lose you”.
Again, being the person I am, when we said our good-byes for the day, I ran over to the university campus library and took out all the books that I could about CF. I even read a book (forgive me but I forgot the name) written by a teenager who died from CF. It was her journal of sorts. I was touched and automatically started to fight for CF and that is where I am at now.
Greg is the most wonderful man ever. I do believe that God has made us soul mates for a reason. He has stood by me through thick and thin. How can I not love and be with a man that is so beautiful? I know that it is not his fault that he has CF but it seems unfair at times. How can you be so perfect and yet have such an imperfect body? Deep down inside I know it is to challenge us to appreciate life more often. He has taught me that.
Before his transplant, he had been very sick and was on home IVs every 5 weeks and oxygen 24/7 to help him breathe. His disease was originally mostly digestive but this disease had come to the “final stages” after he had been diagnosed with pneumonia in November 2002 and had nearly died. On November 11, 2004, after 5 dry runs and 3.5 years on a transplant waiting list, Greg received his miracle bilateral (double lung) transplant and has been blessed awesome health since that date.
My husband lost his only sister, Diana, back in 1988, at the tender age of 16 from CF. He is now an only child and looks at death with new eyes since that horrible day in 1988. He sees through these eyes when he looks in the mirror everyday or when he looks at his two younger cousins, who also have this horrible disease.
Now we strive to make sure that we don’t lose anyone else that is dear to us. We try to walk the 6.2 miles in the Great Strides Walk every year. We spread Cystic Fibrosis and Organ Donation awareness and we keep the thoughts of our already lost and loved ones in our hearts and minds every day that we are able to get out of the bed in the morning and take a deep breath . . .
Image courtesy of Fabulous Frocks.