Our Personal Transplant Battle

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?

Wedding Holding Hands

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.

After her husband received a double-lung (bilateral) transplant in 2004, Shannon founded the Angel Cove Organ Donation Awareness Shop, which provides awareness t-shirts and gifts products for transplant recipients, living organ donors and donor families - giving 100% of the profits to help heart and lung transplant recipients with medical costs. Shannon lives in Milwaukee, Wisconsin with her wonderful husband and two chocolate Labrador Retrievers.

Please note: I reserve the right to delete comments that are offensive or off-topic.

  • Tricia N.

    I’m not even sure where to begin. I will be 32 in Sept. and I have Cystic Fibrosis (CF does not have me)! I will make this as easy to read as possible.
    I have a wonderful, supportive husband that I love so much more than I can even say. AND I have a beautiful, healthy baby girl who will be 6 on Friday next week! (That’s a whole story in itself) She is my everything & my love for her cannot even be described. She is such an awesome litte girl with the most tender little heart you have ever seen in a child.
    When I was born, my mom was told by the drs that I wouldn’t live to be 2 years old, so as you can see already, I AM A MIRACLE FROM GOD!!! Although I’ve had CF all my life (of course), it never affected my everyday life until about 6 yrs ago which was when I was put in the hospital for the very first time.
    Since then, I have gone through good years and bad years (as I’m sure you understand). Normally, on average I’m in the hospital about 2-3 times per year. I am not on oxygen but do many treatments daily.
    Fast forward to the current time….about 6 wks ago my husband got a terrible, terrible sickness (I would relate it to bronchitis or something). And, unfortunately it was passed to me. After 2 weeks of being on STRONG oral antibiotics and just not feeling back to 100% I was put in the hospital. Everything has changed since then. I was in the hospital for 2 full wks(my longest stay) and finished another wk of IV antibiotics at home. My PICC Line was pulled 2 days ago. Normally, I bounce back by wk 1 of being on antibiotics…this time, that hasn’t happened. Even after being in the hospital 7 days, my FEV1 was oly 39% (all time low for me). It was 53% a month prior at my appt. I feel short of breath ALL the time (normally I have to be scrubbing floors, climbing stairs, etc for shortness of breath). I have also lost 8 pounds from being sick (which I’m trying to gain back). I do have another PFT scheduled for tomorrow so we will see.
    Anyway, the dr. has said it’s time to get the ball rolling and get my folder sent to a transplant center. Even though I am trusting GOD and faithfully praying…there’s a fine line between trusting GOD and just being stupid. I am grateful I live in a time that medically there are things that can be done. At this point, my dr. says I am probably not ready…but we want to start preparing. I am NOT giving up! I refuse to! I have TOO much to live for and TOO much I want to see! However, I could use any info from you re lung transplants that is above and beyond what they want you to read online. I will start swimming again next week, hopefully I will be able to get back what I’ve lost! This is my prayer! Though this is a scary time, I am staying positive (most of the time)! Mentality is 1/2 the battle I’m always told and I want to live!!!!
    Thank you for sharing the info about your husband. My brother has CF but has never had a single problem up to this point (he is 23), praise GOD!!! I just need someone to talk to. My husband, mom, mom-in-law, friends ~ all an amazing support team! However, sometimes you need to speak with someone that really knows how you feel.
    If you decide to get back to me, please use my direct email address. I am so thrilled for you and your husband! I will pray that he continues to do well! GOD IS SO GOOD!!!!

    • Wow Tricia! That is an awesome story of strength and perseverance! God is definitely good! Stay healthy!

  • Karen

    I hope you have already seen this and just enjoy seeing it again. These two sisters are from a town close to my home town. I think the footage is worth watching! http://www.youtube.com/watch?v=2W5Q3Yal3yQ

    • Yes, Angel Cove is very familiar with the sisters! They are such an inspiration!

  • What a story! Thanks for sharing, Shannon. So, going on 6 years on new lungs. I’ve heard the first 3 months are miserable with the testing, but I can only imagine how AWESOME it would to take every one of those breaths over those trying days of poking, choking, and such.

    I bounce between 30% and 36%, but I’ve read about getting back up to the upper 40’s from there. I’ve got a goal. 😉

    Don’t be a stranger. If we get up to see Phil Gerbyshak or my best friend from high school in Milwaukee this year, I’m sure my wife would be just as excited to meet you two.

    • James – Yes, Greg is going on 6 years now with his new miracle lungs and if you check back to the beginning of this blog, there is an hourly update on his progress from the moment we were told “It’s a go!“.

      Before he got very sick, he was around 33%. With the pneumonia, we think he was around 10-18% lung function but he was too weak to do PFTs. He was out of the hospital in 11 days and the doctors said he would hit his peak at 6 months… they were wrong. It is now 5 years later and his lung function went from around 60% at 6 months to 86% today. He has had absolutely no rejection and is still on inhaled medication to keep any pseudomonas from his nasal cavity from getting into his new lungs.

      We should definitely get together when you finally travel up here. Phil and I meet regularly so he can definitely connect us when you are in town. I would love to meet your wife… she is far from alone in her place in the battle and if she ever wants to chat in the meantime, feel free to send along my information.

      Stay healthy and best of luck at the CF walk!