Home Cystic Fibrosis Photo Gallery Hobbies Favorite Internet Links Contact Me



Here is my attempt to tell you my story. I get a lot of questions like "What is it like now?" or "Do you feel different now?". I think that answer stands for itself. However I will tell you this. There is no way to explain what I have felt over the past few months. Unless you have personally endured the process and lived a life riddled with disease you will never fully understand how wonderful transplantation really is. I hope this page brings inspiration to all that read it. I know I have a lot to offer others and I feel that if I can just touch one person with my story than it makes it all worthwhile. My only wish is that the person(s) reading this can get a better glimpse of my life and find out what it means. Please read the writings I have created below and try to feel the message within them. Thank you, -Gary Hughes

At the age of 17 months I was diagnosed with the disease Cystic Fibrosis. Since then my life has been an uphill battle to survive. To date there is no Cure for this Disease (but they are getting closer). The digestive part of my disease can be easily treated with enzymes etc., but the Respiratory portion of the disease takes it's toll on your lungs until ultimately there is nothing left. Although modern medicine has allowed those with CF to live much longer than ever, ultimately the only known cure for this disease right now is (Double) Lung Transplantation. I was first listed on the Colorado Region lung transplant list just over 2 years ago. Most people will never comprehend how it feels to seemingly struggle for every breath you take. Or having to deal with fevers of up to 103+ on a daily basis while still going to school and walk campus because I didn't want to get behind in my studies. But people with CF are strong; we take the mountains that sit in front of us and we turn them into mere bumps in the road. We have to because our life depends on it.

I hear a lot of people tell me I am an inspiration; I look at myself as a person who just doesn't give up; I push. What use is it in our lives if we don't push our limits and go the distance. For this reason I have never let my illness take control of my life - I allow my life take control of my illness. We all have a choice, and mine is to be a fighter.

Looking back on my life I don't think there is one thing I would have done or experienced differently. My CF makes me the person that I am. For 27 years now it has defined me. There's no telling what my life would be like if I didn't have to go through all the trials and tribulations that Cystic Fibrosis has brought my way. They have strengthened me as a person and made me who I am. I look at others around me in this world and find myself thankful for every second of the life I've been given. While my body may be weak physically, CF has made me one of the strongest men on earth in mind and spirit. To that I am thankful beyond belief. I see my CF as a blessing, when others may look at it as a curse.

Most of you can understand why I say curse, but few know what I mean by the term "blessing". Blessings can come in various forms. Because of Cystic Fibrosis I can honestly say that I have not taken one day of my life for granted. I try to not get lost in all the commotion of society. I take time out for myself. I enjoy waking up in the morning, going outside (when it's nice), and sit in the coolness of the day. Thanking God for the beautiful creation He's given us to enjoy. Listening to the birds, feeling a cool breeze blow, and just sitting enjoying the warm glistening sun shine upon my face. It's at these times that I can say, "Yes, I have CF, but No, I don't let it get me down". I have too much to be thankful for to complain that life isn't good enough...That's why I term my life as a blessing...

So about the Transplant....

Many of you have known that I have been on a list for "Double Lung" transplant for a while now and I just wanted to take this time to let everyone know what has been going on in my life. Needless to say my life has been a whirlwind the past few weeks here. I'll try to explain the best I can. Although there is no real way to explain the emotions that I have. It is a very personalized experience, and only one that can be understood if you are feeling it firsthand. Nevertheless I will try.

I had the operation on the 29th of May 2002 and was in the hospital for 8 days thereafter (they called my house at 2:30 in the morning with the news). The total length of the surgery was about 8 - 1/2 hours long and I was pretty much "out" of it for 2 days afterwards. The whole process is relatively simple one - Take the old organs out and replace them with the donor ones. However it isn't a walk in the park by any means. It is a totally different way of life. One that requires a careful dedication to knowing yourself inside and out - something I was used to doing anyway since I have grown up with a terminal illness my whole life. Learning the different rejection meds and what they do along with having a very "aware" sense of yourself is very key. Even the slightest change in O2 levels or temperature could mean the difference between rejection or otherwise.

I have only had these new lungs for a short while now now and Talk about a night and day difference already! I keep looking at my O2 level thinking if I walk really hard or exercise it is going to drop like it used to. Then I look down and my O2 saturation level is 98% and I just have to laugh. It feels so good to be able to breath. I really have nothing to compare it to since I have had my Cystic Fibrosis my whole life and I really don't know what it is like to feel normal. Now that I have these new lungs, this will be the closest I have to a normal life - and I am looking forward to seeing what it is like.

Some may say that there is a moral or ethical dilemma with doing transplants or any other surgery that tampers with our lives in a major way. After going through it and living it, this is the way I see it. God has given us a wealth of knowledge and created us to be the smartest beings on the planet. We are some of the few creatures in the animal kingdom that are born with an innate sense to care for the sick and dying to whatever extent necessary. Most other creatures leave their sick to die alone, as it is a hindrance for the rest of the group. Humans are not like that. As God has given us this ability to create, heal, care, and innovate there is a reason for it. Our knowledge is God given and to that I believe He (God) entrusts us with the decisions that we make. Why would God allow us to be such innovators if we are not expected to make good use out of it. I for one am thankful that God has blessed humankind with the knowledge to understand and comprehend such complexities of the human body that allow for such a miraculous benefit.

Let me tell you something that I have just begun to experience. Organ Donation and Transplantation is a Gift from God. You will never know what a Blessing the whole process is until you have to experience it firsthand. It takes a special person to be willing to donate organs to a perfect stranger whom they have never met before, but to that I am grateful. I don't know much about my Donor expect that it was a younger male, but to him, and God, and the surgeons I owe my life. I have always lived my life in wonder.... I Wonder what it would be like to breath normally; I Wonder what it would be like to have a day without the need for Nebulizers and inhalers and treatments totaling hours per day; I Wonder what it would be like to be able to wake up and take a big breath of air like everyone else. I am now just beginning to experience what it is going to be like, and let me tell you - "I like it".

I know a double lung transplant is a huge undertaking. I have jokingly told others that I am always one to do things with style, and this transplant is no exception, but I am up to the challenge and I will survive!

I will also tell you this...Never take the life you've been given for granted. Our time on this earth is to short to complain or be dissatisfied with the small stuff that we cannot control. Always take time out to look at the big picture. Take time to view God's creation and marvel at the heavens. You will be a much more peaceful person for doing so and you will find that life takes on a whole new meaning.

Sincerely,

Gary



Here are some photos cataloging my recovery from my "Double Lung Transplant". Each image is linked to a full sized picture, just click to enlarge.
Below is a copy of my first month's "Pulmonary Function Test" along with a copy of my Pre-Transplant PFT.
Pre Transplant:
Pre-Transplant
1 Month After:
1 Month
Leaving the Hospital (Day 8):
leaving
Out Riding My Bike (3 weeks after surgery):
riding

View my webcam here!

May 29, 2002 I had my Double Lung Transplant!! Read my story here.


HughesPC.com © Gary Hughes (2003)