With Chuck Price
We all know that life ends. Most of us pretty much ignore that reality. Thinking about one’s demise is not pleasant and many think that death is in the distant future anyway so why even consider it. I have long believed that one of the reasons organ donation rates are so low (only 40 percent of Americans are registered donors) is that to be a donor one has to address one’s own death and people don’t like doing that. It seems, too, that the younger you are the more invincible you feel
People on the national organ transplant list, though, are forced to think about death regardless of age because they have been told they are dying. You can’t get on the list unless it has been determined that only an organ transplant can save your life.
44-year-old Chuck Price was one of those people. A mere six months ago he was very near death. Desperate to live and fighting with every fiber of his being he knew his chances of spending much more time with his wife and sons was diminishing rapidly. Price’ lungs were shutting down due to a disease you probably never heard of, Alpha 1 Anti Trypsin Deficiency. Only a double lung transplant could save his life and they are rare. This genetic (inherited) condition is passed from parents to their children. Alpha-1 may result in serious lung disease in adults and/or liver disease at any age and Chuck Price was unable to escape it. He has no memory of ever breathing like a normal person. He can only remember a constant struggle for air that has been both debilitating and discouraging.
There’s a lot more to this story but I’m going to stop here for just a few moments and tell you the Chuck Price story in an upside down fashion because that’s the way I learned about this inspirational, incredible and compassionate man.
It all began for me after Chuck got a double lung transplant and then about three weeks ago became a member of my 3,000 member Facebook group, Organ Transplant Initiative (OTI). One of his first posts caught the attention of a lot of other members. It came from the heart and it was powerful and moving. His message was aimed at everyone and no one but it had special meaning for transplant patients, recipients and donors. Here’s what Chuck wrote on his I-phone, then posted on OTI as he reflected on being able to breathe and live again.“About 20 weeks ago I was sitting at UVA (University of Virgina) with 12-14% lung function, trying to keep a smile for the sake of my family, but believing that it was another dry run. 20 weeks + 15 minutes ago the flurry around me accelerated to a fervor that turned me to tears, as I feared I would die and never see my wife and kids again 20 weeks + 45 minutes ago I was rushed to a shower, signing reams of paperwork, getting IV and ports installed and told we were “live”, and I cried harder, my wife and I thought and prayed for the angel who was giving me a shot, and for their family. I tried to picture my boys and burn them into my memory, as I feared it may be my last thought…I signed the last document, a confirmation, to donate my own organs should the worse come to bear. 20 weeks + 90 minutes ago, I was wheeled away adjusting my view to see my wife for as long as the hall, would allow. I was wheeled into a room, filled with what seemed like futuristic machines and devices, and being attached to such. My last words to no one and to everyone, “I’ve got 2 boys who don’t know how to be men yet people, and God let someone here be a Cowboy fan.” 20 weeks + 2 hours ago someone injected me with something that calmed me and made me very warm, a mask was placed over my face and I pictured my boys…the light faded to black… 20 WEEKS LATER, I’m a different man, my lung function is above 100 % in all categories, I’m prepping for my first 5k, I’ve returned to work, started a donate life/alpha 1 awareness foundation…and I’m here to teach my boys to be proper men. 20 WEEKS LATER, thank you God, Thank You my Donor angel, for everything I’m able to experience. Thank you for the good and even the bad days, thank you for the recovery, thank you for the strength when I lack it. Just thank you.”
Then articulating his feelings further he added these heartfelt words as advice to other transplant recipients:“When you get the call (saying there’s an organ available for you), put it in God’s hands and never waste the chance to thank your donor and donors everywhere. Be humble because no matter what pain you went through to get there, you deserve this no more than others waiting. You are very lucky to receive such an inexpressible gift. When you heal give back…you’re not an inspiration, you’re not special, you’re not a chosen saint, you’re the recipient of a life-saving organ from another human being. It is the most precious, special gift anyone of us could imagine….and… YOU OWE! From myself and all like myself…THANK YOU!”
When I read the post I knew I had to have “The rest of the story,” as newsman Paul Harvey used to say. I needed to know what brought him to the point where he tapped out that inspiring note on his I-phone so I contacted Chuck and found that he is taking full advantage of his new life.
His youthful exuberance is exciting and contagious. He sounds like a man who has a thousand things to do but only ten minutes to complete them. Ideas flow from him like oil from a new gusher and all of it, all of it is based on gratitude aimed at his unknown donor.
I will relate more about Chuck’s plans his feelings and his gratitude but I think it is important to add some perspective here before we do. First, if you are not an organ donor and want to be just click on this link and you can register right now. It only takes seconds.
There are about 120,000 people on the U.S. organ transplant list and only about 28,000 transplants are done each year. At any given time there are about 1,500 people on the Lung transplant waiting list. The wait time for lungs is from four to five months. Unfortunately only one in 5 donors has lungs suitable for transplant. That means that a lot of people die waiting.
For those unfamiliar with the organ transplant process, you can only be added to the waiting list if an organ transplant center committee certifies you as being in the end stage of a disease and that there is nothing more conventional medicine can do to save or prolong your life. In other words you have been told that you are dying. That news is not only depressing it is irritating and frustrating. In Chuck Price’ case it was doubly frustrating because he is a “can-do” kind of guy and with Alpha 1 there was nothing he could do — but wait.
As his time on the list lengthened, Chuck believed he might be one of the unlucky ones for whom there was no life-saving organ. The thought that he would leave behind his lovely wife Lisa and his two sons, 13-year-old Chase and 20-year-old Skyler tore his heart out. At 44 Chuck had hoped to have a long life ahead of him but now, struggling for air with each breath his time was dwindling to days, maybe hours — and he knew it.
Not being able to breathe is terrifying. I have Chronic Obstructive Pulmonary Disease (COPD) and while nowhere near as serious as what Chuck experienced I know what it is like to struggle for every breath. Any amount of exertion can cause breathing to become even more labored and with that difficulty often comes panic…which makes it even worse. Add difficult breathing to knowing that you are dying and you can imagine Chuck’s state of mind.
If you want to get a hint as to what Chuck and those like him experience with a disease like Alpha 1 take a standard drinking straw between your lips, block your nose and breathe through the straw. Now crimp the straw…and try to breathe. That’s what Chuck felt like 24 hours a day for almost all of his 44 years.
As a heart transplant recipient I and others with new organs can identify with the emotional roller coaster ride Chuck was on. Knowing you are dying and that chances of getting a transplant are very slim leaves you with a burning sensation in your chest and gut not unlike acid reflux only there is no quick Pepto Bismol or Zantac relief for it. The burning never goes away and just when you think it has reached its zenith it gets worse.
The sinking feeling burns through your heart and into your soul leaving you with a smoldering desperation that cannot be defined or explained. There simply are no words to describe the emotional agony. It is not so much the fear of dying, although that’s certainly part of it but rather a deep concern for the well-being of loved ones once you are gone. You desperately want to show a brave face but your insides are mush and you want to scream at the top of your lungs that this just isn’t fair. When you hug your wife or kids you don’t want to let go. You almost feel as though dying is an abdication of responsibility to your family and you are wracked with guilt and remorse and even anger…sometimes rage.
Not only did Chuck have a family to which he felt obligated but he was the owner and President of American Weld Worx, an industrial service contractor that serves mining and heavy industrial manufacturing businesses. So on top of his family concerns were those of his business, his employees and customers. Chuck was carrying an immense emotional load.
As of six months ago all of that changed because of a generous anonymous stranger. Chuck Price got his new lungs then. He still worries about his business and his family, but now that he can breathe he can act on his concerns and fix them. He is no longer helpless and that makes him very happy indeed.
Price has lots of goals and apparently the energy he’ll need to make them real. One of his plans has him forming a foundation that will help transplant patients and he talks about it with an excitement that causes excitement.“I named our foundation Chucky’s Second Wind because I can breathe again but I should have named it Chucky’s First wind because I have absolutely no memory of ever breathing like this. I would like to say I breathe like a normal person, but that wouldn’t be true, our Lord and my Donor Angel saw fit to take me from a lung function of 12-14% to well above 100% in all measurable categories. My Pulmonologist says my lung function is that of a 22-year-old competitive swimmer. I can’t help but be giddy with happiness, and give daily thanks for the “second wind” I’ve been given. None of this was possible without the selfless gift, given by my Donor Angel.”
Price’s plans for the foundation are simple.“My overall goal is to help others receive the same gift that I received regardless of financial standing, I hope the Affordable Care Act (Obamacare) makes that dream come true but that remains to be seen. Short term I hope to stimulate people to become donors and reduce the gap between supply and demand. Additionally I plan to set up two scholarships. “The Donor Angel scholarship will be the original and when I discover the name of my donor we will have a second one named after him or her. I know I’m sounding like an over-achiever here but I think Robert Browning best captured my philosophy, “Ah, but a man’s reach should exceed his grasp, Or what’s a heaven for?”
One might read what I have written and what Chuck Price said and ask, “Is this real, is he really that grateful?” The answer is, “Yes He is that grateful.” I asked him what if felt like to take that first breath with new lungs. Word for word, here’s his response. Again, Chuck Price’ own words:“I was on a ventilator and frightened because I had never been on one before. Waking up to find out one in your mouth and lungs and that you can’t speak is scary. I had to communicate with family by handwritten notes. About 40 minutes after awakening they told me I was over breathing and the vent would have to come out. That scared me, too. I just knew I was going to die when it was removed and I wrote a note to my wife and my dad begging them to prevent the procedure. Of course the doctors knew best and it was withdrawn – and I didn’t die and then—-I took my first breath, the first real breath in my entire life. Wow! I streamed tears, I can’t remember ever taking a breath like that so I took another and filled my new lungs to the hilt. Nothing in life had ever felt that good. I could find no words so I just grasped my wife’s hand and cried. An hour after those absolutely delicious breaths they also removed the oxygen and the saturation meter they put on your finger showed it was 98-99 % which amazed everyone — the docs included. I was in a chair and walking very soon after.”
You’ve heard the commercials on TV that pitch some amazing deal and then add, “But wait, there’s more!” Well, there’s more to the Chuck Price story. Not only is he rebuilding his company, establishing a foundation and setting up two scholarships he plans on running a 5K. And, remember this. It’s only about six months since his double lung transplant. Price talked about the 5K race.“The 5k is called the Apple Trample 5k, it’s a yearly event in a much larger event, The Apple Harvest Festival held in Martinsburg WV. We will not only be competing but will have a booth during the race signing up as many Organ donors as humanly possible. We will also be raising awareness for both organ awareness and Alpha 1 Anti Trypsin Deficiency.”
Thee you have it, the Chuck Price story. If his enthusiasm doesn’t affect you then it is quite likely you are a Vulcan, you know, the pointy eared people who are totally devoid of emotion as represented by Spock on Star Trek.
God bless and keep you Chuck. You’ve got your work cut out for you and with your attitude we know you will accomplish everything you set out to do and more. If not, Robert Browning will be very disappointed.
Bob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s nearly 3,000 member Organ Transplant Initiative and the author of most of these donation/transplantation blogs.
You may comment in the space provided or email your thoughts to me at firstname.lastname@example.org. And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be an organ and tissue donor you may save or positively affect over 60 lives. Some of those lives may be people you know and love.
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