My husband Shelton had a liver transplant the end of May 2003 just as Sheltie was finishing his exams as a sophomore at Millbrook.
After Shelton’s transplant I became a volunteer with the New York Organ Donor Network as my way of thanking the family who made the decision to donate their loved one’s organs. I hope that in telling our story more families will receive the incredible life saving gift that we did. I am here tonight to ask all of you to consider registering to become organ donors.
There are approximately 88,000 people on waiting lists for organs. Each day 17 people die waiting for a transplant. A new name is added to the list every 14 minutes.
The truth is the need for organs continues to rise and the donation is static. Critical heart, kidney, liver disease doesn’t have to end in death. With the technology we have today we can safely transplant organs and in most cases the recipient can lead very normal lives, my husband is a great example of that.
Shelton was diagnosed with Hepatitis C when Sheltie was 9 years old. Hepatitis C is life threatening blood virus, which attacks the liver causing chrissois or cancer of the liver. We were very fortunate that the virus really didn’t make Shelton too ill, and our day-to-day life continued, always with a little apprehension of what was ahead, but also with understanding that each day really did count. Shelton was determined not to let the virus take control of his life. I think when you are faced with an illness you have to make a choice to feel the best that you can, to enjoy each day as much as you can, and in my family humor always plays a big role in facing scary and uncomfortable situations. One of our most used phrases for years was “ Not bad for a guy with a terminal disease.”
The day after Christmas in 2002 when Sheltie was a sophomore, Shelton came in from or barn and said he didn’t feel very well. He had been placed on the transplant waiting list during the previous spring because an MRI showed two spots on his liver, which the doctors were concerned, might have been tumors. So, when he said he didn’t feel well we contacted the transplant team in NY. They were not too alarmed by the symptoms and suggested we wait a day or two to see if he hadn’t just eaten way too much roast beef and too many Christmas cookies. Within 24 hours Shelton was a different person, his face was yellow, he was lethargic, his feet were so swollen that he couldn’t put on his shoes, and his abdomen was so distended he couldn’t button the trousers he had on the day before. The transplant team suggested we go to the emergency room at the local hospital.
Shelton was admitted to the hospital with a diagnosis of acute kidney and liver failure. Because fluids which should pass through the liver were unable to and because Shelton’s liver wasn’t making the protein needed in his blood, his body fluids began seeping out of his blood stream into his tissues which caused alarming swelling. His legs became so swollen that he couldn’t bend his knees, his legs were taut like a cooked sausage except that when you pressed in on his legs your imprint stayed like those pillows that conform to your body. We put silk sheets on his bed because it was so painful for him to move that we thought we could slid him on an off the bed, when we were able to move him the silk sheets were blotchy from the fluids that had finally seeped out of his body.
In just a matter of days Shelton gained 24 pounds, not so alarming to me as I have also been known to do that, but in Shelton’s case it was all fluid. We conferred with Shelton’ transplant team every day, in addition to his kidney and liver failure he contracted some horrible infection, and although his liver function was poor enough to warrant a possible transplant, he was too ill to be transplanted.
The goal of our local hospital was to increase and stabilize Shelton’s liver and kidney function and treat the infection. It took three weeks in the hospital to stabilize him, a seemingly much shorter time in Shelton’s mind, because on day 18 of our stay, Shelton looked at me, smiled and said “ wow I feel much better than when I got here yesterday. As soon as Shelton was able to leave the hospital we met with his transplant team in New York.
There are several things that stand out in my mind from that day. I had to drop Shelton off right in front of the clinic because he was too weak to walk a few blocks. The waiting room was packed with people waiting for liver transplants. Several people were in wheel chairs, all were yellow, some had severe acieites, abdominal swelling, some had canes, everyone was in serious trouble. The Doctor’s office was tiny and dreary and it was in this tiny office that Dr. Brown told us Shelton wouldn’t live long enough to get a liver. His body was too ravaged, and the waiting list in New York was too long. After leaving that small office I had a much clearer understanding of why everyone in the waiting room had that look of desperation.
Well, we needed to find a liver for Shelton. The United States is divided into 11 regions for transplantation, and it is possible to be placed on a list in more than one region. We researched the waiting period for liver transplantation and learned that one of the shortest waiting periods is was in Florida. Shelton has an office in Orlando and the Mayo Clinic is located in Jacksonville Florida, 2 hours away. We relocated to Orlando, and Shelton worked until the day of his transplant. It was a difficult time for us; we were away from Sheltie and away from our home. Shelton went to work every day, he was on significant diuretics to try and keep the swelling in his body at a level, which enable him to move around. In the morning he looked pretty normal, but by each night there was so much fluid in his legs and abdominal area it was hard for him to move. Because his liver was functioning at such a marginal level, and his body was producing such a small amount of protein he started losing muscle, and his upper body became skeletal.
The Mayo Clinic called us in the middle of the night saying they had a liver offer for us, and that we should come to the hospital. We were advised that by 8am we would know whether it was a match for Shelton. Both Shelton and the new liver had to go through many tests prior to making the determination that there was a match. At 8 they let us know that the surgery would take place. Between 8-9 am every doctor, nurse and medical tech, at the Mayo Clinic came in to discuss the procedure with us and to let us know that Shelton may die during the operation. It seemed like the wait between 1:30 and 8 would never end, and then in that last hour, I just wanted everything to stop, I was too afraid that Shelton might die. I was afraid that this miracle that we had been given was too much. It was a really disturbing feeling watching Shelton enter the operating room, I felt like I was observing something that was not real.
At noon the operating nurses called to say Shelton’s liver was out of his body.
At 3:30 they called to say the new liver was in and they were starting to close.
At 6:30 Sheltie arrived at the hospital, and in the next elevator there was Shelton, and all in all I think he looked pretty good.
Shelton just wouldn’t be here today if he had not received a liver. Shelton is amuno suppressed he takes anti-rejection drugs each day, he can’t eat sushi, or rare meat and he can’t eat grapefruit. We are very careful about germs, and Shelton wears a mask in crowded enclosed places to minimize his contact with germs but other than that he is just like anyone else.
Please, please consider registering to be an organ donor.
In 2000 at an International Congress on Transplantation the beloved Pope John Paul the second said “ There is a need to instill in people’s heart, especially in the hearts of the young, a genuine and deep appreciation of the need for brotherly love, a love that can find expression in the decision to become an organ donor.” All major religions either support organ donation, or leave the decision up to the individual.
In order to become a donor two very important things must be in place. First you must be pronounced brain dead by a physician and you must have consent from your family. Because of the recent death of Theresa Schivo there is much debate about brain death, coma and vegetative state, but among other things brain dead means there is irreversible loss of all brain function. Brain dead patients are unresponsive and on a ventilator. Most brain dead patients have major brain trauma, severe stroke or loss of brain oxygen during prolonged cardiac arrest. The physicians who make the determination that someone is brain dead are in no way involved with the team of doctors who recover the organs from the donor. The second condition, which must be in place, is consent from you family. It is critically important that you have a discussion with your family about organ donation. It is very difficult to have this discussion at a time of sudden loss. About ½ of the people who are approached about organ donation do not consent mainly because they are unaware of their loved one’s wishes or they have been misinformed about donation. Studies show that 85% to 98% of the families who have consented to have their loved one’s organs donated have a felt a positive impact from their decision at their time of grief. There is no cost to the donor family, and the recovery of the organs is done in a sterile manner, a normal funeral service, an open casket if you wish is fine. Each donor can save up to 8 lives through organ donation and enhance the lives of up to 50 people through corneal bone, skin and tissue donation.
In 2004 the NY metropolitan area there were 60,000 reported hospital deaths, of those 60,000, 600 were determined possible donors, of the 600, 298 became organ donors roughly the population of Millbrook. Just think if the other 302 people had chosen to be donors 2,416 lives may have been saved through organ donation, and up to 15,100 lives enhanced by tissue, corneal and bone transplantation. 9 out of 10 people surveyed said they supported organ donation. 34% said they were aware of how to register to become donors, 52% said they did not know how to become donors. In New York State you can register to be a donor when you apply for a drivers license. I have with me tonight pamphlets, entitled “Life Pass It On” which briefly explain organ donation, and you can complete the enrollment form and give it to me, or there is an address on the form indicating where you can mail the completed form. There is also a Family Discussion Card, which you can complete. You may go to www. Donatelife.net and learn how to register to donate in any state. You can also just go to any search engine like google and search for organ donation, and you will be linked up to all kinds of incredible information.
My husband Shelton wants to say a few words, and then anyone who would like to register to become a donor or read more information, please come forward and pick up a brochure. I have pens and bracelets promoting organ donation.
April is organ donor awareness month; please consider making the decision to register to give the “Gift of Life.” Thank you.
Shelton Lindsay:Since my transplant I have had to throw my beloved atheism out the window and reexamine all my beliefs because there is life after death. Spiritual, Scientific, beautiful life. I have scientific evidence of it, atheist and agnostics need a lot of Science. The paradox is I died, and I am here alive and well, Science you bet, Spirituality absolutely. This didn’t happen entirely because of an omnipotent God either. It happened because of the blind faith of a single individual who in the grace of death donated a gift of Life to me.
I don’t want to get to far into the weeds here, after all our hope is you will sign a Donor Card tonight, not hang garlic cloves around your neck when you see me coming. Donors do live on after death in the new lives of the recipient. Your donated organs can sustain life in numerous individuals this is fact. (Science)
Now here is the cool part, this is only my experience about what happened to me and is totally open to your interpretation. (This is the freaky Spiritual part) After the transplant I became aware of a new voice inside me. At first it confused me however over the pursuant several weeks I realized it was my donors imprint. This was a very unexpected sensation quite startling and wasn’t anything I had ever before experienced.
Think of it this way: the food we eat, your first kiss, walking with your parents on a sunny afternoon a favorite pet. All of these elements make you up as a person and are imbedded in every cell of your body. I know this sound a bit odd but consider the magnitude of complexity that chemically and emotionally makes you an individual. This is what I have been referring to as spirituality the complex relationship of life, death, memory, desires, and passion.
When I was transplanted this new voice was inside of me. My new liver gave me the gift of life. Simply put my body’s engine had a new partner and it was speaking to me. Every day since the operation I remember my new friend; I listen to its story of life as my body’s machinery works in a new found harmony.
This has only been possible through the selfless act of an individual making the choice to be an Organ Donor. Science again with an extra healthy mixture of love of humanity thrown in for good measure, what a fabulous combination to add to you life’s must do list.
By signing a donor card you can profoundly change many lives and be remembered for the Gift of Life forever.
You all know Sheltie, and now you know our story, what I don’t think you are aware of is that one of you took to heart the gift of life. Last year Mike Fuller past away, his tragic death was a loss to the Millbrook community and his family. But what you may not be aware of is that he was an organ donor, he had discussed this at length with his wife and it was a fundamental principle that he believed in. Gina Fuller told me the greatest gift he gave her was the clarity of this principal, so that at the time of his death she knew what exactly what to do, donate his body to someone who could benefit. It is this selfless dedication to the concept of donating life that Mike lived by.
Mike Fuller is the glue in this talk for he is the type of individual we should all hope to become, brave, giving and remembered everyday by those who now share their lives through his gift.
You are all a select group of individuals at Millbrook School. You may write a great Novel, become a famous Dr. or Lawyer. Or you may simply enjoy a quiet life away from the professional dimensions that we so often judge our personal success and importance on. Please make the very personal choice of Donating Life and honor yourselves and Coach Fuller by signing up as a donor. Be remembered for your individuality not just what you can and will become professionally.
Mike set the standard for us to follow please help spread the word about organ donation and remember him for his brave and beautiful act. Thanks for the opportunity to share with you all our stories. Live, Enjoy life, Donate Life help complete the circle.