Live your life to its fullest, then give the gift of life so others can do the same.

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Transplant Stories



NEW LIFE….NEW LIVER

    As a liver transplant recipient of someone who has lovingly and unselfishly donated an organ of their loved one, I am dedicated to help clear up the myths associated with organ and tissue donation. One donor has the potential to save or enhance the lives of 50-60 people. We have approximately 110,000 people awaiting transplant in the United States and 3,100 in Georgia alone. We need to get the word out now. 
    My story begins May 11, 1978. My eight year old daughter was hit by a car and suffered extensive injuries that if the doctors could have saved her life she would have been in a body cast for many years. After 10 days in a coma, the doctors informed us that she was brain dead. This was the most devastating thing that had ever happened to my husband and me and our entire family. For some unknown reason at the time, we felt led to ask if there was anything of hers that could be donated to someone else but the doctors told us the only viable organ was her eyes. Therefore, we decided to donate her eyes so that someone would have the gift of sight. She always saw things with such a happy and joyful way we felt that gift needed to be given to someone to enjoy the beauty she always saw through her eyes. 
    In the early 1990‘s, I was feeling so malaise. I had no energy and no ambition to do anything. This was not like me. I had always been interested in something, doing crafts, and organizing events. I loved life and wanted to stay busy. 
    After many years of seeing doctor after doctor…going through tests after tests…in 2003 I was diagnosed with cirrhosis of the liver due to NASH (Nonalcoholic steatohepatitis). I was in total shock. “How can that be? I don’t drink. I may have an occasional glass of wine or champagne at a celebration. I really don’t like the taste of alcohol.” He said the cause was really unknown but that it probably was fatty liver which had progressed into End Stage Liver Disease (ESLD). We were told the only thing left was a liver transplant. Shock is not the word. Did this mean I may not live? 
    My entire family and all my friends were suffering because they wanted to help me and hated to see me deteriorating before their eyes but we kept having faith in the doctors that they would help me and not let me die before I got a transplant. 
    In June of 2007, I thought my life was ending. I started hemorrhaging. Blood was going everywhere. I had nurses covered in blood; my bed was covered with blood. The nurses emptied 3 or 4 pans of blood and then I went to the bathroom and blood was coming from every open orifice of my body. It looked like a homicide scene. I have never seen so much blood in my life. I was immediately taken off to the ICU and I was screaming, “Please call my husband. Call Fred. Tell him I love him”. I knew there was no way I would ever see him again. No one could lose that much blood and make it very long. By God’s grace and the prayers of many people that miracle of healing did take place and I did not die. I underwent a procedure called Transjugular Intrahepatic Portosystemic Shunt (TIPS) It rerouted the blood through my liver via a shunt but we were warned that it could cause more complications such as hepatic encephalopathy (which is when toxins go directly to the brain because they have not been filtered through the liver).
    My memory due to the encephalopathy in the year before my transplant is very vague. I went through terrible bouts of encephalopathy I had many things happen in that year such as bleeding, paracentesis (fluid in the abdomen) which had to be removed at the rate of 10-15 liters a week, I broke my back from falling due to the encephalopathy, underwent back surgery with placement of rods and screws, infections, in and out of comas and ICU. Tubes fed me, I had machines breathing for me; I had a tracheotomy but I have no knowledge of any of this occurring. My friends and family said some of the times during these months I would appear lucid and would smile and talk, but none of that is real to me. I can only remember dreams, some good and some bad but not very many real moments. 
    On December 23, 2007, I received THE CALL from my nurse coordinator saying, “Ms. Wingo we have your liver, get here as fast as you can”. When I hung up the phone I relayed the message to Fred and my daughter, Jennifer, my grandchildren Cole and Kaylee and my niece, Raven. The house went up in a roar of tears, shouts, and laughing and complete bedlam. 
    All I can say is God was our pilot. I don’t remember how we got to the hospital with all the tears that were flowing in that car. My daughter was on the telephone in the back seat calling everyone we knew to tell them the wonderful news. 
    Then the process of healing began. I had not remembered I could not walk or had not eaten much in a long, long time. I was not aware that I had back surgery. Wow, where did all this come from? Couldn’t be me they were talking about. 
    After weeks which turned into months, I can finally say I was in the Right Place at the right time. God was in control all the time. The word I had adopted in the beginning of my illness “BELIEVE” had come true. God jumped into the middle of another impossible tragedy in my life and turned it into a miracle. I thank God daily for his blessings in my life. I especially thank Him for Fred my guardian angel on earth. I also thank God for all my other angels in the form of support; all my family and friends that were there when I needed them. They never gave up hope that the miracle we were praying for would happen, and it did in the Right Place at the Right Time. 
    It has now been three years since my transplant. There are still days when I feel so tired and I can tell I am not as strong as I was before my back was broken or my transplant, but I do know “every day” that I thank my God for saving my life and pray to be able to pay forward for the gift he has given me. 
    I am an active Mentor for Georgia Transplant Foundation and I try to help others that are awaiting transplant with hope and words of encouragement. 
    I am also a volunteer for Lifelink of Georgia. They provide facts about organ and tissue donation and encourages people to register to be a life saving organ and tissue donor. You can help save lives by designating your decision on the Georgia donor registry at
www.donatelifegeorgia.org or at the Division of Driver Services when obtaining or renewing your driver license. 
    I feel this is another way I can give back to those that gave for me. I will never forget the unselfish loving family that made the decision to donate their loved ones organs in order that I have the opportunity to work to help others. I hope and pray someday to be able to tell them personally what their gift means to me….until then I will continue to BELIEVE!!

Juanita

 

                                            



       SIX WORDS THAT CHANGED MY LIFE

     Six words changed my life.  "You have end-stage liver disease" announced my Doctor after 2 years searching for a diagnosis for my 'mysterious aliments.'  When told I needed a transplant, I thought..wait a minute, I am a card carrying organ donor...wonder if this puts me at the top of the line?  The answer was NO, since UNOS (United Network Organ Sharing) has firm guidelines to make their system as fair as possible.  Due to limited supply of livers, only the sickest receive them!   I kept on with my daily life as "SuperMom" to my 2 boys, taught Sunday School, worked at Georgia Tech's Teaching & Learning Center and continued my hobbies of reading, knitting and collecting Christmas Ornaments for 5 years.  My MELD score never got over a 15 (which is the lowest number u can be to get a transplant)!   My transplant came about due to an "event" that caused my kidneys. liver, and other organs to start shutting down...I was dying. After 2 weeks in ICU waiting for the FIRST matching Liver (finally at the top of the list) I was not going home without a transplant, I received my GIFT OF LIFE on Feb. 3, 2009!!  However, it took 2 months to finally get out of the hospital...liver was great....but had numerous other "issues" going on, so this was one event that I couldn't overachieve, manage and be in charge of the time-line. I had home health care and physical therapy... I literally learned how to walk again (it's like riding a bicycle! :)  Even though I was not in charge, I was determined to survive!
     I  think about my donor and his family's generosity so I could live...and  now, with time, I realize he/she lives on through me.  What an incredible, kind, generous & giving person they must have been.  I made the decision to donate organs at the old age of 32...I hope you don't wait  that long!  Make a difference now...sign a card and let your family know your decision...because someone did...I was alive to see my son graduate from McEachern High School Class of 2010!  How "cool" that is!!!

Cindy
                                                         


                                                           
 JENNIFER'S STORY 
            

    The phrase “the best laid plans of mice and men often go awry” from Robert Burns is very fitting for transplant patients. I was a Pediatric Cardiologist fellow 5 years ago when my plans went awry. I had just finished 20 years of schooling, and 3 years of pediatric residency to fulfill my dream of becoming a pediatric cardiologist at Cincinnati Children’s Hospital, a very long term plan. While on call one night, I felt a little tired and a was a little short of breath after climbing a flight of stairs to my office, so I decided to perform an echocardiogram, an ultrasound examination of the heart, on myself. I found unexpected fluid around my heart, which was strange since I had never been sick in my life. In fact I was the perfect doctor because I rarely seemed to catch illnesses from my patients.
    
Because of the fluid in my heart, I decided to take myself to the ER. It was a good thing that I did because I went into cardiac arrest 6 hours after I performed the echocardiogram on myself. At that point, I underwent emergent treatment and a med-flight to The Cleveland Clinic. Upon arriving there I arrested a few more times and my heart could not be shocked into working order again. To save my life, I was brought to the operating room to have a BiVAD placed to keep me alive until a life-saving heart could be found to transplant. Since I essentially did not have a heart anymore, I lived in the ICU until I heard the news a heart had been found for me.  It had been about a week since the time I was completely normal to finding out I would die without a heart transplant.
    
After my lifesaving transplant, I recovered for 3 months in the hospital and 2 years on disability. I wasn’t able to practice pediatric cardiology anymore due to the activity and risk of infection exposure. In that time I started the Have a Heart Benefit Fund with my friends. We raise between $10,000 and $20,000 each year to help fund transplant patient care, education, and research. I have always loved helping people and this has been a great way to show my gratitude to donor families as well. 
    
I now have my heart transplant care followed at Emory in Atlanta, have gotten married, and work as a pediatrician in the Neonatology department at Emory, while running the benefit. My transplant has made me a more empathetic doctor, since I can truly understand what it feels like to be a patient. It has also made me live life to the fullest even more than before and not take any of my relationships with family and friends for granted. I am forever grateful to those who give the gift of life.

Jennifer


                                                                                 

                                                                                        NICK'S STORY
                    
    In April 1989, my son Nick was born with a three chambered heart, plus three additional heart defects. Each defect had a fancy medical name but all added up to a really messed up heart. 
    
Nick had his first heart surgery when he was five days old and was only given a fifty/fifty chance of survival. This was the first of a two staged surgery. My husband and I were told Nick would need the next surgery when he was two years old. Nick came home after ten days but had to be fed through a tube in his nose. At three and a half months old, Nick required another surgery which was not one of the original planned ones. During this surgery, the nerve to Nick’s diaphragm was damaged and he stayed on a respirator in ICU for seven long and difficult weeks. Just after Nick’s first birthday he needed another heart surgery. This time he almost died on the operating room table. 
    
A few months before Nick turned two I was asked, “How do you feel about a heart transplant?” 
    
We waited for six weeks, living through one false alarm, for Nick’s new heart. On March 21, 1991 we got the call to come to the hospital for the transplant. Before the surgery Nick was a blue color, only having an eighty-five percent oxygen level. 
    
The normal level is between ninety-five and one hundred. It was immediately obvious the Nick had a new heart when we saw him for the first time because he was a nice healthy pink color. The first year after transplant was intense with us making numerous midnight trips to the hospital. In time, the trips decreased. Nick suffered mostly from sinus troubles and ear infections.     
    
Nick grew and attended pre-school, even rode the bus to school his first day of kindergarten. He has learned to swim, snow ski, water ski, and has seen forty-nine of the fifty states and thirteen countries in Europe. He has been a member of Team Georgia at nine of the Transplant Games. In high school, he was a manager for the football team and played tennis four years.
    
He has since started college but had to withdraw when an infection settled on the site where his first surgery was done. At the point of death, Nick went into surgery again and his main vessel, the aorta, was replaced. He recovered faster and with less difficultly than anyone expected. A few months later he needed a pacemaker for a slow heart rate. 
    Today, eighteen years and twenty birthdays later, Nick is doing well despite the hard road he has traveled. He is attending college again and plans to study sports management. 
    
Heart transplants are not a fix, but a treatment, so we still worry about rejection and the future. But with all things said and done, it has been wonderful to see Nick grow up, and turn into a young man that understands the value of good health. Nick’s life wouldn’t have been possible without the precious gift of a heart transplant.

Susan



 

  
   ALICE
’S STORY

 

     My name is Alice Koone.  I am 48 years old.  I received my double lung transplant three years ago today ( Dec. 13 ).

     About 10 years prior to my transplant, I was diagnosed with a lung disease.  I was told then that I would need a lung transplant in about 10 years.  I was only 35 at the time and felt fairly well so I sorta dismissed it.  I continued to see my lung doctor every three months, keeping a check on the progress of my disease.

     About 7 years later, I began to start to feel the effects of the disease.  I continued to teach school everyday, and tried to ignore the symptoms.  Two more years passed before I would admit that I had to do something.

     My husband and I love to attend NASCAR races.  We were at a race when I realized something was definitly changing.  I was weak, out of breath, and swollen.  After that race, I began to really slow down.  My doctor told me I needed to be on oxygen, but I would give up to that.  At a later race,  I could not walk more than 15 feet without stopping to rest.  I thought that would be the last race I would ever get to attend.

     When we returned home,  I went to the doctor.  I told him I was now ready to try to get on the list for a lung transplant.  He put me on oxygen.  I went home and waited for my evaluation. From that time until I was place on the transplant list, my blood oxygen level went from about 89 to about 84 with the oxygen.

     School started that fall.  I continued to try to teach.  I would take my oxygen to work with me.  After about 4 weeks into the year, I was using so much oxygen that I couldn't take enough to work to make it through the day.  I had to give up my job.

     At home I wasn't able to do anything but sit.  I would try to shower and dress each day, but it would actually take me about 4 hours to do that.  I hated to go to sleep at night because I didn't know if I would wake up.  I hated to wake up because I knew that this day would be as difficult as those previous.  I was then placed on the transplant list.

     Six weeks before I got my transplant, I got really, really weak.  I called my husband and told him to come home and get me.  I didn't know where I wanted him to take me, I just knew that even with all the oxygen, I couldn't breathe.  We went to the doctor. After a brief examination, the doctor told my husband that I probably would not live through the night.  I was transported to the hospital where the transplant was to take place.  There they found that I had blood clots in my lungs. I stayed in the hospital for two weeks and then went home again.  (This time on 10 liters of oxygen 24/7.)

     Each day was pretty much the same.  I waited for "the call".   I held my phone all day and slept with it at night.  I wanted so much to live.  I had so much to live for, a great husband, my son who was a freshman in college, family, and friends.  But as I waited, I was getting sicker and weaker.

     Then,  the call I had waited for finally came.  I was awakened by the phone at about 3:35am.  I looked at the area code and I knew this was the call that I had been waiting on.  I answered and listen to my instructions.  I woke up my husband.  Within 30 minutes, we were on our way.  I called my family to let them know.  It was a ride of mixed emotions.  I was so thankful for the opportunity of life, yet I knew there was a family somewhere who had just made a very difficult decision.  All I could do was thank God for the chance that he was giving me and for Him to comfort this donor family.

     My transplant was successful.  Within four months I was able to attend another NASCAR race (something I had thought I would never be able to ever do again).  Today , I am able to do most of the things I thought that I would never be able to do again.  My husband and I love to camp, travel, and just enjoy life together.  This past weekend I watched my son graduate from college.

     Words could never express the gratitude I have for the donor family.  Because of their act to donate life, their loved one continues to live.  I volunteer now to help others who are waiting for that "call".  I hope to educate others about organ donation.

     I have always liked the motto...Live, Laugh,Love.  Now I like it even more because I can!   LIVE, LAUGH, LOVE!!

 

Alice

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