Grateful to Those Who Gave: Transplant Recipient Tributes
July 2003 will mark the second anniversary of my liver transplant! I am 51 years old and I feel better than I have felt in a long while. I could go on and on about the complications I had in the beginning, and my hospital stay, but that is for another day.
I was diagnosed with hepatitis C six years ago. Before then, I had been sick on and off for three years. My doctors in Chicago weren't able to pinpoint my problem. Then my husband's company transferred us to Central Illinois. In fact, I had just gotten out of the hospital the week that we moved: My blood count (hemoglobin) went down to four - the average healthy adult woman's blood count is 14.
To make a long story short, after we moved I went to the Southern Illinois University School of Medicine in Springfield. They referred me to Dr. Bacon at St. Louis University, Mo., where I was finally successfully diagnosed and placed on the waiting list for a new liver.
I would like to tell anyone waiting on a list to hang in there! I waited two and a half years before I received my gift of life. I still go to the doctor in St. Louis every two months, but I am doing great!
A couple of months ago, I was at the pool for my usual workout consisting of 30 to 40 minutes of swimming, with breaks so I can rest. That day, however, I felt a burst of energy. So I challenged myself to swim a mile without stopping.
After reaching the mile point I still had that energy, so I kept on going. I swam a bit over 1.5 miles continuously that day! Before I had my new lungs, I would have never dreamed of ever accomplishing this feat.
I am 24 years old with a genetic disease called cystic fibrosis. CF, as it's called, caused my lungs to produce a constant thick sticky buildup of mucus, as well as many other obstacles in my life, like causing me to go into the hospital about two times a year since the age of five. In the hospital I received unpleasant treatments to clear out my lungs and I.V. antibiotics to fight the continuous lung infections.
At home I also had to fight this disease. Every day I did breathing therapies and inhalant treatments to keep my lungs as clear and as free of infection as I could. My motivation was to be as healthy as I could, and one day live a normal life.
However, in February 2001 I became very ill. My lungs became more and more congested, so I was admitted into the hospital to clear them out. There, they found that the infection in my lungs had intensified, causing me to lose a significant amount of lung function that I would never regain. This caused me to be on supplemental oxygen at all times.
I also lost a bunch of weight, which made it very difficult for me to fight such a persistent disease with the small amount of energy I had left.
After I came back home I was constantly in survival mode, feeling safest in the house with my oxygen concentrator nearby. I spent a great deal of my time sitting in a chair and looking out the window, because most other things left me out of breath.
One of my favorite things to do is to be as active as I can with my body. I was no longer able to be very active at all. This was not only a sad time for me, but for my family as well. I knew that my lungs were struggling, and something drastic had to be done.
In the spring of 2001 I wholeheartedly made the decision to keep living. I underwent testing for a bilateral lung transplant. Thankfully, my name was added to the waiting list a few months later.
During the 10 months of waiting I was still very weak and fighting hard to make it through each day. I was blessed to have the support of my family and friends beside me.
I know that I couldn't have made it through without them, particularly without my friends from the lung transplant support group. They inspired me with their stories, which were filled with so much light and hope, and they brightened my spirits with their wonderful senses of humor.
Every night before bed I would pray to be gifted with a healthy pair of lungs. One evening in May, I took my time climbing the stairs to my room. I reached my bed extremely out of breath, as usual, but on this night my lungs felt different. It felt as though they were telling me how sick they really were and that they couldn't hold on much longer. They were tired of fighting and after 23 years of battle they desperately needed to rest. I understood and agreed with their exhaustion as I fell asleep.
That night and into the next day my prayers were answered. I received a phone call at 3:30 in the morning with the wonderful news that they had lungs for me. At first I was a bit wary because I had already received a similar call earlier in the month, which ended up being a false alarm because the lungs weren't good enough. I knew that this time it could go either way, but I desperately wanted the lungs so I wouldn't have to suffer another night like this again.
As the middle of the night turned into early morning, I prayed. I prayed with all of my energy, and all of my love, that we would be able to use these lungs. I prayed knowing that each and every one of my family members and friends were praying just as hard. I prayed that my struggling lungs would finally rest.
Most of all, I prayed because I knew that somewhere out there a very special family had lost somebody that they loved so, so much. And amidst all of their tragedy, and all of their pain, they were offering me -a complete stranger in need -the most precious gift ever: a chance to breathe.
I went into surgery and I was blessed to receive two lungs that were a perfect match. I was overflowing with life.
I am very thankful to every single individual at Loyola University Health System who has helped me along my way before, during and now after my transplant. I thank all of the nurses, doctors, surgeons, social workers, lab technicians, respiratory therapists and everybody else for all of their loving kindness. I have always felt as if I were in very good hands at Loyola, and that means a lot to me.
I am forever thankful to my donor family for making the tremendously brave decision to donate their loved one's organ to me during what was surely an extremely tragic time in their lives. My donor family is truly my savior.
I never knew my donor, but I do know in my heart that he or she was a very special person who is loved and remembered by family and friends. I think about this person I never knew often, and send him or her continuous love and gratitude for the strong and healthy lungs given to me.
I also send my donor family so much thanks and praise for their bravery, compassion, and most of all, their love. I hope to meet them some day and tell them this in person. I thank them for giving me this new life. With every inhalation and exhalation of my beautiful new lungs, I finally feel alive.
I also send love and endless gratitude to every single family who has donated their loved one's organs to someone in need. I know this is a tremendously brave decision for them to make, and I thank them kindly for doing so. You are my heroes.
I have a job now. I am the manager of a paint your own pottery studio. I love the responsibility and structure that comes with my job. And I am very thankful that I am healthy enough to get out of the house and do work that I enjoy.
I'm grateful for many things these days. I'm grateful that I can hang out with my friends and family, telling stories and laughing with them. I'm grateful that I'm working a few days a week. I'm grateful that I can walk for long distances and keep my breath. I'm grateful that I can play my didgeridoo, an ancient Australian wind instrument, and share its beautiful healing vibrations with others. I'm grateful that I can swim and dance and feel so free!
But most of all, I'm grateful for the gift that my donor family gave me.
I keep in my prayers those who are waiting to receive an organ. I pray that they can go through this wonderful experience, just as I have.
My name is Steve Ferkau. I'm 43 years old and I have cystic fibrosis. I've lived a dozen years beyond the average person with CF. I've been married to my wife Laura for more than 13 years. I truly believe that I love her more now than when we first fell in love more than 15 years ago.
I struggled with cystic fibrosis for 40 years before I knew of Kari, my donor. She was intelligent, athletic, outspoken and more beautiful than a picture can ever show. Kari passed away in April 2000 and she and her family gave me her lungs. They also saved the lives of several other people.
Cystic fibrosis is a genetic disease. I was told long ago that it primarily affects saliva, sweat and mucus production - I have no idea what the problem with the saliva is, I spit just fine. The thing that takes most of us CF sufferers out is on the respiratory side. In a normal person there are tiny hair-like thingies called cilia that move trapped mucus and stuff out of the lungs. Our mucus is too thick for the cilia to move it along, so it sits there like a big culture dish, growing whatever bug comes along. The reason you hear that bone-rattling cough that so many CF people have is that we take action to move it along ourselves. We get ourselves coughing to try to move it out of our lungs.
CF stinks. But for the bulk of my life I was pretty lucky - I went in for annual "tune ups." During those times I spent seven to 10 days in the hospital for professional poundings and antibiotics. I also had a number of "bonus" stays: A few inguinal hernias, probably from coughing my guts out, and a few collapsed lungs that required chest tubes and sclerosing (always a pleasant experience). I remember making a little mental decision after one chest tube and sclerosing in my early 20s that I would NOT do this again. I decided that I would just ride the next one off into the sunset. I think my decision came more from fear than pain. Fear of whether or not next time they'd be able to fix what was wrong. But then I fell in love. I highly recommend it. I found that love trumps fear, and I had the next collapsed lung fixed.
For the last three years before transplant, I was on 3 liters of oxygen around the clock. I probably could have used it long before, but I guess I had vanity issues. My lung function had dipped to about 10 percent of a normal person. It's amazing how little lung volume you can gradually learn to survive with. It took me 25 minutes to walk less than a block while I was toting my oxygen tank.
We did therapy four times a day for two hours per treatment. For eight hours every day I had someone hovering over me and pounding on my chest, and pounding hard enough that we broke ribs six times during those three years. I had a wonderful therapist who did two treatments in the morning. My wife, also wonderful, came home from work and did my afternoon treatment. And my sister, again- wonderful, drove over at night to do my last treatment. And they did it seven days a week, every day for three years!
I was listed for a double - lung transplant on Sept. 8, 1997. At that time I was told that I would likely wait a year, give or take a few months. I waited more than two and a half years. That's 31 months. That's 134 weeks. That's 943 days. But I wasn't counting.
While I was waiting for my transplant, after the last of my two-hour therapy poundings each night, I would sit in the dark in my bed for about 30 to 40 minutes before I went to sleep. I would say my prayers. I'd ask a lot of people for some help. Sometimes I'd drift off for an hour or so, wake up and continue where I left off. I'd always think about my future donor, and I'd pray that they were enjoying their life. And I'd think that maybe I could hold out just a little bit longer and give them a little more time to finish what they had to finish. When the wait started getting longer and longer, and I started getting lesser and lesser, there were more than a few times that I looked up at Him through the corner of my eye and said, "Lord, I hope you know what you're doing!" Apparently he did.
I had four false alarms before I received my new set of lungs. Every time I got a call, I realized that someone had just passed away, and I knew that some family was suffering. And I knew that they were also reaching out to try to save my life.
Meanwhile, a beautiful young girl was having dinner with her family one night in Iowa. She was intelligent, athletic, stubborn, outspoken, and more beautiful than a picture could ever show. Her name was Kari. The topic of organ donation came up, and she said without hesitation that she didn't understand why someone wouldn't want to help someone else when they were through with their life here. A few weeks later, she and her sister, Lys, were swapping driver's licenses and checking out one another's pictures. Her Mom says Kari "jumped all over" Lys because she didn't have organ donor indicated on her license. A few weeks after that, her family had to make a tragic decision. And at an incredibly devastating moment in their lives, they reached out and saved mine. I received Kari's lungs on April 8, 2000. They've shown me something that I've always known . . . that there is pure goodness in this world.
My first dinner at home after my transplant, I sat at the table with Laura, my mom and my sister. After dinner, and for little apparent reason, I started to cry. They all looked at me, a little concerned. When I explained to them why, they started crying too. It had just dawned on me that we didn't have to get up and go pound on my chest.
Nowadays, I open my eyes in the morning, stretch and take a breath- and I don't hear any gurgling! It's been a year, and I still walk around in complete awe of how this feels! The doc gave me permission to swing a golf club six weeks after my surgery. So I fit a few rounds into my schedule last summer . . . I still stink . . . and it's absolutely wonderful! After three years off, I was back at work 10 weeks after my surgery. There is a double flight of stairs from the trading floor to my offices that I hadn't climbed in 10 years. I didn't even go DOWN them in the last five years. Now, every chance I get, I bound up those stairs two steps at a time. And every time I get to the top I smile.
For the past 40 years I've had to work every day to stay alive. Now, I still have to do a lot. I constantly monitor my health, and I take 40 pills and inject insulin daily. I deal with illness. I'm afraid of what the future will bring. But instead of being reminded of my condition by discomfort or difficulty, I'm reminded when I walk or run or laugh or talk or sing!
I've been in contact with Kari's family for about two years. In June, 2003, Laura and I drove out to Iowa to meet them. We met Kari's family, close friends and boyfriend. We also met Sandy, the beautiful recipient of Kari's heart. Meeting all of them was one of the most special times in my life. Hearing stories about Kari and seeing so very many pictures brought her so much closer to my heart. The weeks after meeting them felt more emotional for me because meeting them gave me a better understanding of the depth of their loss. I also had an understanding of the love that surrounded Kari while she was here.
Kari was a leader on her high school volleyball team. When Kari passed, her school retired her number: 13. The following year, which would have been Kari's senior year, her team dedicated their season to her. Her teammates created a beautiful practice t-shirt in her honor. They gave Kari's family a few of the shirts and on Kari's birthday, her Mom sent me one.
It's one of my most prized possessions in the world. I wear it when I do any athletic event that I would have never dreamed of doing before I received my beautiful lungs . . . and sometimes I wear it just to feel special.
Because of Kari and her family, I ran the Y-Me and the Chase Corporate Challenge last year! In February I climbed 94 floors to the top of the John Hancock Building! The American Lung Association hosted the annual Hustle Up the Hancock to raise money in the fight against lung disease. Kari's family was just overwhelmed (as was I) at the outpouring of support I received. I've told so many people about Kari, and I know very well that the insane pledges I received was as much a tribute to her and her family as it was to me!
It's difficult for me to share the joy I feel and at the same time reconcile that with the loss I know that Kari's family has suffered. I do know that what they did was a purely selfless act. Kari and her family did not just save my life; they gave me a life I've never known. I've never, EVER been able to breathe this well. I don't know if I can do anything to ease the pain they feel, but I will always do my best to honor the gift they've given me, and the loved one they lost. My wife, my family and I will never forget what Kari and her family has done for me.
When I talk to groups about organ donation, I begin by showing pictures of Kari. Then I lead into the fact that she and her family saved my life. She was a truly beautiful young lady and I learn more about her all the time.
I'm a fanatical supporter of organ and tissue donation for obvious reasons, and there's a story I love that applies to donation:
One night along the East coast somewhere, there was an incredible storm. This storm washed up thousands of starfish onto the beach, where they lay in the morning sun. A young boy came out and furiously flung the starfish back into the sea. A man strolling along saw the boy bustling. He walked up to the boy and asked him why he was doing it. He told the boy that there must be 10,000 starfish. He said the boy could do this all day and never make a difference. The boy looked at the man, a little puzzled, as he reached down and picked up another starfish and flung it out to sea with all his might. Then he looked up at the man and said, "I just made a difference in the life of THAT starfish!"
When I leave this place for good, I would like the world to have been a better place for my having been here. I personally know that there is a child, and a family, who've made my world a better place. Let's fling starfish!
Hello my name is Volita but I am also known by nick-name, Lisa. I have two boys, ages 21 and 14. I would like to talk to you about something most people hate to talk about, and that is death.
How many of you know that we all have to pass that way one day? What happens to these old bodies when we leave here? One thing that I do know, and heaven knows, is that we need organs and tissues down here.
I know you might be saying, “Who is she talking about organs?” Oh, I'm sorry, I didn’t tell you, I am a kidney transplant recipient.
I celebrated six years of “life” on Jan. 21, 2005. God gave me a second chance at life and I have to share the good news wherever I go. Fourteen years ago I was walking around the world with high blood pressure and I didn’t know it. It then turned into hypertension. Because it was untreated, my organs and bones began to deteriorate. People, high blood pressure is serious - It can destroy the kidneys and other organs of the body. That’s what happened to me, which led to end stage renal failure.
After being on dialysis for eight years, my life was saved by a Good Samaritan who had signed the back of their driver’s license to be an organ donor. Please talk with your family and share your life and share your decision. God Bless America.
The Flower and The Fighter
The doctors said "her heart won't do,
So now we must go in there."
What happened next was quite a ride;
You really should have been there.
The highs were high, the lows were low,
Some cheering and some weeping:
It's safe to say for those few days
That only you were sleeping.
The surgeons did a brilliant job,
But one time not too clever,
They tried to shrink the heart a bit,
Yet you've got more than ever.
Until that time you might have though
That only people love you,
But now we know there surely is
A loving God above you.
So once again you lead the way,
The flower and the fighter...
Because of you we hold our loved ones
Just a little tighter.
Written for heart transplant recipient Aimee Zabrin by family friend, Mark Golan.
Aimee received a new heart when she was 14 years old.
My story is about my father, Richard Hemingway. He lives in Munster , Ind. , and was a high-school teacher/counselor/coach who was always giving time to help students and the community.
Unfortunately, Dad’s kidneys were failing due to years of unchecked high blood pressure.
In the spring of 2001, Dad was told that he would either need a transplant or would have to go on dialysis. Without giving it a second thought, I told him that I would be his donor. I am the first-born of his six children. My mother was not too thrilled about my decision – she didn’t like the idea of her first-born being a donor and suggested other family members be considered. I knew in my heart that it would come back to me.
The year prior, I had just started a new company manufacturing parts for the aerospace industry. My dad shared in my excitement about the new business, and he would help out by working odd hours to keep production going. I also have three children (Joseph, age 9 who has special needs), and Heather and Nelson (5-year-old twins).
After several months of testing family members for possible kidney matches, Dad’s younger twin brother and sister along with some of my younger siblings were all ruled out as matches. I was found to be a match.
Dad did not drink very much. So, during the months prior to the transplant we would joke that afterwards he was going to have cravings for dark beer (my favorite). On April 16, 2002 , with his kidneys functioning at 12 percent, my life changed forever. After the procedure in recovery, when I was just waking up, he rolled over by me and said, "You were right, I do have a craving for dark beer!"
During the next few months, as I started back into day-to-day business operations, I realized that I had made a difference in his life and everyone who came in contact with him. As I started back into those 60- 70- and 80-hour weeks, I thought I could make a living for my family but I wanted more. I wanted to make a difference in more people’s lives.
So, in August of 2002, I sold my share of the business. I am now volunteering in my children’s classroom and working with Junior Achievement in southern Cook County . I have a started a financial services business and am making a difference in other families’ lives by showing them how money works so they can change their families’ future and their children’s futures.
I help 501(c) groups start up retirement plans and do seminars in the school district.
Life is great!!!!
Yesterday is history.
Tomorrow is a mystery.
Today, today is a "gift." That is why they call it the "present."
As an entertainer for 45 years, I also had juvenile rheumatoid arthritis since age three. At age 30, I had both hips replaced in Chicago, and in 2011 I had a knee replaced in Las Vegas. In spite of my lifelong physical sufferings, I managed to record on three albums with successful bands through my sheer determination to not let my disability stop me.
Sometime before hepatitis C was able to be discovered in blood, I had already had several surgeries. Because I've never done drugs, the doctors surmised that bad blood during a transfusion at surgery must have exposed me to hepatitis C. It was discovered before one of my hip revisions in 1994.
Through the years leading to 2013, my ailment became worse and worse. I was admitted to Northwestern Memorial Hospital in Chicago on October 1, 2013. Through a miracle from above, I received a liver transplant on December 2, 2013, a mere month after having been put on the transplant waiting list. So as not to worry me more than I was already worried, my brother didn't tell me until after the transplant that the doctor told him I had two months to live.
Five months after the transplant, I am now living in California, and there are no complications. In about one month, I should be ready to start performing again and making people smile and sing with me again.
This second chance in life — how I can ever repay the donor's family except to thank them profusely for their relative's donation and for giving me the chance to continue as an entertainer. There is a God.
I was diagnosed with hepatitis C, cirrhosis and hepatoma carcinoma six years ago. My liver was failing and I had multiple tumors, but I never gave up. By February 2003 I was in my last stage: I was yellow from head to toe and swollen all over. Somehow I knew that if I didn't get a liver soon, I was going to die.
And then I was blessed by a beautiful family who gave me the gift of hope. I don't have words to express my gratitude to that family. God bless them always! Thanks to their decision, I am alive today. A part of them will be with me forever, and I hope that someday I will have the pleasure to thank them in person.
Polycystic Kidney Disease (PKD) is a tradition in the Ninesling family. My father, as well as his father, had PKD; and there is a 1-in-3 probability that it will be handed to my (future) children.
My father was 16 years old when he lost Grandpa Ninesling to PKD. At that time, kidney dialysis was in its infancy and Grandpa died in a short time.
Dad was 48 when his kidneys failed; I remember the moment vividly. After a year of dialysis, he received a cadaver kidney. Dad, and the kidney, lived on for another 18 years!! He had a tough life, but always was very thankful to the family that made the sacrifice.
Less than two weeks ago, I received a cadaver donor kidney. I couldn't feel more blessed and I ask God every day to send positive energy to the family of the deceased. Their gift has given me a second chance at life and I am determined to carry on for them.
The Gift of Hope made my blessing possible; YOU made it happen by becoming a donor. Thank you for your gift. And, thank you for a second chance at life.
Best to you and yours,
I was diagnosed in March of 1999 with Alpha One Antitrypsin Deficiency, and was told that I would eventually need a liver transplant. My first question was 'how long would it be before a new liver would be necessary?' The response was that it could be at any time, or it could take years. In my mind, I decided that years would be better.
By December 1999 I was totally incapacitated. I started taking the necessary tests at the University of Chicago Hospitals to make certain that I would make it through a transplant operation and have a reasonable chance to survive with a new liver. They gave me a pager —as is the norm when awaiting a transplant —and for the only time in my life I agreed to keep such a pesky machine with me. As it turned out, the one time it did vibrate proved to be a wrong number. The notification of a viable donor liver came by phone in the middle of the night in April 2000.
My wife and I were woken from our sleep, and we were not at all ready for such an occurrence. Since she does not drive at night, and I was not in any condition to do so, we had to wake one of our friends who lives nearby. He took us from our home in the Northwest suburbs down to the Hospital in all due haste.
I was extremely fortunate to have received the new liver. Since my transplant, I have been able to enjoy the birth of my second grandchild, as well as go back to work full-time with a wonderful company.
The doctors, nurses and staff at the U of C Hospitals, as well as at Northwestern Memorial Hospital (where I now go for the necessary follow-up services) have been fabulous. Dr. Alfred Baker's ability to transfer confidence in such a traumatic situation is something that is rarely seen, and it is fully appreciated by me.
I know that someone else no longer exists, and it is that loss that has allowed my life to go on. All I can say is thank you to that person's family. Thank you from myself, as well as the rest of my family, for the tremendous gift I received. It is something that my family and I cherish daily.
For 10 years I lived with diabetes. Even though I was aware that the disease was damaging my kidneys, I did not stay on top of the situation. I experienced other minor complications associated with the disease but did a much better job of managing these problems. Still, I was not very aware of any problems with my kidneys. I did not know all of the things the kidneys do to keep the body working right.
It was quite a shock when my kidneys started to shut down completely when I was 48 years old. I started feeling very bad, very quickly. My blood pressure was 300 over 100 and my ankles became very, very swollen. Over the next two-and-a-half years I was on peritoneal dialysis. The nerve damage in my legs worsened quickly and I lost control over my right foot. I had a sharp decrease in energy that worsened over time. I had to be on dialysis 10 hours every night. I tried to go to work but I missed a day or two every week. My overall quality of life degenerated slowly but surely, and I became very depressed.
I was not sure how much longer I could survive. Then, a couple of days before Christmas I got the call that a kidney/pancreas was available. This meant, of course, that someone had passed away. But this person gave to me and several other people the most precious gift that can ever be given: the gift of life and hope, and a chance to return to living.
On Christmas Eve I received my transplant. I now feel better than I have felt in over 10 years. I am working full-time plus overtime fixing big machines in factories. I have a life after work instead of running home to hook up to dialysis. My wife and I look forward to the years to come.
I cannot find the words that properly describe my gratitude to the thoughtful donor and their family for the life they have permitted me to have.
I feel that it is beneficial to the public at large to understand the emotions and psychology of dealing with a chronic illness (in my case Type 1 diabetes, or juvenile diabetes) and with the impact of ultimately undergoing an organ transplant operation to enable me to continue my journey through life. I am convinced that the mental and spiritual aspects of one's being have as much to do with a successful operation as the sheer physical process of recovering and transplanting organs.
When I was a sophomore in college, I started exhibiting the classic symptoms of juvenile diabetes. These included extreme thirst and subsequent urination, significant weight loss (around 25 pounds), a cottonmouth sensation, blurred vision and an inability to concentrate. You would think that I suspected something was wrong, but I resisted going to the student health center because it was in the middle of the intramural basketball season. Ultimately, the fact that I could not run the length of the floor without stopping for a long drink at the water fountain is what drove me into the arms of the medical community.
Upon my visit to the student health center, they took a blood sample because I had told them that I thought I had mononucleosis. By the time I got back to the fraternity for lunch there was a message telling me to immediately return there, that they had made a mistake with my sample, and needed to repeat the test.
So I ate lunch, and trudged back through the snow. And waited for my name to be called. And saw many kids come and go. And waited. And was finally told that a doctor wanted to see me, so I kept waiting. I wore a path in the carpet between my seat, the water fountain and the bathroom while I waited. I sat for more than five hours. By the time I met the doctor I had worried myself into a state of high anxiety.
As we sat in the room, the doctor told that he was a specialist in endocrinology, and that I was lucky that I had come in on a Monday because it was the only day of the week he visited our clinic. Then he said that I was diabetic, that I would be injecting myself with insulin every day of my life, and that they were calling an ambulance to take me to the hospital to start getting my blood sugars under control. I was told I would be on a very restricted diet, and testing my urine many times each day to check my sugar levels. Also, my life expectancy would be significantly shorter, and that among other things, I would become more susceptible to heart disease, stroke, circulatory problems and vision problems.
The year was 1966, and the level of knowledge about diabetes was significantly less than it is today. I was told that my pancreas had either stopped producing insulin, or that the insulin it did produce was no longer being processed by my body. While essentially true, that barely scratched the surface as an explanation. And they believed Type 1 diabetes was an inherited disease, although I was the first on either side of my family. Regardless, my body could not effectively burn the food that I was eating, and instead was burning fat cells to compensate. Thus, the weight loss and constant thirst.
(Currently, a leading theory for the cause of juvenile diabetes is that it is an autoimmune disease. It has nothing to do with your family history, nor with the types of foods you may have eaten during your early years, nor with being a couch potato. What happens is that your immune system is turned on by the presence of a foreign body or bacteria, and it attacks. Unfortunately, the immune system receives a mixed signal and kills the insulin producing cells in your pancreas, as well as the original source of the problem.)
The news overwhelmed me and I burst into tears. I had known nothing of this disease at 1 p.m., and now I felt that I was on the verge of falling over a cliff to a painful death. However, from that point on, I wouldn't allow myself to cry about being diabetic, nor would I ever ask "why me?" What would be the point, and didn't the doctor tell me that I was lucky and that any further delay in the diagnoses would have resulted in a coma and possible death? So I just kept those feeling tucked away, not talking about them, but always aware of their existence.
I was already a pretty disciplined person, so adapting to the injections and testing was not especially difficult. The hard part was dealing with the food restrictions, especially if I didn't want to be the cause of my own demise. "Don't eat these foods" became their mantra (especially candy, desserts, salt, carbohydrates, nuts, fats - essentially the foods with the highest appeal to a young adult).
After five days in the hospital I thought I had regained some control over my life. My blood sugars and diet were regimented. And not only was I alive, but I could plan for the future. So, I went to grad school. Then I started a successful business career. I worked for a Chicago bank as a portfolio manager in its trust department, then for a favorite uncle in Los Angeles, where we built up a small company and subsequently sold it to a corporation whose stock was traded on the New York Stock Exchange. Then I became a commercial real estate broker. Upon moving back to Chicago, I became a member of the Board of Trade, where I could pursue a lifelong dream to trade commodities in the pits. I had the freedom to essentially do what I wanted with my life. Indeed, I was lucky.
On a November day in 1993, my internist reviewed my latest blood test results and asked me to come back because he thought that the lab had made an error. "Lab test error" - those dreaded words were back. You hold your breath, hoping for the best but expecting the worst. Especially because by this time, I had become much more educated about the causes and side-effects of Type-1 diabetes, and indeed had suffered from some of these side-effects myself (most significantly some nerve and blood vessel damage in my extremities, including a loss of the core vision of my left eye).
The second lab test confirmed that I was slipping into kidney failure. I felt that I had prepared myself for bad news, but not to that degree. How could I go from feeling okay to needing dialysis in such a short period of time? I later learned that it had really been a gradual process, as the kidneys can keep the human body functioning pretty much normally even if they are only performing at 30-40% of capacity. But this still was the second time I wept about my health. All the tension that I had held inside for those years poured out in those tears. There was a sense of pain and release at the same time.
My medical path became clear. I needed a kidney/pancreas transplant, and needed to get on the transplant waiting list as soon as possible. In the interim, I would go on dialysis, stay in as good health as possible, and get as much help from loved ones as possible. Even though I had felt totally independent during my adult life, I recognized that I could not go through dialysis and transplant surgery without the involvement of others.
Once you are diagnosed with end stage renal failure (that is the official terminology for kidney failure), you enter the world of being a full-time patient. As a diabetic, I thought I had a pretty good understanding of what it meant to be a patient, but I underestimated the amount of time and energy it required to keep myself alive. It called for a major adjustment in my approach to living. Since I would be spending many hours in doctor's offices and hospital labs, the time had to come from my work, my play and my home life. Thank goodness for the wonderful people who made this possible. Their cooperation saved my life.
Once the tests had been run, the side effects of my end stage renal failure identified (most prominent was high blood pressure), and the medications prescribed, I had to choose among three procedures available to me for dialysis. The most familiar form is hemodialysis in which the patient has his or her blood cleansed by a machine, generally three times a week. Each visit takes three to five hours.
The other two forms of dialysis involve running a mix of sugar and water into the abdominal cavity (peritoneal cavity), and then draining it. This requires surgical implantation of a catheter (usually just below and to the side of the belly button), and the hands-on involvement of the patient. For a diabetic to run a sugar solution into one's body sounds contradictory, but the sugar attracts the impurities that are not being expelled by the kidneys into the blood stream. The water provides a way to balance the strength of the sugar, as well as a vehicle with which to rid the impurities.
These latter two forms are called peritoneal dialysis (PD) and continuous cycle peritoneal dialysis (CCPD). I chose CCPD because I felt it would keep me in the best physical shape for a transplant. That was my number one goal, and every decision I made was within that orientation.
Fortunately, my internist and the transplant team were well acquainted with each other, and meshed responsibilities very easily. When you get the call to report to the hospital for the operation, you want to be ready. So what happens in between?
The support team
Your responsibility is to get and keep yourself ready for that call. This means physically and emotionally. You've already been stunned by the diagnosis of kidney failure, and now you have to grasp the possibility of a lifetime on dialysis or pursuing a transplant. You have to go one way or the other, because the third option is no option at all - death.
So you gather your team together - your family, your significant other, your friends, your doctors and anyone else whose input you value or rely upon for support - and you talk about the alternatives. If the hospital has an education program about dialysis and transplantation, you make sure you attend with as many of the civilians as possible. Knowledge lowers the fear of the unknown.
It is important to emphasize that you cannot do this alone. Oh, you can set up the CCPD machine every night alone, and take delivery of the mountains of supplies it takes to keep you going alone, and transport yourself to the multiple doctor and clinic appointments alone, and keep control of your diabetes alone, but you can't do all this and try to live a normal life without help. Somebody has to make allowances at work because you now have a major time distraction; you are constantly fatigued and getting more so as time goes on. You are losing weight (I lost 20 pounds prior to the operation). You don't have the energy to go to the store, or cook, or clean the house. You are probably suffering from other side effects of the dialysis (i.e. dehydration, constipation and light-headedness).
So it is better to fully involve your team before the transplant rather than afterwards. It gives them a warm-up time to get used to dealing with you in an altered physical state. It's not that you won't recover, it's just going to be different for a while.
The transplant team
This consists of the surgeon(s) and staff and the transplant coordinator (generally a nurse). They set up all the tests that determine if you qualify physically and emotionally for the procedure, and hopefully, they will enroll you on the transplant waiting list. They will coordinate your education about what will happen, and they will interact with the various agencies involved with organ donation and allocation. Ultimately, they will arrange for the transportation of the organs, your admission into the hospital and the actual surgery. They will also switch you from the array of medicines you were on to handle your kidney failure and subsequent dialysis to the new array of immunosuppression drugs.
The importance of this group cannot be overstated. They have extraordinary skills and responsibility. Get to know them prior to the surgery. This familiarity can only raise your level of confidence.
The dialysis team
This is a different group of doctors and nurses. After a thorough review of your medical condition, they decide how to manage your dialysis program. These decisions include the number of days and hours per day required for dialysis, as well the mix of sugar and water as described above. They also monitor you for infections and any major changes in your blood chemistry. And in conjunction with your internist, they prescribe the medications required to keep you alive. Generally, these doctors are nephrologists (kidney specialists).
The medical tests
Once you have been approved to be on the transplant list, the transplant doctors want to make sure you will survive the surgery. In my case, a kidney-pancreas transplant would take approximately 10 hours, and being under an anesthetic for that many hours can be dangerous for the heart.
Therefore, they run a series of stress tests to identify your risk levels. Fortunately, I had a baseline history of a treadmill stress test with which to compare the results, and they found enough of a difference to prompt them to go to the next step - an angiogram. Again, they saw an irregularity, and recommended an angioplasty procedure. This was performed the next day, and they cleared any blockage they found. Interestingly, had I not been a candidate for a prolonged surgery, they felt the blockage would not have been serious enough to fix. The purpose was to maximize my chances for a successful transplant, and every decision was oriented in that direction.
Other tests identify whether you are allergic to various drugs used to treat post-transplant patients, including the immunosuppressant drugs, antibiotics and steroids to treat inflammations. The doctors want to leave as little as possible to chance, especially if you have an adverse reaction to a drug.
My first call from the transplant coordinator occurred five months after I had gone on the eligibility list. It was around 12:30 a.m., and I was hooked up to my CCPD machine and had been asleep. I knew immediately that it was Doug, my transplant coordinator, even before answering the phone. He told me to unplug and get down to the hospital within two hours.
I was truly excited, but I knew that I couldn't go because I had developed an infection around the site of my peritoneal catheter and had been taking antibiotics to clear it up. This immediately disqualified me for the operation. Doug was quite disappointed that I hadn't kept him informed. I would go back on the list when I had been off antibiotics for two weeks. This was upsetting, but not devastating. I was moving up the list.
The second call came in September. This time it was on a Sunday, early in the afternoon. I felt certain that this call would be the charm, and reported to the hospital around 2:30 p.m. for the pre-op routine. Everything was proceeding normally, until the resident told us that they had just received the organs and the kidney was not functioning properly. So around 5:30 p.m. they called it off, and told me to go home and to keep my spirits up. We were getting close. We could all feel it.
As the resident left, he said that I could not have undergone the surgery anyway, because during the pre-op physical they had found some signs of internal bleeding. This had to be rectified before I could undergo the surgery. The feeling was one step forward, then two steps back. This time I was highly frustrated, especially by my body. But the members of my family and Peggy, my true love, kept my hopes alive.
The third time was the charm, and the call came on Oct. 30. Again, it was a Sunday, this time around 10:30 a.m. I was out to breakfast and Peggy was at her sister's house getting ready to take her nieces and nephews to the Brookfield Zoo Halloween Parade. As soon as my pager went off I knew that it was one of two people: either Peggy, whom I had just left, or Doug, the transplant coordinator. They were the only two people who had that number.
As soon as I called Doug to confirm the time to arrive at the hospital, I started shaking. I couldn't stop myself. And I shook until the pre-op nurse gave me a sedative on the way into surgery. It was a mix of excitement and fear; but not the fear that you would expect. I was much more concerned about what would happen to Peggy and my family if I passed away. I didn't want them to suffer. I wanted them to celebrate my life, and had even picked out the music for my funeral on the trip to the hospital. I had a good life.
From my perspective, I had worked very hard to get to this point, and I was prepared to take my chances. You have to remember that 28 years had passed since my first diagnosis of diabetes. And as I mentioned, every Type-1 diabetic lives with the fears of blindness, circulatory problems, stroke, heart disease and other complications.
These concerns never leave you. They are there in the morning when you wake up and test your blood sugar. They are there when you travel and worry about transporting your needles and insulin, in case someone in authority doesn't understand diabetes. They are there when you exercise and encounter a low blood sugar reaction. They are there when you eat, and they are there when you go to sleep. A diabetic can choose to maintain or not to maintain him or herself, but they cannot say they are unaware of the act of choosing. I wanted to create a new choice. I wanted to be free of diabetes, and I had finally arrived.
It is now seven years after my surgery and I feel better than I have in at least 10 years. It is remarkable. This is not to say that the journey has been trouble free, but nothing has been insurmountable. I try to view each day as a gift, and it truly is, as someone donated his or her organs to give me a new life. My degree of thanks to the family of the donor is immeasurable, and I try to repay them by living a full and meaningful life. It is as simple and complex as that.
Alan M. Raskin
Laura B. Rothman-Capizzano
This is the story of my mom, Carole G. Rothman, to whom I'll affectionately refer as just "Mom".
Mom was born on August 9, 1941. Born into a loving, two-parent household along with two siblings, a brother and a sister, her entrance into this world was not without complication. She was born prematurely and at a very low birth weight. Some say that's where her medical problems actually began.
Mom overcame the effects of her premature status and although she experienced the common childhood accidents and illnesses, she blossomed into a cultured, multitalented and beautiful young woman. She had, through the years, developed a vast liking and equal curiosity for the medical field. Her father promised her she could attend the college of her choice in order to continue her education and eventually begin a career. Ironically, Mom's participation in medicine would wind up more on the receiving end rather than on the administering end.
At age 18, Mom opted to take the matrimonial route rather than pursue higher education. By age 25, Mom had had three children and a very tumultuous marriage. At age 27, her father, whom she adored, passed away. Following that, Mom, in between the good times, had experienced a series of medical conditions, illnesses and procedures. She maintained two and three jobs at one time and was raising three children. Most of her medical problems were related to the lungs or the pulmonary system. These problems were further complicated by smoking cigarettes since her teenage years and living through constant stress. In 1982, she was divorced and still supporting me, her youngest child.
Mom had always triumphed through the years by living under three simple guidelines: pride, independence and most importantly, doing for and giving to others. She had gained these rare but highly valuable attributes from her stable and loving upbringing. Mom had continued to strive throughout her independent years. She worked full-time, was trained and certified as an ophthalmic assistant and became the medical professional she had always wanted to be. The odds were stacked against her in many aspects of her life as a single, middle-aged woman trying to survive on her own. She had repeated the glory of grandchildren four times over and proudly advertised this glory. And, despite her deteriorating health, she maintained a "just do it" attitude (as she coined the phrase) and lived life to the fullest extent. She worked very, very hard and maintained her independence. She never asked for help, but was always the first one to offer her helping hand, no matter the person, place or time. She was a true giver.
A few years ahead, she was diagnosed with emphysema and COPD (chronic obstructive pulmonary disease). Unbeknownst to most of her friends and family, Mom was growing very ill. She continued her very busy lifestyle: earning a living, planning parties, caring for her mother, children and grandchildren, and maintaining a full social life with friends and other relatives. She had an immeasurable zest for life and for all it had to offer her. She traveled, became involved in the opera circuit and offered herself to various charities. She was such a devoted "people pleaser" that she did not want to "burden" others with her ailments and chose to begin the fight of her life within her own right.
As time passed, life for her was drawing to an end. Her disease was taking control of her and she was, at that time, to make the biggest decision of her life.
In July 1997,with the aid of her personal physician and numerous other medical professionals, Mom chose to put herself on the waiting list for a lung transplant. She had learned through instruction that this was not a cure for her disease, but rather a trade-off. We (Mom and all of those who knew and loved her) were immediately thrust into the very complex world of organ transplantation.
Mom's decision to list herself for a lung transplant and all that it involved was purely based on the simple measure that life is such a priceless gift that it was wholly worth the struggles and setbacks she was yet to endure.
In August 1997, Mom was so fortunate to be called to her transplant center. Unfortunately, another fellow human had perished. But resulting from the selflessness of her and her loved ones, Mom and four other people received an organ donation. Amazingly, one single person was responsible for saving the lives of five other people! Please, ponder the thought of what greater gift could exist in comparison to one human being no longer needing his or her life essentials, and extending those essentials to the next one in need!
Mom received two new lungs and with this extremely miraculous operation, she also received a second chance at life. With the transplant, many risks were involved up to and including death. Again, for Mom, the benefits outweighed the risks. There were no obstacles too great for her to conquer. After all, she had already fooled modern medicine once by surviving with her disease long after they predicted. They just didn't know Mom's inner strength, her determination and her ability to put mind over matter.
For some reason, nothing really ever went easy for Mom. This would be the test of her life. Thankfully, she made it through the transplant. The post-operative care is lifelong and extensive. There is a plethora of medication necessary to maintain functional levels of health and regular tests, and doctor's office visits to monitor such levels. This is the transplant medical team members and support staff became caretakers for not only Mom, but all of us. After all, this type of scenario is definitely a family affair. Without their extensive training, dedication and experience, Mom's new lease on life would not have been possible.
Once again, Mom's strength and perseverance brought her through her post-operative trials. It was three months to be exact. She experienced many complications and re-hospitalizations, but all the while never gave up. She remained focused on getting back on her feet and home again. She also remained focused on all those who needed her, as this is what drove her to keep on living. She would get "knocked down," and I think back and chuckle to myself because all the medical professionals who tended to her would say, "Your Mom is pretty feisty today" or "Your Mom is really aggressive today." I chuckle because that was just Mom revving up her gears to get well and get home. She was a wonderfully compliant patient and did what she was told to do, but when she said, "Enough is enough, I'm going home," she somehow, in some way recovered and, sure enough, went home.
Mom went on for the next three and a half years and followed up her double lung transplant with several hospital visits, prescriptions changed, numerous Doctor's office visits and quite a few close calls.
But, as Mom would naturally do, she maximized every single moment of living. She didn't just take two lungs and run, but rather she devoted herself to putting back into the community that gave her this gift.
She became very active in charitable functions with Gift of Hope and promoting their very noble cause by educating the public about organ donation. She was a human version of a billboard. She believed so very much in the remarkable scientific research and the results that actually saved her life. She just had to spread the word, as she was always sharing everything that was good. Mom didn't stop there. She also personally participated in a drug research program. She expressed to me that it was important that she, as a transplant recipient, help to find new medications to assist people like her. Through time and through hands-on research, Mom felt that one day anti-rejection and other related drugs might become as commonplace as penicillin.
As life for Mom seemed to be on track once again following a 45 pound weight loss, a whole slew of new hobbies and a general feeling of good health (despite some ongoing but functional complications), she was faced with yet another major medical hurdle to jump over.
On February 14, 2001, Valentine's Day, Mom was rushed back to the hospital with an aortic dissection. This was where the aorta in her heart split and she was very near dying from trauma and loss of blood. In fact, I'm told by many medical people and personal acquaintances alike that the vast majority of patients with this type of attack don't survive the initial onset - let alone a 12½-hour surgery that involves many complications. But, there she goes again: Mom, the patient who refuses to take life's challenges lying down!
Much to our relief and gratefulness, Mom made it through. She continuously amazed even the most experienced and educated in the medical community with her recovery ability.
This time, it was a very long and frightening process. Many complications had arisen and Mom was weak. She lay motionless and speechless for almost two weeks. Finally, through non-stop, 24-hour care, the top doctors and nurses in the area, and Mom's iron will, she began to regain her strength, bit by bit each day. At one point, after transferring to a different floor of the hospital, while still on the ventilator and unable to speak, Mom proceeded to write her own "medical orders" on a piece of paper and handed it to the attending physician in intensive care. Her note read as follows: "Put me on a liquid diet, exercise and the bi-pap machine for oxygen." She figured with that, she would recover. She looked at him with pleading eyes, he gave it a try and it was a success.
We all took things on a day-by-day basis. Mom slowly progressed and moved on to the regular hospital floor before eventually going to a separate facility for sub-acute rehabilitation. She - all the while looking like the same Mom we all knew and loved dearly and putting on that "I'm going home soon" attitude - seemed to be different.
She eventually made it to an acute rehabilitation facility, and this was the final hurdle toward home. Once her strength was regained fully, she would be on her way. She had focused on all the functions and parties to plan in the near future and all of the charitable events to participate in.
She worked oh so very diligently in her couple of weeks at rehab. She tried and worked. But yet again, something was different. She continued to do the status quo. She explained of how tired she was and how hard it was to breathe after a long workout. And still, she kept on with her goal of going home on April 18.
Throughout her hospital stays, all of them, Mom had entertained and visited with many family, friends and others. She conducted her affairs directly from her hospital room. She had never once closed the door to anyone. Always giving, always sharing, always positive. She never once let her illnesses get the best of her, for life was too important to her to give up.
Then, on April 7, 2001, Mom had taken ill and was transferred back to the hospital. She had what appeared to be flu-like symptoms and possible rejection. She was taken through many tests and procedures. On April 14, her symptoms worsened. She was then transferred back to the intensive care unit. There, she was tended to by all possible medical personnel and specialists.
All of her closest family and friends were with her regularly, knowing that she was seriously ill this time. Each day, though no one really admitting what we saw, we clung to the hope and, well, expectation, that Mom would pull through, just like she always had. Time was closing in on Mom and on us. She was facing, in her own right, the reality that in life there are no guarantees, that life is temporary with no set time frame and that now, the immense inner strength, emotional power and desire to live was succumbing to the higher power, the law of nature.
This was where the chaplain and the social worker became a fundamental part of Mom's case status. Both of them had been with us since the beginning of the transplant process. They had become enthralled with Mom's "bounce back" abilities and grew very fond of her, and she, of them. Mom had confided in them several days prior to her transfer to ICU that she felt her physicalness, her body, would no longer respond to the emotional and willful commands she dictated.
But, as Mom would have it, she expressed to them that she was still willing to give rehab one more try. This was the epitome of Mom.
On April 18, Mom's sedation was lifted and she was temporarily awakened. She was greeted lovingly by her family and friends and as weak as she was, she managed to express brief but meaningful words of love and concern for us. She held our hands, we held hers.
One of her final messages to me was a simple one word, but at the same time the most complicated and devastating message I've ever heard. She quietly whispered to me that day, "Enough." And then, she closed her eyes and fell back to sleep under sedation.
On Thursday April 19, 2001 at 2:29 a.m., at the tender age of 59, my beautiful, loving and gentle Mom died. And, for those who survive her, a part of us will always feel the void, for when the brightest star ceases to shine, there's always darkness.
In the end, Mom's final wish was to donate her organs - any organs - at the time of her death. But unfortunately, her body had succumbed to infection, therefore making it unsafe to donate. So I, on behalf of Mom, donate this message as one of inspiration, purpose and unity.
I speak for Mom when I say the legacy she truly wishes to pass on to all of those she touched - whether it be family, friend or acquaintance - is: Life is the most valuable and precious gift we can have. Cherish it. Live full. Take chances, for living is worth risks. Love and give to one another. Be patient and understanding, for time is short and certainly not frivolous. Give of yourself, unconditionally, and you will get it back, tenfold. And, most importantly, if you believe in yourself, you can do anything you set your mind to just do it.
As Mom's story has proven, medicine is only a part of healing one's ailments. And that medicine can only treat the clinical side of the healing process. The human side of medicine comes from possessing the iron will that Mom so gallantly expressed. By accepting and involving ourselves in the benefits of the 21st century, its technology, research and abilities to progress scientifically will enable us to preserve and prolong our most valuable possession - life!
Unfortunately, though Mom's iron will was still present, her body could not withstand the invasion of illness. And, with extreme grace, dignity and acceptance of a higher power, she let go. She leaves the community with changes to make on the human level. She leaves the medical world with many challenges and unanswered questions to explore. Her gift to us all was to know her.
Please say "yes" to organ and tissue donation, for it touched my family so very personally and it just may touch your loved one some day also. Take the chance.
In closing, I give my most sincere and most heartfelt appreciation on behalf of my Mom, myself and my family to every one of the people involved with Mom's care - in all of the facilities, in every department - for without each and every one of you playing an important role, we would not have had the last 3½ years with Mom.
Just in case anyone was to wonder what Mom's decision to endure a transplant gave to our family, please read on.
In those very treasured 3½ years, my Mom, Carole G. Rothman, was able to: See her fourth grandchild born (my son), her eldest daughter obtain a nursing degree, her only son marry, her eldest grandson's bar mitzvah, her only granddaughter's Sweet 16 and her only brother's first grandchild. She also utilized the time so preciously in spending every moment possible with the woman she idolized and loved so very, very much - her mother. With this time, she traveled extensively this past year and finally, as she put it best, "experienced true freedom for the first time." These are just a few of the numerous experiences Mom was able to have in her second chance at life.
I dedicate this in loving memory of Carole G. Rothman.
Thank you and God Bless.
Laura B. Rothman-Capizzano
July 1, 2001
My story starts when I was 6 years old and was diagnosed with a non-active thyroid – I finally found out why I was so much smaller than my classmates. At the age of 10, I was diagnosed with juvenile diabetes. My doctor at that time found that my thyroid problem and diabetes were connected. I felt as though the world had come to an end! Ten years old and I couldn’t eat candy? That was not fair! Well, thank goodness to a wonderful family, it was not a hard transition. We all ate according to the diabetic diet. I actually survived the teenage years!
I married my husband, David, in 1996 and in 1999, I found out that I was pregnant. We were so thrilled! But, in September of that year, we lost our beautiful baby. My kidneys worsened in a short period of time and I almost lost my life. That is when I learned of transplantation. I had heard of it, but never thought I would need it.
I was put on the transplant waiting list in January 2000. During this time I was very sick. My husband and I had to move close to my parents so that my mom could take care of me. My husband worked long hours because I only worked part-time, and that was not often. My mother was my main caregiver and when my father was not working, he also helped with my care. They were more than caregivers−they were my supporters. When I was feeling down, they were there to bring me back up! We spent a lot of time together in their home, the doctor’s office and at the hospital. They definitely saw their daughter at her worst, but no matter what, they were right there to support me and my husband.
Early one morning in 2004, I got "the call" and 12 hours later I went into surgery. That day is such a blur to me. But, I do remember wondering about this special person who had decided to be a donor and was so brave to sign the back of their driver’s license!
In May of this year, I will write to my donor's family and I am hoping to be able to thank them.
Since my surgery, I have returned to work and hardly EVER miss a day! My family does not have to worry about me – my parents thought they would never see me free from diabetes in their lifetime. It truly is a miracle! Words cannot express how much I value life. If there is one thing I would like to tell people it is to NEVER take anything for granted!
I will always remember the day I got "the call" and a beautiful, brave person restored my life!
In 1995 I was diagnosed with idiopathic pulmonary fibrosis. I was 35. The doctors didn't know how I got it, and they tried several types of therapies to help stop the progression - but the therapies proved to be unsuccessful.
I was also on oxygen therapy pretty much from the start. In 2000 my doctors told me it was time to think about a lung transplant and they sent me to Barnes Jewish Hospital in St. Louis, where I was tested to see if I was qualified to be on the national transplant waiting list. I was, thank God.
There was an average two-year wait for lung transplants at that time. About 18 months into my wait, my disease got worse and I could hardly breathe. My husband and I relocated to St. Louis in Feb 2002, so I could be close when the call came for a transplant.
The call came in March - they had a set of lungs for me. My life was saved.
The donor was an 18-year-old female from the Midwest. I was very sorry for the family that lost a child, but thankful that they gave me a second chance in life. I wrote a letter to thank my donor family, but I have not received a response . . . which is fine.
I just want to say God bless the family and anyone else who has donated their loved one's organs so others can live on.
Our 18-year-old son graduated from high school in 2001, had bought his great-grandfather's house and was about to move in after renovating two rooms all by himself. He had been working full time for a company for three months. On Nov. 18, 2001, he had an auto accident and broke his back. We were told he would be paralyzed from the thighs down and would not be able to walk again.
From the beginning, he said that he would walk again. Because he has such determination, everyone who knows him agreed with him.
Cooter amazed the doctors from the start. He went through three major surgeries on his back, including one transplanting a donated bone graft. On Nov. 1, 2002 - just 17 days before the first anniversary of his accident - Cooter walked almost 15 feet without his crutches! All of this is possible because of the love another family showed by choosing for their loved one to be a donor. I only wish they could know the love we feel for them!
He now has feeling to his ankle on one side and to just below the knee on the other side. Unbelievable to the doctor, he has even regained the use of his bladder and bowels.
On Oct. 13, 2002, only 11 months after Cooter's accident, we lost my 46-year-old brother Sonny. Our family - Mom and his six brothers and sisters - wanted to honor his death as he had lived, by helping others. Sonny was a very giving person, so when we were asked, we said yes to his being a donor. My mom discovered several days after my brother's passing that he had wanted to be a donor and it said so on his driver's license. This is a real comfort to know that we made the right discussion.
Just yesterday we received word from the Illinois Eye-Bank that a man in Indiana and a young man in Michigan are able to see today ...because of my brother! We personally know what this gift means to their family and can only hope that these men live life as our brother did - helping others and when their time comes, passing that love along to help another family!
I wish that Sonny, my brother, could have seen his nephew's progress this past year. Because we live more than 400 miles apart, he didn't. However, he had a perfect view from heaven to see those first steps on Nov. 1.
Our son has the best attitude of any person I know. He has kept his love for life and not let his pain or limitations get him down. He is back to driving, looking for a job and makes the best of whatever he has to deal with that day. But what really impresses me is that he does it for himself, not that he can't get his family to help him but because "I can do it!" is how he wants to live his life.
His accident happened during deer season last year, so he didn't get his deer. This year he got his first buck, an eight-point buck on opening morning. His goal was to be able to just finish the season! But like everything, he does it with determination.
PLEASE talk to your loved ones and let them know your wishes about donation before it's too late!
by Toni Yount