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Stories of Hope: recipient stories

Rebecca, kidney recipient

Being diagnosed with nephritis at age 19 changed my life forever. I was going into my sophomore year of college and knew nothing about kidney failure.

I received my first kidney from my loving and caring mother, who went through a long recovery after donating. The kidney worked well in surgery, but within the next day or so everything changed. The transplant team tried their best to continue to keep the kidney working. But after 6 weeks in and out of the hospital my body decided it had had enough and made it necessary to remove the kidney.

I was on peritoneal Dialysis for almost 5 years when I got a phone call at 2 a.m. on December 26, 1998. My dad came walking down the hall to my room saying, "the transplant center is on the phone, they have a kidney for you." I told my dad I didn't want to talk to them. He came into my room and handed me the phone. My heart was racing; I was nervous, scared and happy all at once. I couldn't believe that my chance had finally come. I was beginning to wonder and get frustrated when I would hear others say they only had to wait a few months and got called.

And so I received a great kidney from a 40-year-old man from Ohio on December 26, 1998. I named my kidney "Rhoades"because I have a friend waiting for a transplant who is superstitious and feels that our transplanted organs should be given an identity.

Rhoades and I have been doing great! We have had no problems in the two and 1/2 years and my life has been so much better.

Thanks to my donor family's generous gift I was able to complete a graduate school education in social work. I do not always thank my donor every day for my gift, but lately, it's the strides I have made in my life that make me really think about my donor and his gift. I know that I never would have made it through two years of graduate school without his gift of life!

Thank you always. And may there be others like you who continue to see the need to be an organ and tissue donor.

Dawn, wife of kidney recipient

In 1995 my husband Joe received a long-awaited kidney transplant. After a month-long stay in the hospital, he was back to his "normal" life, which included playing, coaching, and refereeing ice hockey. In 1996, I found out I was pregnant with our 3rd child. What a blessing! (Because of complications after the transplant Joe was told he wouldn't be able to have any more children.) On July 3, 1997, Jazmine Ann was born. It was no ordinary birth. The ambulance didn't have time to arrive before Joe had to deliver her, right in our bedroom. What a miraculous experience for anyone, much less someone who received the gift of a kidney transplant only two years before. We have been truly blessed. Thank you for letting me share my story.

Sherry, mother of heart recipient

My daughter Joi (age 10) has received organ donations for three open-heart surgeries. She was born with a congenital heart defect that was diagnosed at age 3 months. I am forever grateful...tell everyone...Give Life.

Michael, liver recipient

I received a liver transplant on February 13, 1990, despite living in New York City and traveling to Omaha on the day of the transplant. This followed 30 years of liver disease of unknown etiology. I have continued to work full time as a doctor, watched my sons finish school and start their careers, and played with our first grandchild, now two-years-old.

Gail, heart recipient

I was a (pretty) normal 41-year-old on November 10, 1998. That is, until I had a massive heart attack when my coronary arteries spontaneously dissected. Four out of five arteries were completely obliterated; one was working at only 30 percent. Within a matter of days, I was transferred to a transplant center for evaluation and 24 hours after being placed on the waiting list, I received my gift of life. I was so blessed that a family who, in their deepest moment of sorrow, thought enough about a fellow human being to graciously donate organs and tissue from a loved one taken from them so tragically and suddenly. I had only hours to live when that loved-filled heart arrived and was placed in my chest, where it has been beating strongly ever since. Every morning I thank the Lord for the sunrise, and every moment of every day I thank Him for giving my donor family the strength and courage to give me a second chance to live.

Ernie Petru, kidney and pancreas recipient

I just wanted to say thank you for your wonderful organization. I went into renal failure in May of 1998 and I was on dialysis for over a year and a half. Then, on January 2, 2000, through the kindness of a stranger, I received a kidney and pancreas transplant. Each day, I include the family that I have never meet in my prayers and I do whatever I can do to promote organ donation, so that others like me can experience life to the fullest. I cannot express how much your organization means to people like me. It is my quest to make people aware of the tragedy that families are placed through each day when a loved ones dies waiting for a transplant. Thank you once again.

Amy, mother of liver recipient

My one-year-old son received a liver transplant when he was eight-months-old. We first discovered he was ill when he was only five-weeks-old and he suffered and endured what no one should ever endure for six months. During the Christmas holiday, we were in touch with his doctors daily; he was struggling to stay with us. We all knew that without a transplant soon he would not be with us much longer. On January 2nd, we got a call that there was a possible donor. As we drove to the hospital, all I could think was how devastated the donor family was at this very moment and how this was going to save my son's life. The courage and sacrifice of our donor family truly saved my son's life. Now he is thriving.

MaryAnn, living kidney donor, wife of kidney recipient

My husband inherited Polycystic Kidney Disease, creating multiple cysts in the kidneys, which become enlarged until they lose function. There is no cure for PKD. In September 1999, our three children surprised us with a "long desired dream cruise" for our 30th wedding anniversary. However, two weeks before we were to sail, Paul went into kidney failure, and our lives turned into an emotional and stressful nightmare. Little did we know what lay ahead in our "journey to transplant". Paul's kidneys were enlarged to the size of footballs. Two operations were required to remove them. In the interim, he started hemo-dialysis three times a week and I began my pre-transplant testing. We celebrated that we were compatible. In July of 2000, I gave my beloved husband the "Gift of Life and Love," his kidney transplant.

Sarah, liver recipient

My name is Sarah. From the minute I was born I was sick. I had biliary atresia, a liver disease. Luckily I had great doctors and parents who searched for every way to make me better. I was put on a waiting list at the University of Nebraska Medical Center. I waited six months and became very sick. I was a beautiful greenish yellow. On August 3, 1986, a wonderful family gave me the gift of life. I was 14-months-old, and I went through several rejections. But I am a survivor. And now I am 16-years-old, I love life, and I love people. I am very outgoing, and love to share my story with people, to help them be educated on organ donation. I have participated in the transplant games for the past six years, and have made so many great friends. Thanks for letting me share my story.

Shell, mother of recipient

My story is about my son Preston. He received a transplant when he was six-months-old for biliary atresia. For the first year, Preston suffered several illnesses that required hospitalization. The decision was made to keep him off immunosupression with close supervision until he showed the first signs of rejection. My son is doing wonderfully and is almost eight-years-old now. His most serious health problem was the chicken pox for which he was hospitalized for almost 2 weeks as a precaution. He did very well and suffered no complications. We do not know who the donor was. We know it was a three-year-old child and I want very much to thank the donor family for the wonderful gift of life they gave us.

Life after transplant...Connie Rippey

My story begins about 9 years ago during memorial weekend. I had been feeling very ill for about a month. I had caught what I thought was the flu. I didn't seem to be getting better and had been to the doctors on several occasions only to hear that my symptoms were allergies.

I was having a hard time breathing and I was constantly coughing. I noticed weight gain and wondered how that could be if I was unable to keep food in my stomach. On memorial weekend I was visiting my parents in Ensenada, Mexico and it was about a four hour drive. Although I wasn't well, I decided to take the trip with my husband and children, thinking it may help me feel better. When we arrived at my parents house, my mother took a look at me and knew I was not well. I was constantly coughing and gasping for air. I was retaing alot of fluid and could not sleep in bed without sitting up or the cough would keep me up all night.

The next day my mom convinced me to see a doctor down the street from where she resides. I agreed. The doctor examined me and asked me several questions. He suggested I go to the hospital and have an x-ray, blood work and and EKG. Through his initial exam he had noticed my blood pressure either really high or extremely low and was convinced that my problem was not allergies. After all my tests were completed, I was told that my heart was enlarged and that I had fluid all around my lungs and heart and needed to be hospitalized immediately! I was shocked, surely they must be mistaken. I asked if I could take my test back to my doctors in California and they agreed as long as I did this the same day.

When I arrived in California with my tests that were administered in Mexico I was immediately admitted to the hospital where I spent two weeks on diuretics. I will never forget the day my doctor walked into the room and told me that I had cardiomiopathy and that some day I may have to have a heart transplant. I was shocked! I thought I had the flu. The virus attacked my heart and damaged it. Within a year my condition worsened. I was seeing double vision, I had a mini-stroke (TIA) and was having a hard time breathing. 10 months after I had been diagnosed I was put on a heart transplant list and because I was so ill with very little time to live,

I was admitted to the hospital to wait for a new heart. I waited 26 days. I was never afraid of dying but I felt bad that in order for me to live someone had to die. In April of 1994, I received my heart. Four months after my transplant I was ready to go back to work. My family and friends gave me so much support and love during those months that I will forever be thankful.

Five months after my transplant I became pregnant. Against medical advice, I decided to keep my pregnancy and nine months later gave natural birth to a healthy 8 pound baby girl, whom I named Angelica Faith. (God is great!) Not only had the heart I received give me life, but it also gave life to my daughter. I wrote to the family of my heart to thank them for the gift of life and to share with them the two lives they had saved. My daughter is now seven and in first grade, healthy as can be. I went for my annual check up the other day it was my eight year anniversary since my transplant. The doctor tells me my heart is still pumping strongly. All I can say is life is good! 

My brother's kidney...Lynn Burke

I had a kidney transplant on 9/25/00. I am now 7 months post-transplant and have not felt this good in ten years. It is truly a miracle!

My brother gave me the kidney. I've never known how to thank him. He not only volunteered to donate his kidney, but really wanted to be the one to do it. He approached me and told me he wanted to be the one to do it. At one point in the testing we thought he might not be able to donate and he was just as devastated as I was.

The point is that it would have been very difficult for me to ask anyone about donation so his attitude made it easy for me. If you are willing to be a donor, don't wait for the person to ask you. Go ahead seek them out to tell them you want to be the one.

Thanks for listening. 

My daughter's new heart...Heather George

Hello all, I wanted to share with you my daughters story of transplantation... when I was 25 weeks pregnant with my third child, we were informed that she had a massively enlarged heart (75% of her chest cavity). We were told to go home and wait for her to die, it shouldnt take more than two weeks and to call the doctor when she stopped kicking. I tried to grasp this for about 3 days. We planned a funeral, we picked out a little white casket. I tried to prepare myself for a still birth and pictured her little lifeless body wrapped in a blanket on her birthday.

The day came when we were supposed to pick out her plot and her name plate for her burial. I looked at my husband as we woke up that morning and said "My baby isn't going to die". He looked at me with sympathy and gave me a hug, he knows that denial is part of the greiving process. I told him that he didn't understand... I knew she wasn't going to die. I didnt know how I knew this, but I knew it to be as true as the fact I was breathing. We didnt pick out a plot that day.

The next 10 weeks held many trials, many fearful nights of counting kicks, many fetal echos. I was taking toxic doses of digoxin for Emmas heart. I was hospitalized for the last 5 weeks of my pregnancy due to emmas hydrops and having too much amnionic fluid. I remember the doctor coming into my room and telling me that he wanted to do a surgery to open my urethas (my kidneys were blocked due to fluid around emma) i had 4 times the normal amount of fluid in my kidneys. I told them no. I told them i wouldnt risk the pregnancy, we had come too far. I was now 30 weeks pregnant. I had to get to 34 weeks for Emma to go on ECMO.... 4 weeks to go!

I was discharged on the grounds that I would move to Orlando from my hometown of Sarasota.. luckily we had friends that had a house they weren't using and allowed us to move in. My parents, my husbands mother, me, my husband and our 2 other children moved to orlando. In bed I laid for 4 weeks... 34 weeks to the day my kidneys started to fail and emma was born via emergency c-section. This was June 5, 2001 We were told not to expect much of her when she was born, she wouldn't cry, and would be very floppy.... she had a scream like you have never heard before in your life... she practically jumped out of my belly! They told us she would be put on ecmo as soon as she was born... again, they didnt know our God obviously, Emma never spent a day on ECMO. She was put on a ventilator, and we were told she wouldn't live more than two weeks... Two weeks came, and the doctors had no clue what to do...she was still alive, barely, but alive....

They asked if we wanted to be transported to All Childrens Hospital and wait for a heart to be donated. Like we had any other choice... we told them yes... we never looked at transplantation as anything other than a way for emma to live, it didnt scare us.. death was scary enough... We arrived at ACH on Saturday night... Emma was now 15 days old. She was listed, and waited 4 months for her heart. It was the longest but most valuable months of my life. I saw my little girl fight for life like no one I had ever seen before. I learned the importance of loving like there is no tomorrow, and to hold my children with the strength of a lion today, for tomorrow may never come... Emma Grace came home for the first time when she was 5 months old. we finally heard her cry.. and she had a beautiful face behind all that tape! We named her Emma Grace because we knew Gods Grace was sufficient... Emma has been home now for 5 months, there are trials, and there are heartaches, but there is so much joy wrapped up in the gift of life that was given to our precious child....

I thank you in advance for letting me share the story of my precious Emma Grace. Please know that if you need support, it is available, please feel free to contact me anytime. Emmas2Hearts@aol.com 

The gift of life...Sue Cash

I am a Mom with a daughter 20 years old. I learned I had degenerative kidney disease about 3 yrs ago. I have the hereditary kind, Alport Syndrome. My father died from it at age 37 and I have numerous relatives who have had transplants, all men. When I was first diagnosed my doctor told me that it almost NEVER leads to complete kidney failure in women, so go on with my life and don't worry about it! Unfortunately for me it did lead to complete failure and when I went on dialysis my whole family was devastated. My daughter begged me to let her be tested, but because it was a hereditary disease I wouldn't even talk about letting her try. My husband was ruled out right away because of hypertension. After about 9 months my daughter wanted to get tested just to see if she was carrying the gene. That I agreed to. After two biopsies and genetic testing it was determined that she was 'clean', not even carrying the gene. At that point we were both elated. I was relieved that she would not develop it and she then insisted that she be allowed to donate. It was two weeks before Christmas and she wanted to give me the "Gift of Life" for Christmas. Well we did it and I feel GREAT!!!! I forgot how good it feels to feel good! If you have someone who wants to donate, let them. I received a card from my daughter afterwards wherein she thanked me (if you can imagine) for allowing her to improve my quality of life, which in turn gave us the time we might not have had if not for her gift. Good luck and God Bless You! 

"Quatro" - kidney transplant...Julie Hastings 

In 1988, I was 15 when I started noticing my energy level decreasing, which was an awful feeling. It wasn't until I was 17 that the doctors finally ran the right tests to discover my kidney failure. I'll never forget that day, I was just glad to know something and that it wasn't cancer. That not knowing business is for the birds! They sent me to St. Vincents hospital in Indianapolis, IN. to be admitted. It was there that I had my first of many kidney biopsies, I was so nervous I even threw-up before they stuck the needle in my back. The doctor told me that my kidneys have failed and I would have to start dialysis, which I had no idea what that was, but anyway they put in a subclavian as they called it and I had my first dialysis treatments.

Then they thought that I should switch to Methodist Hospital because of my young age and their transplant program there for kidney patients was better. So, I switched and went to their outpatient dialysis facility. It was there that I really felt out of place, I mean most of the patients there were over 40. But that was the least of my problems, I started bottoming out (blood pressure dropping to dangerously low levels) all the time while dialyzing, which meant something serious must be going on. It was my heart, I had a blockage which needed to be fixed. The doctors at Methodist, though, weren't sure what was going on, so I switched hospitals again this time to Indiana University Hospital where Dr. John Brown performed my open-heart surgery. I felt so much better it was great. I returned to dialysis without bottoming out, and was able to get the work-up for a kidney transplant. I was put on the list in April of 1990 and was called on September 24, 1990 to receive my first kidney. It lasted eight years, which for a cadaveric kidney is pretty good mileage, unfortunately the last two years I was in chronic rejection.

My brother donated one of his kidneys on November 19, 1998 and his was a perfect match. I am now up to four kidneys in my body, my brother and sister call me "quatro". I have been so blessed to have not only the support of my family through all these years, but also the many dear friends that I have encountered throughout this illness. Ones who have the same disease, who have taught me that yes it could be worse, and ones who aren't sick who have stuck it out with me through thick and thin and continue to do so. I have to say that a lot of the nurses who took care of me were very supportive, too. I'm still friends with several of them to this day even though I don't get to see them as much as I once did.

If anyone is going through a tough time right now, I am not going to tell you the usual things you hear from people because it is tough, but, somehow, someway you will find this inner strength deep within you that you never imagined having and all of the sudden the worst part (for now, anyway) will be over before you know it.

Take Care and God Bless


 

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