Perry, liver recipient

In '97 a simple take-out pizza made a number of us sick - I was the only one who didn't get better.  I became jaundiced and could not keep anything down.  I was admitted to our small local hospital.   After undergoing multiple tests and biopsies, I was scheduled for gallbladder removal.   I was actually in the preop room and the IV was started when the surgeon came in and informed us that the surgery was cancelled.

My condition continued to worsen and they sent me to a larger facility -  I later learned that he told the staff that I had less than 10 days to live.  I arrived in St. Louis the week before Christmas and was put into the care of Dr. Bruce Bacon of S.L.U. Hospital.

They immediately performed surgery to remove over 100 gallstones and I was discharged in time to spend Christmas with my family.   I had bilroth gallstones which did not appear on x-ray's and I was scheduled for procedures every 10 days to remove the stones until my gallbladder was small enough to remove, which they did in February of '98. 

At this point, I was told my liver had been damaged.  My diagnosis was "Sclerosing Cholangitis".  I continued to see Dr. Bacon for follow up visits and had regular blood work.   I was able to work 6 days per week in my own business.

Then, in the summer of 2006 I decided to try to lose some weight and experienced extreme swelling of the arms, legs and feet.  I immediately went to see Dr. Bacon who placed me on diuretics and I immediately felt better.  I now started to hear a lot about MELD score (Mayo Endstage Liver Disease).  

As fall approached, I was still able to maintain an active lifestyle but I noticed I fatigued easier and my color at times was jaundiced.  I no longer had trouble with my weight - I was constantly losing weight no matter what I ate.  Then in January 2007 I had a severe reaction to antibiotics I had taken for a sinus infection.  I developed bleeding ulcers and had to be hospitalized in the ICU for transfusions.  I was then discharged and actually felt much better for a short time. 

In February 2007, I felt much worse and was hospitalized again.   This time it was evident that I would not improve unless I received a miracle and/or liver transplant. I spoke to my pastor, Rev. Rich Reinwald at St. John United Church of Christ that I felt whatever God has planned for me would happen on Easter.   I was reminded of this by my pastor, who also mentioned it to the congregation on Easter Sunday.  My kidneys were now also failing.     

The first call my family received was that a liver was available.  However, I was the second choice for the liver.  We would be contacted if the first patient was not a match.
The second call came. We anxiously awaited.  However,once again we were notified that the organ was not acceptable.

The third call came.  The organ was a match.  My family was to come to St. Louis.  Then approximately half way down to St. Louis, we were notified that the donor had hepatitis and surgery was cancelled.

The fourth call was a go.  But as we waited we were notified that there was a terrible storm and the plane could not leave.  Hour after hour passed.  During this time, my blood pressure was falling to dangerously low levels and ultimately the liver went to another recipient.  Due to failing health I was taken off the transplant list.   Then a series of miracles began to occur.

The Saturday afternoon before Easter, Dr. Bacon came into my suite in ICU.  He told me I had been cleared for transplant surgery and he had heard that an organ was available and not to give up hope. My family was called and we were notified that I was getting not only a liver but a kidney. 

In a short period of time I went from weighing 260 lbs. down to 128 lbs.  I had to learn to walk again, climb stairs, feed and dress myself - things one takes for granted but I was alive and improving with each and every day.   

Upon returning home, I started therapy at home, three days a week. My wife had to return to work as our health insurance was through her employer who would not let her take her vacation time.

The Land of Lincoln Chihuahua Club of Illinois and the Take the Lead Foundation helped us tremendously by covering much of our living and medical expenses not covered by insurance. Thanks to our church, food was delivered to our home every weekday for six weeks.  People called to make sure I did not need anything. Cards flooded our home with well wishes. It was the support, prayers, good wishes and love that have sustained us and gotten us through this ordeal.  Among the many things I learned, two things stand out:

1) Believe in organ donation.  It saves lives. Help promote it in your community, church, family and friends. 

2) Embrace the future.  You may not be able to do what you did before. But you can make a difference!  You have survived.  You can share your story.  You can promote organ donation. You can volunteer. You can empathize with someone who has a chronic illness who feels all alone.   You can be a listener for someone who needs a friend.   Your life will never be the same.

You need to honor yourself and your organ donor.

Someone you will never know cared enough for a stranger to provide them with life!  Cherish it!  Enjoy it! Share it!
As you have been blessed, bless others.

Angelina, kidney and pancreas recipient
California
I am a recipient of a kidney and pancreas transplant from the California Medical Center, San Francisco.  At the time I was a single mom with a 12 year old son going though a divorce and on dialysis.  After 16 months on dialysis I was fortunate to receive a kidney & pancreas from a young man.  I am now 39 years old, married and my son will be 16.  I am very fortunate to continue my life with my husband and son.  My son and I have gone through enormous pain while on dialysis and through the surgery, but with a miracle, the gift of life, we have survived!

Lori, kidney recipient
Connecticut
I had MPGN since I was 7 years old.  At the age of 17 my family was told that I would need a kidney transplant.  My loving mother was a match and on November 5, 1986 she gave me the gift of life.  Sadly she passed away shortly after our 10th anniversary.  For the next 5 years the kidney she donated began to fail as well.  Everyone else in my family, including several friends tested, but no one was a match.  I was beginning to give up hope when one day a friend of the family who I had not seen since we were kids called my Grandmother and she told him I was in need of a 2nd transplant.  Without hesitation he told her he wanted to give me one of his!  I was excited but also not very hopeful that he would be a match because of all the others that had tried and did not match, but Scott (my donor) told me he knew in his heart that we would be a match and we were.

On December 13, 2002 he also gave me the gift of life and we both know my mother in heaven played a big part in all of this.
I thank both my mother and Scott for their selflessness and encourage others to give the gift of life.

Lizann, kidney recipient
New Jersey
I received my kidney transplant 13 years ago from a cadaver.  A young accident victim I know nothing about.  Thanks to her I have had thirteen wonderful years.  My husband and I have adopted and then finally I gave birth to twins.  Unfortunately at this time, I am having problems with the new kidney due to cyclosporine.  I am still grateful for the time I've had and can only pray for more.

Rebecca, kidney recipient
Pennsylvania
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
New Jersey
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.

Cala, living pancreas and kidney donor
Wife of kidney and pancreas recipient
West Virginia
A month before we were married, my husband was told his kidneys were failing due to uncontrollable Type-1 Diabetes.  He was placed on the waiting list for a kidney in November 1989.  No call came and he just got more and more tired and sick. At one of his appointments I asked if an unrelated person could donate; the doctor had never mentioned it. The answer was yes and I asked to be tested.  I was a match and we were told we could begin the testing to find out if I was able to do the donation. While waiting for the testing process to begin, I read about a doctor at the University of Minnesota who was doing living donor pancreas transplants as a treatment for Type-1 Diabetes.  It made no sense to put in a kidney only to have it killed by the same disease that made the transplant necessary in the first place - so I called him.  To make a very involved but exciting story short, I became the first non-related pancreas donor a year after the kidney transplant.  I feel that more people would donate organs if they only understood the process better.  I was honored to donate organs for my husband. If I accomplish nothing else in my life, I can always look back and be proud of myself for this.  I was given the opportunity to save another human being.  The fact that it was the man I love made it that much more special.

Sherry, mother of heart recipient
Illinois
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
New York
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
New Jersey
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
Texas
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
Kentucky
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
Pennsylvania
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
Utah
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
Tennessee
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.