Andy's Buddy System

 

I was first introduced to the transplant buddy system through a website set up by fellow heart transplant recipient John Fisher at www.heart-transplants.co.uk. I posted my story on his site before making my own and I have to say it was the best thing I ever did and I encourage all transplant recipients to tell there stories on this site. My buddies don't just come from England but across the pond in the U.S. aswell, I have had the joy of talking with a host of people at www.transplantbuddies.org 

Below are a few accounts of the great people I have met over the web...

 

Andy's Friends....

 

Bob Pitcock

Magnolia Texas, U.S.A.    

Heart Transplant

January 28th 1991

St. Lukes Hospital, Houston, Texas

Led by Dr. O.H.(Bud)Frazier MD FACS FACC

 

I drove trucks over the road, for 29 years, prior to my transplant. This photo was made in northern California, just 6 months post transplant. I am now fully retired (64 years old)

 

 

 

 

 

 

 

 

My history of heart problems goes back to 1985, when I had my first heart attack. in 1986, I had my second heart attack, followed by heart bypass surgery (double bypass) in Dec. 1986 I went back to trucking on the road again.

In Dec. 1988, while singing Country and Western music on stage at our local "Texas Opry Jamboree", I had another heart attack, right up on stage at microphone. I was rushed to hospital, got stabilized, spent 6 days in hospital, and went back to trucking again. Everything went fine for another 12 months.

In Dec. of 1989, another heart attack. This one was a whopper. in the next few weeks, my cardiologist, Dr. Mandviwalla, suggested heart transplant. The previous attacks had weakened my heart so much; 40% of heart was damaged. I waited on the transplant list for 9 months before I got the call from my Transplant Coordinator at St. Lukes Hospital here in Houston; she said get your toothbrush and come on down, theres a donor in Florida. (My coordinator knew that I had a great sense of humor, thats why she threw the toothbrush bit in our conversation).

The following morning, I had 17 kinfolks and loved ones on hand at the hospital to support me with hugs and tears. I went into surgery at 4 AM that morning. Three hours later, I was in Intensive Recovery. I stayed in hospital 17 days, went home with my new heart, and have been feeling great ever since. I haven't had any rejection episodes whatsoever.

One thing for sure, I have learned to smell the roses along the way and to be very thankful for my extended life. Sometimes, I really feel "Love" pouring out of every pore of my skin. I feel as though, someone stood back and poured a bucket of sweet honey all over me, by golly. It's such a great feeling! I do at times, think about my heart donor and his family in Florida. I really thank God for their compassion.

My meds. consist of daily doses of 125 mg Neoral, 150 mg Imuran, 5 mg Prednisone, 1 Baby Aspirin.

A stent was placed in my heart artery in 1998. everything has been fine since then. I go back each year for my post-transplant check up. Since my first heart attack in 1985, I think that I've had around 25 Cath Tests up my groin. It's gotten so routine, that I just joke with my surgeon while he's doing his thing, while I watch that image on the monitor screen.

As you can see by the T-Shirts Bob does his part promoting transplantation, which is something we all should do, because if we don't as heart recipients who else will?

Bob also told me. "My heart was flown into Houston, Texas from Florida on a chartered jet. We had some T-Shirts back then that had on the front MY HEART HAS HAD AN OUT OF BODY EXPERIENCE".......

This was written by Bob shortly after his transplant

One's life from beginning to end, is like a warm blaze in a fireplace from start to finish. Whenever a few logs are set ablaze, they seem to have a small gradual burn. When I see this, I am reminded of an infant crawling, then learning to walk alone.
   The flames seem to get bigger and burn more briskly. This again reminds me of a youngster growing and experiencing life as it is, gaining knowledge and growing to adulthood.
   At it's peak, the logs in the fireplace seem to emerge into a roaring flame. This brings to my mind, the fast pace part of life, in the years, when marriage, raising children, and working to keep life on track, takes up all of one's time. Their never seems to be enough hours in the day. Life in this period, is fully roaring, with many responsibilities. But, like the fire in the fireplace, life can be very warm and satisfying, if one chooses to let it.
 Then, before you realize it, the logs begin a lower, more gradual burn, reminding me that with the children grown and out on their own, one may tend to slow his or her's own pace down to a gradual, more peaceful life.
   Soon, the fireplace has only red hot coals, reminding me of retirement years. For extra excitement and a bit more happiness, one only needs to stir the red orange coals for a little flame.
   When the coals turn grey and cool, that means to me that we've gone to Heaven to meet our Creator. Our fire has burned out in this life........
   One more thought comes to me, is that when I received a heart transplant 14 years ago, it was as if God simply and with love....threw another log on my fire.........

 Bob Pitcock

 

The Rhodes Family

JT Rhodes (Kidney transplant)

The Rhodes Family Hits the Road

On June 22, 2002, the six Rhodes children and their families will start a bike ride that begins in Jacksonville and takes them to Orlando on June 25 or 26 for the beginning of the Transplant Games. This will be the family's first bike trip spreading the word on organ donation and PKD (polycystic kidney disease).

Their story, as told by Jeanne Rhodes Prince, begins with their parents Joe and Mary Catherine Rhodes.

 

Mary Catherine Rhodes, our mother, had AD-PKD. It caused cysts to form in both her kidneys and liver. She was not diagnosed until age 50, when she learned that each of her six children had a 50% chance of having the disease. Mary, Jeanne and JT were diagnosed shortly after mother learned she had the disease. Cathy was too young for diagnosis at that time. It was not until Louise was tested as a possible donor for Jeanne that she learned for certain that she did not have the disease.  Cathy was confirmed positive when she experienced symptoms in adulthood. Although Patsy and Louise do not have PKD, the disease has had a significant impact on their lives.

I knew I wanted a transplant instead of a life on dialysis and I gathered as much information as I could on the topic so that I was pretty well prepared. Since I was the first of my siblings to need a transplant, I was able to share what I knew with them. My sister Louise Rhodes Wright offered her kidney as soon as she knew I was going to be placed on the transplant list. At first I was not very confident that we would be a good match. As luck would have it, it turned out that we were a six antigen match. I accepted her kidney even though I knew that my brother or sisters may have a need for it too. The match was just too good to pass up!

In September of 1991 I received a kidney from my sister. My brother JT had 12 months of hemodialysis and spent a total of six months on the wait list. He received his kidney transplant in September of 1992, one year to the day after I received my new kidney. In July of 1994 he also received a bone tissue transplant.

My sister, Mary Frances Rhodes, spent three months on the wait list on hemodialysis and had her kidney transplant in February of 1999. My other sister, Cathy Rhodes Kasriel's liver had become so large that it was causing problems and had to be removed. She was placed on the wait list in October 1998. In March 1999 her status was up-graded from 3 to 2b. She received her liver in January of 2000.

My sister, Patsy Rhodes Robinson who lives in Jacksonville where my mom lived, always provided the primary care and support mom needed while she was on dialysis. She has been extremely supportive of each of us during our transplantation.

I am the luckiest of all of my siblings in that I can thank my donor anytime I want! Everyone else has written thank-you letters to their donor families but I can thank Louise in person! I feel that her gift is a debt that I can never truly repay but one that I will appreciate forever. Louise, in appreciation and gratitude for my ability to return to an active life, made a career change. She is now a renal social worker and provides transplant education and encouragement to dialysis patients at two dialysis centers in Baltimore,

We feel that we are a truly blessed family. We have each other and we live full and active lives. We are all doing very well! All of us are active, involved people. We all believe that exercise plays a vital role in stress reduction. We all compete in the Transplant Games both nationally and internationally. We feel our transplants have given us our lives back and we all work to give back to our communities in various ways. We think that the best way to thank our donors is to live our new lives in a healthy, giving way.

Our lives have been forever changed by the generosity of others. We appreciate and savor each and every day. We all work to promote awareness of the need for organ donation. We are very aware of the promise life offers; of the potential in each of us and we all have an intense appreciation of the gifts given to us.

Our parents received strong support from their faith, which promoted a deep love and respect for all God's creation. Our talents, faith perspectives, and political affiliations vary widely, but we were taught early on to respect differences. Although the wider society in which we were raised exhibited strong racial, religious and class bigotry, the education we received from our parents stressed respect and intrinsic value of all people. Perhaps this helped us cope with kidney disease, as it is found in people of all races, religions and economic backgrounds.

On June 22, 2002, we will start the bike ride in Jacksonville (from our childhood parish church, St. Paul's) and arrive in Orlando on June 25 or 26th for the beginning of the National Kidney Foundation Transplant Games. We will stop whenever and wherever to spread the word about organ donation and PKD. We have never done this before but we have all worked in various ways to promote organ donation. Members of our family often speak about organ donation, man booths at events, have been on the boards of the New Hampshire National Kidney Foundation (NKF), have been president and founder of the chapter of the Florida Transplant Recipients International Organization, Inc. (TRIO), served on the national board of TRIO, have been in many newspaper articles and articles in both Prevention and Woman's Day magazines. We all also support the PKD foundation, the NKF, TRIO, the Lung Association and other charitable events.

All of my siblings will be riding, as well as some of our spouses and children. There may also be other transplant recipients who join us along the way.

Finally, some advice that my family and I have for people waiting for a transplant are:

Have faith; maintain a positive attitude!
Express your gratitude to those who provide you with support, and harbor no ill will toward those who may be unable to live up to your expectations.
Live as productive a life as you can- be happy for what you can do and do what you can.
Join a support group or form your own. Talk with as many folks as you can about transplantation
Be proactive about your health issues -- it's YOUR body and YOU are the leader of your health care team!

 

 

Risa Gans Florida U.S.A.   

 

Risa Gans founded TransplantBuddies.org  on February 12, 2000, having seen a need for support and communication with many transplant patients throughout the world. As a consequence of cystic Fibrosis, Risa had a double lung transplant January 21, 1996, at Loyola Medical Center.

 

Just In Time

As I blew out my birthday candles at my thirty-sixth birthday party, I made a special prayer that I could stay alive for one more year. It was not too long before that time that I'd been told that I had less than a year to live, because I was dying from Cystic Fibrosis.

In the event that I needed emergency assistance, I decided to leave my apartment door unlocked. This plan of action saved my life. On January 18, 1996, my respiratory therapist found me semi-coherent, on the bathroom floor, with my cannula detached from my face. Sandra had come to give me a breathing treatment. I was taken by ambulance to the nearest hospital. When I became conscious, I looked over at my parents in the ICU and felt a great appreciation that they were called to meet me at the hospital as I lived alone.

A few evenings later, I asked the ICU nurse to help me get out of bed. I wanted to walk in place for twenty minutes, because I knew how important it was for me to get some exercise. I wore an oxygen tube in my nose as I proceeded to slowly march in place. While I held the nurses hand, I said aloud, “I will never give up! I want to live! I want to live!” It made me feel so alive, unlike the way I looked. I felt a little shaky and my skin tone was a bluish color. After I said my famous marching words, I looked over my shoulder to see my parents' reaction. Their emotional reaction will remain indelibly ingrained in my memory. My determination was so alive. I was going to fight this battle!

Later this evening, I felt very peaceful along with feeling a sense of urgency. Although I was physically alone, I felt a great love, I felt surrounded by our heavenly father. As I started to pray, I felt every fiber of my being absorbed by Him. I said, “Dear God, please, if there is one night that I need and want new lungs, it is tonight.” I always prayed every night, but I never expressed such a desperate, urgent plea for help.

Hours after midnight, the lights flicked on. There was my doctor who exclaimed, “Risa, you are going to Chicago tonight! They have lungs for you!” At first, I thought I was dreaming. All of my favorite therapists and nurses helped me to get ready to leave the hospital. I was living in Florida, so my family and I flew by air ambulance to Loyola University Medical Center.

When I reached the operating room, I said in a very upbeat voice, "Bye mom and dad, I will see you both tomorrow." When I met my surgeon I said, “Take me, I’m all yours.”

I learned that I was on the respirator for an additional eight hours after the operation. When I awoke from my double lung transplant. My first request was for ice, because my throat was very dry. I then asked if I could listen with a stethoscope to hear my clear sounding new lungs. Later, I asked for a mirror so I could see my lips and fingernails, which were pink. The entire transplant team was very impressed with my enthusiasm.

A nurse in the ICU called my parents in to visit me. When I saw my parents I was not yet able to move much. My mother had tears in her eyes as she exclaimed, “Today just happens to be my birthday, this is the best birthday present I ever received!” The next day, my father asked me, “How does it feel to breathe?” I replied. “I feel like I have superwoman lungs!” I smiled, took a breath, and laughed. Within a mere ten days, I was discharged from the hospital. It was necessary for me to live in Chicago for three months to facilitate post-transplant observation.

My father philosophized, “You have to appreciate where you have been in order to appreciate where you are going.” These words of wisdom helped me cope emotionally with some minor setbacks. I did experience some rejection and a minor infection. I have been rejection free for five and a half years and have had no serious signs of infection.

To write a letter of appreciation to my donor family was paramount to me. I have written four letters in the past six years. I wrote about the gratitude and respect that I have for the family. They had the foresight to see life for another human being. They gave me the chance to breathe freely for the first time in my life. I always pray for them. I have not received any replies so far. I had an intuitive feeling about his race and his birthday. I found this to be a true discovery by family services from the organ donor program.

After returning to Hollywood, Florida, I contacted several charitable organizations and civic groups to arrange speaking engagements on organ donation. This is my way of giving back to society for the precious gift that was given to me. In 2002, I created www.transplantbuddies.org. Many patients, both pre- and post-transplant, enjoy helping one another on a daily basis. There are topics for almost all facets of transplantation. I also participate at Jackson Memorial Hospital in their mentoring program

I enjoy fast walking, aerobics and weight training. Deep-breathing exercises are part of my routine during resting periods. I believe in holistic therapies and find a great benefit from them. I met a wonderful man shortly after my transplant; I am very serious about him.

Facing a near-death experience has taught me a great deal of appreciation for life, for my family, friends and doctors who have stood by my side through good and bad times alike. Regardless of what I might experience in the future, I feel as though I can handle anything. However long I shall live will be god's plan. As one can imagine, this life changing experience has enlightened my spirit in many ways. In October of 2005, I will be 46 years old and will continue to pray with gratitude for continued excellent health.

 

Micky Byrne- England 

 

My name is Micky Byrne, and I had my Heart Transplant on March 9th, 1999.

After many years of incredibly bad health, as a child of 13 I had Rheumatic Fever. Then during my adult life until transplant, I had undergone a triple by-pass in 1983, the removal of a Brain tumor in 1993, then a quadruple by-pass in 1996, which unfortunately went Pear shaped. 

This left me with a very damaged heart and I was accessed for transplantation at Harefield Hospital. After I was put on the transplant list, Carlton TV asked me. If I would allow filming of my Transplant, should a Donor come up for me whilst they were doing a Documentary of Prof Sir Magdi Yacoub .As I am a real Ham, I agreed. The program was called the life saver, and was transmitted on March 22nd 2000. 

The night before I got my "call" I had just demolished a couple of helpings of a curry I had made, and was just half way through Coronation Street (TV Program), when Pam Baldock (transplant coordinator) called me and said "Micky, what are you doing tonight? fancy a new heart" The next call was from the Carlton team who were already parked outside my house. They knew I had a Donor several hours before me, and were ready to rush me to Harefield. When I got there, the tests were done, The heart was good and arrived early, so it left no time for a pre-med. I'm glad I had brown trousers on!! I met the Proff just before they put me out, and to meet him for the 1st time, knowing he was the best in the world, It was to me, like meeting God.

Everything went fine, with the exception of some damage to my vocal chords, which does occasionally happen during transplantation, and I was afraid it might jeopordise my career as a singer musician. I was home in just seventeen days, and I thank God, that to date I have not experienced any rejection. Within four months my voice had returned, I moved house two months later, and very soon after that, I resumed my career as a musician.

As I am writing this article, It is just before my 2nd M.O.T. (annual check-up), and may I thank The proff and the entire staff at Harefield Hospital for giving me my new life, and giving my beloved wife Julie some peace of mind, after all the worries she has had over me.

I hope you have found it interesting reading my story, and if any of you readers are awaiting a transplant, please go for it when the day arrives, there is light at the end of the dark tunnel.

Hope you enjoyed my story.

keep well, keep taking the pills.

best wishes     

        Micky Byrne. Email Address:- micky2ndheart@mickybyrne.co.uk

P.S. Just before Christmas, I received a letter from my Donor's wife and his mum and dad, It was the best Christmas pressy I've ever had.

 

 

Santa Maria, California, USA

 

Shivan
birthday. July 16, 1995.
HTX January 30, 2001

Lindsea
birthday
HTX November 20, 2003

Shivan and Lindsea are sisters with a remarkably similar life.
Both have had heart transplants. I encourage you to pray for
them and their family. You can meet them on their web site.
We will also keep you posted on their progress.

LIGHTNING DOES STRIKE TWICE

by Susan Friesen (copyright 2005)

My husband, Ken, and I are proud parents of five children. Our two eldest children are athletic young men, David, twenty-two, a U.S Marine, and Glenn, twenty-one, a lifeguard and college student. We were pleasantly surprised when I became pregnant with Shivan almost eleven years after Glenn's advent into the world. I prayed we'd have another child, so Shivan wouldn't feel like an only child. Imagine my surprise when Alaina arrived a little over a year later, then Lindsea not too long after that. So, with one son entering college and another a sophomore in high school, we found ourselves with a couple of toddlers and a preschooler to raise, as well.

The girls were very healthy, as our sons had been throughout childhood. Shivan was born with a heart murmur that supposedly closed by age two. We were told not to worry about heart problems with Shivan, only to make sure when she began dental cleanings to take an antibiotic before and after treatments.

Dr. Bilal Harake performed an echocardiogram which showed Shivan had only about seven percent of typical heart function. A heart transplant must happen if she would survive. We waited about three-and-a-half months for Shivan to receive the gift of life on January 29, 2001. Doctors told us it looked like a virus had attacked Shivan's heart. We were told it didn't look like familial cardiomyopathy (genetically caused), but dilated idiopathic cardiomyopathy (viral-based).

Once home after all the follow-up heart biopsies at UCLA Medical Center, we thought life would get back to semi-"normal." We knew, though, that life would never be the same, as Shivan's pill case was filled with lots of pills she had to take three times a day. She'd have to take immune-suppression drugs the rest of her life.

A couple years went by. Lindsea got sick in early October with a flu that kept recurring. A flu bug rippled through the community at that time, so the pediatrician just said to let the flu take its course. It stopped, but started-up again. My husband's face literally whitened when he noticed the same bloated look and puffy abdomen. Amazingly, Lindsea fell ill the first Friday in October - the same timeframe as Shivan, when a doctor declared she needed a transplant. An ambulance arrived at Marian Medical Center to transport Lindsea to UCLA.

Lightning does strike twice. Unlike Shivan, Lindsea couldn't wait outside the ICU for her new heart. A large blood clot barely clung to her ventricle. She had to remain bedfast in the ICU. She waited forty-nine days for her heart and it was a perfect fit, thank God. Dr. Mark Plunkett, UCLA transplant surgeon, possesses, it seems, angelic hands.

We've been told that having two daughters with a successful heart transplant exceptionally rare, a one-in-ten-million situation. Now that two girls fell ill to a similar condition, it seems their heart disease is genetic, but we've been told nothing for certain. We don't even know the girls' diagnosis, but doctors are looking into this. Baylor University in Texas is involved in a study of cardiomyopathy and we've provided the girls' blood samples.

Genetics is still a relatively new science. Even though the human genome has been mapped, researchers still work relentlessly to discover genetic markers that may give us a clue to what happened to our daughters.

Because of the unselfishness of heart donor families, our girls received sound, healthy hearts. All three of our daughters work hard at their homeschooling lessons. They love creative writing, illustration, and reading. Lindsea and Shivan are excited to take part this year in the World Transplant Games in London, Ontario, Canada. They'll compete in swimming, track (50 yard dash), badminton, and five pin bowling (Canadian-style bowling). We are so proud of all our kids!

If you have any questions about organ donation or heart transplantation, feel free to write:
Susan Friesen

dolphin_dancer@comcast.net
See websites:
http://www.ken-sue.com/
http://www.2hearts.org.uk/children/sisters.htm

 

 

 

 

 

 

 

 

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