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...
Lukes Hospital, Houston, Texas
by Dr. O.H.(Bud)Frazier MD FACS FACC
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
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
My meds. consist of daily doses of 125 mg
Neoral, 150 mg Imuran, 5 mg Prednisone, 1 Baby Aspirin.
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
This was written by Bob shortly after
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
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.........
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
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
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
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!|
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
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
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.
name is Micky Byrne, and I had my Heart Transplant on March 9th, 1999.
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.
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.
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.
you enjoyed my story.
well, keep taking the pills.
Micky Byrne. Email
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.
Maria, California, USA
birthday. July 16, 1995.
HTX January 30, 2001
HTX November 20, 2003
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.
DOES STRIKE TWICE
by Susan Friesen
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
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.
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.
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
If you have
any questions about organ donation or heart transplantation, feel free