Message From A Caregiver

My name is Adrienne Steiner. On September 12, 1990 my husband Bert & I had a heart transplant. Oh, no, no, no, I don't mean that I was wheeled into the operating room on a gurney, had my diseased heart taken out and a new heart put in. Bert did that. I was the one who walked the hospital floors at Jackson Memorial Medical Center from 10:00 p.m. in pain waiting to hear whether the new heart started beating in my husband's chest when it was put in at 4:00 a.m. Oh, no, no, no, I'm not the one who takes Cyclosporine, Imuran and Prednisone every day. Bert does that. But I am the one who - when 10:00 a.m. rolls around says to Bert, "Did you take your pills at 7:00 a.m. this morning?" That's when he tells me, "Oh, that's a good idea."

I'm the one who rode the roller coaster first year post transplant with Bert, four rejections each one followed up with 100 mg. of Prednisone. Wow, talk about mood swings: he even has a shirt that was made for him showing a man doing the swing dance and it says mood swing on it. We were married 30 peaceful years at that time and it was the first time he had snapped back at me. He's still apologizing that it was the Prednisone. And no, no, no, it's not me who gets the angiograms and biopsies. Bert does that. I'm the one who also gets up at 5:00 a.m. to get to Jackson by 6:30 a.m. and dutifully sits somewhere in the hospital waiting to drive him home 12 hours later.

I'm the one who accompanies Bert to the Internist, the Dermatologist, the Urologist, the Gastroenterologist, the Neurologist, the Orthopedist, the Ophthamologist, the Cardiologist and the Whatever Other Part need a specialist. I'm the one who rubs Bert's fingers during dinner when he gets cramps in his hands. I'm the one who rubs salve on body parts he cannot reach because the Dermatologist tells me to do so.

I'm the one who runs for the walker or cane when his hips cannot get him to move another step. I'm the one who picks him up when his blood pressure has dropped and so has he. Ask me about that sometime. I'm the one who bathed him in bed when his hips were operated on and he was in a wheelchair for 3 months. Ask him about that one. I think he really liked that.

I'm the one to tell him to please order the fish or chicken instead of the hamburger. I'm the one to tell him to please order the sherbet instead of the cheesecake. I'm the one to hold the stepladder when he absolutely cannot wait another minute to take down the dead frond on the top of the palm tree. I'm the one to hand him the SPF 15 and a t-shirt and floppy hat-over-the-ears hat when he wants to walk outdoors.

O.K., so now WE have done all of this together for the past 11 years. And now ask me if I'd like to do it for another 30 or 40 years. Absolutely, because I want to keep him around for as long as I can. The past 11 years may not have been a pleasure every moment, but it has been my pleasure to be my husband's caregiver. I am grateful for every day. I am grateful for his donor. I am grateful for the 4 grandchildren we have been able to enjoy for the past 11 years. I am thankful for meeting all the wonderful pre and post transplant recipients and donor families we have met during this time.

I am proud of my husband for giving back to transplantation by running the Have A Heart transplant support group for all these years and for helping the cause of reaching more organ donors. Have we both really had a heart transplant? Nah, but our jobs are really similar - to be upbeat at all times for each other - have a positive outlook - and be absolutely compliant with doctors orders, and have the absolutely best time of our lives, every day of our life. Thanks for listening to OUR story. God Bless all of you.

From My Heart,

Adrienne Steiner

Hi. My name is Andrew Wilson. I am 26 years old and live in the North West of England. I underwent a Heart Transplant at Harefield Hospital back in December 1987 and became the World's Youngest Domino Transplant along with my donor Samantha Dawkins. Here is my story...

Stormy Waters Ahead

It all started when I was ten days old and I contracted suspected Meningitis, the virus attacked my heart muscle, the doctors at Warrington General Hospital also suspected I had also suffered from a stroke leaving me with slight brain damage and a weakness down my right side.

My early life was spent in and out of hospitals, suffering from many chest infections and viruses. I was placed under heart consultant Dr Arnold at Myrtle Street Children's Hospital in Liverpool. I was placed on a cocktail of drugs from an early age such as digoxin, frusimide aimed to stop my failing heart.

As I grew older into my childhood, my condition worsened and I was un able to do the normal things kids did back then, I was a mad football fan and was unable to play football or walk very far without feeling breathless and tired.

As the years drew on it was decided to transfer me to Harefield Hospital as Dr Arnold had told my mum (Sue) and dad (Bryan) that there was nothing more they could do and that I needed a heart transplant, so we waited for the call to go down to Harefield…

Transplant Years- The Gift Of Life!

Finally we got the call to go down to Harefield and little did my parents and I know the life changing effects that one journey would have…

I underwent the tests and expected to be home in time for Christmas after being put on the waiting list.

In the early hours of December 17th, 1987, I was visited by none other than Professor Sir Magdi Yacoub and after seeing me told my mum and dad that I needed a heart transplant and there was a heart available that very night!

A young Scottish girl named Samantha Dawkins who had suffered from cystic fibrosis needed a new heart and lung transplant and had decided to donate her heart for transplantation.

Both my parents were left with little time to decide on the life saving operation, but woke me later that night and told me I was going to have a heart transplant!

Funny as it sounds, my parents told me I was in high spirits as I went down to theatre; my parents then said good bye and my life was about to change.

The operation itself went on for nine hours and after a few hairy moments placing me on the life support machine, the operation was a success.

I spent over six months at Harefield and in that time lived in Harefield Village in the designated flats for the patients well before Parkwood was built.

Eventually I was able to finally meet the young girl who had saved my life and soon enough we had struck up a friendship I was given a St Christopher medal with the message "With All My Heart Samantha." I also gave her a golden heart locket, the gifts symbolised the bond between us.

I had expected setbacks with rejection in the early days including a biopsy which had gone wrong, a surgeon accidentally went through an artery in my neck causing blood to flow into my chest and lungs, I was then placed into intensive care where eventually I recovered.

Despite that my childhood from the age of nine changed for the better as I was finally able to play football, run in local school races and do everything my fellow friends could do, it was indeed a whole new experience and a welcome one!

Whilst down in Harefield both Samantha and myself had the opportunity to meet H.R.H. The Duchess Of York when she opened at the time the new intensive care unit.

We also appeared on such programmes as T.V.AM and Bodymatters, and were interviewed by the national newspapers (I guess you could say we were celebs Ha…)

I also helped in fund raising for Harefield and the British Heart Foundation. Being a Liverpool fan I was also lucky enough to have my childhood dream granted and became the mascot for the reds back in 1988.

"My Heart Is Yours"

For eighteen months both Samantha and myself enjoyed a bond beyond friendship, we often kept in touch taking a holiday to Blackpool, as well as spending time together at Christmas.

As time drew on Samantha unfortunately contracted a virus and desperately needed a new transplant, though sadly this time there wasn't a donor available and she died a day after her 17th birthday in 1989. I take comfort in the fact that a part of Sam still lives on inside me, and that I got to see her before she died.

After Samantha's tragic death, I appeared again on T.V.A.M talking about the need for donors. Since then, though I have found it hard, I have tried to move on. I still keep in contact with Samantha's family (Liz, Roger and Jason).

Health wise I have gone from strength to strength with only my last rejection in 1993 and a heart rhythm disorder in 1996. I was then placed under Dr. Banner; I then underwent a small procedure to stop and restart my heart, thankfully it worked and with the help of medication I recovered...

Flash Back - Be Positive in Mind!

With regards to my schooling I attended Hamblett School which was a school for children with disabilities as I also suffer with cerebral palsy, I eventually left after my transplant and moved into main stream where I then moved on to college gaining a G.N.V.Q in business studies at Distinction level and also a G.C.S.E In both English Lit and Language grades A for course work and B and C for the respective exams. I also studied on a creative writing course gaining university credits though I did not take up that option.

Despite my limited school access before and after my transplant I was still able to achieve my goals within education with a positive determination that I am indeed proud of!

Message Of Hope!

This December, is my sixteen year anniversary and looking back I am eternally grateful to Samantha and her family, not to mention all the doctors at Harefield, for their continuing dedication and support to fellow Transplants like myself. Despite some challenging times my transplant has given me and many other people years of happiness and long may it continue...

A New Century, A New Man.

I am now a singer/songwriter and was a member of the British Music Academy, I have written for Eurovision with a track called "Come Together", back in 2001, and was later aired on "Radio Merseyside." which was a huge boost. I have also written for a local arts theatre in 2002. It is now 2004 and I’m preparing to go into the studio to lay down some of the tracks I have written including an animated cartoon like track "Where Are You Now" which I hope to pass on to future publishers.

I am also a keen writer and have written both novels and poems in the past. I have decided to end the story but not the journey with a poem I wrote a few years after my heart transplant, which I hope you enjoy.

HEART TRANSPLANT

No football, no biking,
No running, no hiking,
Bleep goes the machine,
You lie there so weak,
Why is life so mean?

With the oxygen mask,
Life's a uphill task,
Oh donor come fast,
And save me at last.

A donor is found,
Put your feet on the ground,
And jump up for joy,
Life's changing my boy.

Yes to football, Yes to biking
Yes to running, Yes to hiking,
No more bleeps from that
dreaded machine, Life is better than ever it's been.

Your no longer wistful-
As you run in the grass-
Thanks to the gift of life,
Your problems may pass...

This poem was written when I was Eleven years old and is dedicated to the lasting memory of my donor Samantha and all who have helped me through the years: A big thank you to all!

And So The Journey Continues...

My name is Andy, and I live in Halesowen, England. On the 5th of October 1998 I had a heart transplant at the age of 37 after suffering from a heart disease called Cardiomyopathy which causes the heart to become enlarged.

During July 1998 I had a cough that my GP doctor could not cure after several visits to see him, during which time I was becoming more and more short of breath. On Saturday 1st August 1998 I was admitted to Wordsley Hospital in Stourbridge onto the medical admissions ward, where I was diagnosed as having fluid on the chest affecting the heart. Three days later I was put on the medical ward, where the doctors diagnosed an enlarged heart or Cardiomyopathy (a disease which can be hard to detect in the early stages of its development) and told to have total bed rest. On the following Sunday I had two heart attacks and was put on the Cardiac Care Ward, where I was sent for more tests including echo and CT scans. The doctors tried to treat the heart condition, but with no success.

Then one day Dr. Forsey, my doctor, came and told me they were sending me to the Queen Elizabeth Hospital in Birmingham for assessment, at which time I said to him is it for a transplant and he said yes. I was transferred by emergency ambulance with blue lights and siren on. It was the August bank holiday weekend. On arrival the ambulance was met by a porter with oxygen, and another porter stopping people using the lift, and I was rushed to the cardiac high dependency unit. At the time I was not aware of what was happening, I woke up the next day with tubes and drips attached to me. Over the few days I was sent for various tests. On the Monday the Consultant, Mr. Bonser, told my family and I that my only hope was a heart transplant and I was put on the transplant list. Two days later I nearly had a transplant but the heart was no good. I was then sent back to Wordsley Hospital to wait for a transplant.

Over the next few weeks my condition deteriorated more and more and the need for a donor heart became more desperate. During that time my weight went from 72 kgs (159 lbs) down to 46 kgs (101 lbs). Then, on the evening of Sunday October 4th at about 9pm, a nurse came and said they needed me at the Queen Elizabeth Hospital as there was a chance of a transplant. I was transferred again by emergency ambulance to Queen Elizabeth Hospital where I was joined by my family and waited for a yes or no decision. At 12:30am Sharon from the transplant team came and said the transplant was on and I would be going to the operating theatre soon. The last thing I remember before the operation is the needle being put in the back of my hand; the time was 01:10 hrs (1:10am).

I was kept sedated for two days in intensive care after the operation, after which I was moved to the High Dependency unit. The first thing I remember is talking to a nurse as I was moved to the ward. While on this ward I was given a blood transfusion, and then I caught a urine infection for which I was treated. After a further two weeks I was moved to the normal cardiac ward, where I started to improve. After another week I was allowed home, 3 weeks after the transplant after spending a total of 14 weeks in the hospital. I was sent carrying a large box of drugs!

I spent the next 6 weeks in and out of the hospital, once with rejection, once with a stomach problem and a collapsed lung and with another related problem. I finally came out of the hospital the week before Christmas 1998. And returned to work as a gardener at Birmingham botanical gardens 13 weeks after the transplant -- I did this only after the doctors said it was ok to do so. I returned to the hospital for regular check ups, initially 2 times a week, then once a week, once a month, every six weeks, every 2 months, every 3 months and now every 6 months.

I am now a member of The American Transplant Association so I can give support to patients wherever they live. I was the first person from England to join this Association.

Rich and Dead

Bill Wohl figures he’s had about thirteen miracles in the last six years. And he’s not tired of counting. Two 100% blocked arteries, a heart attack, a total artificial heart, two thoracotomies and finally a heart transplant – he’s had quite the journey.

I met Bill in 2003 in Nancy, France, where we were both competing as transplant athletes at the World Transplant Games. The Games are Olympic-styled competitions for people with life-saving transplants, and they take place in a different country every two years. There are also U.S. Transplant Games, held in different cities every two years. When I met Bill in France I was struck by his warmth, caring, generosity and kindness. As I was to learn later, this was not how he used to be; these were traits he now says he inherited along with his heart.

Bill is a man who had been totally driven in his life. A serious athlete since the age of four, an elite high school and college track and field athlete, a professional Box Lacrosse player – he was a jock, a hot shot by his own admission. But when he realized that he could earn seven times the money as an entrepreneur rather than as an athlete – he was not quite a Lance Armstrong, even though they share the same birthday and the same passion to push beyond limits and escape death – he decided to turn his passion to upscale satellite and electronic systems and the needs of the rich and famous who wanted his services.

He left the world of sports behind and went on a different fast track, setting up satellite and home theatre systems for the Phoenix Suns, Michael Jordan, Charles Barkley, the 1996 Olympics in Atlanta, Championship fights, the 1998 World Cup Competitions, and the King and Queen of Saudi Arabia, just to name a few. Bill likes to say, with a grin and a glint in his eye, "I’ve always had a boring life."

His business was everything. He wasn’t at all interested in helping others or reaching out to people less fortunate. It was money and business, twenty-four/seven. He and his wife built a 9,250 plus square foot home in the mountains Pinnacle Peak area of Scottsdale, Arizona. Lobster, crab, shrimp, pork chops and gravy were the standard dinner fare for them and their children. Overworked, overweight and stressed from the lifestyle he had created for himself, he got very sick. On Easter Sunday 1999, after seven hours thinking he had food poisoning, he went to the emergency room, feeling ill but unaware that he had just had a heart attack. With two arteries blocked one hundred percent and one blocked seventy-five percent, the doctors couldn’t understand how he was still alive. It seems that an untreated jaw infection released plaque into his arteries, causing the blockage. Even though he had an angioplasty with two stents to open the two most severely blocked arteries, his heart was significantly damaged from the heart attack, and he was left with only fifteen percent heart function. Over the next six months Bill was hospitalized seventeen times. The man who was used to pushing to the limits now found he could only do half of anything before he had to rest. He was exhausted, weak, and told he needed a heart transplant if he were to survive.

The problem was, he was too sick for a transplant and could not get on the List. The doctors said they wouldn’t waste a heart on him, they didn’t think he’d survive the surgery. The jaw infection that caused the heart attack was still there and wouldn’t go away. During one of his many hospitalizations in the spring of 1999, his heart stopped, and Bill had to be paddled three times to get his heart beating again. In addition to heart failure, his liver, lungs, and kidneys were also failing. He was given diuretic medications, and they removed fourteen pounds of fluid from his heart and a pacemaker, defibrillator, computer implant during one stay. He got pneumonia. He was a mess.

At that point, Bill received his first transplant, but it was not with a human heart. It was with a device called a Cardio West Total Artificial Heart, an amazing new technology that serves as a bridge for some of the people waiting for human hearts that are not available. Bill’s heart was removed, the artificial heart was sewn in its place, and tubes, or lines, were connected externally to a huge machine the size of a washing machine that weighed four hundred pounds. This amazing piece of technology has saved many lives. The average length of time a person spends on a Total Artificial Heart is thirty to fifty days, by which time a human heart hopefully would become available. But Bill was on the artificial heart for one hundred fifty nine days, and for the entire first month of that time, he was in a coma. The Doctors never expected him to wake up! When he awakened he couldn’t talk, walk, or eat, or even stand and had to learn all of that again, starting from scratch.

After he awakened from the coma he caught Klebsiella, a gram negative rod infection that was running rampant in hospitals then. He needed seven blood transfusions, two thoracotomy surgeries, and at one point, four IV’s on each arm, pouring in state-of-the-art antibiotics to try and kill the infection. When Bill could walk again and the infection was gone, he started working out in the hospital gym. The Doctors just shook their heads because no one survives Impaema especially on a device. Of course he couldn’t go anywhere without his entourage: the four hundred pound Artificial Heart machine, an engineer, a nurse, his wheelchair, and IV poles. When they got to the gym, the machine was plugged into the ceiling for the necessary electricity and air circuitry that kept the Artificial Heart going. With time and much effort he became stronger, and was eventually able to work out in the gym seven days a week, accompanied, of course, by his entourage. By this time he was number one on the heart transplant list, but no heart his size and blood type was available.

Michael Brady was only in the fifth grade when he wrote an essay saying that he wanted to be an organ donor. As he grew up he was known for his kind and warm heart. He was a spiritual, deep feeling man. It was in his nature to help people, and still waiting to achieve success and recognition as a Hollywood stuntman, he wanted to help those less blessed even though he was just getting by at the time.

Brady Michaels (that was his screen name, and became his legally changed name) was meticulous in his work. Every stunt was carefully planned, down to the minutest detail. He was driven to be the best in his profession. He was thirty-six on the day tragedy struck. While preparing a stunt that involved a train boxcar, Michaels slipped on an extension ladder and fell, hitting his head, crushing his skull on a river rock. It was an irony that the man who had performed so many dangerous stunts without injury was brought down by a fall from a still, standing ladder. On the fourth day after his accident, Brady Michaels was declared brain dead. His family agreed to donate his organs.

Bill says, "On February 22, 2000, God truly blessed me with the best heart. I remained in the hospital for two months, finally going home to celebrate my daughter’s eighteenth birthday. Amidst all the challenges I faced with rehabilitation from my transplant, I was keenly aware that my values, feelings, and life choices were mysteriously shifting. As miraculous and monumental as my heart transplant was, I just couldn’t attribute the changes to that. I knew there was something very profound happening. Eventually, when I met my donor’s family, the information I learned both astonished me and made total sense."

At first, though, Bill Wohl knew nothing about his donor because information about donors and recipients is kept confidential, out of respect for everyone’s privacy. If, at some later date, everyone wants to meet, information can be exchanged at that time.

"I was a classical Rock music buff, but after my transplant I began listening to more jazz. One day in the car, listening to a station I never tuned into before, I heard a song by the artist Sade. I broke down and cried, and couldn’t understand why the song struck me so hard. Then, nine months after my transplant, I had my first contact with my donor’s family. After we spoke, I sent them a CD with some of Sade’s songs. I told them that it moved me and I didn’t know why, but that I wanted to share the lyrics with them. I spoke with Michael’s Brother Chris and he said that Sade was one of Brady’s favorite artists. He also told me that Brady loved to drum, since he was a kid with a drum set, something I had never done and wasn’t at all interested in."

And there was more. Before he became so deathly ill and needed a heart transplant, Bill was primarily focused on business, how to get ahead, and how to make money. He wasn’t interested in helping others, just looked after himself, his family, and his satellite business. Now he was filled with compassion, looking for people to help. He has created a foundation to Promote Donor Awareness, Transplant Athletics and Scholarships for Kids. The once tireless efforts to promote his business are now turned to promoting organ and tissue donation.

Life is more balanced than before. He would never go back to the insanity of the days before he got sick, but he loves to work out and push himself. One day’s typical workout schedule would include a twenty-five to forty mile bike ride at the crack of dawn (it gets hot early in Scottsdale), followed by some breakfast and a little business, then a run, some serious weight lifting, stretching and core work, and on a good day 1200 to 1600 meters in the pool. Then back to work for a few hours.

He attends the U.S. and World Transplant Games and other International Games, winning medals in cycling, track, and swimming. When he’s not working out or competing as an elite athlete in one or another event, Bill is busy interviewing with the media. His picture was on the cover of Life Magazine; he’s been featured in People Magazine, National Public Radio, Fox TV, NBC, PBS,ESPN, and more. All of this is done with gratitude for Brady Michaels, his donor, and with a total zest for life.

Bill found himself craving salads after his transplant, and the rich diet he had loved before, fell away. He learned later that, Brady Michaels had gone through a cleansing period, eating salads and giving up rich foods.

And of course, Bill finds himself drumming at any odd moment, in the gym or anywhere there’s something handy for tapping out a rhythm.

Hi, I’m Bob Pitcock. I am a heart transplant survivor (17 years out), from Houston, Texas. I received my transplant back in 1991 at the "Texas Heart Institute" at St. Luke’s Hospital. I designed this T-shirt (see photo), with my own personal sketch of a "Lit'l Praying Boy", with a phrase out to the side, honoring organ donors and their families. That phrase came directly from my heart.

I correspond via email with several heart transplant recipients in England nearly every day. Some of us have a lot in common, as we are accomplished musicians with heart transplants.

One of my hobbies is old cars, and this is my favorite photo - my 1957 Ford Fairlane 2-door hardtop, back in 1987. The local newspaper published an article about me.

I'll always remember April 1st 1985. That's the day that I experienced my very first heart attack. I was 45 years old at the time, and thought that I was in very good healthy condition. Unknown blockages in my arteries around my heart let me know right fast that I was in deep trouble. I spent 6 days in the hospital, requiring a cath exam, then medication to control my cardiac system. The following year, in December 1986, I was taken from my 18 wheeler, and transported to a hospital again. This time, my hospital stay required a double bypass open heart operation. I recovered from that and went back on the road, trucking again. Everything went great until December 1988. While I was singing on stage at our local C/W show, I had another heart attack, right up there, behind the microphone.....rushed to the hospital.......got stabilized, after 8 days, then went back to trucking again. I was feeling fine for the next 11 months, then the big one hit. This time, the heart attack, after all of the others, had weakened my heart so much, that my Cardiologist, Dr. Manviwalla, suggested a complete heart transplant. I don't really know all of the medical technical names for my heart troubles, but there were about 3 different reasons. About 40% of my heart muscle was damaged. I went through a 4 day workup, at St. Luke's Hospital in Houston, Texas to determine whether I was a candidate for a transplant. NO PROBLEM....I was immediately put on the waiting list. 9 months later, I got my call from the transplant coordinator to come on down, that there was a donor heart available in Florida. A surgical team boarded a jet here in Houston and flew all the way to Florida to harvest the donor heart. In the meantime, 17 people showed up at the hospital to offer their loving support.....all of my children, my parents, my sisters, and brothers-in-law. The surgical team arrived back in Houston, and my transplant was performed in the early morning hours. I was told that the operation only took less than 3 hours. I won't go into all of the details of PRE and POST procedures, because we all basically have the same things. 16 days after my transplant, I was released to go home. HOORAY!!! I have had no rejection episodes at all, in almost 17 years. My 17 year annual checkup is on Jan 30th and 31st 2008. I only go in for an (outpatient) checkup, just once per year. The only complication that I've had.....a stint was inserted back in 1998, because of a slight blockage. I am now retired from trucking over the road, and spend a lot of my time spreading the word about Organ Donation. I personally sketched a picture of a "Lit'l Praying Boy", to honor all organ donors and their wonderful families. I ordered 20 Tee-shirts, with this sketch, and mailed some of them to my heart transplant pals in England UK & Australia. I truly enjoy corresponding VIA email, with other recipients from all over the world. The best advice that I received post transplant: TRY YOUR BEST TO NOT BE AROUND PEOPLE WITH NEGATIVE ATTITUDES...it's worked really well, by golly. "St. Peter just keeps on dusting off my Welcome Mat"

Some people try to turn back their odometers. Not me – I want people to know why I look this way. I've traveled a long way and some of the roads weren't paved…with this heart transplant of mine, by golly...living & loving it, though…stay HAPPY & don't let negative people pull you down. When you see someone without a smile, give them one of yours. Happiness seems to rub off on others…Laugh & roll with the flow. Being POSITIVE is not an impossible task…TRY IT-YOU'LL LIKE IT!!

When I was a child, I always believed in fairytales and the unbelievable. I had a huge toy castle with knights and horses and I believed in chivalry and righteousness. My dad taught me to be strong he said that I could do anything I put my mind to. His motivation prepared me to be a fighter.

In September of 1989 I was struck on my motorcycle by a sanitation truck that came up a one-way street the wrong way. When they brought me to the hospital, doctors found that I wasn't injured from the accident but there was a spot on an x-ray just below my Adams-apple that wasn't supposed to be there. After a biopsy, it was diagnosed as Hodgkin's disease. At the time, I thought any kind of cancer was a death sentence but my doctor assured me that it was curable. They removed my spleen to stage the disease and after doing so told me that I was still stage one because it hadn't spread. I was treated with radiation for a month and afterward my oncologist told me that I was in remission.

Two years later I lost gradually lost my voice while singing with a band. When it didn't return I went to the oncology unit for a check up and was told after several tests that the lymphoma had returned this time they removed my appendix and several lymph nodes in staging its advancement. I was given 13 courses of chemotherapy and was again declared in remission.

A month later a CAT scan revealed another spot. This time it was in my right lung. The lower lobe was removed in order to biopsy the mass. Again, it was Hodgkin's. The only hope for me was a bone marrow transplant. I went into the hospital for what was supposed to be three months while they completely broke me down with high doses of extremely toxic chemotherapy's. It was so strong that it killed the cancer but also destroyed my entire immune system. At that time the slightest infection could have killed me. I was the boy in the bubble. However, after receiving a stem cell transplant where my own cells removed, blasted with radiation to kill any cancer, and re-injected, I made it out of the unit in just 21 days. It was a record.

I was recovering well but six months later I began to lose my breath. I thought it was asthma but it got so bad that I couldn't strum my guitar. When I went to the cardiologist he ran several tests and then told me that I was in congestive heart failure. My heart was enlarged and I was given two months to live. He said that a transplant was out of the question because of my past history of cancer even though I was in remission over six months.

I wrote a letter to Dr. Drusin at Colombia Presbyterian asking what my chances were if there was any chance at all of being listed. He contacted my doctors and decided that if I was in remission a full year that they could transplant me. I waited out the year and was given special IV medication that helped keep me alive. In the end I was admitted into the hospital where I waited three and a half months. On March 17 1996, I was transplanted.

I'll never forget the feeling of waking up and finding that my feet were warm for the first time in years.

After that, I met my wife Nancy while performing at a cabaret show. I proposed to her at a transplant party hosted by the Gift of Life. A few months later I developed osteoporosis and it became so bad that I had to have a total knee replacement of my left knee. Following that there were two elbow surgeries to remove calcium deposits. (My friends call me Spare Parts.) I thought she wouldn't stick it out but Nancy stood by my side and we were married October 12 1998.

Then the greatest miracle of all happened. Nancy became pregnant and we had twin boys Jonathan and Daniel on October 27 2000. I will never forget the feeling of holding them in my arms for the first time. I am the home parent during the day and I have to say that being a dad is the greatest thing I could have ever lived for. I owe it all to the person who donated their heart so that I might live. The only way I know of to say thanks is to help the next person waiting.

P.S. I saved my toy castle from years ago in hopes that I would have a child. Can you believe it?

A Change of Heart

On Easter Sunday, March 31, 1991, I had a change of heart – literally! On that date I was the joyful recipient of a heart transplant. A procedure that had become almost routine to the medical profession was an answer to prayer to me in the form of a 20th century miracle.

My two-year struggle with heart disease at the age of 44 began on March 11, 1989. Early that morning I suffered a major heart attack.

I was not in the high-risk category. I never smoked or used non-prescription drugs, and I jogged two miles three times a week. Later, I asked Dr. Burke, my internist, why it had happened. He said, “It should not have happened." He could not explain the event.

Recovery from the heart attack was both a physical, emotional and spiritual journey. I was terribly angry with God. I asked Him: “Why did you allow this to happen – I have done everything I was suppose to do." Little did I know, but my difficulties and trials with my heart had only begun.

I returned to work in June 1989. On July 12 My friend, Dewey Lyall, and I were going to lunch together. He needed to make a stop on the way to pay a bill so I went ahead and he would join me at the restaurant. The instant I walked into the restaurant I felt faint, weak, and dizzy. I sat down at the first table I saw. The next thing I knew was that I was lying on my side on the chair beside me. Dewey came in about then and an ambulance was called.

On the way to the hospital I heard the medic declare that He could not find a pulse. In the emergency room I heard a nurse twice say: “No pulse, no pressure." I remember being told, also, that I was not going to die.

My next memory was being in the Coronary Care Unit (CCU) on a ventilator. My wife, Sylvia, and my son, Mike, were with me. My arms were tied to the bed rail so I would not pull the tube out of my throat. The next day, Dr. Clark, came to visit me on rounds. He was the cardiologist who took care of me in the emergency room. I said to him; “I guess this was serious?" He replied: “You were close." I asked him if he had said that I was not going to die. He replied that he had not and that no one else in the room had said that.

I pondered that reply for a couple days and realized that no human voice told me that. In retrospect, it was the most comforting and loving voice I had ever heard. I had no reservations or doubts about its claim. I believe that voice was from God.

I learned from Lisa, my nurse, that I had an attack of Ventricular Tachycardia (VT) or “Sudden Death". VT occurs because of a failure of the electrical system in the heart. It is a rapid fire, ineffectual beating of the heart that often leads in death.

After several tests of my hearts condition, my cardiologist recommended to me the use of an Automatic Implantable Cardioverter Defibrullator (AICD) system to control my heart rhythm problem. An AICD consists of a pulse generator implanted in my abdomen with lead wires to the heart. It works in reverse to the operation of a pacemaker. The AICD senses when the heart beats too fast. If this occurs the AICD delivers an electric shock directly to the surface of my heart halting the arrhythmia. Mine was implanted in July 1989.

In the next 20 months the AICD returned my rebellious heart to a normal rhythm many times. It discharged several times unnecessarily. This was when I had short urns of VT, which would have corrected itself, but the AICD did not know the difference.

The Waiting Game

By the fall of 1990 my heart had weakened to the point of being in heart failure. I would become short of breath and fatigued when walking up stairs, taking a shower, or performing the simplest of chores. During the previous February surgery was performed to help remedy the frequent arrhythmias. But it was only partially successful. By this time Doctors had begun talking to Sylvia about a transplant for me. I recall one day when I was still hospitalized walking the hall with Sylvia when she brought up the subject of a transplant. I was stunned that she would make such a suggestion. My response was immediate and strong – No heart transplant for me. I did not need one.

During the next few weeks, Sylvia and I struggled to deal with the issue. By mid-October we had come to the conclusion that I should have the transplant. In mid-November I was accepted as a candidate for a heart transplant at the George Washington University Medical Center. I was placed on their waiting list. I was told that it would be about a yearlong wait to the transplant.

The following months were tense. There was always the possibility that a heart would become available. Sylvia and I had to be ready all the time. Thanksgiving came and passed. Christmas and New Year’s came and went – and not heart. In early January 1991 my heart failure became so severe that I had to be hospitalized.

Sylvia and I became friends with Gene and Barbara Hozaphel. Gene was just a few rooms down the hall from me and he too was waiting for a transplant. We would visit each other when our strength allowed it.

Transplant

On Saturday night, March 30, 1991, I learned that a donor heart had become available. The donor was a 21-year-old man who was the victim of a traffic accident. It was about 11:00 p.m. when the transplant coordinator told me, “…we have a heart for you." I immediately called Sylvia and Mike. Mike was home from college on Easter break. Sylvia, Mike and Sylvia’s parents were at the hospital around 1:00 a.m. on Easter Sunday. The process began for the life-saving operation.

On Sunday morning I was taken to the operating room. My surgeon would be Dr. Benjamin Aaron. He was the surgeon who operated on President Reagan when he was shot. I told Dr. Aaron to be sure to take out the AICD. The operation began later that morning and was completed by early evening.

Recovery from the operation was difficult. For the first week I was in isolation to protect me from infection. I was in the “Reagan Room" – the room in which President Reagan recovered since it could easily be guarded by the secret service. When Sylvia and Mike visited, they had to wear gowns, shoe and hair coverings, and masks. I developed a serious bout of pneumonia and was extremely week.

Upon being released from isolation I went to a regular room. Visitors still needed to wear hospital garb to protect me from infection. I had the use of an exercise bike in the room and was encouraged to use it. Gradually, I became stronger and on May 8 I was discharged and returned home. It was a momentous occasion.

The Road Back

A few days after returning home Sylvia and I were in our yard when our neighbor, Mack McKinney came over to me. He greeted us and I replied: “You are looking at a miracle here you know." He replied: “Yes, I know." Indeed that was the summation of my story.

The transplant has made a life saving difference in my life and that of my family and friends. I am now able to lift my grandson to eye level and see the sparkle in his eyes. I can mow the lawn, carry firewood, plant a shrub, and go to work. When Sylvia talks me into it, I can even help vacuum the house and take out the trash. The transplant was the final defense for a heart at war with itself. It was a war that without a transplant I would have lost.

My survival was not luck; it was not an accident. It was a miraculous gift from God. Parallels between the gift of my donor and his family and that of Christ’s gift of eternal life are compelling. My heart was given unconditionally, with no strings attached, and without compensation. It was free, yet came at a high price. It required that a great loss be inflicted on the donor.

Prior to the transplant, I claimed Ezekiel 36:26 as MY verse:
“Moreover, I will give you a new heart and put a new heart within you; and I will remove the heart of stone from your flesh and give you a heart of flesh."

I received my new heart on Easter Sunday, 1991. It has changed everything. I have written a book, Mr. NewHeart – Heart Attack to Transplant and Beyond, which describes my transplant experience. It may be purchased at www.lulu.com/dshollar and Toll Free 877-289-2665.

My story is a bit different than most, but I am happily here to tell about it. I had rarely been sick throughout my entire life. At one point I worked 23 years without missing a day of work. Then, on a Saturday morning in the spring of 2007 I was sitting in my den, at my desk downloading pictures from my camera that had been taken while on vacation the week before and the last thing I remember was seeing picture 45 load on to the PC ....... the next thing I remember was the black boots of the 3 paramedics in my den. My wife heard my collapse, called 9-1-1 and started CPR. I regained consciousness and was transported to the hospital, a heart cath showed 3 blockages and the doc said, "We'll fix those and have you out of here in 3 days"..... little did he know about the path I was about to take. A triple by-pass followed and things rapidly went down hill from there. My heart simply kept stopping ......... in a 2 week period I coded over 100 times. They tried many different drug therapies and even rechecked the surgery to make sure everything was correct. At one point, and it's one of very few things I remember, was that I was being transported to a larger facility to see if they could help. I was there about 5 days and the word "transplant" was mentioned to my family as my condition deteriorated daily. I was put on the donor list as an A-1, and I won the lottery that night ........ they found a heart that matched. It's a good heart and I'm trying to take very good care of it, every minute of every day. I thank God, my donor, my donor's family, the doctors and nurses and my family each and every day for the blessings bestowed upon me. If you like, you can read the longer version on my story on www.2ndHeartBeat.com.

Due to high cholesterol, a family history of heart problems, and 2 episodes ofl chest pain that took me to the ER, my Doctor told me that I needed to have a Cardiac Catherization. I worked in a hospital (as an MRI Technologist) so my insurance would only cover this procedure 100% if I had it done in the facility where I worked. I underwent this on 3/8/05, minutes into it the catheter was pushed through my left main artery causing a dissection of that artery. Due to this there was no blood flow to my heart. I had to be defibrillated twice (shocked with paddles) on the table, both times I was aware of the electricity going through me (terrifying to say the least). The hospital I was in was not capable of doing open-heart surgery which I required immediately, I had to be life-flighted to another facility. Due to the delay in getting me into surgery (over 4 hours) I had several heart attacks. The surgeon said to me every time she came in my room “You and I should not be having this conversation, you should not have survived this,God has kept you here for a reason” That statement has kept me going through all of this. There has been significant damage done to my heart. Specifically 36% of my left ventricle is scarred, I have an ejection fraction of 19% (normal is 50-65%)I have lost so much stamina and strength that just simple tasks can be overwhelming. A flight of stairs is like climbing Mt. Everest. I am weak, tired, nauseated, and have to lie down allot due to dizziness and the feeling that I'm going to pass out. I was admitted to The Cleveland Clinic on 5/11/05 and was found to be in severe cardiogenic shock, a life threatening condition. I had to have another Cath done which was an emotional nightmare for my family and myself again. The cardiologist placed 3 stents into my arteries. I was in ICU for 11 days, again, God kept me here. I have been told I will definitely need to have a heart transplant at some point but the longer they can keep my heart in me the better. They tried to keep me off the list by using medication. Unfortunately these meds did not work. July 05 I was found to be at high risk for “sudden cardiac death” which means my heart could just stop. I had a device called an ICD (defibrillator-pacemaker) inserted in my chest. Even if I could get myself strong enough to go back to work, I can no longer do the career of my choice because of the ICD. (This device cannot go in the magnetic field of the MRI machine). On Oct 20, 2007 I was placed on the national transplant list. I have had 2 “dry-runs” I feel my life has been put on hold and everyone else’s lives keep going. I have never been a patient person so waiting is really difficult for me. But with God’s help I am making it through no mater how difficult. After all I do believe he has kept me here for a reason and I want to be able to make that reason come to pass!

In 1988 I found out I had a virus that had attacked my heart and would eventually need a heart transplant. After about 25 different weeklong stays in the hospital to have fluid removed from my lungs, I then spent 48 days in isolation until a heart was found.

Two years after my transplant, I wrote to my donor family through the OPO and they accepted the letter and responded, saying they would also like to meet.

I contacted the OPO and they said that it was left to the transplanting hospital. The Mass General cardiac team said that it hadn't happened there before, and they would most likely let us meet, but at a neutral site and only after a team meeting. Well, the night before they were to meet, I received a phone call from Paul the owner of my health club, who said, “Jim I think I have some info on your donor family." I had told him about the letter, and now a woman who also worked out there, was telling him about a letter from her 16 year-old son’s heart recipient.

From her description, he thought it sounded like me. He asked what the parents’ names were? I said they left the first names on the letter and the mom’s name is not too common, it is Faith. He said, "Jim, she is standing right next to me."

I went down and met her. The first thing she asked was, can I hug you? And we hugged. I met the whole family that night. (The health club is in my town, but they live 3 towns away. I had been in Mass General, their son had been in a hospital in Rhode Island).

The next day, I called my team and said, "You can forget the meeting today; I met my donor family last night."

David, my donor, was 16 (he was hit by a car) went to Culinary High School; I always do the cooking in my house; he had a clubfoot; I have a clubfoot. And the first time I was at their house, I made a noise like the 3 stooges and his parents stopped and looked at me and said, David loved the stooges and always made that noise. Upon leaving their house, I came to the end of their street and ran into Hart Square; Hart is my wife’s maiden name.

Well now, David's only sibling Kristy (who was 12 when David passed) is now getting married and she wants me at her wedding in August 2003, she says it would mean so much to her. She is also having her reception in the hotel where the health club we’d met in is located, because it has special meaning to her.

Miracles? I think so.

My dad died of dilated cardomyopathy at the age of 51; his brother died from the same disease in his middle 50's; his sister died from it at 33. In the spirit of fairness, my mom also died of heart related discease as did both her brothers ... the youngest at 38. Mention heart disease to my family and the whole clan leaps to attention.

I was diagnosed with cardiomyopathy at 48; I was experiencing bouts of ventricular tachycardia and a rapid loss of energy and stamina; I lost my balance and past out during a tackycardia episode and was taken to the hospital. After a series of tests, I received the diagnosis. It was terrifying. As a youngster, I grew up knowing that such a diagnosis was a death sentence.

I soon received a pacemaker and a defibrillator and was told that, sooner or later, I would need a heart transplant. Throughout the next few months, there were frequent hospital visits as the defibrillator would increasingly blast off! One horrifying episode, it shocked my heart six times in a twenty five minute span. Less than a week later I was placed on the National Donor List, and began the wait for a new heart.

June 3, 2005, I was re - admitted to UCSF and told I would remain until a heart was available. The lead transplant surgeon, Dr. Charles Hoopes, told me that the staff would do everything possible to keep me alive. For me, life on the donor list was a spiritual, emotional, and physical roller coaster ... in that order. You see, I have been a catholic priest for 17 years and I have visited hundreds and hundreds of people in hospital and always knew the right thing to say; car accidents, cancer victims, heart attacks ... I could always provide words of comfort and hope. But, now that I was the one on the 10th floor cardiac unit, I couldn't provide an answer for myself. It was the single most humbling experience of my life.

The truth is, I didn't know what to pray for - for me to live, obviously meant someone else had to die and I couldn't reconcile "prayer" for any such intention. I shared my frustration and fear with a trusted friend who said, "The doctors and staff are doing everything they can to keep your body alive and rested and strong, maybe we can help your spirit rest as well." I don't want to sound overdramatic, but it was something of a turning point - I mean from that moment on, prayer became less about "doing" and more about "being". I simply tried (not always successfully) to rest in God's love and the love of my family and community. I would lie or sit and just try and feel their love - all the people who came to visit, parishoners, students I had taught, even people I didn't know who sent cards with words of hope - they held me when I couldn't hold myself.

August 5th, 2005, I received the word: Dr Dana McGlothlin and Dr. Theresa DeMarco came into my room and said, "Joe, we think we have a heart", and the following morning at 4:00am, I received a second chance at life.

There are no words to describe what it is like to walk around with another person's heart in my body; "gratitude" and "humility" don't even begin to describe the emotions. In those final weeks before the tranplant, I promised God that if it was His will to allow it, and my donor's family would provide it, I would serve His people (faith denomination is simply not relevant) each and every day of my life in joyful thanksgiving for this gift of life - so, whenever possible, I return to the 10th floor and visit those who are waiting; I sit and listen and pray with them, and I share my story and ask that they, too, rest within the gentle, healing love of God, and the care and support of their family.

Now, back on the "other side" of the bed, I try and offer the same vision of faith and hope I received - I offer it as tribute to my God of healing, my family and community of love, and my donor of life.

My name is Joseph Lipovsky and my transplant story begins in the spring of 2000, at the age of 40, though at the time I did not know it. I was driving back to my home in Peoria, IL after attending a farm auction and had a period of heart racing. I did not give this a great deal of thought because I attributed it too a "low blood sugar" and a need for food. In my manner of eating at the time I solved the problem by picking up a pair of "whoppers". The discomfort subsided and I gave it no more thought.

My hobbies involved woodworking, gardening, and tearing down and rebuilding olds barns among many things, and though living in town, we bought an old "slaptrap" 6-acre farm-ette in the country. We were busy renovating it and on August 12, 2000 I moved a 600 lb. block of sandstone with my 14-year-old son to the property to be used for an entry sign.

That is as far as the block got because on August 17, 2000 at 8:35 in the morning I call my wife from work just to touch base. She being a registered nurse, told me that my speech was slurred and told me to put the secretary on the line. She had them call an ambulance and had me taken to the hospital. I felt this reaction was out of hand because I didn't think anything was wrong, but I went along with it. I got to the hospital very quickly and they checked me out. They admitted me and did brain scans and checked my heart function. What they found was that I had had a major stroke. I had lost about one third of my left hemisphere. My heart function was also compromised, I had it turned out severe cardiomyopathy with an ejection fraction of 12%. That evening the stroke evolved and I was temporarily paralyzed on the right side. This resolved with heparin while I was at the hospital.

One week later I was discharged and sent home where I made great progress with speech, occupational and physical therapies to recover from the stroke. My family (4 brothers and a sister) made separate journeys from their homes in Maryland and Arizona to come and visit. My brother John asked me to multiply 100 by 1.5 and I couldn't at the time. I went through therapy and regained my right-sided use and strength. Apparently being young helped a great deal and I made what has been termed a full recovery from the stroke. My recall for old events is still in place, the only changes I note are that I dream very rarely now and that I no longer get migraines (one of the few good things). Over the month of September and October I started going into work for a few hours a few days a week, and attending rehab clinic. This did not last long and my boss told me to stay home and work on recovering.

During this period I started learning what heart failure was all about. I started retaining water, and got to the point where all I could eat was an egg-sized portion of food at a time. I started putting on water weight (or actually losing weight but retaining water). My kids started understanding the process when we took them to a Mexican restaurant for my fourth child's birthday on October 24th and I threw up the food there. The store went out of business at the end of that month and the kids blamed it's closing on me. I was admitted to the hospital eleven days before Thanksgiving. I had twenty-two pounds of fluid pulled off me caused by heart failure and I was stable enough to go home for Thanksgiving. I also had at the hospital a defibrillator placed in my chest for my arrhythmia. My new weight was 155 lbs (my college weight). Little did I expect that I would get back to that weight - but the route was not enjoyable. It was at this point in time that the doctors started talking transplant to me, and I started processing the concept. Thanksgiving was a nice period and we had guests but within a few days after I was feeling poorly again and putting on fluid. I was going to the hospital three times a week for intravenous therapy and getting fluid drawn off through the use of I.V. cardiac medications.

December 7, 2000 was a bad day, I woke up and developed a bad headache, which was not a typical one. My wife took me in to the hospital and it was determined that I was having a second stroke. This time they told me I had a right occipital stroke They said that this was caused by not being able to control my blood thickness well after installation of the defibrillator. That is how I remember it. I spent a week in the hospital this time and was informed that this stroke was not as bad as the first one. This one was on the right side and caused a loss of peripheral vision and caused some light feelings of paralysis on my left side. I was in the hospital for about a week as they tried to straighten my medications out. During this time it became very clear that I was heading down the road towards a transplant.

Mid December 2000 was a rough period. I accepted the concept that to live I was going to need a transplant. And through all of this my belief in God never wavered. I just accepted the idea that what I was going through was for a purpose I did not understand. And that it was for God to know and not me. This helped me through the process. I knew that I would not give up without a fight, because we had four kids to rise and I was not ready to "check out" of my own free will. Christmas came and went with me paying what attention I could to the process. I was now sleeping 20 hours a day and not "with it" much for the other four. I could still climb stairs but I was like a 90 year old in that I had to go up one at a time and rest at each one.

Jan. 6, I had a scheduled angiogram and measure of pulmonary arterial pressure. I was told that it was a four-hour procedure and then I would go home. A week later I went home. During the angiogram they found that my pulmonary arterial pressure was now compromised from the heart failure. Through medications during the hospital stay they were able to get my pulmonary arterial pressure back within the acceptable range and thereby got me in a condition acceptable for a transplant. I was told that they got me on the transplant list on the Jan 11th. I was sent home after having a central line installed and was given intravenous meds to take this way. Having a wife who was a trained as a nurse definitely helped.

Now the wait started, but it was not long. With a weight of 150 lbs and having AB+ blood type helped a lot. Three hearts were offered the first three days, but they were turned down by the clinic. The morning of January 25th brought a phone call that they were flying a surgeon out to check a heart. At about two o'clock the call came in to go to the hospital. They then started prepping me and around 6:00 they let me say bye to my wife and wheeled me in.

I received my heart from a 28-year-old male out of Pennsylvania and I am grateful for the chance at life that I was given. I have written to the family but I have not heard back. I will try again but give it some more time. I have not had dreams but I have had a desire to do stone carving that I had not had before – perhaps it is related.

I didn't wake up until the next morning. My wife had waited up all night for me, but I did not become conscious like they expected. The first day was not good, the heart was only functioning at 30% ejection fraction rather than the 60+% they were expecting. That had me worried also the fact that I was in acidosis. They were worried that I had thrown another clot. I went back to surgery and they installed an inflatable balloon pump in the aorta to control the blood flow to the heart, because the heart was working too hard. The acidosis it turned out was not caused by a clot and slowly reversed itself. Normally they have the transplant up the next day to walk. I remained intubated for four days. I remember my wife telling me before the transplant not to fight the tube and I didn't. All my life I had done things for myself, but at this time I was truly at the mercy of others. I just lay back and let others do their job, and I said a lot of prayers.

I was in the hospital for two weeks after the transplant. I did everything that they said. I also ate like a horse and had a double portion for breakfast, lunch and dinner. They got me on the treadmill every day when I was there and I got up to 1.2 miles per hour. For a guy who used to be a runner, this seemed pretty pathetic to me. I also got to walk up and down the stairwell as well as doing walks on the floor. Before being discharged they did another biopsy that showed my ejection fraction at 35%. Winter in Illinois is cold and there was a lot of snow outside with temperatures at night running -10 degrees F at this time. They sent me home where I was going to have to learn to live again in a non-protected environment. I had gotten used to the pampering treatment at the hospital.

For the first two weeks after the transplant I was not allowed to lift anything heavier than a gallon of milk. For the following two weeks I was limited to lifting two gallons of milk at a time. For me this seemed constraining because I wanted to clean the garage and get my woodworking going. This ended up waiting a couple of months. I was told to walk at least 10 minutes a day. I wore a path in the house from the back bedroom to the entry foyer. It took 50 laps to do the distance they wanted. One month after the transplant I started an exercise program at the hospital, which I found very helpful. I walked on treadmills and got up to 4.2 miles an hour and a 7% slope. After I finished the program at the hospital the weather was warm enough to start walking outside and I got up to walking 2 miles a day. Medicine-wise I had to get used to consuming the large pile of pills. I found this ironic because in college I had the rule I would not date anyone who was on a long-term medication (stupid, I know). Anyway I felt that God got me for that one. I started at 90 mg of prednisone a day and over time (a long time) got weaned off it completely. I had a rejection episode at 2 mg of prednisone a day and the doctors had to juggle my medication to get me past that.

Now two years out - life has become fairly normal again. I started back at my job part time 3 months after the transplant and reached full time eight months after the transplant - it's a desk job. I have only had two minor colds in that time span and take preventive measures. I have found that my short-term memory, which used to be almost legendary has faded considerably. I attribute this to medicine I am taking and have to get used to forgetting where I place my keys, etc. That is my biggest nuisance. I am glad to have my family and my wife and I love them dearly.

My wife Georjean has taken excellent care of me and our family through this process. I am eternally grateful and hope to make it up to her one day. I am getting back up to speed but it is a different speed than what I was used to (I can now only dig 8 thirty inch deep fencepost holes an hour instead of 12). She makes sure we all eat correctly and has made sure that our diet follows the guidelines. Our children Stephen 15, Andrew 14, Kate 11 and Nicholas 9 have had their own issues with this process. I cannot say it was easy on any of them. Kate and Nick have handled it the best, Stephen is the quiet type and Andrew is the emotional one. For each they have had to work through the situation and find their own form of peace.

My name is Joshua Canal. I am a heart transplant recipient and here is my story that got me to here.

I was born with several heart defects. At 18 months i had surgery to correct a co-arctation or the aorta. They also found out that one of my ventricles wasn't developing and told my parents that the only cure was a transplant, but it was not needed at the time. I lived like this for 17 years, an almost typical healthy young boy. Of course my lips were blue and i got short of breath quickly but other than that no complications.

In the fall on '97 I began to have flu like symptoms that would not go away and i was put on a 24 hr holter moniter. The results showed that my heart could no longer handle the work load and now it was time for transplant. I went on the list early December and sat at home waiting. My condition began to go down hill to the point where i could not even walk a few feet without being severely out of breath. I was admitted to the hospital to keep a closer watch on me mid December. After a week or so they decided they wanted a central line. I refused for several days, but was finally convinced by my dad. While I was having the central line placed, I coded on the table and was out for 45m-1h they got back enough of a heart beat to put me on something called echmo. I was on echmo for 5 days.

January 24,1998 around 10pm my parents and the hospital got the call we had been waiting for. There was a heart. I was in surgery by 2am and everything went great.

I have had only 2 episodes of rejection, one in the first year and one about 3 months ago, Currently I work as a paramedic in a Level one trauma center ER here in Tyler, Tx.

So that’s my story. I will be 10 years on in 2 weeks and I can't wait I am going to spend the weekend with my donor mom who I got to meet when I was in the hospital recently.

Thanx for this website it is great inspiration!

My daughter Lizzie was born early, at 27 and a half weeks, she weighed 2 lbs 14 oz. She had a very rough time but finally I was able to bring her home.

I had a 1 year old at home so I would sometimes compare them at the different stages babies go through, she did really very well until she was about 2 then I noticed that she was so much more quiet than her sister as well as very pale, but then she was blond and her sister was dark haired. I became concerned with her progress more and more as time went by, she had no energy and when she did play she would sometimes fall asleep during her play. I of course had been taking her to her pediatrician and she said nothing was wrong and that I should stop comparing the kids. As time went by I became more and more concerned and started taking her to many different doctors, some of them even told me she was a lazy child. Deep in my heart I knew something was very very wrong so I didn’t give up taking her to different doctors. Then 1 week before her 5th birthday a small town doctor told me her may have heard something different in her heart beat and sent me to his colleague who was a pediatric cardiologist, this was to be the first of many echos, within 5 minutes of the start of the echo the room filled with a group of doctors. They came into the room after I got her dressed and a nurse took her to color a picture for me and the doctor told me that Lizzie was very sick and close to death, and the only way we could save her was a transplant as soon as possible. I remember feeling like I was in a wind tunnel and I could hardly hear her, I started to shake and cry, I felt very alone as her dad and I was divorced at the time and my family all lived a long distance from me. I took her home and within a week I was at the Mayo clinic in Rochester Minnesota going through the process to get listed for transplant. Lizzie got her new heart on April 12th 1999. After she had been in surgery for several hours the doctor came out and told me that the new heart wouldn’t beat on its own and they hooked her up to a heart lung machine. My knees buckled and I fell to the floor, I again pulled myself together and waited until the time I could see her, it took a long time due to the difficulties they were having with the heart.

When I saw her for the first time I was shocked… so many tubes and wires I was so scared for her, her lungs started to bleed and they talked about the fact that they were doing everything they could that it was all in Gods hands at this point. I prayed and prayed for my baby. After about 4 days they told me that she needed to come off the ECMO due to the fact it was beginning to damage her other organs, this was terrifying. I had asked the doctor what would happen if the heart still didn’t beat on its own and she told me that at that point there would be nothing they could do for her. After what seemed like hours the nurse came and told me that it was beating on its own!!!!

She stayed in the hospital a total of about 3 months and we spent another month at the Ronald McDonald house there in Rochester. During all this time I had my other daughter with me as much as possible and when I couldn’t she stayed with my mom.

Lizzie has done very well since her transplant with only 2 episodes of rejection, both of them minor.

She does have some learning disabilities and memory trouble so I home school her to help her avoid the torment of the other kids at school… we tried public schools and it was a disaster for her.

Today Lizzie loves animals and really wants to be a model, she also loves photography, her phone and the computer. She is full of life and a really joy to be around. I thank God every day for my girls.

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 my heart 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 very Pear shaped. I actually had a Myocardial infarction (heart attack) on the operating table while the by-pass was being done.

This left me with a very damaged heart and I was assessed for transplantation at Harefield Hospital in West London. The assessment took five days, and every conceivable test was done to know if I really needed a heart transplant. I had to be sick enough to need a transplant, but strong enough to survive the operation. Every thing turned out as I had expected it to, and I was put onto the waiting list. After I was put on the transplant list, Carlton television 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 the world renowned Heart transplant surgeon. As I am a real Ham, I agreed. The program was called The Life Saver, and was transmitted on March 22nd 2000.

On the night I got my "call" for transplant just three and a half months after being assessed, 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?" I asked how long I had to get there, and she said "A couple of hours" As my case was already packed after my assessment for transplant, it was no real rush to get ready. The next phone call was from the Carlton television 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 hospital. 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 was actually in the toilet (as one would expect), when I heard Dr Gavin Wright, the consultant Anesthetist calling out to me to get a "move on" as they had to get me pronto into the operating theatre. I'm glad I had brown trousers on!! I met the Prof 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.

The operation took seven hours, and I recollect so well that they put me to sleep at 11.45 PM. When I awoke some thirty-six hours later (they kept me asleep for safety reasons), I remember one of the transplant coordinator's Tracey Jackson saying to me "Micky, you have the heart of a thirty nine year old man from Salisbury, and his family have just telephoned us to find out how you are doing". I then drifted back to sleep. As soon as I was moved from Intensive care unit to my own room, I was astounded at how quick the exercise program began, first with a pedal bike in the room, and then regular walks with Lorraine one of the Physiotherapist who started me on the "stair climbing" program. Within a couple of days I was able to do a double flight of stairs, compared to prior Transplant, when I found it hard to walk just a few yards, and even had difficulty in holding a conversation before getting out of breath. Such was the noticeable difference to me in getting a new heart.

Everything went fine, with the exception of some damage to my vocal chords, which does "occasionally" happen during transplantation because of the "breathing pipe" accidentally catching the vocal chords, and I was afraid it might have jeopardized my career as a singer musician. I was home in just seventeen days, and I thank God, that to date (over eight years), 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. I thank the Prof, all his team and the great staff at Harefield Hospital for giving me a new lease of life, and allowing my wife Julie to have some peace of mind after all the worries she has had over the years about my health.

About 20 months after my transplant, I received a large envelope from the transplant hospital, containing two letters. I knew that this was what I had been waiting for for some considerable time. They were letters from my Donor's family. One was from his wife and the other was from his parents. I learned so very much about the man whose heart was now keeping me alive. He was a computer systems analyst and his name was Jonathan. He played the violin and piano and golf was his main interest in sports. He was also involved in amateur dramatics and was in the process of writing a novel. There is too much about him to be put on this page, but I know that by just reading the letters that he was a good husband, son and father, and was being very deeply missed. I just thank the family as it was their joint decision to donate his organs after his tragic car accident, and in so doing have saved me and many others.

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 certainly is light at the end of the dark tunnel.

In April 1989, Nick was born with Hypoplastic Left Heart Syndrome, a fancy name for a really messed up heart. He had a type of surgery called the Norwood Procedure at five days at Egleston Children's Hospital in Atlanta, Georgia. He then had a right pulmonary repair at three and half months old, which included a seven weeks stay on a respirator, because of a damaged diaphragm nerve. Nick went on to have another surgery to repair the left pulmonary just after his first birthday. A few months before he turned two it was decided that Nick could only survive if he had a heart transplant. After a six weeks wait, Nick received his new heart on March 21, 1991.

Before being transplanted Nick was a blue color, only having an eighty-five percent oxygen level. Immediately after the transplant Nick was a nice healthy pink color. The first year after transplant was difficult. We made many midnight trips to the hospital, but in time the trips decreased. Nick suffered mostly from sinus troubles and ear infections, nothing serious, just troublesome. Nick grew and started pre-school, even rode the bus to school his first day of kindergarten. He has learned to swim, snow ski, water ski, and has seen forty-eight of the fifty states and thirteen countries in Europe. He has been a member of Team Georgia at eight of the Transplant Olympic. He is a manager for his high school football team and plays tennis. He will be attending college next year and hopes to major in Sports Management.

Today, sixteen years and eighteen birthdays later, Nick is doing well. Heart transplants are not a fix, but a treatment, so we still worry about rejection and the future. But with all things said and done, it has been wonderful to see Nick grow up, which would not have been possible without the wondrous gift of a heart from Nick's donor family.

I have written a book about Nick experience called "Nick’s New Heart." The book is about how our family coped and is coping with Nick's illness. It will be in bookstores the summer of 2008. You can learn more about Nick on my website www.susanCmay.com

Susan May
Proud mother of Nick May
"Nick's New Heart" in bookstores this summer

My name is Perry Kapano and I am a heart transplant recipient. My story starts in July of 1998. I was at that time having a cholesterol problem and saw a local doctor in my community. I went on Lipitor and thought the problem was licked. About two weeks later I started having chest pains. I went back to the doctor only to be told I only had a pulled chest muscle. I was given a painkiller and sent home.

I returned 5 days later complaining of the same chest pain, and was given another drug. This went on for about 10 visits until I was given an in-clinic EKG. I was sent to the local hospital ER and was hooked up there too. I was told I had a minor imperfection but that it warranted no concern. They tried to take blood and they couldn't get any. I was released because another emergency was arriving and told to take more pills.

A few days later I went back to my local doctor and told him I have a serious problem. He told me I wasn't a doctor and gave more pills to me again. I went to the ER a second time and again was turned away.

I collapsed on my bathroom floor two days later. I was rushed to another hospital and then sent to another hospital because they had to perform open-heart surgery right away. I got worse and was air lifted to the U of M to be put on the transplant list. I went on ECMO [Extra Corporeal Membrane Oxygenation] and stayed on for a week. My wife was told if a heart didn't come in soon they would have to take me off life support. My wife was told I had a 2% survival rate.

I received a heart 4 days later. I then took a stroke, had my kidneys shut down, and took a major rejection all in the same week. I stayed in the hospital for 5 weeks before I could go home.

As I write this it's been 4 years and I have had little or no problems since. I had CMV but that was treated and since then I have had no rejections. I know my story is not typical of heart transplants everywhere but it's my story nevertheless. The only advice I can offer on this site is to believe in your gut feelings and to listen to your own body. Don't always take the advice of one doctor; always get a second opinion.

Stay healthy and see you all around the board.

Remember way back to 1999, that’s when it all started. Couldn’t breathe and was continually coughing up the yuckiest looking stuff you ever saw (even made me sick). I really thought it was cancer because I had lost both parents to cancer. Well I got down on my knees and prayed to God to help me stop smoking. God does answer prayers. Please if you get nothing else out of all this please know that God does listen and does answer. I went in for tests: an X-ray and an ultra sound. Piece of cake, until they called Anna in and informed her I had severe CHF (Congestive Heart Failure) whew, what a relief. I thought I had cancer but it’s only my heart.

My EF (Ejection Fraction) was very low, only 15. (Normal is 55 to 65.) I certainly was transplant material. I had a couple of episodes Vtach so after my second episode of cardiac arrest they decided to put a pacemaker/defibrillator in me.

I must explain my feelings here about my reluctance to get a transplant. First of all I was tired of fighting, as a matter fact I was just plain tired. I was going to be sixty years old in 2004 and honestly didn’t think I deserved or was worthy of a new heart. I had lived my life and didn’t see much of a future. That was my position.

Doc’s are pretty good when they really care about you and Doctor Monroe will always be number one with me. While I was still in the hospital he called Anna at work and told her to talk some sense into me, there was nothing else they could do for me – I was going to die!

Anna and I talked. I thought about everyone I loved, and then I thought about my young son being raised alone by Anna or perhaps another man. After all she was still young and very pretty I am sure she would re-marry. The selfish part of Tom took over and decided I didn’t want that – I wanted my son to be raised by me.

I had an appointment with Doctor Aaronson at the University of Michigan to see if I was eligible to get on the heart transplant list. At this point I was in very bad shape and failing fast. Everything was set for the first week in October 2004.

My decline while in the hospital was pretty drastic. It was getting to the point my system was starting to shut down. The Doc’s came in and said "Tom you are in critical condition and we need to operate now." Before I knew it I was being wheeled off to have "AN OPERATION."

My first question: "What in God’s name happened to me?" My wife told me they had put an LVAD in me. A what? By January I was actually thinking I would be able to play a little golf in the spring. The LVAD was doing a great job.

January 25th 2005, 11:45PM the phone rings. Now you know nothing ever is good when getting a call that late at night, so it was with great trepidation that I picked up the call."Mr. Emahiser" the lady said, "This is the University of Michigan, I am Ms. Nurse person and I think you know what this call is all about." "I have great news, we have a heart for you!" she replied.

How do you say good-bye to your son who’s only seven and the love of your life? I tried to tell him how happy I was that Daddy was getting a new heart and at the same time not show him how afraid I was. I told him how much I loved him and that Mommy would see him later. He sort of acknowledged me – he was pretty sleepy. That’s okay little guy you sleep – please remember how much I love you.

At approximately 6:00PM the next day I took my first breath after being on the operating table for almost eleven hours. What a miracle – I was alive!! Thank you Lord! My second breath told me that I knew where I was and what was going on around me – what jubilation I felt – not only was I alive but I was lucid. I never was like this after my first operation. I knew the one thing that I must do no matter what, is to somehow try to tell his family just how much his gift meant. I was able to do that.

On the 25th of January 2005 Cory Cumberworth, 16 years young, met his untimely death on a country road in Michigan. Cory was an organ donor and gave seven people a new chance for life. I was one of those seven.