• Mike Berry - Help Save Mike

     

    Help Save Mike

    Mike Berry was born and raised in Kingston, ON, Canada. He is a carpenter by trade and is employed at the Kingston General Hospital.

    After not meeting the health criteria for a stem cell transplant in Chicago to treat Scleraderma, Mike is now pursuing a lung transplant at Toronto General Hospital.

    Follow Mike's Story at:

    www.helpsavemike.ca


  • Ian Robb - Inspiration

     

    Recipient Inspiration

    familyOn November 27, 2000, a fit Pastor Ian Robb entered Oshawa Lakeridge Hospital, Ontario, Canada for "day surgery" to remove his gall bladder. Within 24 hours, Ian was back in the emergency room with severe pains. He was admitted. After approximately five to seven days, Ian was transferred to the Intensive Care Unit, where he was intubated while critical, and his family was given the ARDS diagnosis (Acute Respiratory Distress Syndrome) ; ten days later, he was given a tracheotomy. Ian spent eight weeks in the ICU, where he was treated with approximately thirty different antibiotic drugs, as well as steroids which some think helps prevent damage to other vital organs. Ian had become septic, probably due to complications with the gall bladder operation. At one point Ian went without food for almost a week after his nasal feeder tube blocked. Weight continued to tumble and Ian was so de-conditioned that he was unable to stand.

    Ian was transferred to another ward, where he spent another four weeks. During this time, Ian was placed in isolation for 2 weeks when one of the physicians suspected his condition might have been caused by exposure to Hanta Virus. He then spend two weeks in rehab until he suffered a hydro-pneumothorax, putting him back into a regular hospital ward for another two weeks. Then, Ian again went back to rehab for another five weeks. (The roller-coaster ride that we know is ARDS)

    On day of discharge from the hospital on May 4, 2001, Ian weighed 145 pounds; he was 60 pounds less then when entered the hospital over five months earlier. When Ian left the hospital in a wheelchair, he was on oxygen twenty-four hours a day, seven days a week. Post Traumatic Stress was a term which Ian and wife came to know quite intimately in the months following hospitalization and discharge. (Ian had been an active fifty-seven year old boater, 5 handicap golfer, enthusiastic walker, and traveled extensively. Ian ministered at two churches prior to having ARDS.)

    However, after his experience with ARDS, Ian's and his wife's life dramatically changed. Ian ended up on long-term disability, requiring oxygen 24/7 but was committed to weaning himself from the supplementary oxygen. Ian tried to build muscle and stamina, which was a constant challenge. Ian's motto always was "Remember, every set back is a set up for a come back."

    And as Ian's story continues to unfold, he says that those last few words, "Remember...." are prophetic words, although Ian did not realize it at the time of writing.

    The story unfolds: Ian continued, week by week, to grow a little stronger, and commenced a course of physical rehab, which helped greatly. During the fall of 2002, still on oxygen 24/7, Ian continued working out 3 days a week at the rehab center in Kingston, Ontario, Canada, which is about an hour from his home. Then one day, progress halted. And in the space of a few short days, Ian felt worse than before. He could not exercise to the same extent. Extensive tests and a scan were ordered, and a few days later, Ian was given the bad news. He now had Idiopathic Pulmonary Fibrosis, which was advancing rapidly. His life expectancy was very short, and his only hope of living was to apply for, and hopefully receive, a lung transplant.

    Once that information had been mentally processed, Ian considered the options; he thought about living and he thought about dying, and felt somehow that this was not yet his time. Ian thought, "Surely, if I go ahead with the operation and survive, then I will know that God has more for me to do in this world." His wife and family gave their total support to whatever choice was made, and Ian moved forward with the application for transplant.

    Toronto General Hospital is one of the leading centers in the world for transplant surgery, and in particular, lung transplants. The application process is long and involves a week long stay in hospital for a multitude of tests, scans, consultations as well as other visits, making the process, one that is not entered into lightly. The information which is provided to the candidates leaves them in no doubt as to the nature of transplantation, and that is as it should be. Many months later, Ian learned that the panel of health specialists who review each and every application, had approved him. He was then placed on a further course of rehab which he attended three times a week in the Toronto hospital. Ian was assigned an electronic beeper and told to carry it at all times. If and when it sounded, he was to arrive at the hospital within two and a half hours. Ian had no idea if or when he would be called, as this depended on the availability of suitable organs for transplant, depended on a match, depended on his place in the priority list of candidates.

    One evening at 6:00 p.m. the call came, and Ian and his wife raced to Toronto, their minds in a haze of thoughts of so many things. "Was this the last time we would see each other? Would the operation be successful? How would his wife manage on her own? What about our family? How would they handle it?" They arrived in record time, the highway patrol would not have been impressed with his wife's somewhat 'urgent' driving, only to be told several hours later that the transplant could not go ahead. (They had been warned that this does happen and is unavoidable) They returned home at 1:30 a.m., the conversation muted, and their minds again confused with what had transpired, figuring that "it was just not meant to be."

    One month later, strangely enough, also at 6:00 p.m. the call came again, and they repeated the journey, although this time a little slower, a little wiser. The conversation during the journey in the car was strangely hushed, as everything that needed to be said between a couple who loved each other deeply, had already been said so many times. The questions had been covered, the prayers had been spoken, the love that bound them together remaining unspoken, yet so strong they could touch it and know it. Four hours later, Ian went into surgery, which, he was informed some weeks later, lasted twelve hours. Complications caused an eight week stay in ICU which was less than enjoyable, yet due to the dedication of nurses and doctors, Ian recovered.

    Learning to walk for the second time in three years (the most difficult thing he had ever done)....... this was beginning to become a nasty habit for Ian, and yet, it was the walking activity that brought Ian's strength back sufficiently to allow him to leave hospital, WALKING, and commence a three month period of intensive rehab.

    The first time Ian realized he could breathe without the need for an oxygen tube in his nose was quite a revelation, and as his confidence returned during the next three weeks or so, Ian dispensed with any supplementary oxygen assistance....the first time in years! According to Ian, "My miracle was now for real."

    Time has passed and Ian is now four years post transplant. Exercise forms a part of the daily routine of his life and it is not uncommon to see him returning from a 5 mile cycle or a 3 mile walk. Strength has returned to a body which was badly debilitated following 3 years of illness. As the muscles were rebuilt, the range of activities that could be undertaken widened dramatically. Pulmonary function improved continuously and allowed Ian to return to golfing and a 7 handicap as well as being a competitor in the 2006 Canadian Transplant Games in Edmonton.

    Being imuno-suppressed is in itself a "lifestyle," and takes some getting used to. There are certain do's and don'ts which have to be learned, however these are easily handled. The support given by the Toronto General Hospital's Transplant Department is ongoing and regular phone contact with a coordinator ensures the optimum recovery. In addition, both PRE-Transplant and POST-Transplant, it is vitally important to have access to mentoring from those people who have traveled this road before you and can offer guidance gained through their own personal experience. That is why Ian, in association with his transplant friends, formed:

    ONTARIO EAST TRANSPLANT SUPPORT GROUP (OETSG)

    There is no need or reason for anyone to feel alone as they embark on their own journey of healing or acceptance of their condition when transplant may or may not be an option for them. The OETSG exists to provide support and mentoring to both donor family members and those who are pre and post organ transplant. It also provides presentations on giving The Gift of Life, promoting organ donation as the greatest gift one person can give to another.

    Ian began this by saying: "Remember, every set back is a set up for a come back."

    He would like to add these words that kept him going over the weeks of recovery in hospital:

    "The task ahead of us is never as great as the Power behind us."

    Pastor Ian


  • Shillane Labbett - A life with CF

     

    A life with CF

    Shillane WeddingMy name is Shillane Labbett and I am a 37 year old double lung recipient. I was born with Cystic Fibrosis which is a genetic disease that affects the lungs and pancreas. When I was born, I was given 5 years to live. It then changed to 18 years and more recently people are living into their mid thirties.

    By the time I reached thirty, my lungs were rapidly deteriorating. On a good day my lung function was 30%. My respirologist, Dr Diane Lougheed approached me numerous times to look into getting on the list for a lung transplant. Originally, I felt that a lung transplant was all wrong for me and that I would just follow the natural path of life for a person with CF and die at an early age.

    Dr Lougheed continued to try and convince me to see about a transplant and with time and talking it over with my husband Simon, she finally convinced me. There couldn't be any harm in seeing the transplant team in Toronto to learn more. So, off to Toronto Simon and I went. We learned a great deal about transplants and learned that I personally, would have an excellent chance at a close to normal life after transplant. Unlike the two only other people I knew that had lung transplants and died in the first year. Some lung transplant recipients are now living more than fifteen years post transplant.

    The transplant team in Toronto told me that they would like to see me every six months to monitor my condition so they would know when to add me to the list. Timing is very crucial. The team want you to be in extreme need of a transplant but well enough to make it through major surgery - it's a fine line.

    So, I continued to go every six months for a year and a half. At which point I became extremely ill. I was on vacation in Nova Scotia when I developed massive hemoptysis which is haemorrhaging of the lungs. It is estimated that I coughed up 2 litres of blood before I was rushed to the hospital in Halifax. Here I was put on Oxygen permanently which I had been using off and on over the last few years. Once I got back to Kingston after a two week stay in the hospital, I saw Dr Lougheed and she said it was time that I go back to Toronto to have an official assessment. It was decided by the transplant team that I should be added to the list. So, my mom who was my support person and I moved to a condo in Toronto to begin the wait and to embark on an exercise rehab program. I was told that I would probably be waiting 6-8 months for a double lung transplant. Unfortunately, during the first week of waiting, I got extremely sick again. While I was waiting for a hospital room at St. Michael's in Toronto, my lungs once again began to massively hemorrhage from a burst bronchial artery. I was admitted to the ICU and put on a ventilator since I could no longer breathe on my own. About ten days passed while I was in the ICU and on the 23rd of February 2005, a nurse came in and told my mom and I that a set of lungs had become available. After making sure it was for real, we were ecstatic. However the first thing I wrote on my notepad was that I felt sorry for the family of the donor.

    I was told at 5pm that there was a set of lungs and I had my surgery at 5am on February 24th, 2005 after waiting on the list for only twenty days. My name had moved to the top of the list due to the severity of my condition. I had a wonderful surgeon, Dr Shaf Keshavjee, and I am told that the set of lungs that I received were impeccable. Within 2 days, the physiotherapist had me up relearning to walk with a walker. I spent three more months in Toronto to complete my mandatory physio. Those three months were some of the happiest in my life. I was able to breathe and walk and do the things normal people could do. I spent time walking along the waterfront in Toronto and walking in the malls shopping since I hadn't been able to for so long.

    I am extremely grateful to the donor and donor family for this incredible gift of life. I am so lucky that it came when it did. It was a miracle. My family and I wrote anonymous letters to the donor's family thanking them for their kindness and generosity and to express our sympathy for the loss of their loved one. My husband wrote a poem to the donor's family, it reads:

    To A Donor

    The Solemness is quite a cost,
    For someone you have loved, then lost

    The cost is great but can help pay,
    For others to have an extra day,

    Although the thoughts of loss will not recede,
    Please take comfort in the ultimate good deed,

    It was performed through the thoughtful donation,
    That answered our prayers of desperation,

    The change it has made is inconceivable,
    Just goes to show what is achievable,

    When caring souls make noble choices,
    And declare their wish through human voices,

    You can almost hear them, it's like fate,
    When it is spoken "We've decided to DONATE".


  • Denis Richardson - Heart Story

     

    Story of My Heart

    Transplant Gold Medal"Hi!, I'm Denis Richardson, I am sixty-eight years old and going on seventeen."

    That is how I begin a talk to any audience.

    I also wear a tag on my chest that today would state that I have lived 5911 days with my transplanted heart.

    My licence plate starts with a red heart symbol followed by TRPLNT and my back bumper sports a "Green Ribbon" magnet.

    Do those facts make it seem that I am proud? I hope not. If anything I am in awe of the generosity and goodness of people who donate their organs so that others can live, live longer, and live better. As an active and practising Christian, I consider the people who present us with the gift of life as performing the ultimate act of Christian good works. We recipients are the 'neighbours' that they have loved in a way that seemed incomprehensible less than a generation ago.

    For us, the journey through the world of transplantation began early in December of 1991. Rita received a call at home in Guelph frrom one of my friends telling her that I was in Emergency with the flu. After an icy drive to Cambridge, she was met at the door by Dr. Vizel who told her that I would probably not survive the night. He made the call to our family. I had left home less than four hours earlier after shoveling some slush out of the end of my driveway before it froze. I had returned to school that night because of a challenge from Greg, one of my grade twelve home room students for a badminton match and I went to play it.

    We played three close games and Greg won the rubber in extra points. I strolled to the staff room to get a drink and catch my breath. But I didn't catch that breath. I had none of the other classic symptoms of a heart attack whatsoever. I even went back to the gym and played part of a game before two of my colleagues approached me and said that I was coming with them. They took me directly to the Emergency department at Cambridge Memorial Hospital. They also saved my life.

    What a rotten break! A heart attack at age fifty-one, but then I had outlived my father who died of one at age thirty-three. As I looked up from the gurney, cardiologist Dr. Saul Vizel said to me, "Mr. Richardson, you are in the middle of a big heart attack." My immediate thought was, thank God I had heeded my mother's repeated warnings when I was growing up and had clean underwear on that night!

    But at that point a whole series of events started going so right that my guardian angel really earned his wings. Dr. Saul Vizel treated me first that night and after he did the best he could in Cambridge, he sent me to Toronto General - in a sleet storm that the ambulance driver at first refused to go out into.

    Dr. Paul Daly was on duty in the cardiology unit that night and he picked up where Dr. Vizel had left off a lifetime earlier, (but that's another story).. Dr. Daly, by chance , was also the head of the heart transplant team so I was where I needed to be from the start. The angiogram that night showed that I needed six bypasses. Just before Christmas they did a quintuple on me. A hospital is a very, very lonely place to spend Christmas. I found it somewhat macabre that the cardiology unit was decorated with Christmas bows - made out of ECG printout tapes

    Early Christmas morning I found out that the bypasses were really just a stopgap measure. I had an episode that brought the nurses running with the de-fib paddles, but I was actually sitting up in a chair reading and did not even feel whatever happened that caused the telemetry to show a crisis. I blame the book - it was about Mulroney!

    Early in '92 I went home with my five bypasses but it soon became apparent that full recovery was not an option. A major crisis mid- February saw Dr. Vizel spend more than forty-eight continuous hours with me before the shock paddles finally kick-started a normal heartbeat. The next morning the other patients in the cardiac CCU told me that I had put on quite a show the previous night. Recovery from that crisis notwithstanding, it was clearly a downhill slope from then on.

    For months my only diversions became walking, then wheelchair rides, and by midsummer all I could do was read and watch TV. My reading became limited to large print books and then even that was too challenging. Star Trek TNG was about as complicated a show as I could follow and that degenerated at the end to my being barely able to follow CNN Headline News. Just before the transplant call came, I could not even make it all the way through the Lord's Prayer without losing the words. One really can become too weak to think! A measure of my recovery was to be my ability to first read a sentence, then a paragraph, and when I could understand a whole page, I knew that I was on my way.

    That summer my earthbound guardian angel took over. Rita not only looked after an invalid tied to his oxygen generator but also became the most effective advocate for my recovery that one could ever hope to find. She became an expert in cardiac care and knew instantly when my care started to slip between the cracks. She made certain that it did not take the usual three months wait for me to get an electric wheelchair. Before I became too weak, I had fun popping wheelies with that vehicle. Along with advice from our neighbourhood pharmacist who had recently helped his father recover from an MI, the doctors were kept on their toes. The pharmacist spotted several contra-indicators in my prescribed medications and contacted the doctors who did adjust them.

    My case did not fit within the protocol for the transplant program at Toronto General. Rita asked, "Why not?" When they told her that they had no medical history of me, she said, " Well, you do now." I became the first heart recipient at Toronto General to arrive at the transplant program via a heart attack. My transplant was the 137th there and the earlier 136 had all been cardio-myopathy or similar cases of long standing. Rita asked, "Why should that make a difference?" They told her that I had no record of compliance with medication regimes. She flatly told them that I would comply!

    On June 12 of '92, with the first glimmer of hope in nine months, I was placed on the waiting list. After eighty-eight days of becoming progressively weaker, we received the call the evening of Labour day, September 7, 1992. The next morning, after four hours in surgery, they wheeled me out with a new younger heart beating in me.

    With literally dozens of tubes and wires stuck into me, improvement was immediate but slow and after three weeks in hospital I went home. The first thing I did there was walk up the stairs that had been like unclimable mountains only three weeks before.

    Within two months, I attended graduation ceremonies at my old high school and shocked the socks off everyone I met by my presence. The person there who was most relieved was my former student Greg, who thought that he had killed me in that badminton match.

    As luck would have it the Mutual Insurance Company was based nearby and had recently begun its "By Mutual Consent" organ donor awareness program and I was asked to help with a presentation at my own high school as "proof-on-the-hoof" that donations work. The scheduled presenter could not make it so I did my first presentation on my own only two and a half months post-transplant. More than three hundred audiences later, I will still gladly talk to any group who will listen to me.

    One of my favorite anecdotes relates the story of Dalton Camp, the old 'back room boy' from the Diefenbaker era. Dalton suffered a major cardiac problem and on arrival at the Heart Institute in Ottawa it bacame apparent that a transplant was the only thing that could help him. A heart was found but it was diseased and not usable within the transplant protocols of any nearby hospitals. Dalton accepted the unwanted heart knowing that it could well be a futile process. As it turned out, Dalton lived eight productive years with it. His case is very interesting because to my knowledge, it was the first proof positive that old Tory politicians actually do have hearts.

    The intervening years have brought their highlights and crises. Only eight months after the transplant Rita got tired of having me underfoot and told me to take a trip. Her brother Walter had stated working for the United Nations in Rome the same week that I received my heart. He phoned me while I was in the Step-down unit and a devout Phillipino nurse assumed that I had special connections to the Vatican. In a way, she was not altogether wrong. Having a brother-in-law with diplomatic status does open doors.

    Not only did I spend a delightful three weeks in the Eternal City, but I had the great honour and privilege of meeting Pope John Paul II. Speaking with him and receiving his thrice repeated blessing remains a highlight of my life. I tried to tell Rita that the blessing should be good for at least a year's exemption from going to mass but she wouldn't buy it.

    Only a month after returning from Rome I began to experience excruciating back pains. Very quickly a cat-scan showed a malignant tumor on a kidney. When they wheeled me into the operating room, Rita saw to her surprise that not only was the kidney surgery team present but the whole heart transplant team was also on hand in case the new ticker acted up. The surgery was completely successful and no chemo nor radiation was required. Fifteen years later the kidneys still work fine, knock on wood! That surgery was by far the easiest of the three I've had, probably thanks in part to the use of an auto-analgesic machine. During that recovery, after visiting another wing of Toronto General to see a young man who Rita and I were mentoring while he waited for his heart-double lung surgery, I returned to my floor only to be confronted by a large intimidating nurse who scolded me with "Yo nevah home! You nevah home! Ah comes to do yo vitals, but yo nevah home!".

    The overwhelming sense of gratitude for all the good that had come my way focused my life on working in a small way to help make sure the message of the miracle of a new life that came to me was delivered to as many people as I could reach. My audiences ranged from a handful of people to live audiences of nearly two thousand coupled with frequent newspaper, radio, and TV interviews. Rita has been a constant support and enthusiast throughout and we frequently go together to presentations, except to groups of Knights of Columbus, Masons, Shriners and the like. Among our favourites were numerous Women's Institutes which fed us very well. My personal favourite audiences are primary and junior classes in schools. They ask far more insightful questions than any adult audience. One grade three boy, after hearing me describe my cardiac odyssey, the transplant surgery in particular, asked, "Were you scared?" After assuring him that I most certainly had been, I realized that nobody, myself included, had ever questioned that aspect of all the incidents.

    Beginning as I mentioned earlier with the "By Mutual Consent" program and through several developments until they morphed into "Trillium Gift, of Life", Rita and I have spoken throughout southern and eastern Ontario and beyond.

    We have worked with some wonderful groups and some terrific people along the way Our current involvement with transplant support groups in Ottawa with the Kidney Foundation, and now with the O.E.T.S.G. continue our commitment.

    Recent highlights include helping at the International Plowing Match and meeting literally thousands of people; working at professional baseball, hockey, and football games; at the Super EX in Ottawa; and the tremendous emotional boost that the Canadian Transplant Games provided. Our O.E.T.S.G. team of six athletes brought home no fewer than fourteen medals, most of them Gold.

    I remember it taking me more than three months to compose a letter of thanks to my donor family, and me a lifelong English teacher at that. In her response to my letter, my donor's widow stated, "It gives us all great peace and comfort knowing that his strong and loving heart lives on." That brought more than a few tears to my eyes. That feeling was matched only by the awe inspiring moments of meeting many of the donor family members at the Games. Their active participation proved to be a poignant reminder of just how deep is our gratitude to them .

    In a little over a year I will reach Psalm 90's promised "Three Score and Ten". On my 70th birthday I will have enjoyed no fewer than 6355 days of absolute bonus thanks to the Gift of Life from a total stranger. I truly wish that I could let his widow and now young adult children know just what his gift has meant to me and to the others who received his organs that night.

    That GIFT that they gave is in each and every one of us to give.

  • Lauralee Cowan - Transplant Story

     

    Lauralee Cowan - Her Story

    I wasn't on the transplant waiting list like other people you hear about.

    It was January of 2002, I went to work, came home, cooked dinner and looked after my two daughters. I started to feel very unwell; it got worse as the days went by.

    One day early in February 2002 I went to work as usual but I started getting violently sick to my stomach and my co-workers told me I was jaundiced. I left that day to go to Prince Edward County Memorial Hospital; the doctor on call told me I was not going home. My liver numbers were elevated severely. Upon being admitted to hospital and having blood tests everyday, my family doctor told me it was time to go to Kingston General Hospital. I was informed that I had acute hepatitis.

    Days later, from Kingston I was flown out by emergency air ambulance to London University Hospital. I do not remember much when we got there, as I took a turn for the worse. My husband was told I had but 72 hours left to live. It was towards the end of February when my husband got the call that they had a liver but it was Type AB and my blood type is O+. The doctors in London said I was young and wanted to try that liver. Guess what? It worked! After two months in the hospital I was able to return home to recover. I was able to spend Easter with my family.

    After a few months I began to feel ill again, the jaundice was back and also the internal itch. I was in and out of Prince Edward County Memorial Hospital and Kingston General. My bile duct was blocked so the bile could not flow. The doctors tried to get the bile to flow. During this time I had my 1 year Anniversary. I was so happy to be here. Two months later I was back in London University Hospital. I did not know what was happening. Mid April 2003 I woke up in the Intensive Care Unit where I was told that I received another liver transplant. This liver was a match.

    I received the gift of life twice. Two wonderful people signed their donor cards. They are living through me. Thanks to those wonderful people I was able to see my daughters grow into beautiful young women.

    Please sign your donor card and let your family know your wishes. I never thought this would happen to me, but it did. My family signed their donor cards right away. It could be you, a family member or friend in the same situation. Please give the gift of life.

    If you have any questions or just need to talk, please contact me through the Ontario East Transplant Support Group of which I am a member.

    Lauralee Cowan


  • Gary - Gift of Life

     

    A Gift of Life

    This story begins at a sporting event on a hot summer afternoon in August of 1998. As we climbed up into the bleachers, I noticed a distinct shortness of breath. Little did I know at the time, this was the beginning of life changing events.

    I retired in December of 1998 in what I thought was perfect health. We started 1999 with great expectations, we took a cruise, many short trips, and our daughter was getting married in the fall. There was lots to do and we were enjoying all of it.

    Around October of 1999, I developed a chest cold and a cough I couldn't get rid of. Our doctor was not concerned, but eventually sent me for a chest x-ray. The result was pneumonia. After two different treatments, my x-ray was not good and my oxygen level was decreasing. After many visits to internists and lung specialists, they took a biopsy from my lungs. The diagnosis was idiopathic pulmonary fibrosis. At the time, we had no idea what this was and expected the doctor to say, take this medicine, you won't get any better but you won't get any worse. Were we wrong?

    I was sent to the Firestone Clinic at St. Joseph's Hospital in Hamilton. The respiroligist I had was very good. On our first visit, our appointment was for 11:00 a.m., we didn't leave his office until 1:00 p.m., and all he did was explain the disease to us. We were told that medication for this disease works only maybe 5% of the time. I was put on large doses of prednisone. I was closely monitored for approximately 6 months. I certainly didn't get any better and by now I was on oxygen all the time.

    In December of 2000, I spent 5 days in the Toronto General Hospital to see if I would be a candidate for a lung transplant. By this time we had sold our home and moved into a condo, as I couldn't handle the stairs and we felt the general overall maintenance of the house was too much.

    These were very anxious times, as by now we knew a lung transplant was the only answer. In Feb. of 2001, we heard I had passed, if you want to call it that, all the tests I had been put through. The only one left was an angiogram to see if my heart could stand the surgery.

    It was Friday afternoon, March 8th, 2001, when we finally got word I was being put on the list for a lung transplant. We were supposed to go into the hospital on Monday to talk to the surgeon, sign the papers and pick up a pager they provide you with.

    Monday morning around 1:00 a.m., we received a call from the hospital, they had lungs for me. We rushed to the hospital, where we were met by a team of nurses, who began preparing me for surgery. I.Vs, blood work, etc. etc.. There we were waiting patiently or probably impatiently, when at 10:00 a.m., we were informed the surgery was a no go, as the lungs they had were not suitable for a transplant.

    The next week I began a program at the Toronto General Hospital that prepares you for the surgery. I went three days a week for an hour of exercise. We attended meetings with other patients waiting for a transplant and also patients that had already received lung transplants. We really learned a lot, and became like a family.

    On May 27th, 2001, we received another call and we rushed to the hospital. This time the nurses and doctors were really rushing, saying they were ready to go. We had only been at the hospital for approximately ten minutes; they were starting to take me to the operating room when again we were informed the surgery was a no go.

    On Wednesday, June 13th, 2001, I was getting ready to go to Toronto for my exercises and I said to Nancy, I just can't go; I had physically and mentally hit the wall. We called the hospital and I went in the next day. After more tests Thursday and Friday, they said stay for the weekend and you will probably go home on Monday.

    Saturday morning Nancy and her girlfriend arrived to spend the day with me. They had gone down for a coffee when a doctor I didn't know came in and said how you are feeling. He was a lung surgeon and said we think we have something for you. The operating room was booked for 7:00p.m. Our three children were called and they all wheeled me down to the operating room. Nancy was still doubtful this was really it and asked the nurse if she would let her know when the surgery had actually begun. It was around 10:00 p.m. when the nurse came and said everything was going well. The surgery lasted 7 hours.

    I don't remember much of the next couple of days, but I do remember waking up late on the Sunday, it was Father's Day and I had received a double lung transplant and I have never had a better gift. I was in ICU for 2 days and the step down unit for 5 days. I was in the hospital for a total of 20 days.

    After the surgery, they start you on an exercise program to help you regain your strength. We again went 3 days a week to Toronto for 3 months.

    It has been a wonderful experience and we cannot say enough about the health care I received.

    It is 7 years June 16th, 2008 since my surgery. I still go every 2 months for blood work and pulmonary tests and once a year for a complete assessment.

    I am living proof that organ donation works, and does make a difference. I hope everybody will consider organ donation and sign their donor card. The lung transplant program is second to none.

    Written by Gary

  • Fred Graham Story

     

    Fred Graham's Story

    familyFred is a musician extraordinaire, having made enormous contributions to the world of sacred and liturgical music over the past several decades. Fred received the gift of life in the form of a liver transplant with his daughter being the donor. As you can read from this document, BOTH are doing very well.

    Can you believe it? One year ago today was "crisis day". I had entered hospital at the end of May, 2007, suffering catastrophic liver failure, and on June 7 the medical team and the inner circle of family/advisors wrestled with the major dilemma: to operate or not to operate. That was the question. As you all know, Jessica's determination and generosity enabled it all to happen. Happy to say, she is fine, and so am I. How the year has flown.

    Not that it's a "cure." Now that my network of transplant-recipient friends has expanded, we all realize the special grace of this "band-aid". But the joy is being here to make that observation. And there is joy in playing a new role as advocate for organ donor awareness (which Jessica and I have done repeatedly).

    Some news bits in brief:

       - At my last medical review, it was said I am five months ahead of schedule, and don't need supervision till next March.
       - My blood tests indicate my liver function is perfect.
       - My kidneys took months to recover since they tried to step in for the old failing liver. My skin is pink, no longer yellow.
       - I have come to appreciate that I was in decline for at least 5, maybe ten years. I now have had energy unbounded, and have had difficulty sleeping for a full night.
       - As you can see from my face, I have gained a bunch of weight, though I am not complaining. It means the "internal machinery" is doing its thing. And well.

    Are there side effects? But of course. I struggle with other less threatening ailments as a result of medications. I carry antiseptic hand-ointment with me against contact with germs (because of immuno-suppression). But these are minor considerations given the alternatives.

    Does life look different to me? Obviously, stable health is even more precious. Our health care system, despite its problems, is a modern wonder. Having received about $1M worth of care, I do understand Hillary's goal for our neighbors to the south of us. Finally, as the hymn text says, "....And the best is Love". The rewards of mutual relationship, love at whatever level at the centre of our being, has become price-less.

    Over the last 12 months, the world-wide prayers, food deliveries, hand-holding, notes and cards, chauffeur services, meals out: all were for me manifestations of love in action. For these mercies, I can barely express my gratitude to one and all. Please accept, from this latter-day Lazarus, a "virtual hug" of thanks.

    With wonder, respect and affection,

    FRED GRAHAM

  • Loretta Collins - My Double Lung Story

     

    My Double Lung Story

    LorettaDear Friends,

    This is my life story...

    Each second I live in this world is a new and unique moment.

    August 1st, 1989 all it took was a moment and my life seemed to be squeezed from me. I was hospitalized and after many test diagnosed with Eise mengers syndrome/ASD. I was facing death and was told surgery was not an option. A fear of death brought me closer to God, I prayed more then I ever did in my life.

    After six years trying to accept this illness, my condition became progressively worse and I was placed on eight litres of oxygen per minute. Many times I became anxious and prayed to God, well my prayers were answered when I was accepted (1995) to the transplant program at Toronto General, to wait a Double Lung Transplant and open Heart repair surgery. I needed an Organ Donor, someone would die for me to live, how could I pray and ask God for this? I just couldn't ...so I just prayed for help and left it in God's hands.

    Twenty-Two months later on May 28 1997, my call finally came, my surgery was a success and a miracle because of a wonderful donor, and a family who was deeply grieving there loss.

    I have celebrated twelve wonderful years. Everyday I think of this donor family, and I say a prayer for such an awesome donor. I keep very busy with my five wonderful children, my six very special Grand children and one on it's way; My Husband who was my support all the way. I am in two Gospel bands, Genesis 5 and eastern Gate. Guess what... I am a singer and have now written Six songs of my own.

    Thank you to an excellent Transplant team. Thank you to the Donor family, and an awesome God.


  • Alison Wilson-Proulx - My Transplant Experience

     

    My Transplant Experience

    Where do you begin to tell people the story of your new life? How do you explain to them the pain you didn't feel because you were in denial of the whole issue? I didn't feel any pain, except for in my back. I didn't look sick, I didn't feel sick, but the tests all proved otherwise. I had done the assessment back in 2006 when my lungs were at a stage that they didn't work like they used to anymore.

    You see I was blessed with Cystic Fibrosis, a genetic disease that affects 1 in every 2500 children. I was diagnosed at 1 month of age, and not knowing the difference from then to now, was a blessing on its own. I have been taking medication my entire life, I don't ever remember not having taken any medication ever. As a child I was involved in many sports, swimming, both synchronized and diving, gymnastics, figure skating, volleyball, track & Field, and the past 7 years in Golf.

    As time went on, my health deteriorated and my lung functions were at 10% capacity. Meaning only 10% of my lungs were actually working. I had lost a large amount of weight weighing in at a lightweight of 95 pounds and being on oxygen 24/7.

    In November of 2008 I was admitted to the hospital with pneumonia, and I was not doing well at all. After two weeks in the hospital in Cornwall, they shipped me off to Ottawa, where they can manage my health more accurately. I was there for 2 weeks then back in Cornwall for the holidays, in hospital, and not being in my own bed for Christmas & New Years is like eating ice cream in front of a diabetic.

    After a few days in Cornwall, I headed back to Ottawa, where I was put on the transplant list on January 15th, 2009. It was the single most amazing day of my life. I had never been more prepared for anything in my life. I had done the research, talked to the surgeons, and listened to the rules, the facts and the risks. All of which I was aware of. And all I wanted was a new set of lungs, so I can breathe and enjoy living my life again, and again.

    Within 2 weeks of being listed, I got word there was a bed available for me at St. Mike's hospital in Toronto. As they whisked me away I couldn't be happier. The flight was painful, the nurse was awesome, and the Ambulance attendants were fantastic. Then we got to St. Mike's and my room was less then to be desired. It was small, cramped and very cold, not temperature cold, just cold in general. Some of the nurses aren't nice, some are, as to be expected in a place like that.

    Within three weeks of being in St. Mike's hospital, my lovely nurse, who I think was from Russia, poked her beautiful face in and says "We have lungs!" Immediately I said, are you kidding and she had a look on her face that said it all, and then she said what her face looked like, "We don't joke about that here." I had no idea what to do, who to call first or what to do with my stuff, and I had a lot of stuff. One month to the day of being listed, February 15th, 2009 at 9:15pm.

    This part of the story is long and kind of boring, but funny as ever, so I'll skip to the good stuff and keep it short.

    Lungs came in; Sunday night at 9:15 got the call/nurse visit/Page whatever you want to call it, called the family to let them know. Surgery started at 6am, prep took two hours, first cut at 8am Monday morning, Family Day 2009. The surgery took 5.5 hours and was textbook according to my surgeon. I remember giving everyone the thumbs up after recovery. 2 days after surgery, the ventilator tube came, that was an ordeal, and I'll share if you ask me. The first thing I wanted after it was removed was a Pepsi, but no, only Ice chips.

    That same day I was up and walking. Walked for about 10 minutes, and then had to do the mandatory 30 minutes to an hour sitting in the chair. This transplant was the single most amazing experience I have ever gone through, next to marrying the most amazing man in the world. Never had the vows "In sickness and in Health" meant so much to me, to my husband or to the entire wedding party and guests, we were all crying.

    After being downgraded from CCU, Step Down ICU then to Transplant unit, all within 1 week or less, then walking on my own, bathing on my own, checking out my staples and my new scars. How exciting to explain these war wounds to everyone. Two weeks after surgery I was discharged with a clean bill of health. I didn't really believe in God at first, but I see now he has sent my guardian angel, who I like to think is my grandfather, to watch over me. The weekend after my surgery I could feel him, on my bed, stroking my face, holding my hand. I know it's him, because he was my Pepere, my holy of holiness, and still is.

    I thank God everyday for this second chance, and pray that the donor family is well taken care of. Until I know more about my donor, should they ever choose to know more about me, I will continue to do what I do best, and educate everyone on Organ Donation. If it weren't for my donor, I wouldn't be here today.


  • Josyane St-Pierre

     

    Josyane St-Pierre

    JosyaneBonjour, je m'appelle Josyane St-Pierre et j'ai 24 ans. À l'âge de 18 mois j'ai subi une transplantation hépatique et puis 20 ans plus tard, j'ai été greffée d'un rein.

    Mon histoire médicale commence à ma naissance. à quelques jours de vie, on m'a diagnostiqué une atrésie des voies biliaires; c'est-à-dire que les voies biliaires de mon foie étaient atrophiées et non fonctionnelles. La première solution a été de tenter une opération nommée Kasai afin de sauver mon foie qui ne cessait de se détériorer. Cette intervention m'a permis de vivre assez normalement pendant un an.

    Cependant, la solution n'était pas parfaite puisque l'état de mon foie ne cessait de s'aggraver. C'est alors que la greffe s'est imposée. Une course contre la montre commençait. Sans greffe, les médecins estimaient qu'il ne me resterait qu'un an à vivre. Je dois vous dire qu'en 1986, au Québec, il ne se faisait pas encore de greffe hépatique pédiatrique... De plus, la population canadienne était peu sensibilisée à la cause. Imaginez la détresse pour mes parents, ma famille...

    Trouver un foie et réussir l'opération étaient deux choses incertaines et très inquiétantes. C'est finalement à l'âge d'un an et demi que le grand jour est arrivé. Après 6 mois d'attente, on m'avait trouvé un donneur. Le jour de ma greffe, à l'hôpital Ste- Justine, tout le monde pouvait sentir l'effervescence et la fébrilité du personnel médical puisque la deuxième greffe hépatique allait se faire. J'ai donc été le deuxième enfant à recevoir une greffe du foie à l'hôpital Ste-Justine.

    Je crois que c'est munie de mon caractère fort et de mon impressionnant désir de vivre que j'ai réussi, petite fille que j'étais, à passer assez facilement au travers de la greffe. Sans oublier l'équipe médicale qui a fait un travail extraordinaire. Malgré mon enfance marquée par plusieurs hospitalisations, j'ai pu vivre une vie de jeune fille et d'adolescente normale. Malheureusement, à l'âge de 18 ans j'ai développé une glomérulonéphrite, une maladie dégénérative des reins... Rien à voir avec ma maladie hépatique de naissance.

    Seulement quelques mois après le diagnostic, j'ai du commencer l'hémodialyse; un traitement qui remplace ce que font naturellement les reins en santé. Et puis, 2 ans et demi plus tard, je recevais le don d'un rein. Je crois que je suis une personne qui n'a pas voulu faire les choses comme tout le monde et qui a choisi les chemins les plus difficiles...! Enfin, aujourd'hui je suis encore ici pour vous prouver qu'un don d'organe permet la vie et qu'il existe un futur après la greffe.

    Josyane S.

  • Gary M -Fearsome Dragons

     

    Fearsome Dragons

    familyWhen a person has developed an incurable lung disease they will face many challenges from drugs, therapy, doctors, family, friends and do-gooders. These are challenges they can face and deal with on a daily basis and still live a relatively normal life.

    There is one challenge they must face though that is very hard to deal with, a double lung transplant. All of a sudden there is this space in front of them full of fearsome dragons.

    This is best explained be a 14 year old boy from Italy who came to Canada on a student exchange. He did a slide presentation showing his small town and all his friends and family. He then showed the plane, the flight attendant (many times, must have been something in his blood). The boy then showed a blank slide, paused for a bit then went on with the rest of the presentation.

    After, someone asked, why the blank. He then explained that all of a sudden he got scared. He let all the other passengers get off and just sat there. A flight attendant came and asked what the problem was and he explained that all of a sudden he got scared. She said, "Scared of what" and he explained that all his teachers, family and friends had told him about Canada but they have never been there, so how could they really know what Canada was really like. So all of a sudden there was a big space full of fearsome dragons.

    The flight attendant then said "I am Canadian what would you like to know?". Then she took him by the hand and led him off the plane to his host family and new found friends.

    When a person faces a double lung transplant they face the same dragons. They hear from doctors, nurses and all kinds of specialists what it's all about. But they don't really know because they have never experienced the transplant.

    This is where a special group of people comes to help, like the flight attendant. They are the transplant support group.

    Why are they so special? They have experienced the transplant and can answer the questions the person might have that the doctors can not. With this knowledge they can help fight off most of these fearsome dragons.

    Just what are the dragons?

    With the Italian boy they were, Did Canadian`s still live in tepees and igloos? Did anyone speak his language? These are silly to us yet a very real fear to him.

    Transplant patients dragons are also very real to them. The operation room is the dragons den. The over head light is the dragon's mouth breathing fire. The operating tools are the dragon's claws ready to rip and tear you apart. With the doctors in there scrubs and masks all you can see is the eyes of the dragon staring at you.

    Silly to you? Perhaps, but to a transplant patient, very real.

    You can help fight these dragons by trying to see it the way a patient does, especially the way a child might see things. Don't say you're just being silly, try to understand their fears.

    You can also help by registering as a donor and telling a family member or a friend what you have requested.

    By Kin Garry Mc Namee

  • Todd Lawrence - The List

     

    The List

    The LIST - We never see this LIST. We don't know where we are on the LIST - We don't know how many are on this LIST - this is starting to sound like a George Carlin comedic bit.. yet it is the LIST that is such a vital part of our Transplant World.

    I am a 34 year old male, a 23 year veteran of Diabetes, and a kidney dialysis patient at York Central Hospital in Richmond Hill. I have been on dialysis ("D") since December 18th. 1998 - you never forget your 1st. time! As I sit here writing this, it will be almost two years that I have been "in the chair." Two years that have spanned the entire spectrum of pure emotion. My journey has been a continuous array of challenges, both physically and mentally. I am feeling so frustrated with the fact that my Dialysis clearance runs were not cleansing my blood well enough, and pounding the $35,000 machine with my fist...

    To succumbing to boredom of my 4 hour treatments and actually counting the exact number of times I have been "D'd,"...

    To experiencing RAW powerful pain of an angioplasty (ballooning of my arteries veins) of my fistula - the access area in my arm to which the needles take away, then return my blood back to me...

    To sharing a jovial and hilarious moment with one of my nurses as another patient decides to start eating her sandwich just as their "run" was about to be finished.

    I am presently on "HOLD" on the Transplant LIST, which means that I do not lose my position on the LIST, however, I will NOT be called for "The DEUCE" - (Kidney- Pancreas Transplant.) Without question, being on "HOLD" is a lot harder than actually being on the LIST and waiting. On the LIST there is "HOPE" of being called, and on "HOLD" there is "NO HOPE!" I am on "HOLD" because of a change in tests that have been done. I have been waiting since early August for my Cardiologist to review my case. Now I am being deferred and sent for more tests. I can see a lot of people out there nodding their heads. Ahhhh yes it will ALL be in my report!!!!!

    In life, with "the Bad," there is always "some good" to be discovered... You just have to find it. The camaraderie and rapport I share with my wonderful nurses, medical staff and fellow patients prove to be a soothing sanctuary of endearing sanity for me. I have also found inspiration and faith from "Team Transplant", my dragon boat racing crew devised mainly of people who have battled and succeeded with their new transplant organs - their "new Gift of Life." And when I was overwhelmed with kidney failure and dialysis information, only one word I remember from reading all the materials... and that word was... "CAMP." There was a camp for people who are on dialysis.

    Camp Dorset for me has been a welcome and true joy to partake in, and I consider myself extremely fortunate to be associated with such a magnificent and treasured place of retreat for so many who find themselves on "D."

    True ... my story is only one of many, however it is told with the utmost of honesty, compassion and empathy, with a side order of humor added for good measure.

    Here's to good health and happiness for all...hoping to someday be off "THE LIST."

    By Todd Lawrence.


    Off the List

    After being on Dialysis for 3 years and 3 months, I recevied the blessed call that we ALL hope for. It came at 3am on March 27th 2002. I quickly packed up my things and hurried to Toronto General Hospital. I walked into the 10th Floor Nursing station and exclaimed loudly, "What a great evening for a Transplant!". At 9am I was in the cold Operating Room and ready for my Kidney/Pancreas Transplant. Some 6+ hours later I was finished with the procedure. The operation was a complete success and the wonderful Doctors and Nurses were extremely pleased with the results. I stayed for a brief 7 days in the hospital and was released with flying colours thatnks to my glorious staff.

    I am recovering very nicely these days. the first weeks were filled with massive tiredness and total fatigue. I could not even stay up to watch our beloved Maple Leafs battle for the Stanley Cup. Now as I approach the 2 month status, i am feeling rather energetic and rested. MY blood work results are stabilizing and my pill dosages are coming down in numbers (60 pills/day to start). I should be down to ONLY 30 pills by the end of June. WOW!!

    It is truly a miracle, and I am forever blessed to be granted this wonderful GIFT. With all the horrible news we see and read out there, there are those stories of true heroes like my Donor and their family that deserve our gracious attention and praise. My freedom is now back after 24 years of Diabetes and my stint with Dialysis. It is time to focus on health, love and life. I look forward to the journey.

    Beginning the Essence of a New Day,
    Todd Lawrence