Wednesday, August 29, 2012

Wednesday, August 15, 2012

Michael's Story

I was always kind of stubborn in a determined way. My symptoms had been progressing for years, but I just tried to ignore them. In time I was diagnosed with a genetic lung disease called alpha-1 antitrypsin deficiency.

One day I had to ask a roommate to drive me to emergency after several days of a progressive illness. While there I was diagnosed with pneumonia and my visit turned into a month-long stay. This bout of illness seriously compromised my lung function. Luckily, I was at the University of Alberta Hospital, one of the finest and busiest transplant centers in Canada. During my stay I was informed that I could be eligible for a double-lung transplant.

Shortly after leaving the hospital I registered for and completed the Breathe Easy Program. An excellent respiratory rehab program I highly recommend. Life was difficult but manageable as I was prescribed oxygen. On a good day I could walk around the block. On a bad day, getting dressed was a chore. Working was not an option and I would often question my quality of life. Eventually I started and completed the work-up at the U of A Hospital and was put on the transplant list in August 2010. The anxiety and second-guessing you go through is unimaginable, but I was told it could be two years so there was time to deal with it. I may have survived that long, but four months later I received the call.

The fear and apprehension I was feeling had been easy to cover up outwardly at least. Now it was gut-check time. I back-pedaled at first mumbling about having the flu and not being sure I qualified. Apparently that’s not uncommon and the transplant team anticipates those second thoughts. I managed to swallow the fear and agreed to go, thank goodness.

As it turned out, I was diagnosed with the H1N1 flu, which presented a challenge for the transplant team. I was told later that it was a first for anyone to be given a lung transplant while having the H1N1 influenza. As time was of the essence, the team decided to go ahead and started treatment with Tamiflu.

The operation was a success and I had received the greatest gift of all from someone I had never met. These days eating healthy, exercising and staying away from sick people is my new way of life.
Who knew that being able to walk to the store for milk or helping someone move would instill a sense of accomplishment. Certainly not me.  

Atticus's Story

(submitted by Atticus's grandmother Maryanne)

My grandson, Atticus, celebrated his third birthday on April 8, 2008. This is a medical miracle.
Atticus was born without a left ventricle in his heart. On Nov. 13, 2007, he entered the Stollery Children's Hospital for his third open-heart surgery with the hope of a full lifespan ahead of him. ... We knew that a transplant might be needed later, but after two very tough operations and delayed recovery, we were full of hope that this time he would sail through the operation and recovery and soon be back with his sister, Jordan.

That was our hope. ... [but] his failing heart left us all feeling devastated and Atticus in heart failure.
Although he was high risk for a heart transplant, on Jan. 24, 2008, he had his heart transplant.
After four months in pediatric intensive care, he was released from Stollery on Easter Monday. On April 8, he celebrated his third birthday by clowning with his five-year-old sister and eating chocolate cake. He is off oxygen and is the same loving, inquisitive, friendly little fellow he was on Nov. 13.
Atticus lives because of the skills, dedication and caring of the many health professionals we met on our four-month voyage through medical care in Alberta. ... His surgeon took two holidays that I am aware of during Atticus's crises and each time phone calls and e-mails were exchanged — some holiday. Some doctors continue to be available 24 hours a day for Atticus.

There were many very special doctors, nurses and other health-care professionals who stood out during Atticus's stay. One doctor continued to visit Atticus on her own time weeks after he had left the intensive care unit, even though the doctor was no longer assigned to that unit.
The true hero of this story is Atticus. He has a will to live and thrive that allowed the medical professionals to work their miracles.


Excerpts of a letter which appeared in The Edmonton Journal
Monday, April 14, 2008

Denis's Story

Two heart attacks — my first one was in 1988 and the second in 1991 — severely damaged my heart muscle. So began a journey to live with permanent heart disease and blocked arteries.
Two years later and after many extensive tests, the University of Alberta Hospital Cardiology Department discovered that my arteries, which had been opened up by angioplasty, were becoming blocked again.

In 1993, I required quadruple bypass surgery to replace the four damaged arteries with the arteries taken from my legs. This surgery could never repair the damage to my heart, but it allowed my heart to function better. My damaged heart would continue to fail and in 2002 the heart rhythm became so erratic that a pacemaker-defibrillator was surgically implanted to assist my heart.
In 2003 after taking a VO2 test, it was very clear a new heart was needed and I was placed on the transplant waiting list.

In August 2003 I received my new heart; thanks to a donor whom I will never know, but will always be a special individual to me.

The transplant brings a completely new perspective to a recipient. As I was healing from the surgery, there were challenges that served to remind me of the opportunity I had been given in my new life — the opportunity to see our children become accomplished adults, see my grand daughter grow up, and knowing there will be a future with my wife who is also my caregiver.

The struggles after surgery were minor compared to the benefits of a transplant. I became a new person as I enjoying different interests; even exercise is becoming something to look forward to. Proper diet and exercise are important to my long-term health and continued recovery.
What I am most grateful for is that I am able to plan each day, each month and even each year knowing I will likely be here to fulfil those plans. Before the transplant, life was a day to day existence, but after transplant, the opportunities seem endless.

GoodHearts is the best support program there can be. Who else but other heart recipients who have made this incredible journey, can relate to what it means to have a second chance.
GoodHearts also provides our caregivers the opportunity to share their experiences with other caregivers. Their journey through the process is as incredible as that of the recipients. Caregivers endure all the work, concerns and worries without question or thought for themselves, allowing us to focus on getting better each day. They are all angels in their own way.

In closing, I would like to say thank you to my heart donor's family. I would also like to thank my wife, the U of A heart function clinic, the heart transplant team, the surgical team, all of the physiotherapy staff and my family and friends who continue every day to provide a positive and supportive influence, which gives me the encouragement to continue getting better each day.

December 2006

Dwight's Story

The heart transplant I received in 1986 did more than just saved my life. In many ways my life took on new meaning and focus as I learned to adjust to the physiological, social, mental and spiritual changes the event caused.

Unlike many others who had heart troubles prior to receiving a transplant — some for a number of years — I experienced heart failure just a couple months prior to needing a transplant. In retrospect, though, my heart functions had diminished over a period of three years. When I learned that I had only a couple of months to live and needed a heart transplant I was encouraged to visit the University Medical Center in Tucson, Arizona, as we were living in Phoenix at the time. I had decided not to consider transplantation as a solution to my heart problems. However, when I learned of the many — 98 heart recipients — who had received new hearts and were living healthy and active lives, as well as getting a lot of encouragement from transplant #97 — Bob Barnett — at the University Medical Center in Tucson, I decided to put my life into the hands of God and the medical centre transplant team. So on Aug. 4, 1986, at the age of 26 I received the miracle of new life from one, and the family of the one, who believed that a tragic death for the one could mean life for another.

Since my transplant, I have continued to lead an active life, refusing to let physiological issues hinder my love for and participation in sport and exercise. Since the transplant, my life-long partner and love of my life has given me three wonderful boys — now 19, 13, and 12 years of age — each of whom are similarly and competitively active in sports. Of all the things I appreciate most since my heart transplant, it is the many recreational activities, such as soccer, skiing, hiking, camping and golf — I can enjoy with my family.

There have been many people along the way who have encouraged and shown me that I am just as capable of achieving my dreams and personal goals as any other man.
  • My heartfelt thanks goes out to:
    The donor family for their gift of life.
  • Bob Barnett mentor and friend — transplant #97 Tucson Medical Center.
  • Dr. Isognogal and the transplant team of the Tucson University Medical Center.
  • Ilene Burton, post-transplant co-ordinator, and post-transplant team of the University of Alberta Hospital who have taken exceptional care of me during the past 18 years and to whom I owe my life.
  • Mark Haykowski, of the physiotherapy department at the University of Alberta, who proved and took me to a level of fitness that I never thought I would be capable of achieving.
  • Ken Riess, my personal coach, mentor and friend without whom I would never have realized a life-long dream of running a half Ironman and some day a full Ironman.
  • Silvio Dobri, president of the GoodHearts Mentoring Foundation, mentor and friend who has given me an opportunity to do something for the heart transplant community that I would not have been able to do on my own.
December 2006

Jenafor's Story

We were snowbirds and delighted in golfing, swimming, travelling, dancing and walking. That was before I had CHF and before fatigue and weakness set it.

After I had a pacemaker, these things were possible but to a gentler and slower pace. I had the pacemaker for about 41/2 years., however, a new one and a defibrilator were installed recently.
Life has improved once more, but I am not dancing or golfing, or travelling very far as my name has been on the transplant list since the middle of of 2004. I can do light housework and laundry, but sometimes need help in the kitchen to prepare meals. Stirring, mixing a shredding. etc., is most tiring and I avoind it or leave it to my husband. I don't attempt grocery shopping or any shopping by myself. However, there are plenty of people — my husband, my sister and close friends who support me greatly.

Last summer I bought a handicap scooter, but have used it only to go around the Lake Beaumaris pathway. The scenery is quite beautiful and I enjoy the fresh air and sunshine. We live in a condo by the lake and there are many social activities to enjoy, but I usually pass on card games. I prefer instead to tape my favourite TV shows, read and do crosswords, etc.
That's my story for now and look forward to reading all of yours.

Note: Jennafor received her new heart on July 25, 2006 and is doing well.

Kevin's Story

Being young — 27 — and healthy I did not have a family doctor, so for any medical problems I'd go to a medicentre.

In mid-November 1992 I had flu-like symptoms, so off I went to see a doctor. He gave me some medication to clear up strep throat. I had to go back several times because I was not getting any better. After some time of not improving I was sent for a chest X-ray and asked to come back with the pictures. The doctor looked at the X-rays and immediately sent me to the Grey Nuns Hospital emergency room.

I was examined by the cardiologist on call I and immediately put in the intensive care for the night. In the morning, I was transferred to the fourth floor and put on several medicines, a low salt and fluid restriction. They suspected the strep throat viral infection moved to the heart causing it to become enlarged.

The cardiologist said I had cardiomyopathy — a severe form of congestive heart failure.
I was sent to the University of Alberta Hospital for more tests and to be assessed for a heart transplant. After many tests and many new medications I was put on the transplant list.
I had not been able to work for a long time and all I could do is sit around, watch television and read. It was hard even to walk up a few stairs. But while on full rest at home I improved quite a bit. My heart had shrunk in size, but many tasks were still difficult.

In early June 1994 I was retaining water in the lungs and my heart had enlarged again — the condition was serious and the transplant team moved me up the list.
At 10:35 p.m. on Aug. 5, 1994, I was called and told they have a possible match and asked if I still wanted to have the transplant. They called again at 11:30 p.m. and said the transplant was a go and to be at the U of A Hospital emergency room by midnight. I was checked over and questioned about my health history then prepared for surgery. I showered using some iodine soap and told to try and get some sleep.

But I couldn't sleep — I was scared, yet excited at the same time.

At 6 a.m. on Aug. 6, they took me to the operating room and performed the transplant.
A few days after the operation the surgeon came to see me and talked to my wife and me and answered some of questions we had. He said the surgery took 3 1/2 hrs, there were no problems and I would be able to go home the following week.

It helped that I was young and was physically active before getting sick. He said I should be able to do anything I want to in about three months. So 10 days after the transplant I was sent home.
It was amazing, almost overnight I felt better than I had in almost 2 years. Through great care and working with the transplant team I have had no real problems and was able to return to work within six months.

Almost 13 years after my transplant, I am not held back by my condition — and just like the surgeon told me, I can do anything I like. I am still fairly active and I am very thankful to everyone who helped me through my ordeal. Yet I can't put into words how I feel about the family who gave me a second chance at a full and productive life by donating the heart of a loved one.
March 2007

Tuesday, August 14, 2012

Marie's Story

On July 5, 2000, while dining out with two of my daughters, Melanie and Barbara, my heart stopped beating.

Luckily for me a student nurse who was at the restaurant performed CPR and got my heart beating again. I came to in the ambulance and at the Royal Alex Hospital, where the heart stopped again, Dr. Fenske worked on me for over four minutes until he got a heart beat.

I spent a week in the ICCU with a breathing and feeding tube and a temporary pacemaker attached to my leg. I then spent half a day in the stepdown, the other half in the ward and that night I had a permanent pacemaker installed. The next morning I had an angiogram where it was discovered that a disease called sarcoidosis had damaged my mitral valve causing a leak. There was no way to repair the leak as my heart was badly damaged, so I was sent home.

Dr. Archibald my respitory doctor had been monitoring my lungs with monthly X-rays for about a year. A biopsy had shown the disease was in the lymph nodes near my lungs. Sarcoidosis usually starts in the lungs or nodes and always travels elsewhere in the body — to the heart in my case.
While I was in the hospital Barb tried contacting the student nurse to thank her for saving my life. The hospital wouldn't give us her name so Barb wrote to an Edmonton paper asking for help in finding the nursing student. CityTv picked up the story, called the hospital and Barb and I got to meet Ms. Reid, the wonderful young lady who had saved my life. I did not wish to be on TV for the meeting so still pictures of me were used instead.

Back at the restaurant, apparently I had bitten my tongue and because I was on a blood thinner my tongue had turned black. I also came down with shingles on my right arm. Also, I was placed on oxygen shortly after returning home from the hospital.
About nine months later my family physician, Dr. Amerongen, wondered if something more could be done for me and he contacted Dr. Fenske at the Royal Alex, where cardiologists sent me to the University of Alberta Hospital to see if I could become a candidate for a heart transplant. I met with Dr. Tymchak in May; tests were done during the first week of September; got my beeper in October and had my transplant Dec. 30, 2001.

I am so grateful to all the people who saved my life — Dr. Amerongen, Ms. Reid, Dr. Archibald, Dr. Fenske and the cardiologists at the Royal Alex and the U of A Hospital, the nurses at both hospitals who provided such excellent care, Dr. Wang who performed my transplant and especially the family who donated the heart — my new heart. I also want to thank Ilene Burton who has always been there for me.

Lastly to my caregiver and husband, Eddie, thank you for all your love and

Silvio's Story

I was walking to the bus stop when my chest felt like someone had placed a weight on it. I slowed my pace hoping the tightness on my chest would ease. It didn't, so I sat in the bus shelter. I was gulping for air and sweating but managed to board the bus. The bus ride took 15 minutes and the walk from the bus stop to the Edmonton Journal Building was painfully slow. I had to sit down in the atrium, but once I got to the fifth floor receptionist's desk I could go no farther and asked that she call an ambulance.

From that point — about 11 a.m., April 24, 1998, until May 7, my memories are like snapshots in a photo album. I recall the wail of the siren ... the pain spreading to my jaw and teeth ... seeing my wife at the University of Alberta Hospital ... talking heads popping up around me ... a TV screen ... my beating heart ... a voice proclaiming “The bypass may not be enough to save him.”

Some months later a doctor told me I was given a 50-50 chance of surviving and had to be revived several times during the triple bypass.

A week after the bypass my crashed — I had congestive heart failure, my kidneys failed and I was placed on a ventilator. My heart wasn't strong enough to pump blood through my body and I was dying.

A heart transplant was the only alternative to keep me alive, my wife, Marielos, was told.
I was placed on the heart transplant list as a “status 4” — the urgency meant I had but hours to live.
A matching heart was found in a little over a day, and when I came to on May 7, Marielos told me I had a new heart.

She had to repeat it several times before I understood what she was telling me.
I owe my life to a donor and his family — generous people I will never know, yet no day goes by that I fail to thank them. The wonderful blending of miracle and medicine has given me a chance to live a full life once again. Medications, diet and exercise have helped with the recovery, but so has meeting other recipients whose positive attitude has been a source of inspiration.

I know of no better way to thank my donor and his family then to make a personal commitment to make others aware of the benefits of organ transplants and how the “the gift of life” can keep on giving.

December 2006.