charity's story

My Life pre-transplant was just like most people. I worked full-time in the Social Work field, and I was engaged and also a step-mother. I was very involved in sports where I played in an adults slow pitch team and very much enjoyed fishing. I was an avid hiker and spent a great deal of time in nature. My very best friend is my dog Molly. We enjoyed going on adventures together and our favorite adventure is walking on the Seine River in the winter.

At the age of 35 my father passed away and this was a very stressful time for me. I started to gain a

significant amount of weight, and having a constant cold and chest infections. I kept thinking this was due to the stress of my fathers passing. Then one day while I was grooming my dog I bent over and it felt like someone kicked me in the chest. I tried to push through it as at that time I had a chest infection. I went into my house and I could not lay flat as I could not breathe. The next day my  symptoms had not gone away.  They only worsened so my fiancé took me to emergency where I was diagnosed with stage three (3)heart failure. This was the beginning of the most terrifying journey I  have been on. I then. met with my new cardiologist and it was explained to me due to my corrective surgery when I was baby my right ventricle pumps the blood throughout my body. The right ventricle  is not designed to do this therefore it had become significantly enlarged. I was told I had five (5) years max to live and the only thing that will increase my longevity was to have a heart transplant.  I was not a candidate due to my body working backwards throughout my life. This was very hard news, I always knew I would need to be on medications or possible surgery, however I never heard I would need a heart transplant. Then to hear I would most likely not be candidate for a heart transplant was so very devastating.

From that point on I decided to continue to work as long as could. I worked for about a year after I was diagnosed. I then became more ill and my cardiologist said it was time that I stop working and to spend time with my family and encouraged me to do my “bucket list” as I most likely had months to live. Two weeks after I stopped working as I became ill and went to emergency, it was found I was in severe heart block. It was a very scary moment for me. I nearly died in emergency that day. Thankfully the team at the hospital were able to install a temporary pacemaker and defibrillator which saved my life. A week later I had the permanent pacemaker and defibrillator installed and I was discharged home. Within two weeks of being at home I fainted, at which point my pacemaker had malfunctioned and I had a second pacemaker installed.

Once I healed from the surgery my mother and I decided to go on a trip to Costa Rica to make some

memories before I became too sick. When I returned home from our trip I became sicker. My cardiologist decided he would refer me to the transplant clinic to see if I was a candidate. When I met with the transplant team they informed me I would need a variety of tests which would include checking my organ function, bone density, extensive blood work and so on. These tests took several weeks to complete. After the team collected the information they presented my case to the hospital that would be conducting the transplant. I was denied by the team. This was a huge let down, it was very devastating news for me. All my hope was gone. I became very angry and very depressed. I must say the hardest part of heart failure for me was the slow decline. It was so hard to see everyone continue with their lives and I could not anymore. Walking up three steps was awful. I could not play baseball, walk long distances and any type of incline was a challenge. I became even more sick and was hospitalized. The transplant team met with me and informed they are going to present me again. I was told at the end of the day I was listed! I had some hope again. The team did caution me that since my blood type is 0- negative, the chances of me getting the call prior to death was extremely low, and if I were to receive the call they were uncertain how my body would cope with a normal functioning heart. I was discharged that day as I wanted to be home with my family.  

Two months later while I was at the vet clinic I received a call, and it was the call of a lifetime. It was my heart. I never thought it would happen, I was screaming like a won the lottery (which I did). At 11:13am I received the call. When I called my fiancé he thought at first something was wrong with our dog as I could hardly tell him what was going on, I was so very excited. My mother was calm as a cucumber. I was air ambulanced to where my procedure was taking place. At 7:20pm I was in surgery and at 2:00amthe procedure was complete and there were no complications.  I do not remember much for the first weeks after the heart transplant. I had a very fast recovery and was brought back to Winnipeg where I stayed in hospital for a week and then was discharged home.

How has my life changed??

First, I must highlight this is the first time in my life I have had a normal functioning heart.

I can breathe again, I can walk like a normal person again, I can play baseball again and I can LIVE

again!!! I have been back to work for the past year and so very grateful as I work with an incredible

team. I have had struggles since my transplant, however it is minimal.

I am now three (3) years post heart transplant. Since I received the gift of life I have been apart of so

many highlights not only in my life but being part of family and friends' BIG moments. I have had the

pleasure to witness six (6) marriages, new babies, met new friends who have gone through a journey

similar to mine, watch my step daughter grow into a beautiful young woman, and marry the love of my life, I continue my adventures with Molly, travel and most of all watch my mother glow again as she no longer needs to worry about me.

I am forever grateful for my family and friends for being such an amazing support to me. I am also extremely grateful for the medical team that has saved my life and the after care received from my transplant team.

Most of all I would not be here if it was not for a person whom I never met who saved my life. There are no words to express my gratitude to my donor and his/her family. I hope one day I can express my gratitude in person to my donor family.

On November 21st and 22, 2005, my wife Marge & I went for our daily morning walks of approximately 4 miles. On November 23, 2005 Marge & I together with a couple of friends attended Prairie Theatre Exchange in the evening. A cough had started and I was concerned about disturbing other patrons at the theatre. My cough was not bad and I did not disrupt the production. By November 24th and 25, 2005, I started to have symptoms of a flu—cough, tiredness, and a slight fever. On November 26, 2005, Marge & I rented a movie for the evening and I watched most of it with my head in my hands. After the movie I told Marge that this was the strangest flu that I had ever had in that I was “sucking” for air when I climbed our stairs. She immediately told me she was taking me to a Hospital Emergency Department. I called Health Links, who after listening to my symptoms, told me to get to an Emergency ASAP or call for an Ambulance. I arrived at the Grace General Hospital Emergency at approximately 11:00 pm on Saturday, November 26, 2005.

At the Emergency I was registered and immediately placed into an examining room. During my wait for a medical examination, nurses came in regularly to check on me. After several hours I was seen by a physician. I believe that my initial diagnosis was that of dehydration and was immediately started on IV fluids. The second diagnosis was double pneumonia and the third diagnosis was a heart attack. I was started on appropriate treatments for these conditions. I was not responding to treatment, and was referred to the St Boniface General Hospital for an EKG. I was originally scheduled for Tuesday November 29th but bumped to Wednesday, November 30th.

The EKG indicated that my arteries were 100% clear and functioning fine, but that my heart muscle had been compromised. I was subsequently informed that my heart was functioning at approximately 10% of its capacity and diagnosed with “Cardiomyopathy” (a virus had attacked my heart muscle). On Friday December 2nd I was sent back to the St. Boniface Hospital for further testing, but since I was coughing too much, proper imaging could not occur. Dr Easton, at the Grace General Hospital, contacted Marge to ask for her support to medivac me to Edmonton for treatment. While it was originally thought that I would be sent to Edmonton on Saturday or Sunday, Dr Easton and Dr. Lalond (Cardiologist on call at the University Hospital in Edmonton) arranged to have me sent ASAP. Marge had 2 hours notice and we were medivacted at approximately 6:30 pm on Friday December 2nd.    

I arrived in Edmonton at approximately 9:00pm, was admitted and examined. On Saturday December 3rd after numerous tests & scans, staff became increasingly concerned about the functioning of my heart and other internal organs and by mid-afternoon was placed on the heart transplant list as a Class 4. By 11:30 pm, I was put on a balloon pump (no function in half of my heart). At approximately 5:20 am on Sunday December 4th, Marge was informed by a cardiologist that they had located a matching donor heart. At 9:00 am on Sunday morning, I was placed onto an Extracorporeal Membrane Oxygenation (ECMO) machine (no heart function).

On December 4th at 8:30 pm, I was wheeled into surgery and received a heart transplant. I spent 10 days in ICU and a total of approximately 21 days as an inpatient in University Hospital in Edmonton. Upon discharge, I attended the Heart Transplant Outpatient Program 5 days a week until February 24, 2006. My wife and I returned home on February 26th, 2006 and have resumed an active life since then (inclusive of attending the gym 5 days per week).

On December 4th, 2018 my wife and I celebrated my 13th birthday!!!!!

My wife and I would like to thank the staff at the Grace General Hospital, the staff at the University of Alberta Hospital Heart Transplant Program, and the staff at the St Boniface Hospital Heart Transplant Clinic for their professional and supportive interventions and follow up. We would also like to express our gratitude to the individual and their family who made a conscious decision to become a heart transplant donor. 

Written by Neil Koop

Neil Koop’s Story: Part 2

A room full of happy hearts December 4, 2016

Imagine a room full of the most diverse people who hardly know each other, but are linked together by a shared journey, or should I say outcome. Here, things that often tend to divide people - ethnicity, skin colour, age, religion, social status - don't matter. All are walking miracles - each having been given a second chance at life by the caring families whose loved one's lives ended too soon, but live on in other people's lives. There are a few who are waiting in hope for this to become their reality. They are hooked up to a life-saving electric pump called a Left Ventricular-Assist Device (LVAD). Each of them carries a shoulder bag slung across one shoulder, a battery pack attached to a wire, connected to the pump, that keeps their blood flowing. No heartbeat. That in itself is a modern medical miracle.
 

Everyone in this room is either a walking miracle or connected in some way - a partner, a supportive friend, a parent. It's the annual Manitoba HeartLinks Christmas Party and Annual General Meeting. We are here because we are celebrating life. A new heart. One man just had his transplant a few months ago, several within the year. Some fifteen, some twenty years ago. One woman, the longest surviving heart transplant, wasn't there. She is coming up to her 34th year.* She gives us all hope. There is so much joy all around. Everyone is so grateful to be here, and I'm not just talking about the Christmas party, but to be in this world - doing what we all take for granted - breathing, walking upright, eating, telling stores, laughing.
 

Stories are shared. Lots of laughter. One of the transplants has just performed a song he wrote – “ICU Psychosis” - and has encouraged everyone to share their funny stories so that he could perhaps incorporate them into his song for the next party. Or, on a more poignant, emotional moment, he sang "I touch my chest and I feel your heart beat....”. Not too many dry eyes. The room is charged with a feeling of shared understanding.
 

The emotions are so big - there are no words that can even come close to describing the actual experience, the gratitude - the reason why we're all here. And there are no words to describe what was going on inside my heart and mind a few days ago while attending this party. I've been to many of these events before, but it never hit me quite like it did that day.
 

It was eleven years ago today that my husband Neil received his new heart. I actually forgot about it until right now. I was trying to remember today's date - I knew it was close - then I remembered. And, at this exact time, eleven years ago, I was probably leaning over Neil's bed, whispering in his ear "hang in there buddy, you're getting a new heart today". He couldn't hear me, but I thought perhaps that it would reach his psyche and give him the strength to hold on. He was on life-support. All I was hanging on to was the knowledge that they had found a matching donor and that they would be transplanting the heart later that day. In the back of my mind, I knew that things could go wrong - the heart could end up being no good or Neil would be too sick to risk putting in a perfectly healthy heart. It was made abundantly clear to me about an hour earlier that he would never leave the hospital alive without the transplant. I chose to put these thoughts out of my mind. I was filled with this incredible hope.
 

And, as you all know, it turned out beautifully. And guess what he's doing right now. He's outside, scraping the ice off our boardwalk.

Written by Marge Koop

*She passed away in 2018, a few days short of her 35th year post transplant.

My life changed forever when I had a heart attack in July, 2012. I was 47 years old. July 17th was another beautiful day camping at Birds Hill Park with my two boys. Ethan was 12 and Tyler was 15. That beautiful day would be the last normal one as I knew them.

I immediately noticed pain in my chest during a bike ride on one of the park’s beautiful trails with my boys. I thought maybe I pulled a muscle from exercising. The pain stopped when I finished riding so I thought nothing more of it. The pain returned with a vengeance on another ride the next day. This time the pain radiated down my arms. I felt nauseous and broke into a cold clammy sweat. I thought maybe I was getting the flu. When I went to bed that evening the pain in my chest was so excruciating, I couldn’t lay down. I knew something was wrong. 

My husband Glen rushed me to Concordia Hospital. While waiting for an EKG for a suspected heart attack, I sat on a table thinking I couldn’t be having a heart attack, I am too young and healthy! We are an active family spending our summers camping, cycling, hiking, swimming, dirt biking and quading. I enjoyed Zumba classes, ran and did resistance training. With all that in mind, I spent those two days oblivious to clear warning signs.

The EKG was inconclusive however, blood tests confirmed I was having a heart attack. Within a few hours I went into cardiac arrest while being transferred to St. Boniface Hospital. Doctors explained to Glen I had been without oxygen for 20 minutes. They explained if I survived, I could suffer brain damage or multiple organ failure. My family was in shock. Glen had told me of this horrible conversation months later, including his heartbreaking conversation preparing our boys that I may not survive. Shortly after arrival at the hospital, I underwent Quadruple By-Pass however, the damage was beyond what by-pass should repair. Doctors tried ECHMO and an Impala Pump. Both are extreme mechanical interventions to restore heart function. I remained unconscious for four days and when I woke up, l had no idea why I was in the hospital. My doctor explained I had a heart attack, and the type I had is not common. It is called SCAD – Spontaneous Coronary Artery Dissection. In a SCAD, a separation or tear forms inside the wall of a coronary artery. Blood that leaks from the injury narrows the artery, causing a heart attack. It happens spontaneously, often with no warning, which makes SCAD all the more elusive to doctors and terrifying for survivors. SCAD isn’t caused by plaque or a blockage. Most survivors are young, healthy women with no obvious risk factors for heart disease. Survivors like myself.

After five days, neither pump restored heart function. My ejection fraction was 12% and normal is 60. They explained an LVAD would be my only chance for survival. An LVAD is an internal heart pump attached to the left ventricle which pumps blood from the left to the right ventricle and out to my body’s blood vessels. The LVAD is temporary and a bridge to transplant. I would need a heart transplant for any longevity of life. I heard my surgeon explain what was happening to me, but shock set in and nothing registered. A few days ago my life was normal and I was camping with my family. Days later I’m lying in hospital bed critically ill, hearing this shocking news.

During By-Pass surgery, I suffered HITT (Heparin Induced Thrombosis). HIT is caused by the formation of abnormal antibodies that activate platelets. It is rare affecting about .02 per cent of the population. Clots formed stopping blood flow to my feet, which were turning black. My feet were becoming nacrotic and I was told amputation would be necessary. I spent 3 ½ months in hospital, experiencing many complications such as a stroke and a pulmonary embolism. I finally went home in October with bandaged feet in moon boots, semi ambulatory needing a wheelchair, and with a bionic heart! I was a bit of a mess, but I was alive!

My life changed drastically. I went from being an independent woman who worked, raising a family and caring for my ailing mother, to having daily homecare and daily nursing to change the bandages on my feet. The caregiver tables turned when I came home. Instead of looking after my boys, they helped to look after me with housework, cooking, laundry, and pushing my wheelchair. At 47, I felt as though I was prematurely navigating the senior citizen world by requiring home care, nursing, and using handi-transit. 

In March, 2013 my feet became infected and doctors determined it was time for amputation. My left forefoot and all the toes on my right foot were removed. About a week after the surgery on my feet, I developed blood clots in my LVAD. My LVAD was failing and I was rushed into surgery to replace my pump in order to save my life yet again! I spent another three ½ months in hospital recuperating from both surgeries. I had spent my birthday, Glen’s 50th birthday, and our anniversary in the hospital. My son’s 13th birthday was coming up on May 11th and I was determined to go home. I walked a few steps every day for a week, enough to satisfy my physiotherapist and went home on May 10th. A prosthetic was made and I started amputation rehab in June, 2013. By the end of September my severe gait had improved 100%. Going thru amputation rehab was a pivotal turning point in both my recovery, and accepting my new life. 

After undergoing months of rigorous testing, I was medically stable enough to become listed for a heart transplant in November, 2013.  After one year on the wait list, I received that amazing phone call telling me a heart was available! After arriving at Edmonton University Hospital, I was prepped and then waited for the surgeon. He came in to explain that the heart wasn’t a good match and I wouldn’t be getting a new heart. Initially, I was upset but after some thought, I truly believed that I wasn’t meant to get that heart. I believed that when the time was right, I would get the right heart meant for me.

In February 2016, I developed electrical problems with my LVAD. When I was plugged into AC power, RPM’s dropped from 8800 to 2400. This meant the pump was shutting down. I remained in hospital and put at the top of the transplant wait list. Doctors kept me on batteries hoping my pump would hold out until a heart became available. After 2 ½ months in hospital, a heart became available on April 22nd!

After a 2 ½ year wait on the list and 4 years living with an LVAD, I was eager to get a new heart and move on with my life. I was in surgery at 6:00pm, they finished about 1:30 am and I woke up around 9:30 am. My surgeon advised everything went well and my new heart starting beating right away. He told me that rarely happens! The four weeks in Edmonton were tough. Dangerously low blood pressure and debilitating migraines kept me immobile longer than expected. The reality of recovering from a transplant is nothing like the movies or television. You don’t walk off into the sunset after receiving your new heart. It was a struggle trying to get through each day. 

It took a long time to feel better, but with recovery came the reality of what a special gift I received. The gift of life and more time with my family. I am almost  three years post transplant and feeling stronger and healthier all the time. The shock, anger and sadness of all I’ve been through has worn off and I have settled into my new reality as a survivor. I am recovering, overcoming and creating new priorities. I’ve made many positive changes in my life during this experience. I’ve learned nothing inspires a dramatic life reset like an unexpected health crisis where death has cheated me more than once. For that, I am grateful.

Every morning when I wake up, before I get out of bed, I thank my donor for their gift of life. The best way I can honor my donor is to live each day with gratitude and purpose. Part of my new purpose is sharing my story and raising organ donor awareness.