Christine Grixti was diagnosed with a dilated cardiopathy at the age of 18. She spent her life dealing with heart problems, and 25 years after her first diagnosis became the second female in Malta to undergo a heart transplant. Her aim now is to share her story as a living campaign for organ donation.
When I was first diagnosed with dilated cardiopathy my symptoms varied. Mainly I experienced frequent fainting spells, and this meant I had to undergo several tests to determine the root cause of the symptoms. After a few years it became clear that my heart muscle had been infected by a virus and was expanding at a slow pace.
Despite the affliction of the virus, the care of my cardiologist and proper medication meant I could live a normal life during the first few years following the diagnosis. But this all changed after I experienced the trauma of losing both my parents in the space of four years.
“Essentially, I had been fitted with a personal ‘salva-vita’; and even though it was painful, today I’m grateful for it”
In May 2007, my father passed away, and four short years later my mother’s death followed. I come from a very close knit family so their loss had a substantial effect on my life as I knew it, and consequently, my health was affected too.
My heart began to deteriorate at a faster pace, and I had to be implanted with a pacemaker called an Implantable Cardioverter Defibillator (ICD) – a battery-powered device placed under the skin and used to keep track of a person’s heart rate.
I had thin wires connecting the ICD to my heart so that when I experienced abnormal heart rhythms, the device would transmit an electric shock to restore a normal heartbeat again. Essentially, I had been fitted with a personal ‘salva-vita’; and even though it was painful, today I’m grateful for it. Because of the ICD I was about to it continue living my life, albeit through the acceptance of certain limitations. But I was still living.
My serenity didn’t last long. Shortly after my mother’s death I contracted a severe infection in the wire leads connecting to my heart. I spent most of my days in and out of hospital, and was prescribed copious amounts of antibiotics to help fight off the infection – but all was in vain.
After two years my doctors suggested that I travel abroad to be operated on to try to fix the damage. So my husband and I headed to Pisa in October 2013, where I underwent two cardiac operations in a month. The first operation was to remove the infected leads which were connected to my heart and the ICD device completely; an operation which was considered very delicate and complicated. The second was to insert another ICD after a few weeks.
My time in Pisa was hard – I was away from my extended family; and that was tough for me. But it meant I got to spend time with my husband, who was with me 24/7. We lived together in hospital, and thanks to him I woke up with a smile every single day. Although it was very tough time in my life, somehow I treasure the days we spent there together.
“A new journey had begun; a journey which somehow gave me more courage and determination to get stronger”
Back in Malta, after I’d been through my recovery period, I was determined to continue with my life. But reality once again came crashing down when my cardiologist gave me the news that I needed a heart transplant to carry on living. I cried my eyes out. It was very hard to absorb the idea, even though I had been preparing myself for it for some time.
Despite my shock, I accepted being placed on the waiting list. My treatment was changed, I visited the Heart Failure Clinic more often, and I was assigned a cardiac surgeon who followed my progress. A new journey had begun; a journey which somehow gave me more courage and determination to get stronger.
At the time, my life was like a roller coaster – one day I would have the biggest smile on my face, the next I would be unwell with a drastically changed mood. But I found comfort in my faith and in the power of prayer, and I pulled myself up and continued fighting to survive with the hope to reach my ultimate goal.
Meanwhile, I established contact with a woman who had undergone the first heart transplant on the islands, and we developed a friendship. She was truly there for me, supporting me throughout the whole experience. Back then we weren’t to know that I would also survive the transplant experience. We were just united by the fact that we were the first two women to have the surgery locally.
Time was sweeping by and I found myself continually facing more challenges with every passing day. I was supported by all the people who surrounded me – my family, friends and work colleagues. My health was gradually deteriorating, and soon enough I became unable to work a full day at the office.
I was lucky enough to have very understanding chairman and manager who allowed me to continue working at a pace which was easier for me to cope with. They allowed me use flexible hours, and I was also given the green light to work from home for extended periods. If it were not for these people and the support they gave me I would have had to stop work altogether. Today, I don’t have enough words to express my gratitude to my work colleagues.
Up until early 2016 I was living a ‘normal’ life, even considering the enlargement of my heart, the daily limitations, the strong medication, the frequent hospital visits and the frequent ventricular tachycardia episodes. I was determined to make the most of things.
I began studying for a certificate in Human Resources – I was so glad to find myself studying again after so many years. But the satisfaction of taking up this challenge was short-lived, and unfortunately an evening which should have been a joyful one, turned out to be the most horrifying day of my life.
During my graduation ceremony my heart lost its normal rhythm, largely due to my excitement, and I collapsed. My ICD kicked in and administered a total of ten shocks to my heart in 20 minutes, in an attempt to restore normal cardiac rhythm and stability. I had no pulse, I was dying.
“There was no time to say my goodbyes to my loved ones – I was dying”
The shocks were so intense and painful. I felt so afraid. There was no time to say my goodbyes to my loved ones; I was dying there in the warm arms of my beloved husband and in front of so many people, including my dear friend and manager.
I felt that it was the time, I was ready to let go; the ICD shocks were taking my strength and my breath away. For the first time in my whole life, I was giving up. I looked up, closed my eyes and was prepared to meet my mum and dad.
But the last shock brought me back, and in that moment I knew that my journey on earth was not meant to end then. I found myself in hospital, being monitored closely, and in a matter of few hours I was stable again. This was April 2016. I was back to life, work and my normal routine after a few days. Until June 2016.
It was Thursday 9th June 2016, 2.30pm. I was resting at home, alone, and I received a phone call from hospital. I was told that there was a possibility of a new heart, and that I had to be in hospital within an hour.
I was speechless. I felt numbness all over my body, and I felt my heart beating fast. I was so afraid of the consequence of having to face another set of ICD shocks. Sure enough, the shocks started. I was once again in so much pain, losing consciousness – I felt like I was dying again, and that I wouldn’t make it to hospital.
I had come so close to being cured but I was dying before I could grasp that moment. I had to call my husband who was at work to ask him to pick me up and take me to the hospital. But I couldn’t find the strength to call him. Time was running out; I was still under the effects of the ICD shocks. Finally, I pushed myself beyond my intense struggle and managed to reach my phone and utter a few words to my husband.
“I was thrilled, but at the same time so sad, knowing that my donor had lost his or her life”
Thankfully we made it to hospital in time to prepare me for a heart study procedure. This is mandatory for transplant patients, it determines the possibility of the actual transplant operation. My husband and my family were eagerly waiting in the waiting area, and soon we were given the good news that I was well enough to undergo the heart transplant the following morning.
I was getting a new heart.
I would soon no longer have to call myself a sick person. I was thrilled, but at the same time so sad, knowing that my donor had lost his or her life.
The following morning, the dedicated staff at Cardiac Surgical Ward a Mater Dei hospital prepared me for my operation. Members from my family were there to support me, and together with the Transplant Support Group’s priest – we prayed. Before I knew it I was ready to be taken down to the operating theatre.
The procedure lasted around four hours and thanks to my cardiac surgeon and his dedicated team it was a success. I was remained in an induced coma at the Cardiac Intensive Care Unit over the weekend, and waking up on the Monday was somewhat difficult and confusing.
I remember having hallucinations, not remembering and recognising my husband and other family members and saying things which didn’t make any sense at all. I remained hooked up to machines and wires for ten days post-operation. The dedicated and amazing nurses from the CICU made it possible for me to feel comfortable.
Although they were very tough days, I was happy to be there under the care of such a dedicated team. They made me laugh when I was down, they helped me out with everything I needed, and they were so patient to listen to me when I need to talk or even cry.
“I had received the biggest present from an someone I didn’t even know; I had a healthy heart to live a normal, decent life”
I was in a special room and only my husband and my two brothers were allowed to come in, dressed in special gowns, masks and gloves. My immune system was very low, so I was very weak and susceptible to viruses and infections.
That month I celebrated my birthday. It was so nice to see all the nurses, family and friends behind the protective glass door celebrating with me. That was certainly my best birthday ever. I had received the biggest present from an someone I didn’t even know; I had a healthy heart to live a normal decent life. Nothing could represent a nobler gesture or greater gift – the gift of life.
I had plenty of time on my hands to reflect on my life and my future. My parents and my donor, whom I consider to be my guardian angel, were present – they were there in the room with me.
Back home it felt scary not to be surrounded by nurses. I was afraid to be left alone. Everything was so new and different then. I didn’t know how to cope with a healthy heart. I was afraid of doing certain things until I came to terms with the fact that I had a new heart. The sick heart was gone, I was free.
The recovery time after a transplant surgery is long and tough and the first year and a half after the operation are the most critical. Nowadays, I work from home, and for the time being I have to avoid being close to people especially in closed places to eliminate the risk of infection. But I have hope that soon I’ll be back to work, and back on my feet.
My message to the Maltese public is simple – our body on earth is required to function throughout our lives, but once we die we no longer need our body. Our body, including our organs, are buried.
Our organs can save lives. And that’s the best gift anyone could ever give. I was, and still am, a donor. I never imagined I would someday need an organ myself. Thanks to the family of my donor, my guardian angel, I was given a second chance to live. I encourage each and every one of you reading my story to be a proud donor.
My donor was a young man who discussed his wish to donate his organs with his relatives, and his wish was honoured by his parents. Thanks to his courageous and loving family, I am living. I am so grateful for my guardian angel’s family, who, notwithstanding the heartbreak they were experiencing at the time, turned their personal situation around, making it literally a life-changing experience for me.
“My donor was a young man who discussed his wish to donate his organs with his relatives, and his wish was honoured by his parents. Thanks to his courageous and loving family, I am living”
My advice to patients waiting for an organ, is to have faith, and never give up. We cannot change our destiny but we can change the way we live our life. Think positively, praise yourself when you are having a good day, cry if you feel like crying, but most importantly have the will to stand up again.
Signing up as an organ donor is small gesture, but it could save at least eight lives. My plea is for readers to sign up for the donor card now. Once you do it, keep the card with you always, and inform your close relatives about your wish to be an organ donor. Discuss it once, do it, and then forget about it. Live a healthy, successful and enjoyable life. The rest is in someone else’s hands.