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Waiting For Transplant
My family’s six month ordeal started one Sunday in July 2009.
My Parents were over for the day. After lunch my father complained of a pain running down his left arm. My mother and I bundled him into my car and we took him to our local A and E, where the doctor confirmed he was having a heart attack. Once out of danger, a few days later, he would go to Cardiff University Hospital to have a stent procedure.
My youngest son Matt had been unwell that week too. He had been coughing up specks of blood and feeling achiness in his back. Matt and his older brother William, were both born with congenital heart defects. They have had many small procedures such as pacemakers inserted since birth.
Both boys had been well until now. Matt was getting worse and couldn’t keep any food down. He had thicker traces of blood and his back was hurting more. The GP booked Matthew into the same hospital as my father. It was all quite convenient. We could share the visiting amongst us. When it was not visiting time, my father would keep Matt company. This reassured me as up until now Matthew had been on a children’s ward, where I could stay 100% of the time with him. I was aware that Matt, now 19, was scared and very ill.
A few days later, ahead of my father, Matt was transferred to Cardiff Hospital, as his health deteriorated further.
New aches had spread around Matthew’s body. He was constantly being sick, even though he had stopped eating. The consultant had limited Matt’s fluids to 1.5 litres per day.
One evening just before I left, Matt broke down with emotion. He had been very sick with large clots of blood. He was very frightened and in pain and we didn’t know why.
I left the hospital at 10pm, got into my car and paid the £12 daily charge (This was just before Welsh hospital car parks became free). The homeward journey was my time, my personal space where I was back in control. It was a place where I could cry or shout, isolated from everyone else.
The next morning I went to the hospital. Matt had been moved to a single room. The reason for his isolation became clear when the consultant came in with the sister. The doctor explained the results of the tests and why Matt was in so much pain. We learnt the heart was not pumping efficiently. Fluid had begun to deposit around the organs. The liver and lungs were being impacted with the fluid, which was causing the pain. There was nowhere for the fluid to go. Each organ was under stress.
Well it was bad news, but I remember thinking, now that they know what is causing the problems they can now start the treatment.
“There is no treatment for this kind of condition.” The consultant said. He continued, “The heart will continue to grow in size and become weaker and eventually stop working.” Matt and I nodded without comprehending.
“So how will Matt get better?” I said. I thought I hadn’t heard correctly, also my 73 year old father was in theatre being patched up and expecting to go home that evening.
Matt and I stared at each other it was so surreal. Had we both heard the same thing? We didn’t talk. Matt may have wept, I can’t be sure. I felt numb and could only think about my son who I had just been told was dying.
The sister came back in. “Had you been expecting to hear that?” she asked gently. “No!” we said together. It was the first thing we had said since hearing the awful news. “I thought Matt would need a new pacemaker.” I said. Matt added, “I just thought I would need stronger tablets.”
I couldn’t cry on the journey home. I was too stunned. I was too terrified to cry. Adrenalin was making me feel so sick and keeping me alert. Until now I needed to cry to feel myself healing and to give relief from anxiety. Whilst Matt was alone and so ill, I didn’t want to get relief it didn’t feel fair to him.
Friends and family told me that I was being very strong and how amazing I was. I wasn’t, it was just an appearance. I had stopped eating and I didn’t feel hungry. Inwardly I wasn’t coping. I hadn’t been to work for weeks. I had no idea if I was still on full salary or not. I had stopped all domestic functioning at home. I had become difficult and distant with my family. I wouldn’t return friends messages or answer their calls. I hated being home. I just wanted to be with Matthew. At the end of visiting I would go shopping to buy him drinks, pyjamas, games etc. I needed Matt to know I was constantly thinking of him, even though I wasn’t with him.
Matt’s brother William was as worried as me. I watched him suffer too. He had the same condition, called Cardiomyopathy. This would mean that he too would need a transplant one day.
An ambulance took us to the QE Birmingham. I was booked into a bedsit, which cost £21 per night. I was now earning less than what I was spending out on to stay and support Matthew. There was another mother, going through the same as us, she too was finding it financially difficult.
Matt was on a transplant ward with three other older male patients. He was to have many procedures where some were more unpleasant than others. One procedure in particular, known as a heart biopsy, was quite uncomfortable. The procedure is done whilst awake under a local anaesthetic.
We were told that not everyone can have a donor heart. This became a new worry. Surely having to have a heart transplant was bad enough, without being told that he needed to qualify to have one?
Another of the qualifying assessments was to be interviewed by a psychologist; it was completed in Cardiff the day before QE. The psychologist drew the curtains around us and perched on the bed.
He passes the test. She opens the curtains and disappears. Matthew and I look at each other with relief. Our thoughts are interrupted by the sound of a nurse opposite shouting behind curtains, “Have you opened your bowels today Mr Smith?” It was hard to maintain ones dignity and it was hard to maintain ones privacy.
After all the procedures are conducted, Matt learns that he can have a transplant. The transplant coordinator brings the forms and draws the curtains. “Here we are Matt, please sign these, who knows a heart may become available tonight.”
“I’ve been thinking, replies Matt, “Can I have a few days to think about it?” She replies, “Matthew you are very ill, on a scale of 1-10, with 10 being dead, you are at 9.9!”
Matt signs the forms.
She continues,” I have to tell you that a heart may not become available in time, you must be made aware of this. Therefore, we suggest you put everything in order when you get home. There may also come a time when you might be too poorly to receive a donor heart, we would then sadly have to take you off the donor waiting list.”
She draws back the curtains, the other patients and their families are crying. The patient next to Matt hands him a tissue box, after taking a handful of tissues first for himself.
We are taken back to Cardiff to wait for a heart. Matt is allowed home on weekends. On a Saturday evening in early December 2009, we get a call from QE Birmingham. “Please make your way here immediately, we may have a heart for you!” the coordinator tells us. My husband Jon drove us to the motorway. Matt and I are a mixture of emotions, excitement, anxiety and relief. Jon says, “You will be home and well for Christmas”. My mobile rings, a voice says, “Return home, its bad news I’m afraid, unfortunately the heart isn’t suitable.” On returning into the house we all go separate ways to cry. Will is uncontrollable and takes it badly.
After Christmas, Matt was to move into a local Hospice where he was to receive palliative care. However he became too sick and was taken straight to QE Birmingham where he was hooked up to many machines. A balloon pump was fitted, which kept him stable for a few days. Another heart was available, but sadly it wasn’t a good match and declined. His kidneys were starting to fail. He was given as much pain relief as was permitted to keep someone alive. He went in and out of sleep. Sometimes when he woke, he would say, “I can’t go on much longer like this mum.” Sometimes I felt the same and wished his suffering would end, other times my response was, “Yes you can. A heart will come soon and you will be well again.” I watched him get weaker.
Shortly after, he was asked to sign a form consenting to have a Left, Ventricular Assist Device (LVAD) inserted. It was a risky procedure, but without it he would die. I was asked to make a will with him. William and his father were there for him to go to theatre. I couldn’t say goodbye or that I loved him. I was utterly speechless. I knew he felt that I loved him. We had been together throughout all of this and were now very close. All I could manage to say when he went into theatre was how proud of him I was. He had been so strong minded and so brave.
The operation had been successful. His organs had started to function adequately enough for him to continue on the donor waiting list. It was explained that the LVAD was just a bridge, where it would remain for approximately 28 days. This should give sufficient time, although not definite, for a healthy donor heart to become available. After this they would then reassess whether it was cruel to keep him alive or kinder to let him pass away peacefully. A countdown had started.
As he woke he told his father he just wanted to die now, he had had enough. It was all too difficult with no certainty of a happy end. His father said goodnight to him and later broke down. He had to return home, he couldn’t stay and watch Matt so ill. He thought he would die soon and didn’t want to remember him that way.
Another heart was dismissed. Matt was now priority in the country to receive a heart that matched his size, weight, blood and tissue group. One week had gone by, it was snowing heavily outside. Matt loved snow. I talked about the fun times we had had with him and Will. Matt was very low. The man next to him had passed away that day, whilst waiting for a heart.
I went back to my bedsit. The phone woke me up at 3 a.m. It was the transplant coordinator, “Come over now,” she said, “We have a heart for Matthew and it’s a good match. He is about to go to theatre. You have 10 minutes to see him before he goes.”
As I walked into Intensive care, Matt was sitting up smiling and talking to everyone. He beamed at me. “I’m not scared, I can’t wait.” He told a doctor. The anaesthetist was trying to find a vein in his foot, the only place left on his body that didn’t have any needles or machines attached to it. “You will be asleep soon Matt, as soon as we can find a vein”.
He was wheeled away with all the machines and a team of transplant doctors, technicians and nurses. I was lead to the waiting room. I was told the operation would be much quicker than the LVAD as it was less complicated. I knew Matt would be fine. He had survived all that had been thrown at him and had gone into theatre chatting and laughing. He was so happy.
William arrived. I told him that the coordinator had told me that Matt was doing well and that the surgeons were waiting for a short while to check his heart was functioning and beating well before they could sew him up.
Matt came round an hour or two quicker than predicted. He asked me to look at his feet as they felt strange. I touched them and said they seemed fine. ‘A bit warm maybe but otherwise ok.” Matt said, “That’s it, they are warm”. He hadn’t felt warm feet like that for such a long time. The following day, day 2 of the transplant, Matthew walked, with assistance as he had many machines still attached. He walked around the ward twice. Quite an achievement, especially considering the evening before his transplant he didn’t have the energy to wave goodbye to me.
Obviously we hope Matthew will have plenty of years with this heart. If and when necessary, we also hope that he and his brother William will be offered the option of further transplants. However, it seemed to me that if you were lucky enough to find a match and receive a first transplant then the chances of that happening a second time could be remote. We have watched many new friends and acquaintances, of all ages, die whilst waiting for a heart on a donor list.
I fully support the Welsh government with their ‘Soft Opt-Out’ position on organ donation. I send everyone, waiting for a transplant, my very best wishes.
Jade had Hypo Plastic Left Heart Syndrome, a rare heart condition where the left side of the heart doesn’t form properly and if not treated with surgery the child would die. Jade’s life hung in the balance, they said if she survived the night that they would operate on her the day after, the next 36 hours was crucial.
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