I was 23 and life was good. It was not long before I was due to give birth. I woke to feel breathless in the night and gasping for air. I opened the window to feel the relief of being able to breathe again. I went to the Doctors about this and saw a Nurse. I was told it was normal to feel like this at the later stage of pregnancy and to invest in a fan.
The time was getting closer. As I visited a sick relative in another town who had sadly passed away, I found myself in hospital. Again, struggling to breathe. I still had one month to go before I was to give birth. The Nurses and Doctors had done all of their vital checks and could see nothing wrong. My baby was on the way. I gave birth by emergency caesarean to a healthy son. The following few days is where my story begins.
You’re supposed to be happy after giving birth, you imagine bringing baby home, resting a few days and then carrying on with life as normal. Life was not destined that way for me. I carried on struggling to breathe, and If I laid down flat I would make this horrible breathing noise. I could hardly walk a few meters, without feeling like I had done a marathon. The Doctors thought I had a blood clot and so I was sent off to be checked. The results came back clear. By day 5 I had gone for a heart scan one of the most undignified things I could have experienced at that time. Later that day, I was surrounded by Doctors and Nurses telling me I was in heart failure.
Heart failure, I questioned them. I was shocked. I had no family history of heart problems. I think you have made a mistake I told them, no they said. Then another Doctor spoke and said I had Dilated Cardiomyopathy. The strain of the pregnancy had caused the heart to enlarge which meant it was not pumping properly and this had caused the heart failure. I felt numb, my mind was all confused. I thought I was going to die. The Doctors were uncertain about the future but knew they had to take action immediately.
My son was taken from me and I was sent to a cardiology ward where I was put on the usual heart failure medication and an IV drip of medication as my body had accumulated a lot of water which was not helping my breathlessness.
This was not the life I expected, at age 23 and only just given birth. A normal life seemed to feel like a million miles away. I returned home with my son at week 3. I never gave my baby his first bath, and struggled to do the ‘normal things’. Gradually the medication made me feel a little better.
I spent the next few years feeling tired on some days but coping and I was living a relatively normal life. Life again was good and I felt blessed to be alive and I even booked to go away on holiday. Life again had other plans; I was not to go on holiday.
By the time my son had reached his 4rd birthday I was feeling breathless again. I knew that feeling as I had experienced it before. I was sent for an emergency scan and there the Doctors discovered I had a blood clot on the heart. I was admitted to hospital and received the treatment I needed to get better. I recovered well. I picked myself back up and carried on being a Mum.
Six months later, I was suffering from breathlessness again. I could not believe that something so soon after could happen again and so I thought I was just unfit so I began to do additional daily exercise. This did not help matters and found myself at the Doctors complaining of breathlessness once more. I was reassured that everything was fine but if it helped I could visit the hospital. I needed to have peace of mind and I went to the local hospital. The Doctors discovered I had a fast heart beat and it needed correcting. I had to have an electric shock to put the heart rhythm back to normal again. Again the Doctors helped me. The next few years, I found the local A&E every 2-3 months my second home. I had a problem with my rhythm and every time I would have an electric shock.
I had community Heart Failure Nurses to come and keep an eye on me which were of a huge support.
On this one occasion, I was sent to another hospital to have an ablation an operation to correct my rhythm problem. Finally I could see some light. I was put to sleep but when I awoke, I had lost my memory, confused as to where I was and discovered I had been on a life support machine fighting for my life. My heart was just too weak to manage the operation. It was not long before my son’s 8th birthday. I have no recollection of this.
My heart failure symptoms got worse. I began to get swollen ankles, slept sitting upright with a mound of pillows, constantly exhausted and vomiting to name only a few symptoms.
I was deteriorating. I knew it.
I was referred to Newcastle Freeman hospital for a heart transplant. The Doctors listed me for an emergency transplant and I was told I was not allowed home and given only weeks left to live. By this point I was talking to people and falling asleep. I was pushed around in a wheelchair and was bedbound. I struggled to get dressed yet I kept my mind as active as I possibly could by studying Law.
Three weeks later, it was time to walk up to the operating theatre and that’s when it really hit me. For those last few seconds I felt really scared.
I had tears rolling down my face and I had to say goodbye. I had to say goodbye to my mum, my sister and my friend. I had to say goodbye to my son and tell him that, no matter what, I would always be with him.
I really wanted him to hold on to my words as I bent down and looked into his weary, big blue eyes and hugged him as tight as I possibly could.
I had to think that, whatever happens, it’s going to be all right. If things don’t go well I knew Josh would be taken care of. My sister, although it would be hard on her, would have cared for him, along with my best friend and my mum.
If things go well I will have a healthy heart. I will be well enough to live a new life. It was a frightening situation to be in. But I had a fighting spirit in me.
Everything went in to slow motion. It felt as if everything was going on around me, but everything slowed right down.
And that was it. The next thing I remember was waking up in intensive care and I couldn’t speak. I could hardly move my hands because I was so weak. I had lost my hearing. I was confused and I felt really rough. Really, really ill.
The doctors weren’t sure I would make it.
I spent six weeks in intensive care, where they put me into a coma. I can only remember one of those weeks.
When I came to, I had a tube in my windpipe to help me breathe. I had pneumonia and I was constantly coughing.
I was scared and confused. I tried to communicate with a voice box. But I was very weak and sore and I just didn’t make sense.
I’d lost my hearing. My kidneys had failed and I was on dialysis. My days consisted of being hoisted in and out of bed.
After six weeks I was moved to a high dependency ward. A week later my hearing started to return, and I was able to speak very quietly.
I managed to get out of bed to the chair and used a Zimmer frame for support. I had lost the use of the muscle in my legs. I was still on dialysis and I was exhausted. It had all taken a toll on me both mentally and physically.
I began to see real improvements and I felt good. I went from strength to strength.
I thought it was never going to end.
But I gradually began to see some improvements. With help, I managed to walk to the shower, then around the ward, pushing a wheelchair for support.
I waddled like a young child learning how to walk. But it was a step in the right direction.
About two and half months after the operation, my kidneys started to improve. When I could climb two flights of stairs I was finally allowed home.
I started cardiac physiotherapy. I began to see real improvements and I felt good. I went from strength to strength.
A year after the operation, I was fundraising in my town with friends, singing. (No, I can’t sing!)
A little while after I was biking 20 miles for the BHF. I thought back to that day when I had been assessed for a heart transplant. I had managed two minutes on a bike, and I thought that was good.
Doing the bike ride was a massive achievement. I had lived with an illness that turned me into an invalid. Riding a bike gave me a sense of freedom that is almost indescribable – and I felt proud.
When I woke up from my heart transplant I never imagined that I would be able to bike 40-miles in a cycle challenge in the Heart of York bike ride for The British Heart Foundation but I did although very challenging it was amazing.
This year I competed in The British Transplant Games for the first time. The purpose of the Games is to raise awareness of the shortage of organ donors and to show how transplantation can not only save lives but transform lives. I competed in swimming, cycling and walking events. I even achieved a silver medal for biking in my age range. I felt humbled to be amongst so many people who had faced such adversity in their life and had come through it fighting.
My son for the first time in his life can see me well and now we can enjoy life.
I can never forget that my whole life was changed because someone signed the organ register. Someone who will never be forgotten transformed my life.
Someone – a stranger- decided that I should live.