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A Journey to the Heart

A Journey to the Heart

Name withheld at author's request.

I was two when I was diagnosed with aortic stenosis, a narrowing of the aortic valve. 

A few years ago I started to become very tired and breathless.  My legs, ankles and hands began swelling. The symptoms began gradually and, being a busy working mum, I became used to them quite quickly and wasn’t particularly alarmed or aware when they occurred. 

At my annual review, I told the doctor about my symptoms. I was sent for an exercise tolerance test. Turning up in my expensive trainers looking like Zola Budd minus the headband, everything looked okay but when I got home I fainted. I assumed it was tiredness, so I ignored it. Later that week I collapsed again. The next day I called the adult congenital team and  spoke to Jim Mearns, clinical nurse specialist, who arranged for me to come to the clinic. I hadn’t told anyone about my appointment except my husband, and soon the day arrived. Following an echo, ECG and what seemed a life sentence MRI, with Lionel Ritchie either “dancing on the ceiling” or “doing it to me one more time”, I met the most inspirational doctor I have ever had the pleasure to meet.

I was critically ill, being admitted that day. Surgery was scheduled for an aortic valve replacement.

A few days later, I met my surgeon, who I will forever know as The Genius I was surprised at his calmness. I asked him one question that day: I asked him if he was good. He didn’t reply, but I knew he was. I thought about giving him a wink to let him know that I also had an insight into this surgery, because I was a weekly follower of Holby City, where the patients are up and running the next day. I felt happy, hopeful that this would improve my quality of life. Late that afternoon I met the anaesthetist. People in this admirable profession do a very important job, making sure patients don’t feel anything. My anaesthetist was a true gentleman, possessing a calmness that only brought me more hope. That night nurse Mark Dyer, spoke to me about the Intensive Care stay. I will always appreciate those words, and amazingly, the following day I was happy going into theatre. I had no fear, just hope.

The operation was a long one and more complicated than anticipated. When I awoke I couldn’t quite understand what was going on but there seemed to be an angel with me that night. I literally thought she was an angel because with no contact lenses or glasses on and with the drugs the anaesthetist gave me I didn’t know where I was. My husband kept notes for me on my goings on in ICU. I would tap my heart and he would tell me how the surgery went.

The recovery was long. I kept a book under my pillow for names of the staff that took a little time to help me so I could thank them. Looking back, even the quality of my writing showed me how sick I was.

Nine months later, during an outpatients appointment, it was confirmed that there was a leak in my mitral valve. I looked at my husband with his head in his hands as my inspirational consultant told me there was another murmur.  We were in disbelief.  That night not a word was said except to tell our parents. I returned to work later that week, no one aware of what was about to happen again. The call came on the Friday from the hospital, quicker than anticipated. Open heart surgery was scheduled for Tuesday to repair the mitral valve.

After eight weeks of work I had to tell everyone that my return would be shorter than anticipated. Everyone was shocked, their faces showing their utter disbelief. My daughter, now old enough to really understand, was devastated. 

After admission, The Genius came to see me.  He was bringing in another surgeon, Mr Kenneth MacArthur. To this day I have never met Mr MacArthur, neither when vertical or awake, but I will always be eternally thankful to him. Again the anaesthetist came, talking gently and providing a sense of calm, and my inspirational consultant sat just chatting when she should have been at home with her own family. 

I don’t know what is for the best;  going to theatre knowing what is about to happen, or not knowing. This time, I set myself goals. I tapped my heart for my husband to tell me the news and I remember him saying those words:  another metal valve!  I could feel the tears trickle down my cheek.  Again, a diary of who helped me and what happened on the days I missed was kept. Names, times, how I snored far too loudly. It was another long recovery, with infection, fluid and a CT scan confirming another trip to theatre, all the time my wonderful consultant trying to soften the blow.  Amazingly, a few days later it all seemed to come together. Day by day I felt stronger, until it was time to recuperate at home.

My mitral valve has a small leak. I think it’s a bit of an attention seeker, and if I could talk to it and if it could listen, I would say, “please give me a break. It’s okay to leak as long as it’s a small one.  You can click loud and fast if you like but don’t give up because I love you as much as I love my aortic valve. Okay, I didn’t embrace you like I did the first one and I’m sorry for that, but together we can have a good life and go on a brand new journey. You’re in my heart and that’s a very special place to be.”

Who am I? I am an adult congenital heart patient and I hope that I have inspired even one person to have hope and faith in a specialised service that will make your journey a little easier, the fear more bearable, and provide you with an understanding that you will embrace, even when it is a little tougher than expected. 

I would like to extend special thanks to The Golden Jubilee National Hospital Clydebank, the home of the genius Mr Andrew McLean, wonderful surgeons Mr MacArthur and Dr Bhawal, the inspirational consultant Dr Niki Walker and the gentleman anaesthetist Dr Stephen Hickey. Thanks too to the team including Dr Hamish Walker, Dr Richard Dobson and clinical nurse specialist Jim Mearns, nurses Sandra Jansz and Mark Dyer, and to one person whom I shall forever refer to as the Angel of ICU – because you took care of me that night but I never learned of your name. Finally, thank you to the patients, whose laughter and tears I shall always treasure as we all continue on our journey.

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