You Never Know When….

When I was asked to write this blog, I thought that I was too old to contribute as, although I was born with Aortic Stenosis (with incompetence), in 1971, it didn’t really affect me until I was 24ish! I led a very normal childhood, health wise, and was just told that I couldn’t be a professional athlete – a career I didn’t intend to partake in any way! I pursued my love of the theatre and completed a drama degree in Stage Management at Cardiff in 1993. All was well and, apart from my annual cardiac appointments, life was as good as it could be.

However, I was slowly starting to feel slightly out of breath when I finished university and ‘not quite right’, so I mentioned this during my upcoming cardiac appt. I had a few extra tests including a ‘down the throat’ thingy (I am still not medically fluent yet)! This wasn’t very pleasant at all and this was true to say about the ‘up the leg’ test as well. It quickly became apparent that as well as the aortic stenosis I had a hole in the heart that needed closing as quickly as possible. Understandably, this came as quite a shock especially as I was told that working in the theatre was proving to be too strenuous (I was touring and moving lots of set around.) This was the most upsetting part of the process as I loved my job. However, I enrolled on a teacher training course and throughout all the tests and emotional turmoil of the following 18 months I managed to complete a PGCE. This actually gave me a purpose, as it was very easy to slip in to the mindset of ‘a sick person’ and become all about the heart. I have tried very hard throughout my life not to be ruled by my health and try and do as much as I can to help myself. I still drag myself to the gym every week and try and walk as much as I can rather than drive! Also, jumping ahead a bit here, but before my second heart surgery I was still to be found walking , albeit very slowly, around my local park. I also found it a good form of comparison as I could only manage one lap before the op but I am now storming around for hours at a time!!

When they found the hole, the consultant suggested that I try a pioneering new procedure called ‘Angel Wings’.  It enabled me to have the hole fixed through a tube that went up my leg (technical terms again!) In the tube would be a plaster-like patch that, when the tube was pulled away, would be left to cover the hole. No open heart surgery would be needed…..hooray! So off to Southampton I went as this was the only place that was offering the procedure. However, during the operation, another hole was detected which meant that they couldn’t proceed and I would need to be opened up after all. A bit of bummer if truth be told!

On July 4th 1997 (my personal independence day!) I had my first open heart surgery. I can’t really recall very much – your brain is very good at not allowing you to remember pain but, I know that it was hard. I was the youngest on the ward by about 40 years but was well looked after by my family and medical staff. Coming home was hard as I couldn’t do anything. My mum had to cut up all my food for me as I had no strength in my arms to do it! However, I slowly recovered well and was back to my teaching job by the September.

Fast forward 18 years in which I got married and was able to have two children (I was well monitored throughout both pregnancies and was classed as a ‘high risk’ patient but managed to have both children naturally with the help of fantastic epidurals!) I went into teaching but took time off to look after my children and, when they were both at school, went back into teaching part time. I was still trying to exercise by playing tennis, badminton and walking and felt the fittest I had in a long time. My yearly heart appointments came and went without a fuss apart from 3 years ago when I was told that the aortic valve wasn’t as strong anymore but to carry on as normal. The cardiac appointments became more regular (every 6 months) but I just carried on.

In hindsight, I was probably in denial as I am inherently an optimist! I just thought that the net was getting further away when I played tennis and that I was just getting older!! However, this wasn’t the case. I went for my normal appointment as usual in June 2016 and was told that the valve had continued to decline and that an operation was imminent. I had been playing badminton only two days before but was told to stop any physical exertion and even taking heavy washing out of the machine was forbidden (there is a silver lining to every cloud!) Before I left the hospital that day I had blood tests and a chest x ray and everything seemed to be happening far too quickly. However, this time I had a team of brilliant cardiac nurses to help me along every step of the way. Without them I am not sure how I would have coped especially as I had 4 cancellations (I won’t bore you with the details but I was mentally and physically traumatised after each cancellation).

Due to the fact that I was fit and quite slim, after a lot of tests, it was suggested that I be put forward for the Ross Procedure. This entails (again in not technical terms!) totally taking out my aortic valve and replacing it with my own pulmonary valve. I would then have a donor replacement pulmonary valve which is easier to replace in later years than the aortic-hopefully, by going up the leg rather than being opened up for the third time. If this operation was successful it would mean that, apart from the initial six months after the operation, I wouldn’t need to be on any drugs, especially warfarin. As this is usually performed on children and a big operation, I was sent to Bristol again. Eventually, on Feb 9th 2017 the operation took place. I was so relieved to be in the hospital and actually having the procedure it hadn’t really dawned on me how hard the recuperation was going to be.

The whole process was brutal.

It is very hard for me to write about the recovery process and hospital stay as it was so tough. However, I cannot fault the NHS and all the staff that I met both in Cardiff and Bristol. I was so well looked after and nothing was a problem. I just wished I didn’t have to go through with it. There were a few ‘why me?’ moments but I soon realised that these thoughts aren’t helpful to anyone.

One thing that I feel really strongly about after the operation and something that I am trying hard to advocate is that heart patients need to be seen in a holistic way. The mental effects after a traumatic operation need to be addressed through the cardiac department and not through mental health. If I had a councillor who understood where I was coming from, someone who understood the medical terms and what I had been through without me having to explain would have been fantastic. I probably wouldn’t have needed much time but it would have given me the confidence that I desperately lacked to carry on with life a lot quicker than I did. I am very lucky in that I have a very loving husband, children, mum and sisters who I couldn’t have got through the process without. I have a very strong network of friends who cooked, cleaned and took the children off our hands during my recovery which was invaluable. However, as much as I talked to them not one of them could empathasize with what I had been through. Sympathy was given but it wasn’t necessarily what I needed and I hated the slight head tilt of pity that some people give! I also got bored of myself talking about the whole process and just wanted to continue to try and lead a ‘normal’ life again.

The brilliant cardiac nurses in Cardiff suggested that I try cardiac rehab which was great for regaining my confidence in my body again and I loved meeting up with the ‘lads’ on the course too.  I was the only female patient present during the whole course and the only patient that had had an operation – the other gentlemen had mostly had heart attacks. But it was great to have other people to bond with and talk to.

This leads me on to where I am now. My relationship with the brilliant cardiac nurses has flourished and I have been asked to do videos of my journey for doctors and nurses, talk to 3rd year nurses at the Heath hospital, write letters of recommendation to the Welsh Government and now to be a Patient Representative of the Adult Congenital Heart Disease Network. I have gladly done all of these as it’s fantastic to be able to give back all the support that I received. I also find it quite cathartic to talk about what I went through as the passage of time has made it easier. Sometimes though I struggle as I want to move on with my life and not look back but the one bad thing about being born with a heart condition is that it is lifelong! I will always be seen at the cardiac department and will have to have other procedures in the near future.

I have adapted my working life and become a freelance stage manager which means I can choose to take time off if I am struggling. I also now lecture at the drama college I graduated from, which is fantastic-even if it does make me feel old!!

I cannot thank enough the people who have supported me along the way and it is amazing to be allowed to share my story. Thank you.

Frankie