Val Monk has decided to cycle 1000 miles to work to give back.
Because I can.
I am cycling 1000 miles to work to raise money for HeartBeatVietnam because I’ve had 4 sets of open heart surgery, I live an amazingly blessed life, I am a walking miracle of the modern medical age that many in the developing world, the majority of people, don’t have access to. All my surgery was completed for free in the UK, my family never had to worry about a bill, consider making a decision based on finance or worry about anything other than how the family and I were coping. I genuinely cannot understand how families cope with all the anguish of open heart surgery if they also have to worry about paying for it and know that they can’t afford to start or complete treatment. As I said, I am very lucky. So far I have had:
- Aortic coarctation fix at 22 months
- Aoritc valve widening at 12 yrs.
- Aortic valve replacement at 16 years.
- Aortic value replacement with pulmonary valve and pulmonary replacement with homograph at 27 years (a Ross procedure).
- I’m now 37 and fit and well, but monitored as I will more than likely need at least one more op. In fact I have a MRI scan in a few weeks on my coronary arteries and aortic root as well as the two replaced valves so they can see the impact that 4 ops have had. Fingers crossed!
- I have a more personal story about my battle with heart disease online if you want to understand a bit more about what I’ve been through.
When I was 22 months I had a coarcation in my aorta fixed. It was 1976 (yes, I’m 37!) and I went into hospital with blue legs and came out pink, I also went in as a normal crying baby and came out silent, I had learned, during the 20 hours per day without visiting hours, that crying didn’t really make a difference. I had learned to cope. I hard lesson for a young child and not one that I remember but my Mum says that that change was distinct. It was a change that helped me for the next 14 years, learning to be self reliant, that even with all the amazing support from my family at some point this was my journey and my story.
At 12 I had a balloonoplasty to try to open my aorta but it didn’t work. I was the 4th person in the UK to have it and they tried for 2 hours to get the right result, playing me Disney music and trying not to look stressed. When I got back to the ward my wound split and blood hit the ceiling, a nurse dived through the curtains and pressed her full weight on my groin for an hour. Mum and I spent the next 2 days waiting for it to happen again but it didn’t and we moved on to the next fix, my second open heart surgery.
I’ve never been a small child or been a poor eater, I’m 5’9” tall now and at the time the hospital children’s portion was a just starter, a nurse caught me having fish fingers in the canteen after tea time and told me off but mum wanted to spoil me and nerves were making my tummy rumble. I remember throwing a midnight feast in the ward the night before my op, my new ward friends had saved chocolates, coke and crisps and we hid and ate and giggled as 12 year olds do. I then spent the rest of the night wondering if I’d die in surgery because I had coke in my tummy and a nil-by-mouth sign above my head. However I didn’t die, I had a wonderful surgical team and the operation was a success. My siblings were at home with my grandparents, worried and being diverted – if one can be. They visited a few days later and my sister, terrified of hospitals, had to sit on the end of my bed because her legs had given way! They brought home made cards and presents, and best of all, hugs.
That operation was supposed to last for years but it lasted for four so at 16 I had to go back for another operation, this time to replace my aortic value with a prosthetic one. This time I was an on adult thoracic ward as I had just turned 16, it was impersonal, smelt, everyone was ancient and they all seemed to have bad coughs! A man in the bed opposite me snored so badly I couldn’t sleep and the nurses were all a bit more authoritative. I don’t remember going down the surgery, apparently my parents were with me that morning and came down with me. I remember the lights on the ceiling but nothing of the jokes that they told me, the hugs I received or the presents. I’m rather pleased that I don’t remember it! I am told that the operation didn’t go well, after 5 hours the surgeon came out, told my parents I was going into ICU but he was not happy, he walked off smoking down the corridor with my blood on his shoes. Within minutes a trolley zoomed past my parents and I was back in theatre due to a big bleed, the next time they saw him he was relaxed, clean and assured them that all was well. The surgical team saved my life twice on one day, I had pints and pints of blood and amazing care. In ICU I awoke in a white room with a nurse dressed in white, I thought she was St. Peter! Then I realised I must be hallucinating as bits of her were dripping off into a puddle of white cotton! When I awoke again I was fine but my Dad’s hair had gone white overnight and my Mum, a nurse by trade, was white as a sheet. I had certainly put them through it! I can’t imagine the anguish that my parents went through that day, they were divorced at the time but we shared this journey as a team, with me at the centre.
The prosthetic valve meant that I needed to be on Warfarin, a blood thinner so I 1) could not drink 2) could not have children and 3) could not do dangerous things, oh, and my hair might fall out. At 16 that’s a lot to take in! However I had a brilliant University life, kept my blood well managed and it didn’t stop me doing anything apart from suffering from handovers. Not a big sacrifice! I kept all my hair from my hairbrush for years until I found out that if it was going to fall out it would have done so in the first week!
I got a graduate job in a large company, started an interesting IT career, bought a house and generally loved life. At 24 I realised that work was taking over my life before it had started so on the day I got a 19% pay rise I handed in my notice and planned a world trip. I didn’t get past South East Asia and Australia but had a fantastic 18 months and came home in time to help my sister with her 3rd baby. I climbed Kota Kinabalu and upon reaching the top declared myself fit and healthy, a little too soon it turned out.
A few months later in Australia I found myself getting tired and thought it was probably because I was spending a lot of time in and around my van. When I got home I talked to my consultant and asked for a few tests as I wanted to get fit and run the Lake Vyrnwy half marathon, a beautiful 13 mile jog around a lake and somewhat of a family tradition. I had a echo and he told me to take my trainers off, there would be no exercise test, no jogging and I needed an MRI scan. The MRI scan was, I admit, terrifying, being tied to a bed in a coffin shaped hole to find out if a 4th set of open heart surgery is possible was something I don’t want to repeat – although realistically I will. It was an amazing scan though, I ended up seeing a 4D colour scan of my beating heart and found out how much internal and external fat I have – an added bonus for a young woman!
This was to be my first operation as an adult and as such I wanted to know everything. I investigated new technologies on Medline, recent medical papers, studies ongoing in de-cellularised pig valves and much more. I discussed this with my surgeon and we came to the conclusion that we would go for a relatively safe operation, well, one with a known outcome if the operation worked, so that I would reduce the risk of having to have another soon afterwards. We talked a lot about statistic and in the end he said that it was really a 1 or a 0 and he hadn’t killed anyone yet. I wasn’t planning on being the first! This operation would involve putting my pulmonary valve in the aortic valve position and a donated valve in that pulmonary position. In preparation I needed another angiogram, my 4th or 5th I think, and I remember signing the consent form. It gave me a taste of what I would be signing a few months later. I admit that I was terrified, as an adult I fully understood the risks and having the operation was my decision, I could not have it and definitely live for a year or so, or have it and potentially live for much longer. Work signed me off sick, I was probably depressed, certainly scared, didn’t sleep much and could not concentrate for any length of time. My coping mechanisms that worked so well when I was a child had broken and I didn’t know how I would cope. I had not banked upon my Grandfather, Gank, intervening. As a priest he took my into an empty Church and anointed me with Holy Oil. I let him do it because I thought it would make him feel better about what was happening, actually it changed my outlook entirely. As I left the Church I knew that whatever happened all would be OK, my family would be OK, I would be OK whether I survived or not and I had a feeling of peace within that I knew I could draw from. It was a gift that I could never repay and allowed me, 2 weeks later, to walk into the hospital and sign the consent for that I knew might kill me. So I did. I walked in and got on with it. I would not lie down to go to theatre as I didn’t want to see the lights go past, but apart from that I did everything they needed me to do. When I woke up in ICU and my family came in they had to be rushed out because my blood pressure rose so much, just seeing their relieved faces made me the happiest person alive. Alive. Phew!
So that’s me, 10 years later it’s still 4 down and I don’t know how many to go. I am fit an well, I live an active and blessed life, I have an amazing family that have grown and supported each other through our journey with coronary heart disease. My partner has taken the baton, accompanies me on all appointments and has learned to recognise when I am “heart tired” and sends me to bed to rest. I am still competitive, still push myself and still want to do justice to the person who gave me their valve, to the surgeons who gave their expertise, the nurses who gave their kindness and skill, the donors who gave buckets of blood and the system that means that my family never had to ask how much it all cost.
So that’s why I am cycling 1000 miles to work.
Because I can.
Because they need us to help.
Because no-one in this day and age should go without life saving surgery due to family circumstance.
I have already paid for three operations, Kim, Trung and Cuong are all alive because of surgery that was funded by my sponsors. It was also matched by local companies in Vietnam – a BOGOF on heart surgery, who would imagine it! Little Tuong is the next one waiting for me to raise money – he is 1 and very poorly.
If you would like to help please visit my website www.1000miles2work.org and if you would like to cycle your own 1000 miles (on your own or with a friend or two) just get in touch and I can put you on my website too The more help we can give the more children we save. Its that simple.
So that’s why I am cycling 1000 miles to work.
Because I can.
Wrote by Val Monk