We invited all the members of each of the KiP projects to blog about their experiences. Congratulations to Chris for being the first!
Taking it to heart : my account of diagnosing and living with Heart Failure
by Christopher Farrell
I suppose no one ever expects to be living with heart failure but at the age of 33 I guarantee you I never imagined I would.
Heart failure – BOOM – there it is, like the big C or Dementia or any life altering condition, the day they first say that word to you it’s like being punched in the gut followed by a dream-like silence as the words and nothing else sink in – HEART and FAILURE.
For me, I first heard the words sitting on a hospital bed just over a year ago. For about a further year previous to that day I had watched my health decline rapidly. I went from an outgoing 30yr old performing and working in the theatre arts industry, confident and full of life to ending up having literally not being able to leave my house for over 6 months, unable to walk much further than a few feet. My legs were weeping fluid so badly I had 5 inch sores constantly flowing liquid on the fronts and back of each leg, I became unable to eat much as every time I did I regurgitated it, yet found my waist and weight was getting larger each day to the point where on diagnosis I was 12 inches larger in trouser than I had been the same date a year earlier.
Throughout the day and night I continuously coughed up a mix of phlegm and blood, and found myself constantly exhausted. Instead of sleeping in a bed with my partner I had spent 4 months sleeping sat up in a chair slumped onto folded arms on my desk. This was the only way to get any rest due to the fact I choked on fluid anytime I lay on my side or back so as you can imagine I had grown depressed and unpleasant. I am not too ashamed to admit now that towards the end of summer 2013 just before being admitted I was having very dark thoughts and had became so low that thoughts of suicide not only crossed my mind but my lips as I had started to discuss it with my partner, who as you can imagine felt as utterly helpless as I, yet grew even more frightened and frustrated at how few answers we were receiving when ever we talked to medical professionals.
On attending GPs I had been advised it was just a virus, it was the cold, it was my weight –I should state here I have always been morbidly obese, however, in the year prior to this I had worked 8 show s a week as a performer, regularly walked nae ran; repeatedly up and down various hundreds of theatre stairs as anyone who works in the theatre will tell you is part of the job and even cycled round Millport with ease. (Overweight yes, lazy or lethargic no!)
I had contracted Pneumonia the Christmas of 2012 so it was put down to that. After months of antibiotics but only worsening conditions I was sent to hospital to meet with a lung specialist who told me he suspected I may have lung cancer (which as you can imagine as someone who has never smoked a day in their life was a bit of a shock). He booked me in for several tests and treatments. While getting my chest X-rayed a nurse noticed my lack of ability to walk, leg sores and constant fluid coughing and insisted I go there and then for an echo… that afternoon after receiving it I was told to walk round to ward 4 where I was sat on a bed and told that I was very ill, that I was being admitted there and then and was looking at a long stay in hospital if I was lucky enough to make it past the weekend. That I was there and then suffering from severe Heart Failure – BOOM!
My blood pressure, which had never been taken before at any of my GP or consultant meetings, was ridiculously high. One nurse described it as not dangerously high but deathly…. A ward doctor came into to take bloods and advised me I should think about getting my affairs in order…. All this to someone suffering from HBP who thought he was getting tested for lung cancer!! I was made to believe that weekend that my best diagnosis (if I made the week) was a few years. Lack of answers or straight talk that day terrified me when I was spoke to the staff. The language they used confused and scared me. I had internet access in my bed – the information I accessed online scared and confused me even more… those first 3 days where perhaps the most frightening and confusing days I have ever experienced.
I decided in that hospital bed, however, that I was not going to lie down to this condition. I monitored my fluid intake (which I was not advised by the medical staff about but had read helped online) taking less than even recommended. I cut all Salt out of my diet. (Again information I found myself online and I still to this day find it baffling that in a heart ward I was served salt sachets with each meal.)
I used music and meditation to relax myself to help my BP lower and made sure to start going small walks around the hospital to not only help build my strength but to escape the 4 walls and help elevate my mood. It’s amazing how much sitting in the hospital foyer watching the world go by passes the time so much quicker than lying in that bed watching the seconds tick.
Any contraband that visitors brought me was shared out with them or sent to other wards and I advised all on their visits that bringing chocolate or treats high in salt was appreciated but not allowed.
Luckily I responded to treatments, my BP returned to an acceptable level, I peed out 3 stone of fluid, my sores healed and almost 4 weeks later I was released, still unaware of what was happening but with a plan to go to the Jubilee heart hospital for further testing and a date to start seeing my district heart nurse, Louise.
Since getting out I am happy to report I am responding great, I have seen my heart remodel some and my condition return to a manageable level. My health is not what it was but it’s much better – and is getting stronger every week.
I really cannot fault the Heart service nurses or praise mine enough. She was the first person to speak to me in normal terms, explain exactly what the condition meant, explain what each of the medicines I needed to take actually do and why they are important. But most importantly she explained that the information out there is not only often wrong, or outdated but was not written for me – And like any disease everyone is different, what works for one may not for another and retrospectively what doesn’t work for one doesn’t mean it won’t for me. It’s important to find someone like this, someone who helps clear the fog so you can see the road ahead clearer.
I cannot explain how important that was – Hope – a positive glimmer in another wise dark experience. That itself helped give me the push I needed to tackle each day as it comes, to slowly accept that its okay to rest when I need it, to understand that I cannot run round the park, but then I never could… but I can walk round (even power walk some days) and just find places that have regular spots to stop and sit for a minute. Push your self but don’t overdo it. You’re working with your heart not against it.
She also convinced me to talk openly with my partner about it, which helped hugely as I had been so wrapped up in my diagnosis that I had not stopped to think how confused and scared he was. He has been a huge support and I am lucky to have that and glad I have let not just him but everyone in on my condition because its a harder road to travel alone, not impossible, but much harder.
For me I have found all these things have played a part in my journey – I’m still not happy to have this condition, I never will be, but I now know it’s not a death sentence, it doesn’t mean locking myself in a bed afraid to move either and it doesn’t mean losing everything I love to do.
It’s been just over a year since I was officially released from hospital and diagnosed with Heart Failure. One rollercoaster year, filled with every emotion a heart can possibly produce. From despair and worry of a condition that I knew nothing about but now faced living with, to all consuming fear brought on from an overload of negative, outdated and too readily available information. Even anger and frustration at those misdiagnosis, prejudices and stigmas from Medical professionals and strangers at a condition which leaves us feeling so useless at times, yet letting the outside world see no real visible conditions to allow for understanding.
To finally find hope and happiness at the understanding and realisation that being diagnosed with heart failure is not the no hope situation so much of the information makes us believe it is. Certainly changes need to be made, and change can often be frightening, however, change can also lead to new ways of tackling things. For me this first year of diagnosis has been a fight, a fight not to fall in to old habits of eating, lazing and giving up. It has been about fighting the dark cloud that descends upon any of us when dealt a card from life that takes away plans or control. But most importantly for me it’s been about fighting the condition. Not letting Heart Failure define me. Not letting Heart Failure take away every enjoyment in my life. I don’t see the frustration in the fact I no longer drink Alcohol, I see the fun in how much money not drinking saves me, and the pleasure the extra money brings me by allowing me to do things and go places I didn’t before. I don’t focus on the annoyance of not being able to buy breads and sweet things from supermarkets because they are so high in salt, I revel in my new found enjoyment of learning to bake (and showing off my baking) with Nosaltflour and seeing how knowing what is in my foods, and monitoring what I eat has helped my condition improve.
Don’t get me wrong it’s tough, some days really tough and I am at a very early stage in a condition which will be with me all my life, but in an age where we are taught to fight cancer, understand depression, see the invisible illnesses I sure as heck am not going to lie down and give in to this condition (well except for when I’m resting or helping my fluids drain but you know what I mean).
My heart’s failing – All that really just means it needs a little help, so that’s what I’ll give it. Help from medicine, GOOD and ACURATE information, exercise, resting when needed, the right foods. Sure it means I’ll always have a litre bottle of water in my fridge and no salt on my table – but if that also means I’m here to keep fighting then that’s all that matters and if other people are not willing to understand my struggle – they can do what they like and I’ll carry on regardless … but I wont take it to heart!