Hello, Heart Failure?
April 2023
So here I was. Back at home for the final push of revision until I get the long awaiting privilege of shaking hands with someone important, throwing a black cap in the air and failing to catch it (well worth the four years).
But as much as I wanted to graduate, God had another plan for me.
Foreword
This is the first blog post of the “Patient Diary” series, where I give you a true and honest (sometimes brutally honest) glimpse of patient life going from heart failure to heart transplant. I hope this helps anyone on a similar journey, but as always, I like to remind everyone that I am just one single person, with one individual experience of heart failure, so if you have any particular concerns, always speak to a healthcare professional for the best guidance. X
Hello, Heart Failure
It all began at the start of April, when I was laa-dee-daa-ing back home from uni.
In my head, I was taking a train back home, where I was going to be in revision mode for the next couple of weeks until my final year exams. However, in the lens of life, I was to have a full-blown heart failure episode, accompanied by all the glorious symptoms, shown in the image above.
Now, in the 7 years since my diagnosis of dilated cardiomyopathy (a big heart, awww), I had never experienced a proper heart failure episode. So naturally, I didn’t know what to expect when symptoms knocked on my door, nor did I realise how rapidly they could progress.
The symptoms
It started off, with weight gain, followed by feelings of nausea, loss of appetite, diarrhoea and vomiting. In the end, there was extreme breathlessness and fatigue. For me, this all came crashing down in the space of 1 – 2 weeks, and before I knew it, I was in A&E twice, and admitted into the wards in Leeds General Infirmary where the dream team nursed me back to health.
REMINDER: Different people may show different heart failure symptoms. The list below highlights MY heart failure symptoms - you may not have these - but hopefully this gives a little glimpse of how heart failure may present itself, but by no means is it a comprehensive list. Always speak to your Heart Failure specialist team for the best advice and to address all of your concerns.
Loss of appetite
Loss of appetite may be a sign of worsening heart failure. Within the space of just 10 days, my appetite went from a plate full of food, to a single bite of toast. The sight, smell and thought of food made me feel nauseous and gag. Eventually, this turned into a daily and endless cycle of vomiting, and the inability to keep any food down my gob.
Pale, grey, or blue fingers
When a heart fails to pump effectively around the body, it can lead to the skin changing colour and may appear pale, grey or blue at the extremities, like in the hands or feet. This poor circulation can often be accompanied by feelings of coldness. After taking the photo below, I immediately wrapped myself in the thickest blanket in the house, and still felt like I was in the Arctic.
No, this wasn’t taken from a body in the morgue, although, I wouldn’t have disagreed, had you thought that. My fingertips were pale white and my hands were blue (camera is not camera-ing).
Oedema
Another symptom of heart failure can be the build-up of fluid around the body – often in the legs and feet – and the fancy medical word for this is “oedema” (edema). When the heart cannot pump effectively, it can create an increased pressure gradient in smaller blood vessels, known as capillaries. Capillaries are the vessels that hug our tissues and organs, but when these capillaries have an increased pressure, this can force fluid out of the vessels which then surrounds our tissues. (Welcome to A-Level Biology)
The video below demonstrates very nicely fluid that has leaked into the tissues of my feet. I love being my own little science experiment.
This specific type of oedema is known as “pitting” oedema. And just as the word suggests, a bit of pressure on the fluid-filled region can leave a little indent or “pit”. I think I remember making an artwork of indents in the shape of a smiley face once. I may or may not have been traumatised since that day.
Weight gain
Oedema and weight gain usually go hand-in-hand. Excess fluid builds up, which the heart cannot effectively remove, and as a result, you gain weight. Simplez.
Note: It’s important to mention that oedema is a build up of fluid, not fat. However, if someone mentions one day that, “oh, you look a bit fat”, don’t take this to heart, as they may just have flagged up a sign of worsening heart failure.
Keeping a weight scale at home is handy so that you can record any drastic increases in your weight. But as a general rule of thumb, if your weight increases by 4lb (2kg) over 3 days, it may be worth flagging up to your GP or Heart Failure Specialist Nurse (My Marvellous Symptom Checker, Pumping Marvellous).
Designed by Freepik
Within a week of returning home from uni, I noticed that my face, hands, belly and legs were visibly larger. But like all the other heart failure symptoms, I ignored the changes my body was so clearly displaying, thinking it was caused by a lack of exercise or stress about the upcoming exams, and simply thought 'I need to exercise more'.
Then one day, mid-April, I did exactly that, and went for a walk. As I stepped outside my house, it simply took me 10 steps to realise I was actively gasping for air. I felt as if I had just ran a marathon. I was completely and utterly out of breath.
Shortness of breath
Most people would save the best to the last. But I'm playing the Uno reverse card, and will end on, what was, for me, the most dreaded, the most terrifying heart failure symptom. The shortness of breath.
Although breathlessness was no unfamiliar territory for me and my big heart, this was a different species of breathlessness. Why? Because for the past several years living with heart disease, I would get breathless doing things that require energy - like running to catch a bus and missing it. (Darn you Thames Travel, don't pretend like you didn't see me)
But this new breathlessness was different - because, not only was I breathless whilst active, I was also getting breathless at rest.
Photo by Nathan Dumlao on Unsplash
I first noticed this difference when I was reading my book in bed, completely stationary, and sat upright. After a few moments, I realised I had to breathe in and out more forcefully as I felt as though my lungs weren't properly "filling up" and getting sufficient oxygen. Big. Red. Flag.
In the next few days, when I returned from that dreaded walk that felt like a mini marathon, I rested on the sofa, absolutely shattered. As my mum worriedly walked into the room and saw me in all my exhaustion, I looked her in the eye and said, "mama, no matter what I say, and no matter how tired I am, you need to make sure I go for a walk every single day, because this is really worrying me - I'm getting breathless doing nothing, I'm getting fat, and I am so unfit"
I wish someone could have stopped me right there and said, "Look, honey, these walks ain't gonna do nothing. You're experiencing heart failure, your heart condition is deteriorating, and your organs are suffering the consequences of your blatant negligence. So, for the love of God, seek help."
As the breathlessness became unbearable, and I struggled to breathe at night, despite the mountain of pillows keeping me upright at 90°, I finally said yes to A&E number one, then to A&E number two. (P.S. the A&E visits require a separate post of their own, comedy at its finest, stay tuned)
Eventually, I was kept under the watchful eye of the Leeds Dream Team at the LGI for over a week as they nursed me back to health, and explained to me that indeed I had an episode of acute heart failure with all the glorious symptoms above and that we would need to step up the treatment options with a little more haste, because my heart function was further deteriorating. (I guess that cap throw would have to wait)
And the story continues...
Final remarks
And that, ladies and gentlemen, is the story of me and my heart failure. Take home message from me... don't be me.
=== Learn the typical heart failure symptoms === Listen to your body=== Ask for help I hope this has helped anyone in identifying some common symptoms of heart failure, but as always, there are a ton of online resources and support groups for those who are worried about their symptoms, and would like a friendly listening buddy. I have put together a handy list of contacts and platforms you can reach out to, should you need to, found on the resources tab. My DMs are always open for anyone who wants to contact me through my socials (top) or directly through the submission box at the end.
Thank you for reading! Follow my Heart-to-Heart Facebook page to keep up-to-date about future Patient Diary posts to come!
Keep smiling, take each day one step at a time, keep going, and only stop to appreciate the views Xxx
[Captured by moi, Attenborough Nature Reserve, Nottingham]
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