A&E trips: The Good, The Bad, and...
April 2023
I’d like to start this blog post by formally apologising to the Hospital Gardeners – these are the people who make hospitals look pretty and welcoming, only for patients like me, to come along and puke acid and other glorious stomach contents onto their floral efforts.
In just 2 days, I had visited 2 different hospital A&Es, and both of them were marked by the remnants of my stomach. Woops.
This blog post follows on from my previous Patient Diary entry, ‘Hello, Heart Failure’ and here, we will journey through a woeful misdiagnosis at A&E #1 (who-shall-not-be-named), and eventually receiving the proper diagnosis of "heart failure" at A&E #2, where I was told my heart function was 25%.
Revision, Ramadan, and Ready-Or-Not-Here-I(heart failure)-Come
By the end of March 2023, I had come back home from University in the hope that I was going to revise hard for my final year exams. It also happened to be Ramadan – a holy month whereby Muslims around the world fast from dawn to dusk, if they are healthy to do so, engage in lots of worship to Allah (God) and focus on maintaining a good character.
My mum and I were alone at home, as my dad had to go out of country. As soon as my dad got on the plane to leave, its as if my heart said “mwaa ha ha haaa, what a perfect time to fail”, and there began the daily and endless cycle of vomiting, worsening shortness of breath, and all the other heart failure symptoms as shown below.
See 'Hello, Heart Failure' for the full, juicy details of all the heart failure shenanigans
Bon appétit? Non, non appétit.
Within just 2 weeks, my health was deteriorating rapidly. I found myself getting more and more fatigued, unable to keep food down, vomiting non-stop, and eventually struggling to breathe at rest.
The guilt started to sink in. My mama, whilst fasting the long days of Ramadan, was giving her all and everything, to care for me, trying to make me all sorts of light meals – absolutely anything that I wouldn’t instantly vomit out.
My plan was to revise at home, and spend the last few weeks of Ramadan with my mama, helping her out with making her food for iftar – the breaking of fast at dusk – and just helping around the house so she could rest.
Instead, this was me 99.9% of the time...
So much for a “helping hand”
Despite the uncertainty, not once did my mama complain about the situation. Not once.
As God tested her through me, she demonstrated patience and resilience unlike anything I have ever witnessed.
She would be the one to come rushing down the stairs to pull my hair back when I would be vomiting in the toilet.
She would be the one to finish my unfinished meals at the time of iftar (breaking of fast in the evening).
And she would ultimately be the one to inform my dad, about this new and worrying development in my symptoms.
Side note: Always, ALWAYS, be grateful for your family. Go give your loved ones the biggest, most fattest hug right this very second. Thank me a few broken ribs later. 😊
"Go to A&E. Immediately"
18th April 2023, 23:45, approaching midnight. I was in the kitchen, with my hands rested on the table to keep my balance. I was absolutely breathless. My mum walked in on me taking huge big breaths of air. I felt like I needed some kind of inhaler as my lungs refused to fill up sufficiently with oxygen. Breathing was no longer an unconscious thing at this point – it had my full focus, and I would be consciously trying to breathe in and out, in and out, in and out.
My mum was worried sick. She asked if we should call the ambulance. I said “nO, wE’ll jUsT wOrRy tHe nEiGhBouRs”.
*sigh*It’s cute that I thought of my neighbours before my dying heart. It really is. But, if there’s anything I’ve learnt from this experience, it’s that help is never given to you on a silver platter – you have to go out and ask for it.
It's our responsibility to know exactly when we should be calling 999 and asking for an ambulance, or making our way to A&E. Lucky for you, I've made a cheeky little guide below.
I know now, that I should have listened to my mama, and had her call the ambulance because of my intense shortness of breath and chest pains. (I can still hear her saying "I told you so")
Since I was dismissive about calling for an ambulance, my mum decided to tell my dad. I felt guilty enough that my mum had to see all of my weird symptoms unfold, it felt even worse worrying my dad who wasn’t even in the country, and had no idea that my health was very much declining.
After seeing my fluid-filled belly through a video call, and telling him of all the symptoms I had for the past few days, he said “go to A&E immediately”. Not in the morning. Not in a couple of hours. NOW.
A&E #1: The Circus We Never Paid To See
Around 1:00am, my mum and I arrived at our nearest A&E, a half an hour drive away. This A&E experience could be compared to a circus show - it was so bad, it was funny.
My mum entered before me, as I had to go at snail pace because of the breathlessness and nausea. Halfway down the pavement to the main entrance to A&E, I felt the vomit readying itself. So I arched over the pretty flowers, and 10 seconds later...
(minus the nice, kind lady to hold my hair back)
My sincere apologies to the Hospital Gardeners.
My first impressions
As I walked into the A&E department, there were about 30 people staring at me. It was also pin-drop silent and so I assumed they all heard my little vomit scene outside. (How emm-ber-arsing)
From the moment I entered, I kept asking myself if I was really in the Accident & Emergency department.
Where are all the sick patients?
Why is no-one collapsed on the floor?
Why aren't the staff running around frantically screaming at the patients and other healthcare staff?
These are just a few of the thoughts I had - the rest can remain in my head. All in all, I felt like the only properly "ill" patient, clutching onto my sick bowl for dear life.
Triage time
A few hours later, and it was my turn to see the triage nurses.
This was it, I thought. My moment to shine. I had a good couple of hours to prepare for my intervi- I mean triage, so I had plenty of time to write down every little symptom on my phone, noting down every single detail I could think of. But like I said earlier, this was the circus show that I never paid for.
I told the nurses ALL my symptoms. Every single heart failure symptom, AS WELL as highlighting the fact that I have dilated cardiomyopathy, and have a strong family history of heart disease.
What did I get in response?
"You don't look like a properly sick patient so we would usually discharge you at this point"(Oh, I'm sorry Sharon, shall we take a tour to the main entrance and I can show you my pool of vomit outside)
When a healthcare professional, of all people, reduces your problems down to 'you don't look ill enough for us', you truly feel like the most neglected person in the world. You turn to them in all your desperation, only to be made to feel like your problems are not worthy of attention or care.
After finishing my interview on the note that "I have dilated cardiomyopathy and I am worried that these symptoms are getting worse day by day", the triage nurses finally agreed to admit me into a cubicle to be seen by an A&E doctor.
The final act of the circus
So they gave me a bed, and my mum a chair. It looked as if this part of the A&E was newly built, as everything looked very modern and boujee. Very nice and luxurious, I thought.
I spoke too soon.
The ECG machine was broken
They had to needle me at 4 different places to get bloods. Ouch.
The blood pressure machine refused to detect my abnormally low blood pressure
Some small delays, but I managed to see the A&E doctor on call, albeit a few more hours later.
This was it. The final act.
I had used up my last reserve of energy to smile at my mum who was patiently sat on the chair beside me. But I took one big breath, mustered up as much energy as I could, and made sure the message was conveyed, one final time…
“So, I’ve got dilated cardiomyopathy, here are my letters from my cardiologist in Leeds, and for the past few days/weeks, I have been feeling really breathless, and have been vomiting, feeling nauseated, loss of appetite”
I felt like a walking cassette player, having the statement above, on rewind, for the past several hours. But it was important that the A&E doctor knew every little detail – so I handed him all of my previous letters from my cardiologist in Leeds General Infirmary, stating clearly my entire medical history with heart disease, and decreasing ejection fraction (<25%).
Now, time to rant…
I was practically spoon-feeding my heart failure symptoms to the A&E doctor, and still, my heart failure was misdiagnosed for a chest infection.
“Your chest x-ray showed a small shadow in your lungs, which suggests you have a chest infection. We will send you home with antibiotics. Your heart looks and sounds fine. Come back to A&E if you have any further problems.” – A&E doctor
(and this is where the idea for this meme came)
This A&E doctor requested bloods, ECG, chest x-ray, and did a bedside examination of my heart. None of these tests can determine how much blood the heart is able to pump to the rest of the body – a very valuable piece of information, known as the heart’s ejection fraction.
For this doctor to completely disregard my entire medical history, refuse to conduct further tests to determine heart function (e.g. echocardiogram) and told me there was no need to see a cardiologist, was quite frankly, neglectful.
A&E #1: Summary
I have been on heart failure medications since I was 15. I came into this A&E with symptoms of heart failure, and did not get seen by a cardiologist, nor did I have an echocardiogram done. The “shadow” seen on my chest x-ray (which is not a very good diagnostic test of heart failure), was in fact a build-up of fluid in my lungs, as a result of my worsening heart failure, not a chest infection.
It wasn’t easy to miss. It was neglectful. The so called “normal” heart, that the A&E doctor claimed I had, would indeed be removed from my chest 2 months later, when I would be enlisted for a heart transplant, and be fortunate enough to receive a new heart.
A&E #2: I Am Satisfied With My Care
The negligence at A&E #1, meant that my condition continued to deteriorate. Instead of helping me, the antibiotics made me worse. I developed a new cough, that I didn't have before, and my heart failure symptoms of vomiting, nausea, loss of appetite and shortness of breath, seemed to amplify.
My dad, having taken the earliest flight back home, rushed me over to a different A&E, this time, an hour away (living in the middle of nowhere doesn't always come with its perks). When we arrived, I asked my dad if we could walk super duper slow to the main entrance, because I felt really sick. Despite the snail-paced speed, yup, you guessed it, I vomited. Outside the hospital. On the flowers. (Deja-vu much?)
(Still managed to smile even though I could taste the vomit lingering at the back of my throat. yuk)
This was the first day, I ever sat in a wheelchair. My dad and I laughed as he attempted to steer, only to leave me narrowly crashing into the corners at a turning. But in all honesty, I felt so guilty, that my dad - of all people - was wheeling me around in a hospital.
Hello, Heart Failure.
So, here I was. Having bloods, ECG and a chest x-ray. Again.
Only this time, there was a few additional tests – and it was these tests that could indeed confirm that I was in heart failure.
Additional test # 1: NT-proBNP
This is an invaluable blood test for people who have been diagnosed with heart failure.
How the test works…
The heart can release a stress signal, when it is struggling to pump blood to reach the demands of the body.
This stress signal is known as NT-proBNP, and is a protein that can be detected in the blood.
In a patient with heart failure, the levels of NT-proBNP generally go up, as the heart is more stressed, is working harder, and the muscle is stretching more and more, to try and get that all important oxygenated blood around your body.
My NT-proBNP was 7000ng/L. The normal level is 0 - 300ng/L
Information taken from NICE criteria for NT-proBNP levels in heart failure patients. Made with Canva.
The National Institute for Health and Care Excellence (NICE) recommends that patients with an NT-proBNP above 2000ng/L, should have an echocardiogram done urgently and be seen by a specialist.
hmm. very "normal" heart, clearly.
Additional test # 2: Echocardiogram
After observing a ridiculously high level of NT-proBNP in my blood, suggestive of heart failure, I had an echocardiogram done, to see how my heart actually looked while it was struggling to keep my body oxygenated.
The biggest difference between an echocardiogram and a chest x-ray, is that an echocardiogram can measure a heart’s ejection fraction, but a chest x-ray cannot.
Ejection fraction (EF): the fancy medical term for the amount of blood the heart can pump to the rest of the body.My ejection fraction was 25%. The normal range is 50 – 70%.
(Oh look, that puts me in the severely impaired left ventricular ejection fraction category according to the British Society of Echocardiography; Graphic: @SarahHudsonUK)
but it's okay. my heart looked perfectly "normal" on the chest x-ray, and I only had a "small chest infection". nothing to worry about.
A&E #2: Summary
From the findings at A&E #2, there was in fact, a lot to worry about. My heart wasn't normal at all.
===> 25% ejection fraction
===> 7000+ NT-proBNP
===> Fluid in lungs as a result of heart failure worseningAfter speaking with an actual cardiologist, I was told that the antibiotics I was given the day before, were never going to help me, as I did not have a chest infection, I had heart failure.
I was started on a diuretic (water tablet), known as furosemide, which was going to make me pee "a lot" - the kind of pee that you do after being asked to chug down the contents of your water bottle before a flight. Yeah. That never-ending, kind of pee. The aim was to remove all the excess fluid that had built-up (oedema) from my worsening heart failure. The 'hope' was that I would improve...
The next day, I continued to deteriorate, and was admitted into the wards at Leeds General Infirmary, where the dream team nursed me back to health.
And the story continues...
Final remarks
The purpose of this blog was to give my own, personal account of two very different A&E experiences, where I was met by different staff, received different treatment, and ultimately received different diagnoses.
If you're a heart failure patient, I hope this helps you on your journey.
If you're a healthcare professional, I hope this has given you an insight into A&E life through a patient lens.
I have put together a handy list of contacts and platforms you can reach out to for heart failure patients, 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!
Helping one person might not change the whole world,
But it could change the world for one person.
♥
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