My Story

[wattsy1985]

Last April, after a few days of what I thought was a stomach bug, I started feeling some chest tightness whenever my heart rate went up. Being a typical stubborn guy, I figured it was just a chest infection coming on. After a couple of days, I decided to see the doctor because even a short walk at work brought on the same symptoms.

I booked an appointment and drove myself to the doctor, expecting to get some antibiotics and be on my way. But then, they wanted to give me an ECG. I thought, "Sure, just another check, and I'll be out of here." After the ECG, the doctor explained that my heart was no longer in sinus rhythm. She said if I were older (I was only 38 at the time), they would have given me some tablets and sent me home. I thought, "Great, no tablets, it'll sort itself out." But no such luck. She explained that I needed to go to the hospital and was shocked that I drove myself there. The only way to get to the hospital was to drive back to work, pick up my partner, drive home, and then have her take me to the hospital.

The doctor said I didn't have to go to A&E; I could go to a ward where I'd be seen quickly. I thought, "Amazing, a quick once-over, see a doctor, and I'll be on my way." We arrived at 6 pm. How wrong I was! The hospital staff were great, but the NHS was a mess. After being quickly seen, having blood taken, and another ECG done, I was told to wait in the waiting room with at least 15 others. I thought, "No problem, a couple of hours, and I'll be seen again." Not the case. I saw a junior doctor at 3 am who basically repeated what had already happened when I arrived and then told me to wait back in the waiting room.

8 am came, no sleep. I couldn't complain; I was young enough to sit there, but seeing the elderly patients struggling made me feel sorry for them. At 8:30, I was told I was moving to the same-day emergency ward where they would look to discharge me. I thought, "Amazing, I'll be on my way." It wasn't until 1 pm that I finally met with a consultant who said they'd do my ECG, and if all was well, they'd let me go. I saw their face and knew this wasn't going to be the case. My heart was still irregular and beating over 150 bpm.

Finally, I was given a bed in the ward. I use the word "bed" loosely as my legs were hanging out of it, and I'm only 5'11". They started giving me drugs, which I believe were bisoprolol, but at the time, I had no clue. I was then taped up with a heart monitor. I'm not sure if these things are there to monitor your heart or to make you more stressed. Anyone who's had AF knows the heart is all over the place; it was almost like a game of "Guess That Tune."

A couple of hours later, I saw another consultant who explained they'd give me a top-up of my medication because my heart rate wasn't decreasing as much as they'd like. But all being well, I should be home later that night. More hours passed, and the day shift disappeared, with the afternoon shift taking over. Around 8 pm, a third consultant came over and explained that I wouldn't be going home because I was close to cardiac arrest, and it wouldn't be safe for me to leave. As you can imagine, this was music to my ears (not). They were waiting for a bed to become available and topped me up with more drugs and an injection, which I wasn't even sure what it was. 10 pm came, and the whole ward had disappeared apart from a couple of patients.

So, there I was, with a few patients, a career, and a stand-in nurse on her first shift. You can imagine the horror on everyone's faces! But credit to them, they got us on the ward, and I just crashed for the night.

I could go on about the horror story that the rest of the week was, but that wouldn't be fair to those who did an amazing job. By Friday night, I was finally discharged, thanks to my partner tracking down the only cardiologist in the hospital. My heart rate wasn't great, but I explained that I'd recover better at home since the hospital was just stressing me out. The consultant was amazing and discharged me on the promise that I'd come back on Sunday to see him.

Sunday arrived, and I dreaded going back. Meeting the consultant again put me at ease. The ECG was done, but my heart rate was still a bit high. My Bisoprolol was increased to 15mg, and I was on 125mcg of Digoxin and Apixaban. Over the next few weeks, I kept going back for weekly checks. Nothing was getting better, but nothing was getting worse either. I was discharged and told someone would be in touch about a cardioversion.

Once I was discharged, more fear crept in. With the NHS in the state it was, how long would I have to wait? Then I remembered I had private healthcare and could see a cardiologist there. Another horror story with local doctors and paperwork, but I won't go into that.

Once everything was sorted, I saw a private consultant. What a breath of fresh air! He had all the time in the world for me and answered all our questions. I had another ECG, and although I was still in AF, he wanted to put a 48-hour Holter monitor on me and see me later in the week for an Echo scan. Amazing, I thought, things are moving forward.

I arrived at the hospital for my scan, and the consultant came in after my results, saying he wanted to send me for an MRI because some measurements weren't as expected. The Holter results showed my heart rate peaked close to 200 bpm, which scared me more than the MRI. My Digoxin was increased to 250mcg.

What never made me feel better was when doctors commented on my medication levels, saying it was a lot or questioning if I should be on that much. I just remembered what the consultant who discharged me from the hospital said in his French accent, "We need to kick you like a horse." I still don't understand why health professionals say things like that!

I know most people hate MRIs, but I actually don't mind them. I see it as me vs. the machine, and I ain't letting it win! The robot's voice constantly made me jump when it asked me to hold my breath, which I kept smiling about. MRI completed, I was told the consultant would have the results in 24 hours, so I could relax until then.

We arrived for the consultation not really knowing what to expect. Part of me thought, "It can't be life or death since no one had been in touch before this." Anyway, we sat down, and he started to go over my results. He confirmed that my results showed early dilated cardiomyopathy, which could be caused by AF or might have been there before. Again, me being naïve (you can see the theme here), didn't give it much thought. I explained that I had an appointment with the NHS hospital regarding a cardioversion and asked if I should still go ahead with it. He said, "You may still end up with a cardioversion on the NHS, which is reasonable to go forward with, though you have a lower chance of success in terms of maintaining sinus rhythm in the medium to long term." On top of my current medication, I was then put on 2.5mg of Ramipril.

It wasn't until I got home that I really started to process everything that was said. Reading the letter he sent to me and my doctors made me upset about what the future might hold. It was a scary time, reading everything online that basically said death was all I could look forward to. After that, we had a follow-up call with the consultant, who was amazing and answered all our questions.

August came, and I finally had my cardioversion. It was weird to always feel your pulse out of rhythm constantly. Sitting in the waiting room and seeing people come out after theirs, hearing whether it had been successful or not, was a reality check. Anyway, with my chest waxed, I was on my way to the theatre. The team was amazing; we were laughing, which put me at ease. Next minute, I'm waking up as I'm being pushed through to recovery. "Did it work?" was the first thing I said. "Yes, on the first attempt," they replied. It choked me up straight away, and even writing this has the same effect. Twenty minutes later, I had another ECG which confirmed it was still in rhythm. I walked out to my partner looking all sad for myself, then started beaming with the biggest smile. After everything that had happened over the last four months, it felt like this was the only victory I had.

My heart has been in sinus rhythm ever since. My consultant said medium to long term, but I'm not sure what that really means. I'm happy with where it is. Just before the cardioversion, I stopped my Digoxin and haven't been back on it.

In October, I had an appointment with the NHS hospital where I saw a new consultant. An ECG was done, and upon reviewing it, he reduced my Bisoprolol and told me to stop taking Apixaban. I informed him of my MRI results, which he was very dismissive about, making me pretty angry. He agreed to give me an Echo scan. After the appointment, I emailed my consultant, feeling pretty angry about being disregarded. He was very reassuring, although not happy my Apixaban had been stopped.

When I got my Echo scan results back, they showed improvements in my LVEF compared to my previous MRI results: 45% vs. 56%. I guess the difficulty is understanding how much of an improvement this is due to the accuracy of the Echo scan. Luckily, I have another MRI planned in May.

My story isn't nearly as bad as others, but writing this has made me feel better. Some days are really dark, and others I see some light. I think the difficulty with heart issues isn't necessarily the physical side but more the mental side, and I don't think anyone prepares you for it. I've had what I class as heart pain ever since I left the hospital, and this has always been dismissed as something mental rather than physical. But what if it isn't? What if it is?

I don't know what the future looks like, but I'm going to try and enjoy the journey there.

[Butterfly65]

The way in which you've presented your story made me laugh & laughing hasn't been a regular occurrence for me these days so thanks for adding a bit of humour & comedy elements.

We all have similar stories to tell. When I was put on a ward after spending two days on what I can only describe as a cardiac A & E unit where I'd had little to no sleep because of all of the heart monitors beeping 24/7, with screams & crys of help me, help me going on continuously throughout the whole time I was there, and hearing the staff singing Beatles songs to the woman who was crying out for help, because she was an old lady with dementia who asked the staff to sing to her throughout the night, but as soon as they stopped, her help me, help me cries would start over again. My heart rate was 180bpm, I was shattered but unable to sleep.

Also heard the cries of children being rushed in which was upsetting.

After 48 hours I thought anywhere in the hospital would be an upgrade after that but I soon discovered I was wrong.

I was put onto a small ward with just 6 beds, the other 5 woman on the ward were either in their late 80's or 90's, I'm 59.

Didn't see them because our curtains were always closed around our beds but could hear them talking, snoring, moaning & groaning & farting.

Was told by nurses the ages of the other women. The beds seemed really close together compared to my last hospital sleepover when I gave birth to my daughter 36 years ago.

The woman in the bed next to me had dementia & wouldn't stop singing a very strange depressing hymn that I'd never heard before. All 6 of us were attached to heart monitors which caused me to have sudden extreme panic attacks. The ward was loud smelly & depressing, I suffered another two days there unable to eat or sleep whilst having to use a commode in my small space surrounded by lilac curtains until I was eventually moved to a private room with bathroom where I spent another 7 days in relative peace & quite.

I also have dialated cardiomyopathy & A-fib, have had to wait 7 months for a cardioversion which is scheduled for the 2nd of April.

My Ejection Fraction was 23% when diagnosed end of last August, it went up to 34% after MRI scan in October.

You're very lucky that yours has been discovered In early stages.

I have damage/ regurgitation to two valves plus left & right ventricle damage.

I'm breathless on the slightest of exertion, have to take diuretics for fluid retention caused by low EF/ heart failure plus 6 other drugs to control heart rate & heart failure.

Most cardioversions only last days, weeks, months or a few years.

Many go on to have several cardioversions followed by several ablations, even those with lone Afib.

It's not unusual to have several of these procedures but still end up back in Afib.

Some are told that they can't have any more procedures so should accept permanent Afib.

[wattsy1985 in reply to Butterfly65]

It seems like many people have had similar experiences once admitted to a ward. I ended up taking sleeping tablets just to get some rest! 😴

Why is the waiting list for cardioversion so long in your area? I was lucky with a 4-month wait, though the private consultant mentioned that if I'd gone to the NHS he works at, he could have done the cardioversion right away. Sometimes I wonder if having it done immediately could have helped me avoid DCM, but I guess I'll never know. 🤷‍♂️

fingers crossed that your cardioversion goes well.

[TasteLessFood4Life]

Hi - hope you are doing well and thanks for your informative email and experience about the bureaucracy and inefficiency in the NHS. I sense that perhaps your age was counting against you for people in the NHS to be taking your symptoms seriously enough and perhaps delaying further testing.

I have experienced something similar too - had palpitations / high heart rate / high BP - went to A&E. Like you, usual tests were repeated multiple times and I was dismissed. I went the alternative route (private) had echo, holter and ctca. Ctca came back with moderate stenosis in the LAD and have been on statins and daily aspirin ever since.

In our cases - we are lucky to have the private as a backdrop - but sadly many people dont have this option. My key message would be that if you sense that something is not right - keep pushing for a proper diagnosis and tests untill you feel satisfied. Doing the same standard tests (i.e. ecg / bp/ oximeter) over and over again doesnt really solve anything.

Whilst NHS do have great Doctors and pioneering treatments, they only spring into action when it is very serious especially if you dont fit the typical profile. I have experienced healthcare in other countries - it works a lot better than the NHS. What you want from a top tier healthcare system (1) early diagnosis and (2) positive outcomes. I dont think NHS is doing well on any of these metrics, hence, it is not top tier in my book. But then again, it is free at point of delivery, you cant have it all.

Best - hope you get better soon!

[wattsy1985 in reply to TasteLessFood4Life]

I agree, it's a bit odd that my age was counting against me. You'd think if someone unexpected is suffering from AFIB, it should be taken more seriously, but it never felt that way. 🤔

The private consultant I see also works for the NHS. I remember chatting with him about how lucky I was to get an MRI scan, otherwise the wait on the NHS would have been ages! He kindly explained that the NHS wouldn't have sent me for an MRI and would have just treated the AFIB. That was pretty scary to hear. 😬

[TasteLessFood4Life in reply to wattsy1985]

Yeah - shocking. The fact that NHS consultants are allowed to have private practice while their house is not in order is just criminal. There are also cases where NHS consultants have set-up companies to fleece the tax-payer even more via private work. Talk about conflict of interest.

[dg2024]

I certainly would not bother with the nhs either!

[wattsy1985 in reply to dg2024]

I guess a lot of people have no choice, like I said I'm in a very fortunate position that i get private health care. I guess you can see why more and more people are going down the private route

[scentedgardener]

I would add the reluctance to share information ABOUT you WITH you, and talking in euphemisms drive me crazy. If I was younger I'd expect them to tell me not to "worry my pretty little head" about it.Now I'm old they speak slowly, carefully and loudly, and call me "Dear "

[wattsy1985 in reply to scentedgardener]

I dont think anything is given away really, my private consultant would be an excellent poker player whilst the consultant i see under the NHS is the opposite end of the scale and just dismissed everything as if nothing had every happened

[Almond24slices]

Hi wattsy1985. You've certainly been on some journey. I don't think I can tell you anything to improve your life. I was diagnosed with AF after going to the doctors with tiredness and lack of energy, also becoming breathless quite quickly. My heart rate is normal but irregular if that makes sense, if anything slightly on the low side. I was put on Apixaban and bisoprolol, but I was then taken off the bisoprolol because they made me so ill.

That's where I am at this moment in time, what the future holds for me, I have no idea. I feel for you at such a young age, I at least got to the age of 75. Good luck to you, I hope you get sorted and live a long life.

[wattsy1985 in reply to Almond24slices]

Yes that makes perfect sense, have they offered you a cardioversion? im sure that will certainly make you start to feel better. Its funny ive heard so many stories about people suffering with bisoprolol yet even at the highest dosage i didnt suffer with any side affects which i guess is lucky