From my heart to yours

I don’t often talk about health and I can’t say it’s the most comfortable thing for me to do but I believe it’s important that I speak up now. My reason for doing so is that I don’t want anymore people suffering or even dying unnecessarily because they aren’t being taken seriously.

So what am I talking about? Your heart.

Before you click onto something more exciting, bear with me, because my (slightly long) heart story will keep you entertained if nothing else.

My Story

Police officer down…

I was nineteen when I first experienced a problem. It was a cold December morning and I was in my police provided sports gear. We were doing a thing called a pelican run where you ran around and around the police college campus (in the bitter cold) to prove your fitness level. I loved the fitness and safety skills because it gave me a short break from swallowing English and Welsh Law to the extent I can still remember the entire legal definition of theft.

I don’t drink alcohol and I’ve had a good night’s sleep. I’ve had water with my cereal because I want to be hydrated and have a light load for this test. I play football, tennis,badminton, hockey, I run, swim and am my “ideal weight.” I used to run long distance for my school. I’m confident.

So I start off with my colleague sand there’s this weird weight in my left side like I’m carrying a child on my arm. Must be the cold, right? Maybe. I keep going but this heavy feeling gets worse like I’m holding two children and a third is on my back. I focus on making sure I’m not over breathing but begin to realise that I can’t actually breathe. As in I’m underwater, under the surface, and I need air.

I slow down but I don’t stop. My colleagues are ahead of me and it’s suddenly hard to coordinate my feet then pain prickles through my arm and across my chest, up my neck and my vision wobbles. I bend over, certain that it’s a virus or low blood sugar or something because people like me don’t have heart problems. I’ve been through five ops for other things as a kid and I know my heart is supposed to be strong.

But I still can’t breathe and my heart does an odd wriggle thing. I rub at it but know I need to stop. I walk off the course, manage to tell the trainer and find myself in a room with my amazing tutors who are concerned. They send me to the local GP immediately. The GP, in his kind empathic manner, talks to me like I faked it not to do the fitness test and that “if I have a heart problem, I can forget about my police career.” He tells me to go home to my local A&E and have them run an ECG.

I do as I’m told. I don’t tell anyone what’s happened because I’m embarrassed. There’s people with real problems with their heart and the A&E doctor runs the test then tells me“all clear, maybe you’re stressed.”

I feel stupid to go with embarrassed so I ignore the fact my body is telling me something and go back to work.

Then I’m on a nightshift and I’m exhausted. Fatigue is an unhelpful word that makes it sound like I’m a little bit tired and if I sit down and have a cup of tea, I’ll be just fine. No, this fatigue is different. It’s like I’ve been sleep deprived for a week and made to run drills with weights on my back. I can barely speak let alone function and that heavy feeling is making me anxious because I don’t know what it is and why it won’t go away. What I do know is that I’m not fit to drive a squad car or make decisions that could impact people’s lives so I have to tell my boss and be placed on sick leave.

I hate it. I am told that it’s stress so I go to a counsellor thinking it’s worth a shot. What is quickly evident to me is that regardless of whether I’m stressed or not, I shouldn’t feel physically like I do.

Eventually, sick leave runs out and my force want me to come back. I like them, they like me. I’m a good officer and my ambition is to be a great one and move up through the ranks but I’m also honest enough to know that I am danger to everyone around me if I can’t breathe or function during a moment when I’m needed the most. So after all the training, all the hard work and dedication, I have to hand in my warrant card.

It had a devastating impact on me, I won’t lie to you. I remember sitting in my car waiting for my appointment with a superior to hand in my warrant card. It is one of the hardest things I have ever had to do but thank goodness I had the honesty and sound mind to do it.

Footballer Down

A few years later, I’m gigging,working odd jobs and playing and training most nights with rugby, football,tennis and hockey. In rugby, I’ve managed to rebuild some kind of physical fitness. I started off running at the back with people who were just starting to exercise or had conditions that prevented them from training properly and I’m running at the front now. I’m feeling… okay. One of my favourite things is five-a-side football. I’ve been outfield and now I’m taking my turn in goal.

Pain hits my left arm, I lose the feeling in both arms, my legs buckle, my heart jumps in my chest and I hit the floor. Weirdly, we are playing student doctors and medics who haul me out into the cold and put my feet up against a wall. I’m not really sure if it helps because I’m still in shock that I hit the floor. In true me fashion, after a few minutes, I get up and carry on playing. They checked my heart before,right? Maybe I’m stressed or something again, right? Only I wasn’t stressed and I was enjoying myself.  

Stick Thin

Cut to when I’m 29. I’m receiving 24 hour care now. I’m no longer a healthy weight. I should be 64kgs at my height (9 ½ stone ish) but I’m 45kgs (7 stone.) I’m so slight that the doctors think I have an eating disorder. I don’t. I tell them I don’t but they aren’t listening. I can’t breathe constantly now and I am close to passing out when I stand up. There’s a whole host of symptoms but I get no answers and no help when my GP refers me. The experts just run a few basic tests and send me back to the GP. Trying to explain that I can go from being in control of my legs to collapsing only adds to the medical staff’s assumption that I’m doing it to myself. If I go through CBT or Counselling or hey, take some anti-depressants, that’ll make me better. I keep explaining that I’m not depressed. I know people with depression. I ache for those people because they suffer in ways I hope I never ever truly understand. They don’t collapse or have pain in their chests… at least not from depression.

The Empath 

I’m 31 when Aeron is released.I’m in a worse state and I contract a virus. My heart trips. I’m lying on the couch with my pulse hammering in my throat. I don’t know what is happening. We try lifting my legs and all sorts but nothing. We’re about to go to A&E when my mum says “hold your breath like when you have hiccoughs.” I tried it.It stops. I know full well in that moment that if I don’t find out what’s happening,I’m only going to decline. The “don’t panic” or “maybe you’re just causing it yourself” spiel from the doctors is really getting old.

So… I study. I study in the way I was taught by the police. I learn how the body works, how it interlinks and communicates. I learn each system not because I want to pass an exam but because I want to survive. Doctors not only think I’m crazy now but they think I’m a hypochondriac to go with it. I research the papers, I read the very same books our doctors use during studies, I also study osteopathy and its principles because Doctor Still(in the 1800s from Missouri of all places) believed that the culture for giving morphine and “Band-Aid” medicine was in fact making people worse. Osteopathy is named because it begins with the bones.

At the same time I’m writing Aeron’s Series and studying creative writing but I find information on orthostatic problems (when you stand up) and the excessive focus on everyone who has issues being deconditioned as if they can’t be bothered to try. Some of the material I read is so patronising, I’m shocked. I’m shocked at how condescending the medical community is about people who are suffering.  

Aeron’s Series and Pippa’s first outing give me the ability to visit a private cardiologist. He believes I probably have Postural Orthostatic Tachycardia Syndrome (POTs) and tells me my heart has probably shrunk because I am deconditioned—something he calls The Grinch Syndrome—and tells me to recumbently exercise an hour a day until I pass out. Yes, those were his exact words. Thankfully, he refers me to a friend in Wales. His friend is the best and most empathic doctor I have ever met. He immediately tells me not to do anything as silly as push my heart like that because we need to know what is going on first.

So I go through tests for unspeakably terrifying diseases but they are clear. There seems to be no reason why I can’t put on weight but my hero-doctor has seen something on my resting ECG which is often ignored and he listens to me. He doesn’t think I’m collapsing because I’m crazy. We figure out a rehabilitation plan and although he asks my local hospital, I’m not entitled to help from them unless I have a heart attack first.

Then I get Ferb (trusty woof to the rescue) who keeps going crazy at me and barking a warning bark. He’s not meant to do that. He’s meant to take off my socks but from the second he’s with me, he can smell the change in chemicals. Twenty minutes before I get a skip or a wriggle, Ferb goes nuts.

On the head…

He’s goes nuts when I’m on my mother’s driveway too because I’ve blacked out or collapsed and hit the concrete face first. I don’t know where I am, not really, and the ambulance crew drags me to my feet and makes me walk—although I try to tell them I can’t—to the ambulance. My chin is bleeding,my hands are bleeding and they even make me walk up the steps and keep asking why I can’t move my leg properly.

I’m left in the hospital for hours (still bleeding) on a wheelchair with only one foot rest and a hole in the back. I’m taped up (because the nurse ignored the doctor’s order to glue my chin) and sent home with only an X-Ray on my jaw.

I was concussed but the reaction is delayed until a few days later when I try to speak but can’t. It’s nonsense when I try or broken speech. I have a nasty infection to go with it, I don’t know where I am, I’m now scared and angry and I go to see my cardiologist because my heart is worse.

“You’ve got a concussion,” he tells me and is horrified how I was treated. He’s also concerned why I collapsed.

Holiday… Super Nurse

A few months later, I’m on holiday in Centre Parcs and my heart goes crazy again. The nurse who just happens to turn up worked in emergency care and is a cardiac specialist. She runs her checks and says she thinks I might be having an SVT. I’m used to “the hiccough” manoeuvre now which she tells me is a vasovagal technique which is known to stop attacks. She tells me to inform my cardiologist. He’s delighted to help so he inserts an internal monitor and within a month, he has all the information he needs to perform an EP Study.

This is where the electrophysiologist (heart guy specialising in electrics) feeds a wire up through your groin into your heart (and you’re awake.) They then attempt to pu tyour heart into the arrhythmia so they can map where the extra electrical cell is and block it by burning it. He set it off in seconds and needed just the one shot to stop it.

That was 2016. Within months I had put on 10kgs (so I was 8 stone) and we took the implant out in January 2017. Case closed, right?

Return of the dodgy rhythms

If only. My cardiologist transferred to England to take up a position there in the January but in February my heart started to trip again. There is a 90+ chance of success but when you have one arrythmia, you sometimes unmask others. In the March I suffered another arrhythmia that felt a lot more dangerous than the one I’d had (which you get used to after a while.) This one came with that heaviness, pain and loss of feeling in my arms, light-headedness, shortness of breath and I wasn’t sure if I was passing out with it. Yes, that feeling which I’d been told was all in my head. Ferb, my beloved assistance dog, was going absolutely crazy every time it happened.

So I listened to my super-pup. As the NHS were not helpful, Aeron had funded my heart op and treatment and funded me seeing a new cardiologist. This guy put a Holter monitor on me for a week in May and picked up three different rhythms including a suspicious looking one but other than offering medication, told me I was doing fine and “reassured me.”

By this time, I no longer bought that approach. Hero-doc had taught me well and I’d soaked in his knowledge and read every book, reference text and paper I could on the heart.

The second rhythm was a ventricular one. I could feel the difference. The top chambers didn’t cause pain or numbness, they were not pleasant but they didn’t make me feel like I was drowning underwater. It wasn’t that feeling.

Not so hotshot doctor

I sought a second opinion from the man who took over from Hero-doc. He is probably the worst doctor I’ve ever met. Imagine it. You are paying them to ask for help because your heart is not doing the right things; you have experience of what it feels like because you have already undergone an operation and know there is a possibility of having more. Then you come face to face with a guy who tells you “I have more arrhythmias than you,” and says, “If you stop thinking about it all the time,you’ll be better. You’re just overly aware.”

In other words, stop being a hypochondriac.

He then offered me anti-arrhythmic medication. I was confused why if I had no issues he wanted to give me this medication. I then explained that the medication was contraindicated (I’m not supposed to have it) because of another condition I had and, politely,explained that I didn’t want to risk any more organ damage.

He told me “you’re wrong.”  

I explained why it was contraindicated because hero-doc had discussed with experts in that area and we’d decided together it was not worth the risk.

The new doctor just said, “he was just a locum, what would he know.”

Professional.  

Needless to say, I ignored him and found a female cardiologist. I explained my situation, what had been said and gave her my test results. She was incredibly thorough and kind. She went through every test to check my physical structure because she listened.

She sent me to a trusted friend (a guy) and expert who ran another test and… guess what… he thought I was crazy… without ever even meeting me. 

Back to square one, right? No. I talked to my female doctor and told her I’d like the implant re-inserted to prove beyond all reasonable doubt that I was not crazy, not causing myself to collapse and that I am capable of knowing what my own body is doing because unless you are having an arrhythmia at the time, the ECG can’t always pick it up.    

Yeah, that’s a big thing, isn’t it? There are some things that can be seen, like a humped P Waves, a slurred delta wave, R wave morphologies etc. but unless they can see it, they can’t always know it’s there and even then, unless they are doing an EP study, they can’t tell for certain what it is. They can have a good idea, but an electrical study is the key.

Beyond all reasonable doubt…

So in June, I travelled halfway across the country to be implanted with a recorder in my chest. By August, two different SVTs had been picked up. Then, in October I was stressed. And guess what… the nasty rhythm tripped.

Two days later my cardiologist calls me and says that she really wants me to have another EP study… soon. The rhythm could be an SVT which is tripping my ventricles but those SVTs usually have a different signal on an ECG. The one she picked up is different…I’ve been having non-sustained Ventricular Tachycardia. It’s known for making you collapse. It’s a “troublesome” rhythm. With no structural cause, mid-to-long term prognosis is that it will deteriorate to VF. If that happens, I have 48% chance.

Yeah… not so crazy.

Good news is because I have a structurally normal heart, I have a 90+% chance of the ablation being successful. If I’d listened to the countless doctors or even taken the type of medication hero-doctor’s replacement suggested, I’d more than likely have had VF. A heart attack.

Yeah… great doctor, he is. 

In Black Ridge Falls there is a scene where Lilia suffers from a WPW tripped-VT. It may seem real because it is. Aeron in the same book is living my story because Aeron’s series gives me the chance to reach readers who may recognise what she is going through.

Now what?

So where am I now? I have to travel half way across the country again to see a new man that specialises in electrophysiology. My cardiologist is a pump girl and complex electrics are a highly specialised area. I have to find the ability to trust another doctor. I had complications during the last procedure, so you can imagine I’m terrified about going through another.

When you talk to medical staff, sometimes they come out with gems like “oh, you don’t need to worry about that,” or “it’s only dangerous for a small number of people.”

I would like to say to my dear medical friends that unless you have experienced full force arrhythmias of any kind, do not act like it is a trivial matter. Regardless of whether my VT could degenerate into VF (a heart attack) or just cause me utter misery and debilitate me, or even just “fatigue” me. It is real. It is terrifying. It is not okay to make me feel stupid or neurotic for being concerned.

Dear, Mr/Ms Doctor…

It should not matter what my age, gender, lifestyle or size of my wallet, I should be listened to. You might have done a medical doctorate but I live in my body.

Aeron and every book I’ve released has given me the ability to pay for medical help I should get for free. I have to do that because that is the only way I can get help and be listened to. You only have to read studies from around the world to link that to my gender and, I can’t discount that unfortunately, but I think that the bigger problem is doctors accepting you are not there to enjoy attention, to be neurotic (and it wouldn’t matter if you had a mental health problem, your opinion should still count) or to waste their time on things that aren’t important.

The most important message I can share is that if you feel that your heart isn’t doing what it should, keep fighting. Do not just accept being fobbed off if you are worried. If you are concerned, you should be listened to.

Heart problems are the second biggest foe for women. More women are lost to heart problems than cancer and only dementia is a bigger threat.

They are not just problems that only the elderly, obese, diabetic, smokers etc. suffer from. You can be a fit healthy individual of 19 like I was and still be effected.

If you are female or have the genetical make up of one, knowing that we experience arrythmia differently and what our symptoms are is vital.

Whatever gender you are, knowing what your options are is important because whether it’s medication, an implant like a pacemaker or ICD, or an ablation, your individual needs are more important than money saving.

After all, what amount of money is more valuable than a life? You have a right to life.

From my heart to yours, beat freely, beat happily and always, always, get it checked.

15 thoughts on “From my heart to yours

  1. Oh my god Jodie, I knew you were unwell…but I had no idea. All I can offer is a mental hug to you all. If you ever need anything from me at all, just ask. Love you, 😘

    Liked by 1 person

  2. I read it all. I hear you. My heart goes out to yours. You are the person who is the expert on your symptoms and medical staff should have been/should be listening to you.
    Keep standing in your own space, in your own shoes and stay strong in your demands for the treatment that you need and deserve.
    Well done. And thank you for Aeron…

    Liked by 1 person

  3. So sorry you have had to go through all of this, Jody. There is no excuse for those doctors treating you that way. A good doctor once told me to trust my gut and I always do. It got me through my breast cancer diagnosis that was undetected through three mammograms and an ultrasound. But I knew the lump I felt wasn’t just “fibrous tissue” so I pushed for a biopsy, which came back positive for cancer. Always trust your gut. Always advocate for yourself.

    Liked by 1 person

  4. Wow! My own experience with the medical profession recently doesn’t even come close to what you’ve endured over so many years. I suspect a lot of people don’t survive because they believe the doctor knows best.

    Liked by 1 person

  5. Jesus Christ! I’m so sorry to hear that you’ve been suffering from this highly complex cardiac problem! I’m more sorry that you’ve been fobbed off too many time for it to be legal! Bloody hell! I’m in awe of your strength and courage to fight these bloody idiots and trust in your own instincts, and what your body has been telling you warning you. My heart and soul go out to you. I sincerely hope that this next venture you’re in will finally get you the care and treatment that you’re entitled to. Yes, we all have the right to live, to be listened to…by the health care professionals! Please take good care of yourself! Keep the faith, believe that the light is at the end of the tunnel. You will reach it. I know it. I believe it. Sending you every positive energy I have to you. Keep fighting! The world needs you. We all do! Lotsa love and hugs to you, mate!!

    Liked by 1 person

  6. Jody… I am almost speechless… What a terrible journey you have been forced to experience. Good for you for keeping on… Challenging the medics. I had to do the same to get Suz diagnosis in 1991. Many docs see women as hysterical.. We strong amazon women just have to keep chipping away at the stereotypes so that future generations will not have to suffer the plethora of indignities meted out to you. Much love darling… From Suz and I. You are an amazing inspiring woman I’m so glad to know!!!!!!!!!

    Liked by 1 person

    1. It is sadly a common fight, isn’t it 😞. I hope like you that one day we can get rid of their bias or limit it enough that people can get real help straight away not several years after. I’m so glad Suz has you fighting alongside her. ☺ I’m inspired and so glad to know you too 🙂☺😊

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