Chronicles of the Heart, Part49 – Endgame?

There is, it seems, no escape from the beta-blocker Nebivolol.

For the last few days I’ve experienced – suffered from would be more apposite  – tachycardia, with a heart rate between 114-125, with my heart misfiring like a mad bastard and nausea so shatteringly severe I just wanted to die, simply so it would stop. What brought all this on, I think I know but hope I’m wrong, and being admitted to Arrowe Park Hospital to find out for sure simply is not an option.

Eventually, I gave up and took 2.5mg of Nebivolol, which eventually brought my heart rate down to a normal level, and I’ve now reduced that to 1.25mg morning and night, which in the past has kept things ticking along reliably enough. It still makes me feel like shit, though, and the nausea is unchanged.

It’s possible the nausea is linked to my heart failure, as nausea can be a major symptom. If so, then it bodes ill, as it’s probably an indicator that I’m deteriorating and, from the severity, pretty damn fast. (See footnote.)

As regular readers will know, my heart has been hopelessly irregular for years, but for a few weeks recently it behaved itself impeccably, no PVCs, no flatlining, no tachycardia, none of the buggeration that usually plagues me. Then, last week, I carried a particularly heavy bag of shopping from the door to my flat into the living room – a whole 6 or 7 yards, wow!– and the whole bag of worms kicked in again and has steadily got worse.

I really need an effective cardiologist, not one who goes off in a sulk if I object to dangerous tests (when there are safer ways of obtaining the same information), or one that prescribes an immoderately high dose of a potentially dangerous drug, and who thinks the logo on my clothing might actually be my real name (I mean, seriously, just how goddamned dumb is that?), but one who’ll bloody well listen to me, accept that I know what I’m talking about, and respond accordingly, not go off on some doctor knows best bullshit tangent.

The only option is the Royal Liverpool University Hospital, but the senior cardiologist there did my angiogram in 1996, pronounced my heart fine, and when I asked him how come I was having angina attacks refused to accept that I was, even though they were part of my medical records. Or, having seen how piss-poor Arrowe Park’s record keeping is, maybe not. Either way, waste of time seeing him. And, of course, it’s even harder for me to get to Liverpool than to APH. And, right now, impossible for me to go anywhere.

Anyway, I’ve faxed my GP asking for more Nebivolol, and explaining that 1.25mg twice a day is far more effective than 2.5mg once. The reason for this is that the half-life of Nebivolol is massively variable, and can be anywhere from around 10 to 32 hours, depending on the individual – and I’ve clearly got the short end of that, as it’s ineffective, and my heart rate starts to rise again, after maybe 9-10 hours.

This, I’ve also explained to my GP – it’s not hard to understand ffs – but he does like to try to impose his will and go for something different. And if he does it this time there will be bloody trouble!

So, anyway, like it or not, it looks like I’m saddled with Nebivolol, at least for whatever future there might be. There are other drugs which will bring my heart rate down, but none that are likely to be any safer, or less troublesome, nor as quick-acting.

Footnote:

I’ve had life-threatening illnesses more times than I care to remember, but this is the first time I’ve felt I might actually die, not least because I have nothing left in reserve, physically or emotionally.

I’ll stay online as for as long as I possibly can, but if I’m suddenly gone, well, at least people will know why.

I hope I have the time to close down my life tidily, and say my goodbyes, especially to those I’ve loved, and those I would have liked to, but that might be out of my hands.

***

Never’s just the echo of forever
Lonesome as a love that might have been.
Let me go on lovin’ and believin’ ’til it’s over
Please don’t tell me how the story ends.

– Kris Kristofferson.

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13 thoughts on “Chronicles of the Heart, Part49 – Endgame?

  1. This post moved me because it made me think of a close friend who has heart failure and COPD amongst other things. I don’t always have the patience that I feel I should have, just to listen because I can’t do much else. And anyway, I see in her eyes that she knows the poor quality of my understanding of what’s going on in her body and her head. I sincerely hope that this is just a ‘blip’ in your condition (easy for me to say, I know) and we hear a lot more from you. Bye for now.

    • Thanks, Veronica. But you’re right, you know, you should listen to your friend, because she’s probably scared shitless.

      She’s facing the same future as I am – she’ll either drag on for years, and die slowly and painfully, unable to care for herself, a burden to herself and everyone else (assuming she has anyone else; if not she’ll die alone in hospital), or she’ll crash and burn, also painfully – with this there is no good way to go – which is why I have a suicide kit.

      Try to be there for her. I know it’s hard – it’s a lot harder for your friend.

      • Thanks Ron. I guess I knew the answer all along but after a particularly harrowing day and being asked to help her plan her funeral (her family have stopped listening altogether) I was indulging in a bit of ……whatever the word is…. self sympathy or something. I WILL be a better friend and stop feeling sorry for myself when I’ve not that much to moan about.

  2. I can only let you know that I found you and your blog a very short time ago and I don’t want you to go. You have so much to give still, but I understand that you have no control with this. Am I being selfish in saying you still have much to give? Yes! I haven’t learned diddly squat yet but in the short time I have known you I have started a blog and am looking at that as a way of getting all these feelings inside me, out on paper and to the world.
    Take care Ron – I hope we hear from you for a long time to come – but I don’t want you to be in pain or suffering.
    Jay x

  3. I can’t bring myself to click the ‘Like’ button on this post Ron.

    As you know, my Dad had COPD, and died of heart and renal failure 4 years ago. I watched him suffer for his last few weeks It was awful, and he didn’t have ME or anything else that you have. I don’t want to imagine how bad it is for you.

    I hope you don’t disappear for a long time yet Ron. You will be sadly missed.

    Sending you cyber-strength to get through this.

    • Ah – shit!

      Sorry Tricia, I should have warned you not to read it, especially at this time. I hope you’re OK.

      Just too embroiled in my own problems, I guess. Not really an excuse, though.

      Ron.

      • It’s OK Ron. Neither you or I are religious, but I like to think that Mum is now with Dad in some form.

        We’re still waiting to hear if the driver will be charged with Mum’s death, or not. I’m still a bit numb with it all, and am thinking of contacting Victim Support (I got a letter from them).

        Take care of yourself Ron. I’d hate to lose a good friend too.

        Tricia
        xXx

  4. A “suicide kit” as shortly as a couple of years ago I wouldn’t have been able to understand you saying that, but after having short periods of time in excruciating pain while weaning off one pain killer and onto another on a few occasions I can understand someone taking their life.

    I don’t want you to die, I do so enjoy reading your blog, but most of all you come across as such a lovely person Ron and I honestly feel that the world is a much better place with you in it. You don’t talk much about family or anyone coming to visit you, I hope you are not alone.

    Dying is a natural part of life and being able to leave this life in as little pain and with as much dignity as possible is important and a right we all should have. I hope and pray that you will be around for a lot longer Ron, but either way my thoughts and prayers are with you. Beverley xx

  5. I find myself with little to say except I truly hope you manage to come through this patch as you have before; if you can’t you will not be forgotten xxx

  6. oh Ron have no idea what to say so just sending positive vibes n big hugs n hope you hang i there! i would miss your words of wisdom very much in the twitterverse x x x

  7. There are no words to put this properly, so forgive my poor fumblings….
    I am likewise, echoing feelings of “I don’t want you to go…”. However, the tidying things up becomes less and less “just in case”, and the planning for next year more so. It seems far wiser, to me, to accept the probable future – so thank you for the warning.
    I hope it passes – and not in the expected way. I hope you don’t have need of the kit. I think these might be empty wishes – and you know that – but it’s what I want not what I expect.
    I hope you can find hope in God for a better future than the one this world gave you.
    I hope you can find joy in the days that you have left. I hope that your life is worth living through the pain. I hope it makes you smile to know you have helped many others, and that you will not be forgotten – how about that?

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