Chronicles of the Heart, Part 43 – progress at last…

Well, as of right now, the toxic beta-blocker, Nebivolol, is out of my system after taking the final fractional dose (0.3mg – ish), at 06.00 today.**

For the first time in a month, I feel almost well. Almost, because my legs and feet are hugely swollen though, after a week of agony, they’re going down again slowly.

Obviously, I still have a lot of ground to make up (and the underlying conditions remain), but at least the light at the end of the tunnel may no longer be an oncoming train…

** Diltiazem, 180mg twice a day, seems to be capable of keeping my tachycardia under control (frankly, I’ll worry about my blood pressure later – one thing at a time). I say “seems” because last night I woke and my heart was going like the clappers – I didn’t dare check it but I’d estimate it around 200bpm – I was vibrating!

If that’s repeated (just once means little – it could have been pushed up by a dream), then clearly I’ll have a problem, but until disproved, I’ll take this as a win.

And as I might have said, there is no point whatsoever in my going back to Arrowe Park Hospital (hi guys!), cardiology OPD in January. I’ve seen two cardiologists so far, one did nothing in 5 months, the other one actually made me a hell of a lot worse. APH would no doubt claim that’s my fault for insisting on Nebivolol, but no it’s bloody not – I was assured that it was safe when, in fact, it was not even remotely safe, for the reasons I’ve already described here and here.

If you have COPD and/or heart failure, I strongly recommend avoiding Nebivolol like the plague – as far as I’m concerned there is no safe, effective, dose in those circumstances – no matter what assurances you might be given.

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10 thoughts on “Chronicles of the Heart, Part 43 – progress at last…

    • That’s what I got a copy of my records 18 months ago – absolutely nothing in there I can base a case on, and I doubt anything has changed now.

      More dangerously – are you reading this APH? – there is nothing in there that would usefully inform any future doctor in the event of a readmission.

      As I said a year ago, Arrowe Park Hospital’s record-keeping is so slipshod I have little doubt it has put lives in danger – if, indeed, it hasn’t actually cost lives.

    • Cheers, Bev.

      Thing is, though, suppose I was an average, know-sod-all, trust-the-doctor, type of patient, I’d probably be dead by now, or at the very least seriously ill in hospital (and no-one would know why because my records are rubbish).

      And yet all APH can do is whine about what I’m writing about them – never a thought of addressing the cause.

      • You know, if my Dad (who had COPD and heart failure) was still alive, and was given the meds you had been given, he would have taken them happily. If I had told him that they were bad for him, or even if he read your blog, he would have still taken whatever his doctors gave him. He was that average, know-sod-all, trust-the-doctor, type of patient, as is my Mum.

      • It’s scary that’s for sure. APH have the audacity to complain about your blog, they say the truth hurts. Seriously though their treatment or lack of treatment for you is unprofessional, dangerous and criminal the list goes on.

        • True, but on the plus side, self-medication (telling my GP what I need), is actually working. I feel, if not “well” then at least functional, and 100% better than I felt a week ago when still taking Nebivolol, which I managed to stop without provoking a crisis.

          The oedema in my legs and feet is diminishing – though not as fast as it developed!

          I still have the option of going back on Losartan if I have to – it’s not fun but it’s not in the same universe as Nebivolol when it comes to causing problems.

          As for APH (I know I’ve said this, but not everyone reads every post/comment), I wrote to them pointing out that not liking what I was saying about them was no justification for asking me to take posts down, or change them, and they needed to be more specific about what exactly they objected to, and by the way, how about removing the cause of my complaints, not bitching at me?

          That was two weeks ago – no reply.

  1. Reading the comments here my husband and I went to the hospital in March and the specialist there told him he had only 6 months to live .i was livid because my husband has heart failure diabetes , kidney failure and it goes on but i know having worked in the community that he is no way on his last legs………according to the specialist he has 1 month left to live……they have turned off his ICD [saving money]……then our GP came to see my husband two weeks ago and said no way was my husband any where near death in fact he said he was writing to the hospital and was going to tell them.but my husband believes everything a doctor tells him.i doctor myself because i have been given wrong drugs now i check them out

    • No doctor can say with that degree of certainty how long anyone has – life isn’t that neat and tidy. Statistically, I have less than 6 months, but statistics are fuzzy things with a huge degree of variation – I could have weeks, or a year or more. No way of knowing til it happens.

      Sounds like a hospital to avoid though.

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