A letter to my vascular surgeon…

>Trigger warning – suicide.<

 

Who, depending on his response, might soon become my former vascular surgeon. Doctors’ names have been redacted, no matter how justified I might be in publishing them – I still need them so would rather not piss them off just yet.

 

Dear Mr. Vascular Surgeon,

Re: Morphine Sulphate Oral Solution (Oramorph, for the sake of brevity),

and Zomorph.

In response to your request, my Zomorph was increased to 130mg b.d. after my last appointment. I am finding, however, that the expected reduction in pain and, thus, in my Oramorph consumption, is elusive.

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This is what I’m up against…

NB: Ulcer photos – don’t click through if squeamish.

I’ve enhanced the colour to make it a bit clearer. The ulcer is mottled yellow, the leg below and the foot above, pink. Between the two, on the left, there’s a semicircle of deeper pink tissue at which the arrows are pointing – that’s blood. Some days it’s more obvious than others.

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Leg report – and it’s a good one…

Warning – contains ulcer photos some of you will find gross.

***

Yesterday – the first for several years – was a day in which pain featured only peripherally, due in no small part to the increase in medication enforced by the vascular surgeon.

That increase – which took an unforgiveable three weeks to get to me via my GP – was immediately followed by an attempt by him to stop my supply of Oramorph. I got it reinstated after dishing out a bollocking that surprised even me, during which he complained that I don’t keep him informed enough – a charge that’s only partly true.

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It’s all gone bit pear-shaped…

In terms of travel, that is.

(NB: I wrote this over two days. If you come across a discontinuity anywhere, that’s why.)

On a more immediate note I started this yesterday (Monday), and it’s now Tuesday, late morning, and things are pretty scary. I just can’t function at all. I’m trying to finish this but it’s taken me hours to add a final couple of hundred words – I keep drifting off and my breathing is very poor. It’s not often my condition frightens me, but it does today. I might have said that – I know I typed it somewhere this morning – I’m just too exhausted to re-read this to try and find it. Apologies if it’s here twice.

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Leg update – amputation might be possible…

Be aware – gross ulcer photo below.

Just had a conversation with my GP. He’s been in touch with the vascular doc, who has said – this bloody obsession again – that compression is the only way forward. I told him, when he asked if I’d be willing to try compression and – these are my exact words – I said “I’ll suck it and see.” That’s all. No promises beyond that, just a willingness to try it and see what happened.

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Chronicles of the Heart – Poor medical advice…

As I reported yesterday, I was told to reduce my diuretic intake. I said this:-

The doc also told me I should stop worrying about my fluid retention and reduce my diuretics. Er, no. I’m sorry, but even if my heart isn’t the cause, fluid retention on the scale I have it is bad news – it can’t just be ignored. Nor is it going to be. Continue reading

Let’s all go to Africa…

As regular readers will know, as a result of severe lymphoedema, my right leg now sports an ulcer. As well as causing extreme pain, out of all proportion to its size, barely moderated by 220mg of morphine a day (Zomorph – modified-release caps – 70mg every 12 hours, plus Oramorph – liquid – 20mg morphine every 6 hours**), the ulcer is growing visibly day by day. This is not going to end well.

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Addison’s Disease – Another letter to my GP…

My GP has failed to respond to my letter of March 20 . This is my follow-up. Being tactful didn’t work, so let’s see what response the direct approach gets.

 

March 27, 2014

 

Dear Dr. Xxxxx,

This is a follow-up to my letter of March 20, as the situation remains unresolved.

I know I have Addison’s Disease, as I said, and I have to ask why I am not being treated in accordance with NICE guidelines or those of the Addison’s Clinical Advisory Panel? It’s an issue I would have raised earlier if anyone had actually told me I have Addison’s. This time last year I was told in APH I had adrenal insufficiency which, at the time, meant nothing (the hydrocortisone indicates Primary Addison’s). No further information was forthcoming either then, the other two occasions I was admitted last year, or, indeed, at all.

For the past year I have had the bare minimum of hydrocortisone tablets which leaves me zero scope when it comes to dealing with, and hopefully preventing, an Addisonian crisis. The Addison’s Clinical Advisory Panel recommends prescribing 6 months worth of hydrocortisone tablets, to ensure that the patient does not run out (and, of course, has ample for emergencies, which I do not).

I have little doubt that, had I been able to follow the NICE guidelines, my lymphoedema might well have had a less devastating effect on me than it did but, of course, I wasn’t able to.

Currently I have injured my right leg. Because of my lymphoedema, what should have been a minor injury, and merely inconvenient, has become extremely painful and disabling and, acting on the NICE guidelines I have increased my hydrocortisone appropriately, which has helped. As the skin is broken I am taking 500mg Amoxycillin t.r.d. (I have my own stock, as you know), as prophylaxis – I do not need another infection. This, however, should be supported by doubling my hydrocortisone intake. I did this for 2 days – I do not have enough to continue unless I can be sure of getting what I need. I am sure it would have helped last year, too, when I had to take quite a lot of antibiotics. And, of course, I need them to treat COPD flare-ups.

I am a member of the Addison’s Disease Self-Help Group (http://www.addisons.org.uk/index.html ), and, as recommended, I have my own injection kit – I have even arranged for scheme manager, here, to inject me should I be unable to do so myself, though I have nothing to use in it yet, of course. I hope I won’t need it, but better to have it and not need it, than not have it and die.

I live alone, as you know – should I be struck by a crisis, injecting myself is my best chance of survival – the administration of hydrocortisone, tablets or injection, is highly time-sensitive. As it is pre-mixed I believe Efcortisol is the best option, for ease of administration (the Addison’s Clinical Advisory Panel recommendation is 5 vials).

I have a MedicAlert bracelet listing all my conditions but giving prominence to Addison’s. And I carry a steroid card on the rare occasions I am able to go out.

I have, in fact, everything I need, especially information, with the exception of sufficient steroids to allow for the possibility of surviving this condition which, as I’d hope you’d be aware, is far more dangerous to me than it would be to someone who is normally fit and well.

I am at a loss, therefore, to understand why I have not had a reply to my letter of last week. And why, indeed, I have not been issued with adequate drugs – hydrocortisone in tablet and injectable forms. Their use is, after all, standard procedure in Addison’s.

This really does need resolving very quickly – with the minimal hydrocortisone I’ve been on, I could have died at any point over the past year. Given how extremely ill I’ve been, it’s probably just dumb luck that I didn’t tip over into a full-blown Addison’s crisis. I still could.

That risk still remains – it has to end.

Yours sincerely,

 

Ronald W. Graves.

Nurses and Hygiene – and brutality…

As I said a few days ago, in this post, I intended to take issue with the nurses – especially the staff nurse – over their iffy hygiene. So, on Monday, I did.

There were actually two problems, one hygiene-related and this one, which is just dumb.

By early evening, last Friday, the dressing that had been changed in the morning was causing so much pain I had to remove it. The problem was that the Aquacel pad had been folded as it was too big and no-one had any sterile scissors. Why nurses would be without sterile scissors, or  why they couldn’t have done Continue reading

Are you adequately hydrated?

Because I have heart failure, and Lymphoedema,  I take diuretics. What a lot of people don’t realise is that, when taking diuretics, you need to increase your fluid intake.

This sounds counter-intuitive when you’re peeing every 20-30 minutes and, indeed, many people get it wrong and cut their fluid intake, but unless your intake exceeds your output, you can become dangerously dehydrated – I know, I’ve been there. It was part of what Continue reading