Still beset by incompetent doctors…

When I had my cardio appointment in September, I knew I’d be asked why I’d turned up in a wheelchair. This usually results in the whole thing getting off-topic, arguing with doctors who are utterly clueless when it comes to using wheels.

So this time I wrote a medical history, in chronological order of diagnosis, putting in red the conditions which have led to wheelchair use. I didn’t get involved in the same useless debate I’ve been having for the past 28 years – I just stuck it in his hand and asked him to read it.

This is it:-

Items in red all contribute to my being a wheelchair user. I was assessed and issued with my first NHS chair in 1986.

Bronchiectasis and asthma since age two, when almost simultaneous whooping cough and measles damaged my lungs.

FMS since my late teens (Dx Walton Hospital). Bad/severe pain in shoulders/neck.

Spinal arthritis (cervical spine) since my 20s. Profound discomfort rather than pain, and the noise can be deafening. Audible several paces away, apparently.

Osteoarthritis in left hip since age 32 (Dx Fazakerley Hospital and Birkenhead General). Now also in right hip. Massively exacerbated by…

Lightning Strike in 1983 which damaged many joints. My feet were also very badly damaged (the fatty pads, in the soles, that cushion the bones, were melted – or atrophied – opinions differ, so every step since has been like walking barefoot on a shingle beach). Pain can be extreme – it NEVER lets up.

M.E. since 1985 (Dx at RLUH 1996 – copy in APH file). Also a source of intransigent pain.

COPD since 1996 (Dx St. Cath’s), with onset of emphysema and Cor pulmonale.

Heart failure. Dx in 2011, (Dr. Leong’s team, APH, I believe), but never recorded on my file (of which I have an allegedly unredacted copy for that period). Subsequently confirmed by cardiologist Dr. Newall. Both COPD and the aortic valve problem (next), would predispose me towards heart failure and, of course the antecedents for the former go back to the mid 90s.

That I have symptoms of both right and left-side HF was explained to me at length during my last admission to APH, 14-19 August, 2014, with pulmonary oedema (a steadily worsening problem for much of this year). Despite this, and for reasons that elude me, Heart Failure Nurse Jane Egan denies it exists at all.

Aortic valve calcification & stenosis. (Dx mid 2011).

Angina, present sporadically since mid eighties. Getting worse. Oxygen-deficiency angina diagnosed at Stockport Infirmary, Summer of 1986 after Peak District rescue. GTN Spray – not on repeat list.

Bilateral Lymphoedema, present but mainly asymptomatic since 2005. Flare-up in 2012, and last year severity and pain were both off the scale, massively infected (ultimately with MRSA), and terrifyingly painful. While the infections have been cleared up (took over a week of i-v Vancomycin in November 2013), the pain remains. Right leg has large, and growing, ulcer just above the ankle, also extremely painful.

Addison’s Disease. March 2013, admitted to APH close to death after months of diarrhoea, vomiting and starvation (lost 35kgs) – all, I now know, symptoms of Addison’s.


Not exactly hard to understand, is it?

What the moron took from all that was that I’m a wheelie because “his legs hurt and he feels a bit weak” which is as insulting as it is crass.

And I never use words like “hurt” (or “sore”) – they simply aren’t descriptive enough. I tend to use “pain” or “painful” along with a qualifier for greater precision (if I say I have extreme pain, that is way worse than “a bit sore” for example), and “weak” doesn’t appear at all, FFS!

To add insult to injury I finally got a reply from my GP to this letter. Despite the fact that I detailed precisely what my problems are and what I needed to put them right, he says he doesn’t understand what I need and will I please explain – the subtext of which is “Three pages? Buggered if I’m reading that!”.

And that, boys and girls, is why medicine is a hobby that borders on obsession at times, because this is the sort of bullshit I’ve been saddled with since I moved to Wirral in 1984 – my very survival depends upon my being at least as well informed as my doctors, and better informed is desirable. Frankly, that’s not too hard, either.

6 thoughts on “Still beset by incompetent doctors…

  1. my legs have been swelling with fluid since last years hot weather. never really went down properly. not been as bad as last year mind but still not good. ran out of ferusamide ages ago as they were not too bad during last winter and have only recently got a bit worse. my doc had said he would prefer it if i didn’t stay on ferusamide. but now i think i do need it……….off to Drs in 40 mins time about it to be exact. but i am constantly being told i obsess about my legs my diabetes etc. when all im trying to do is try to stop any or all of my symptoms from getting worse.noy by my docs i hasten to othrs one of which has suffered from fluid on legs and leg ulcers since she was 18. i dont want it to get to that stage if i can help it.

    • You definitely don’t want ulcers! Mine now reaches over halfway round my leg.

      Talking of which I’ve been sent an appointment for the surgeon. Trouble is, I already have an appointment that morning – same Trust, different hospital! The surgeon is at 9.45 – not a snowball in hell’s chance of getting there at that hour and the other is at 10.15 6 miles away.

      The surgeon is the urgent one, but at a sensible time otherwise it’s just not going to happen – and it must!

  2. what is it with these hospitals? seem to send the earliest of appointments to those less able to get to them.
    result of my drs appointment… was a locum. asian woman. spoke good english so understood all i told her but i am guessing she was taking notice of letters from the hospital from 7yrs ago in which they apparently told my surgery that i HAD had a heart attack, yet told my daughter and i that i hadnt at my 6 week check. this was confirmed by one of my GPs. yet as iove said before, they are going by these letters (one of which states that i have had no FURTHER chest pains……….not surprising seeing as i never HAD any in the first place……….sooooo this locum tells me fluid on legs can mean 1 of 3 things. kidney problems, heart problems, and lack of exercise /sitting around too i had told her i did not get out as much as i used to. etc. and lived in tiny bungalow, a mile from had to use taxis.cannot now get myself up off a bus seat…. her diagnosis… heart treatment other than Bumetamide 1mg daily. blood tests in 2 weeks time for BNP and URE.. you might know what they are.i suspect a test to prove or disprove if i have got heart daughters convinced shes wrong.time will tell.

    • BNP is – if memory serves – a full blood panel. Ure will likely be Urea – kidney function check.

      You really need an echocardiogram (painless and non-invasive, if you’ve not had one), which will show changes to the structure of the heart and also the blood flow (or not), inside. If my experience is at all typical, results are subject to “interpretation” and not carved in stone. Still worthwhile though.

      And my legs were swollen while I was still active, so blaming inactivity is a bit of a knee-jerk response. Sitting with your legs elevated can help, as can raising the foot of the bed (blagging a clockwork bed is good if you can).

      There is more available in the way of treatment, ACE Inhibitors and beta-blockers, both of which ease the load on the heart are a good place to start. Is that your right email address? If so I’ll send you some info.

  3. so. the blood test will not actually show anything more than what was shown last July when i had my Hb1Ac done as they do a full blood count then including kidney function.. she already knows that was 61% back then.and has assured me it was ok, that needs to be between 60 and 90 ..90 being the best and usually the young and fit hit that… mine is what she would expect from a 72 yr she said.and not to worry about it.
    i do sleep with my feet/legs on 2 pillows. but because of my breathing and spinal spondylosis i cannot lay on my back for very long at all. i sleep in the recovery position changing sides if/when i need to get up in night. so they don’t stay on the pillows once i am asleep. don’t know which email address you’ve got Ron. where is it shown?if it has 71171 or the word tycoon in it then it probably is.

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