Bilateral Lymphoedema Returns…

On Wednesday morning, the nurse was horrified by the state of my legs, and phoned the GP surgery to tell them I needed an urgent home visit.

I didn’t get one – I got a phone call instead.

In three years none of my GPs have ever seen my legs – they refuse to look at them because, to quote one of them “They’re horrible!” – I wonder what they think it’s like to have to live with them? With the blood, the pain, the suppuration and the stink? They have no real idea of how horrendous that is. And they sure as hell can’t comprehend the pain.

Anyway, at least I got the senior partner, with whom it’s possible to have a sensible conversation, on the phone, and he sent antibiotics round – Ciprofloxacin – arriving a day later than promised** by which time my left leg had burst, paving the way for invasion by opportunistic infections. I’ve no doubt that my equally swollen right leg would have burst had it not already had a gaping hole in it (the ulcer).

**I’ve just been on to the pharmacy chasing up my main morphine script (the surgery tell me that it’s been awaiting collection by the pharmacy, which is in the same building, since yesterday morning! The pharmacy say they’ve been in half a dozen times and it wasn’t there – you really couldn’t make this shit up.

The leakage – high-protein lymphatic fluid – requires a high-protein diet to compensate for the losses, and luckily I have just made a high-protein version of Caldo Verde, which you can find here.

Why has my Lymphoedema returned so dramatically? The blame rests squarely on the ambulance service who, when evacuating me to hospital recently, refused to take my wheelchair, claiming lack of room in the ambulance (in the event there was ample room**), and only slightly less so on the hospital, where I was refused permission to leave for half an hour, once I had a bed, to come home and fetch it. As I had no money and no phone I needed them to send me home at their expense, though I offered to reimburse them. In future ample money will form part of my hospital kit. I will not be trapped again.

**I am, by any measure, a small person (165cm tall with, these days, no muscle mass to speak of). My manual wheelchair was made to fit me and is equally small. It also folds. It could have been taken in the ambulance, there is no excuse.

So, in hospital I was forced to walk to the toilet a dozen or more times a day (the frequency caused by my diuretic plus diarrhoea from the antibiotics), and asking to be taken, or for a bottle or commode, would, as I know from experience, have resulted in an inordinate delay – not helpful when my ME causes double urge incontinence. And it was the walking that caused my legs to swell again (at home I’m a wheelie), until Wednesday night, when the pressure finally proved too much and broke through.

Oh yes, and the fuckwit doctor referred to in this post told me that because I could walk (though very slowly, with crutches and only with extreme pain), I really didn’t need a wheelchair! I asked her if she would willingly subject herself to pain that was so far beyond severe it was another universe, when there was an alternative. No answer. I don’t think she even understood the question.

And some of you wonder why I fucking hate doctors!

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9 thoughts on “Bilateral Lymphoedema Returns…

  1. It is getting harder to comment on your horrendous journey with your local Health Service, as you said you can’t make this up. I know it happens (albeit with a less dangerous outcome) as I had exactly the same incident re Drs & Pharmacy yesterday with my daughter who after a week of this run around (4 day closure in this) my intervention resulted in no more pain meds until she’s seen by pain management – end of week), outcome 2 weeks without any medication for her pain!!

    I hope the ulcers clear as quickly as poss xx

    • No way can that be justified – but just who one complains to these days I haven’t been able to find out. And, of course, if we did complain we’d wind up getting dumped from the list.

      Luckily I have a stash of morphine capsules from when my GP kept meddling with the dose last year. I had a stash of Oramorph, too, but that’s been whittled down as every prescription is delayed. Still, at least the prescribing is now in accordance with the protocol, my GP having apparently been overruled by his colleagues.

  2. Ive been having problems too getting my Ventolin spray. the generic one they started giving me gradually made my breathing worse ,over say, a month i think it was. i asked for the proper Ventolin one not the pretend one. was told it was there on my prescription and the girl on the end of the phone ticked the right one. not the generic one that was lower down for some reason.i got it that time. but next time i tried to make sure i got the original and was told the new pharmacy manager was refusing to give the Ventolin branded one. could only have the generic one.was told the Dr had to put it specifically on my prescription. so rang Dr’s. spoke to the Asthma nurse who told me that they couldn’t make the pharmacy give me the branded one.was up to them/ landed up with her suggesting i try one of the other 3 chemists in our little town.which i did. yes i could get the branded one from the next nearest to my Dr’s but their delivery service is done by a volunteer, not NHS paid driver.and is whenever he can get into the shop to collect prescriptions etc and take them out. so. rang back the doc. told reception who said ok. we will get another prescription made out and sent electronically to chemist #2. fine. we were on the Easter hols by this time. so first thing Tuesday morning after the hols, i rang chemist#2. yes they had the prescription but only for the branded Ventolin.. no other items i had ordered. so rang chemist #1.yes they had the other prescription for the rest of my meds. now they normally tell you when they can deliver and if am or pm.which is 1 reason why i used them,plus its within the health centre my Dr’s surgery is in so no trying to walk to chemist#2 in icy conditions in winter.. therefore more reliable in this but as i had to go into town the following day i opted to collect them both.. so.taxi to chemist#2. walk to chemist#1. then another walk ,carrying a load of meds into the town. For able bodied people not that far. but for disabled,it added onto the normal short walks between shops for me. plus. chemist#1 had given me the branded Ventolin after all. so all those phone calls, extra walking etc was not needed. talk about putting folk out. grrrrrrrr. i await to see what happens next time.

    • My GP has prescribed Ciprofloxacin, an antibiotic. Apart from conflicting with about a third of my meds, and contra-indicated for several of my conditions, the PIL says that if I experience “completion of suicide” I should stop taking it. Hmm. . . A tad late by then.

  3. i am so sorry Ron. but if it wasn’t so serious it would be funny. i had to have a giggle at the stupidity of these people. supposed to be intelligent too. same as the antidepressants i was once described…hate the things anyway.do not like not being in charge of my mental state plus no need for them as it was others getting me down not my brain going do lally pip.. looked at leaflet. first side effect.. may cause suicide……. great/ doc got those back on his desk intact next time i went near the surgery i can tell you.

    • The number of antidepressants that list suicide or suicidal ideation as a side-effect is pretty damn scary. 1988 my shrink prescribed one that, he said, would change my perception of pain. It didn’t, but it did completely change my personality and came close to tipping me into the darkness.

  4. The problem with the wheelchair service and their refusal to take wheelchairs is something I’ve experienced. I can’t walk, and have a very small transit chair that I use indoors, which I push around with my feet. It’s easy to use, manoeverable, and gives me independence. (I have a powerchair for outdoors) Every time I go to hospital by ambulance I have to leave the chair behind, as they have ‘no room’ for it. Without it I am completely stuck, and need ten times the nursing I’d need with it! Then I have to ring someone to go and fetch it for me. They wouldn’t ask an amputee to leave their legs behind, well that chair is my legs.

    The other thing they make me do is get out of my nice comfy chair and sit on that very uncomfortable ‘chair’ that they have. They insist I put my feet on the foot bar, where my feet don’t want to go because they don’t bend that way, it really hurts!

    Glad to see you back Ron!

    • I have a holdall with my hospital kit. Because there’s no-one available to bring anything in for me (the “friend” who I used to rely on has vanished), I take enough for a month. That’s got to change to whatever I can fit into a wheelchair backpack (no PJs, no dressing gown – hospital can supply, just toiletries and electronics).

      Then when the ambulance arrives I’ll be in my chair, bag on the back, and I’ll refuse to get out of it.

      One of my neighbours is a double amputee (legs) – they don’t deprive him of his chair and make him use his prostheses, and my need is just as valid

      Update a couple of hours later:-

      I’ve managed to fit a 45-litre rucksack on the seat back (attached to the mini push-handles, it sits neatly between my crutch holders). Adding an underseat bag at the front for heavy stuff will help balance the weight and add a little capacity.

      In terms of electronics I’ll want my phone, my 3G tablet (for Twitter and email), and a pair of well-stocked duplicate Kindles so that when one’s charging I can read the other, plus a bunch of battery packs and chargers. And my rechargeable tyre pump.

      That should do it Hopefully I won’t be in long but I’ve thought that before and been stuck there for 6 weeks.

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