Archive for the 'Health, or lack thereof' Category

Scraping the barrel

Posted by on March 19th 2019 in A bit of a rant, Health, or lack thereof
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The platelet fiasco continues...

Remember Wednesday, when my platelet count was 14? When I needed an infusion but someone had forgotten to order anything?

Remember Thursday, when they managed to get me a bag from Sheffield, and said that I'd need more within the next day or so?

Well, they didn't give me any on Friday, as Thursday's bag had boosted my count to 32, but they said that I would need some more soon and would order some for Sunday.

On Sunday the count was down to 17 but no platelets were forthcoming.

Monday, and more of the same... count even lower at 13, but still no infusion.

And today, Tuesday, at about 06:30, they took another sample. I wasn't told the results until a full 12 hours later and I think I know why - the platelet count was 6. That was 6 this morning, it could well be down to 3 by now. And again there's no evidence that any timely order was raised. LRI's blood-bank have nothing for me. If we'd had the results by, say, noon, we could have sorted the issue with minimal fuss, if Sheffield had any suitable HLAs then they could have been here and in by now. But no, that would have been too easy.

I fail to see the point of taking samples on a daily basis, testing them on a daily basis, and then ignoring the context of the results on a daily basis. It's a terrible waste of time, effort and funding for everyone involved.

I'm getting testy again. Stern words are being had - I'd bite my lip but that could have disastrous consequences. I'm told that another urgent order has been raised, until then I have to grin and bear it until the blood-biker gets here. They are giving me a dose of TXA to get me through.

Could be an interesting night.

On the move

Posted by on March 19th 2019 in Health, or lack thereof
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A chair arrived with a porter attached to it. My ride to the heart test. Sadly no ride in the ambulance, they did the test here at LRI.

When I got back my bed, cabinet and belongings had been moved to a different room - they were having a reshuffle. After rearranging everything so that it became possible to run to the ensuite crapper without hitting the pedal-bin and/or the cabinet, I lay back on the bed for a short rest, staring at the ceiling.

Only then did I notice the smoke detector:

 

 

Nobody here knows why it is taped or who did it. They have called the maintenance team.

In the meantime I'm not to start camp-fires, vape, or use the disposable BBQ.

Spoil-sports.

Life moves pretty fast

Posted by on March 18th 2019 in A bit of a rant, Health, or lack thereof
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Three associated hospitals sharing the same digital information... I can't believe that "the system" is telling Glenfield Hospital that I'm an outpatient when I'm an inpatient at LRI.

Please stop phoning me, Glenfield. I can't confirm that I will be attending the appointments that you have made for me, and I can't help you to arrange more. LRI took that responsibility from me when they gave me a bed and an ID wrist-band yesterday. It's all "on the system" if you care to look.

Life moves pretty fast. If you don’t stop and look around once in a while, you could miss it.

As predicted

Posted by on March 17th 2019 in A bit of a rant, Health, or lack thereof
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Two days ago: "... I suspect that they will find a reason to admit me on Sunday after the check-up results are in."

Sunday: admitted to Ward 41 after a seven-hour wait in the Osborne Assessment Unit, platelet count way down at 17 × 109 cells/L (Normal: 140–400 × 109 cells/L), neither sign nor hint that there are any matched platelets on-site for me.

And now I'm told that I need an MRI scan in addition to the heart test/scan and the breathing test.

Add to that the fact that the Ward Sister can't figure out why I was prescribed Ranitidine pills... as far as we can determine, it was to protect my digestive system from the effects of the steroid treatment that I was having for inflamed heels... but that treatment was Hydrocortisone cream... topical, not oral!!!

This could be a busy week. Plenty of nonsense to get sorted out, plenty of faith in need of restoration, and plenty of rides out in the ambulance. Probably no "blues and twos" though.

Image supplied by CJR.

A tad testy

Posted by on March 15th 2019 in A bit of a rant, Health, or lack thereof
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Back at Day Ward today, platelet count 32 × 109 cells/L (Normal: 140–400 × 109 cells/L), hopefully they will be enough to see me through to Sunday (yes, Sunday) as they didn't give me any today. I have no idea if they've ordered any platelets in advance, but I'm going to need them.

Throughout the day I've been fielding calls from Glenfield Hospital telling me that I have appointments for tests next week... the first call was for a heart test/scan. It took me a while to realise that this wasn't another periodic follow-up check related to the angioplasty/stent operation that I had a few years back. They wanted me in next Monday for that, but at the time of the call I was still scheduled to be in Day Ward at LRI on Monday, so I asked them to work it out with the LRI Haematology Red Team.

Then another call... a breathing test. They wanted me in next Tuesday for that, but at the time of the call I was still scheduled to be in Hambleton clinic at LRI on Tuesday for "The Big Pre-SCT Chat", so they said that next Thursday would be OK.

Somebody in the Red Team had pressed the Big Red Button to start the ball rolling for SCT, but nobody in the Red Team had bothered to tell me beforehand.

No surprises there, then. Thanks a bunch.

To be fair, one of the Red Team consultants did take me aside a few hours later to explain the situation, but it would have been far better to have been told before the calls started coming in. Forewarned is forearmed. At the moment life is complicated enough without all of these calls out of the blue.

And I still don't know if I have to be back at Day Ward on Monday. I'm only guessing here, but I suspect that they will find a reason to admit me on Sunday after the check-up results are in. If they do, they can have the pleasure of sorting out all of the surprise appointments and arrange transport etc..

Doctor’s orders

Posted by on March 13th 2019 in Health, or lack thereof
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When I went to Day Ward on Monday they put in 1 bag of platelets and 2 bags of reds, and was told that I would need more platelets on Wednesday (today). As I always do, I reminded them that I need platelets that are HLA-matched (collected by apheresis from specifically-matched donors), which usually take 2 days to get from the Histocompatibilty & Immunogenetics Laboratory in Sheffield, so to get them for today they would have to order them on Monday.

I went back to Day Ward today, in real need of those platelets (the slightest knock is causing bruising, I dare not risk even a paper-cut) and indeed the results of this morning's blood-test confirmed a dangerously low platelet count. The duty doctor discussed it with me, then she went off to "look on the system" for my pre-ordered platelets.

But there were no matched platelets ready for me, and nobody could find any evidence that a doctor had raised an order for them on Monday.

As you would expect, I really "lost my shit" - the need for HLA-matching is written/printed through my records like letters through a stick of seaside rock. It has been three years since I started needing pre-ordered HLAs, and that need doesn't just go away. Having "pooled" platelets from the local blood-bank, while convenient, is not an option - for me they could be lethal.

After wasting today, I'm expected back there tomorrow, as they reckon that they can get some via some sort of emergency service. In short, they want someone on a motorbike to bring them down the M1 through Storm Gareth. I wouldn't fancy being that someone.

Just to compound the mess, I'm supposed to be on a 2-day cycle in Day Ward, which means that if I go in on Thursday it's likely that they will want me back in Saturday. I've told them that they can stuff that idea, I have better things to do. Not only is Saturday the final day of the 2019 Six Nations Championship, but we're doing our best to look after Chris - she needs our support as her Mum passed away earlier this week.

So, as I see it, they have 2 options...

1: Order enough for Thursday to last me until Monday;
2: Order some for Thursday and some for Friday.

Whichever option they take, I'll need more on Monday.

Of course, a lot depends on availability - if none of my limited pool of compatible donors has donated platelets since Monday, I'm pretty-much stuffed. Platelets have a typical shelf-life of about five days after transport/testing/washing/irradiation.

Meanwhile, the chemo has intentionally (and hopefully temporarily) stopped my own body's ability to make its own platelets for the next week or two, so without a donation my platelet count will probably be near-enough zero by this time tomorrow.

If you're thinking of becoming a donor, or if you're already a blood-donor and fancy upping your game, please click the following image:
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