Posts tagged 'Acute Myeloid Leukaemia (AML)'

All dressed-down and nowhere to go

Posted by on April 30th 2019 in Health, or lack thereof
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Time for a short update... my conditioning treatment has finished and I'm now confined to my room on the BMTU because I have no infection resistance whatsoever - not just no neutrophils, but no antibodies, no T-Cells, no D-Cells, no Triple-A Cells, no Splinter Cells... you get the idea.

Let's hope that my generous MUD Donor makes it through the harvesting process - I know it's unlikely that the process won't complete, but me and "the unlikely" have a bad habit of meeting head-on far too frequently.

Fingers also crossed for whoever gets the job of transporting the harvest from there to here ASAP - I'll be prepped and waiting sometime from mid- to late-afternoon, so I've been told.

It's going to be a testing and interesting May Day - I think a hearty Fried English will be ordered at first light.

 

Half Man Half Hickman

The Tomorrow People

Posted by on April 17th 2019 in Health, or lack thereof, Just for fun
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Well, I attended Glenfield Hospital yesterday for the heart function check. I passed that OK... contrary to the specialist nurse's opening gambit of wanting to up my daily dose of Ramipril and start me on beta-blockers (and possibly statins) it turns out that my heart's in good enough nick to proceed to SCT so they're not going to mess about with the current drug regime.

Today I attended Glenfield Hospital again, at stupid-o'clock in the morning, for the bronchoscopy. I explained that I have had no symptoms of lung infection since the CT scan weeks ago, that my infection markers were still right down, and that I was feeling in fine fettle. Suffice to say that they did the bronchoscopy anyway and now my lungs hurt, my throat's in tatters and my eating ability is trashed. As predicted yet totally avoidable, IMHO. Results are pending but I think we know what the outcome will be.

While I was wandering the broncho unit recovering from the sedative and from the local anaesthetic I got a call from LRI... an appointment has been made for me to go for a "missed off the to-do list" breathing/lung function test tomorrow, and guess what... yet again it's at Glenfield Hospital and yet again it's at stupid-o'clock in the morning. Incredibly, they really do want me to go for a breathing/lung-function test less than 24 hours after having my lungs and airways aggravated by a camera on a bendy stick! I was so angry but I was unable to talk clearly - I had to hand the phone to Chris so that she could talk sense to them.

Back home and the phone rang again... it was LRI again... an appointment has been made for me to have a "missed off the to-do list" Bone Marrow Aspiration at LRI and guess what... that's tomorrow morning too! After the breathing/lung function test we're expected to jaunt from one hospital to another in the blink of an eye.

So... FOUR out-patient appointments within FORTY-EIGHT HOURS at TWO hospitals over THREE consecutive days... whoever "planned" that lot needs to be introduced to the simplicity of Gantt Charts.

In case you missed it in my previous post...

the whole process has been "planned to within an inch of my life".

Yeah. Right. If you count "planning" as "shoe-horning everything in before the Easter weekend".

My period of respite is swiftly becoming a period of spite.

Mayday! Mayday!

Posted by on April 13th 2019 in Health, or lack thereof, Just for fun
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The game's afoot... a suitable, willing and generous MUD (Matched Unrelated Donor) has been found and a date has been set for my Stem Cell Transplant. I'm told that the HLA "match" between me and my MUD is 10/10. I've also been told that my MUD is male, 24 years old, living in the UK and that we have different blood groups (he's B Positive, I'm O Positive).

On Tuesday 9th April I attended the "work-up" appointment where I was checked over and when the conditioning and SCT processes were described in great detail. To quote the Red Team consultants, the whole process had been "planned to within an inch of my life".

Well, within seconds I'd found a gaping wound in the plan, which had me attending Hambleton Suite on April 22nd for a Hickman Line insertion swiftly followed by admission to the BMTU for the start of conditioning chemo. Odd looks were exchanged when I asked if Hambleton Suite would be open for business on Easter Monday. As I suspected, based on my experience of Bank Holiday closures in 2016, the Suite will be closed for the Easter Monday Bank Holiday.

The knee-jerk reaction was to have me attend Day Ward on Easter Monday to have a temporary cannula inserted for the first day of chemo. I vetoed that immediately - I'm not the easiest person to cannulate and I've seen the damage that can be done when chemotherapy drugs leak from a poorly-located cannula.

Suffice to say that their latest plan has both the Hickman Line insertion and the start of chemo scheduled for Tuesday April 23rd. Yes, that's St. George's Day - not a Bank Holiday here in England despite many a campaign. But at least the Hambleton calendar now has Easter pencilled in. I wonder how many other clinic appointments they have had to change due to the oversight of something that has been a calculable date for nigh-on two millennia.

Oh, and some of my "few days of respite at home before kick-off" have been claimed back by the NHS - I'm to attend Glenfield Hospital on Tuesday 16th April to have my heart function checked, and again on Wednesday 17th April to have my lungs checked (yes, I cut them some slack regarding the bronchoscopy - now they owe me). Sometime before Easter I should have a breathing test and another bone marrow aspiration but so far there's been no word as to when they will be. I reckon they'll be out of time before I'm out of breath.

Anyway, the rest of the plan seems OK to me. I will be on the "FluBu" conditioning regime... Fludarabine 23rd - 28th April (was 22nd - 27th April), Busulfan 23rd - 25th April, Clonazepam 21st - 28th April, Thymoglobuline 25th - 30th April, Stem Cell Transplant on 1st May.

It's a good job I don't fast during Lent - starting on Tuesday 9th April I'm supposed to be getting through two of these bottles every day for at least a month:

 

Forty Fortisips

Been there, got the tee-shirt

Posted by on April 1st 2019 in Health, or lack thereof
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We've been there before... a few spiked temperatures, raised infection markers, and a CT scan that might indicate that there might be a fungal infection in my lungs.

And here we are again. Despite there being no coughing, no wheezing, no discharge and no audible indication via stethoscope, a couple of days ago they said that they want me to go for another bronchoscopy and they wanted to ply me with IV anti-fungals.

Back in 2016 the fungal infection never revealed itself despite being hunted via x-ray, CT scan and then bronchoscopy biopsies. Maybe we scared it away? Or maybe the anti-fungal pills worked? Or maybe, just maybe, my own body dealt with it as evolution intended. Whatever the reason, the procedure caused irritation of my trachea, larynx and pharynx, and ripped the lining of my nasal cavity. All of that led to increased nosebleeds and at least 2 weeks added to my tariff. Just for good measure, I didn't react particularly well to IV anti-fungals.

I told the weekend docs that I'm not going through all that shit ever again. As a sort of "backstop arrangement" I was put on Voriconazole anti-fungal pills. Another change was how they dealt with the temperature spikes - no more paracetamol, just monitor and let my body try to deal with it.

And now here we are, a couple of days later. Infection markers down, not spiked a temperature for two days.

Go figure.

Gender reassignment

Posted by on March 29th 2019 in Health, or lack thereof, Just for fun
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Ward 41 is a mixed-gender ward with 21 beds - 5 in single rooms, and 4 in each of the 4 bays. Usually the male:female ratio is such that there are 2 male and 2 female bays, but on Saturday the ratio was such that the staff had to do a bed-shuffle. One of the bays usually reserved for females was reassigned to males, and was populated accordingly.

But a few days of being teased for being stuck in such a bay can have strange effects on a man. Much to the amusement of the staff, here's what it had done to us by breakfast-time yesterday:

 

Simone, Andrea and Stephanie. Pink nighties courtesy of Leicester Royal.

 

A bit of slutty lippy, just for good measure.

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.
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