Archive for the 'Health, or lack thereof' Category

Kicking AML’s Ass: Cycle 2 – out and about

Posted by on March 20th 2016 in Health, or lack thereof
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Rewind to Wednesday. The docs knew that I had to be out for an unmissable event on Thursday, so they started to prop me up with meds and bloods. Despite having had over two weeks of advance notice, it all started a bit late in the afternoon. I needed another bag of platelets, and you know how well that can go. I figured that the delay was because of the transit time from Sheffield, but no, it was more intriguing than that. A bag turned up and the infusion was started, with pretreatments that I shouldn't have needed for HLA-matched stuff. I wasn't as alert as usual, and the bag content was half in when I sussed that it was the second bag from "Dodgy Sunday", and that a certificate had been obtained declaring it to be a "B2" match, IIRC.

It didn't take long for my temp to start rising. No S&Bs this time, but well over 38C so clearly not a great match after all.

Then a surprise present... I needed reds. 2 bags. Over 4 hours minimum. I was eventually discharged sometime around 22:00, still sporting a temperature as high as that which should trigger a call to the emergency line when recovering at home. I was to use my common-sense, and was expected to attend Day Ward on Friday morning as it was certain that I would need more infusions.

Fast forward to Friday and I was in Day Ward as instructed, overnight kit at the ready just in case. Blood tests indicated that I needed platelets but they had none that were suitable so Friday was a waste of a day. I was sent home with the instruction to attend again on Saturday, by which time the platelets would be available.

Saturday did indeed see me getting platelets. Seems like they couldn't find any suitable at Sheffield, the ones I was given came from Liverpool. The Day Ward staff inserted a cannula without encountering any problems and the infusion was a doddle, no raised temps, no S&Bs. During the clean-up I was asked when I'd be in again. I hadn't a clue, I had assumed that the plan would be unfolded on Saturday, but no. The Day Ward staff did some phoning around, but nobody knew what the post-Saturday plan was.

And so I went home without a plan but with plenty of time to watch the rugby.

I am to wait in for a phone-call on Monday morning, so I'll expect a call in the afternoon.

Kicking AML’s Ass: Cycle 2 – even more recovery shenanigans

Posted by on March 15th 2016 in Health, or lack thereof
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Rewind to Friday and Saturday. All was well, neutrophil counts were on the up and all was looking good for a Monday release.

Sunday dawned and blood-tests indicated a severely low platelet score of 15 × 109 cells/L (Normal: 140–400 × 109 cells/L). It had been dropping daily since the previous infusion on Tuesday which had given me a score of 63 (an upwards increment of 30 which indicated that the platelets were not fully rejected), so it was hardly surprising that the 8 a.m. breakfast started with a nosebleed. Naturally, I reported it to the staff who said that I would be given another platelet infusion.

Well, by the time the rugby started at 3 p.m. the platelets hadn't appeared and the nosebleed was still going. Back at the desk I asked where the my platelets were, as I was "in danger of drowning before I died of blood-loss". Turned out that the ward doc had forgotten all about it.

Said platelets appeared at 15:50 and were infused after pre-treatment with Piriton and Antihistamine, and the nosebleed eventually stopped at about 6 p.m. The line was left connected and unflushed for a further hour or so, awaiting a decision as to whether or not to infuse a second bag. Then I started to get the "Shake & Bake" thing again as my depleted immune system started to react to the platelets.

It's only been TWO MONTHS since they said that I would have to have HLA-matched platelets, so you can imagine how chuffed I was to be rejecting bog-standard stuff. The results were that I had the S&Bs for over an hour, my temp spiked at a dangerous 40C and they had to give me a shit-load of drugs to keep me going. IV Tazocin and IV Vancomycin were given and recorded in the Nurses' notes. I slept in a drug-induced state that night, and they didn't infuse the second bag of platelets because of the reaction.

Monday morning and the consultant arrived during his rounds. "Things are still on track to get you home early this week", he said. Well, I was a tad shocked. "Even after what happened yesterday?" I asked.

Awkward silence...

He'd not read the nurses' notes. His latest notes had me OFF the IV antibiotics, onto oral antibiotics and prepping for release.

The Monday blood-test results eventually arrived. Infection-markers sky-high at 50. All of a sudden it was of paramount importance to remove my perfectly-good PICC line because I was at danger of sepsis. Bollocks, I said, the infection-markers and high temps are saying that my body is rejecting the platelets. I know, because it had happened at least three times before and had been recorded in the notes. But the docs were having none of it. In their opinion the reaction couldn't possibly be due to the platelets. The PICC line was removed before the sepsis cultures were completed.

Which then created another problem, because the prescription system told the nurses to give IV antibiotics but the doc notes said otherwise, and there was no IV access.

Tuesday morning. Nurses confused. Docs confused. Bloods not taken (nurses could not take bloods due to no IV access, docs had not inserted a cannula, I wasn't on the list for the phlebotomist). Patient fast losing faith. not knowing who to trust.

Eventually I did get a cannula in on Tuesday. The junior doc took three attempts and gave me three belting bruises. Pics to follow soon.

Oh, and I clearly do not have sepsis, and am not being treated for it. Today my nursing observations are as good as they would be for any average man-in-the-street. If I went to my GP with BP/heart-rate/temps/sats like I had this morning, he would declare me to be in rude health and would send me home.

I may not be medically-trained, but I'm now 3 months into a 6 month stint and I am getting to know what's going on in my own body. There is one incontrovertible fact... I now have another nosebleed, possibly because the dodgy platelets only upped my platelet count from 15 to 20 (yesterday's count), which is not enough and which is yet another clear indication that they didn't "take".

I had suspected that they would soon give me another bag of unmatched shite, but just a few minutes ago I was told that they will be trying to source some matched goodies "from Sheffield". The chances of them finding a perfect match are understandably slim, but a close match should be good enough.

hag-tash Thrombocytopenia
hag-tash Platelet Transfusion Refractoriness
hag-tash Human Leukocyte Antigen (HLA)

Kicking AML’s Ass: Cycle 2 recovery shenanigans – updated 23/02/2016

Posted by on February 22nd 2016 in Health, or lack thereof
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Today the docs changed the plan again... I attended Day Ward this morning and the blood tests showed rock-bottom blood levels (basically Hb, newts and platelets were critically low or zero) and my "infection markers" were high, so they admitted me. Luckily they were in the process of reopening Ward 41 (Haematology) after the Swine Flu infection had been eradicated, so that's where I am now. I just finished consuming a 1 litre (8 hours) of bagged saline drip, and now they want to give me a platelet infusion because I have had a slow nosebleed for at least a week. But there's a problem - my body has rejected the last 3 platelet infusions, and when it does so it also rejects my own so I end up with none, but I still have an adverse physical reaction. I have been saying for two weeks that I need "HLA-matched" platelets, but the docs keep trying to shoehorn in some unmatched stuff with pre-treatment (Piriton and Hydrocortisone) and it just ain't cutting the mustard, I still end up with a platelet count as low as the chances of getting a bacon sarnie in this joint. You can Go Ogle "HLA-matched platelets" if you like, I can't find a decent link. While typing this, a doc has been in to tell me that he is going to give me unmatched platelets with pre-treatment. I politely sent him back to have a rethink, and he's now on the blower to the blood-bank. I can't wait to see what happens. You can bet my life that he won't pre-treat me with a bacon sarnie. Update 23/02/2016: They don't have any HLA-matched platelets yet, so they are going to try unmatched ones again to tide me over. IMHO it's a waste of platelets, but I'm not calling the shots. I fear it may be "tide me over" in the style of King Canute/Cnut. Also told that I'd be kept in for the rest of the week. And no bacon sarnies 🙁

Arse versus Elbow

Posted by on February 19th 2016 in Health, or lack thereof, Rambling on...
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Friday was spent in the Day Ward having bloods taken and tested, and having another bag of platelets put in. Neutrophil level still zilch.

Sent home.

When I had zero neutrophils during Cycle 1 it was mandatory that I be kept in because they needed to be monitoring me several times a day, the air was super-ultra-mega-filtered, and temperatures were tightly controlled. By "kept in", I mean in the ward. Going off-ward was a no-no while I had no "newts". Going outside was a danger akin to joining a leper colony. Home was an incredibly dangerous place to be, because of the risk of picking up bacterial, viral and/or fungal infections.

Now, with zero neutrophils during Cycle 2, I probably couldn't get admitted even if I contracted rabies and had been run over by a bus. Seems that I no longer need to be monitored around the clock, nor do I need super-ultra-mega-filtered air, nor controlled temperatures. Home has not changed, but Home is now good, together with the exact same risk of picking up the exact same bacterial, viral and/or fungal infections.

Seems that the required care regime has been edited to suit the circumstances and is suddenly much less directly related to the severity and consequences of the illness.

 

 

 

I do wish that they would start singing from the same hymn-sheet. One that has been agreed and approved by everyone in the loop. On Wednesday the doc said that he would admit me, but he was over-ruled by a specialist consultant and I was sent home with instructions to continue to attend Day Ward every day. This afternoon a different doc said that the daily visits to Day Ward would continue through the weekend and into next week, but she was over-ruled by a specialist consultant and I was sent home with a different plan - only attend Day Ward on Monday, Wednesday and Friday. Oh, and I'll be getting another 2 cycles of chemo just for good measure. They way things are going they won't have me in for the chemo, they will send it by post and I'll have to pay the local plumber to administer it via an implanted radiator valve and some old garden hosepipe.

I'm trying to keep a lid on my temper whenever they change the plan, but I'm not known for my tolerance of such shenanigans.

More details

Posted by on February 18th 2016 in Health, or lack thereof, In the News
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The Beeb now have hold of the story...

Leicester Royal Infirmary closes wards over swine flu.

Still no signs of the disease in yours truly.

Neutrophils now 0.00 again (as per Cycle 1), so no infection resistance. Was in Day Ward again today, was sent home yet again and was informed that the daily in-out would continue into next week.

Gratuitous mugshot

Posted by on February 14th 2016 in Health, or lack thereof, Just for fun, Pics
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Men Behaving Baldy.

Nick V-G., Uncle Fester and Michael N.

Photo by Nick.
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