Archive for March 2016

Kicking AML’s Ass: Cycle 2 – A strange twist

Posted by on March 31st 2016 in Illness and injury

I went in for the out-patient appointment today. I was expecting to be sent back home for a few more days, but not for a whole week...

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I certainly wasn't expecting to be taken off all of the antiviral, antibiotic, antifungal and other protective medications too... all so meticulously prescribed and dispensed a week ago. So no more of the following:

A week ago they had already whittled-down the list by removing the following:

That leaves me with just a few skin lotions, some Paracetamol and a couple of boxes of Niquitin. I'm no expert, but I don't think that they will be enough to break the lines of Mordor fend off the nasties before chemo cycle 3 begins.

Hey ho. I'm appointed to be back in as an out-patient next Thursday. If they have caused any problems they can sort them out then.

Kicking AML’s Ass: Cycle 2 – And on the third day*…

Posted by on March 27th 2016 in Illness and injury

... they conceded that I hadn't had sepsis and agreed that my reaction was due to the poorly-matched platelets, so they are sending me home.

Pending today's blood-test results, of course.

I'll wager that they could find something there to keep me in if they tried hard enough, but I don't think they would dare to look that closely.

Back in for an out-patient appointment on Thursday, time TBA, I am to wait for a phone call to tell me when to be there.

*  Easter Sunday, 52nd day of Cycle 2, 43rd day post-chemo.

Kicking AML’s Ass: Cycle 2 – HLA-mismatch

Posted by on March 26th 2016 in Illness and injury

Rewind to Thursday... Day Ward as previously arranged. In for a platelet infusion. Theoretically a routine "in & then home" job...

This visit didn't follow the usual pattern. I wasn't send down to Phlebotomy to give a blood sample prior to having the infusion, and Day Ward didn't do the usual temp/pressure/sats/rate observations either. Specifically, comparing platelet counts from both before & after an infusion is the accepted way to ensure a valid value for the platelet increment, an indicator of how many platelets stay in and don't get rejected. I pointed out those omissions three times before kick-off, but nobody did anything about it. After yet another cannula insertion (right elbow), they just got on with the infusion process. The platelets were HLA-matched (from Colindale), so in theory I wouldn't need to be pre-treated as I had been before. Nevertheless I was given a shot of Piriton beforehand just in case.

It all went in well, so after the infusion had finished they took some bloods (for the "before & after" comparison which was doomed to failure because of the pre-infusion bloods omissions) and removed the cannula. Then, 30 minutes after the infusion had finished I started shaking and baking again. Spiking at 39C. With nausea and vomiting just for added excitement.

They wanted to gave me a shot of something IV and to take some bloods but the cannula was gone. They had to put another one into the right elbow, that one too was removed after use. They were treating me for phantom sepsis again, they still were not seeing the familiar pattern in their records being repeated before their eyes.

The S&Bs had abated an hour or so later but they kept me under close observation for a further few hours before telling me that I'd be admitted as a precautionary measure. I had to wait a few hours more while they found me a space on the Osborne Assessment Unit where they put in yet another cannula (left elbow) so that they could give me some IV Tazocin and an 8-hour 1l bag of saline to start at about 1 a.m..

Sometime in the early hours they put another cannula into my right elbow, I think it was to take bloods but I was too tired to pay much attention.

At about 9 a.m. when the bag had finished the saline cannulation site looked like this:

Plenty of saline under the dressing, plenty of blood under the dressing and leaking from the cannula entry and from the extension tube union. It was worse 3 hours later, I had to insist that it was all removed and cleaned up as it was putting me off my lunch. By then the extension tube had unscrewed and the cannula was open. Earlier, the other cannula (in the right elbow) was found to be dislocated and had to be pulled.

When the docs arrived during their Good Friday rounds I was told that I'd be kept in for 48 hours due to their perceived risk of sepsis and that I would need more IV treatments for sepsis during that time, and therefore at least one more cannula would be required. They weren't expecting the resounding "NO!" as I withdrew consent for further cannulation, and recommended a PICC line to replace the one that they really shouldn't have removed back on the 14th. I sent them away to review their options, and eventually they relented and started non-IV alternatives. We agreed certain conditions... oral antibiotics so long as my temp and obs were all "in the green", but anything critical and I would allow essential cannulation only if a PICC line could not be arranged.

Late on Friday they transferred me up to the now-familiar Ward 41, where the nursing staff were gob-smacked by the whole affair. I've been advised that someone will be formally reporting the bad cannula episode.

It's now Saturday and as I expected my temps and obs have all been "in the green" since the 48 hours of monitoring started. No signs of sepsis or other infection, feeling fine. Slight nosebleed (now stopped) but they don't have any platelets in stock for me so that's a good thing.

So, only 3 more days of my life wasted... so far. The are keeping me in tonight as well, so make that 4. That won't make me any happier.

Kicking AML’s Ass: Cycle 2 – there and back again

Posted by on March 22nd 2016 in Illness and injury

Day Ward... Tuesday morning. Today. Blood tests and all that malarkey.

As predicted (by me) the tests indicated that I need more platelets. The docs didn't predict it (despite all of the trends of evidence at their disposal) and therefore didn't order some in advance (i.e. yesterday) from Sheffield, Liverpool or wherever. I really did waste today just being told to attend again for platelets on Thursday.

As to the bigger question of whether I'll be in or out, I'm out, regardless of what my neutrophil count is (we don't know, for some bizarre reason they omitted that part of the blood-test ?!?!?!? ). Currently, Ward 41 is full of ill people.

Day Ward... it's called that because no matter how much or how little treatment or testing you need, it always takes up enough time to screw up your whole day. Today stands as testament to that.

Kicking AML’s Ass: Cycle 2 – hither and thither

Posted by on March 21st 2016 in Illness and injury

The phone-call didn't come, I had to make it myself. Still no word from the docs as to there being a plan, so I waited again for a call-back.

When it arrived, it was no surprise... be in Day Ward on Tuesday morning. Blood tests and all that malarkey.

No doubt I'll need platelets and/or reds. Reds are ten-a-penny from the onsite blood-bank, but if it's platelets I hope the docs had the common-sense to order some in advance (i.e. before tomorrow) from Sheffield, Liverpool or wherever. I really can do without wasting tomorrow just being told to attend again for platelets on Wednesday.

As to the bigger question of whether I'll be in or out, that depends not only on the blood test results but also on the availability of bed-space. Currently Ward 41 is full, with many other potential in-patients awaiting their turns.

Day Ward... it's called that because no matter how much or how little treatment or testing you need, it always takes up enough time to screw up your whole day.

Anyway, it's a well-known fact that Birmingham has more miles of canal than Venice. Less well-known is that I've had more miles of cannula than Birmingham:

Actually, that pic's probably a good representation of how I'll be sticking it to the junior docs if they don't get their act in gear.

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

Posted by on March 20th 2016 in Illness and injury

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 Illness and injury

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)

A jewel to play with your mind

Posted by on March 9th 2016 in On the box

Just finished watching Amazon's "The Man in the High Castle - Season 1". It was excellent, a real brain-twister for the first nine episodes and then an unexpected ending to the tenth. Not quite the style of ending that bemused folk who watched the Coen Brothers' masterpiece "No Country for Old Men", but unexpected nevertheless. There's a second season due sometime in 2016, so it will be interesting to see where the plot takes us next.

That said, Amazon's "The Man in the High Castle" is only very loosely based on the novel by Philip K. Dick, and the storyline takes many major departures from his work. If you've only had the pleasure of one, I recommend both.

Only read the stuff where the links take you to if you're OK with spoilers.

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