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

Posted by @ 1:25 pm on Tuesday 15th March, 2016.
Categories: 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)

Related Posts Plugin for WordPress, Blogger...

6 Responses to “Kicking AML’s Ass: Cycle 2 – even more recovery shenanigans”

  1. alan.sloman says:

    FFS, Stef.
    If I were you I would be bouncing the bastards around the ward Sir.
    Get your lead consultant and give him chapter and verse. Do not take any prisoners. I had one similar glitch and a little Anglo Saxon did the trick.
    Good luck fella. ?

  2. BG! says:

    Originally Posted By alan.sloman
    Get your lead consultant and give him chapter and verse. Do not take any prisoners.

    No need, we have an understanding which has worked so far and will be made to work for the next 3 or so months...
    I cock up and he corrects me, they cock up and the system is incrementally improved for those who follow in my wake.
    Mistakes are opportunities for learning.
    I'm happy with that.
    Can you tell that I used to be a QA Mangler Manager?

  3. BG! says:

    Well, we have to be allies in the war against this festrous disease. Uneasy bedfellows, maybe, but that's better than fighting a war on two fronts.

  4. AlanR says:

    You have more patience than i would have. It all sounds very scary that the right hand isn’t sure where the left hand is located.

  5. BG! says:

    Originally Posted By AlanR
    It all sounds very scary that the right hand isn’t sure where the left hand is located.

    No worries there, I can educate them:

    Left... Right...
    Right... Wrong...
    Arse... Elbow...

Have your say - submit a comment

THE SMALL(ish) PRINT... (updated 23/07/2016)

By submitting a comment to this blog you grant me permission to reproduce its content and to reproduce the submitted name/URL in attribution. I will leave your content in its intended place and in its unedited form unless one or more of the following apply:

If you ask me to modify, move or delete your content, I’ll consider making the requested change(s) so long as there’s no significant alteration of the context of the content or of any debate associated with it;
If you change your email address or URL, I’ll update these details in older comments so that I'm not displaying dead links;
If I decide to change the theme or layout of this blog, thus affecting the placement and/or visibility of comments, I’ll make whatever changes I see fit for the smooth running of this blog;
If any comment contains insulting profanity or other content which I deem to be causing or likely to cause trouble, I’ll edit or delete as I see fit for the smooth running of this blog. I’ll try to remember to display the reason(s) for whatever editing I do, so that folk aren’t left hanging wondering what happened and why. If you can at least try to "disguise" your swearing, it would be much appreciated.

Other things to consider:

Comments must contain at least 3 characters;
You can use some code in comments, feel free to give it a shot and see what works;
If adding pics, the recommended maximum dimension is 600px.;
Comments containing many links will be held for moderation;
I reserve the right to amend this policy in line with proven applicable current legislation;
Free Speech: you may well have the right to it, but you've no right to compel me to a) listen to it, or b) publish it!