Archive for the 'Illness and injury' Category

Up and down like the Assyrian Empire

Posted by on March 26th 2017 in A bit of a rant, Illness and injury

Latest test results (from week 38 23/03/2017 test/consultation) plotted, so more boring blood-test result charts. I'm told that the results aren't important, so don't bother reading any further.

Unless you want to mouseover the charts to see how they look with spurious data removed, hence showing the real trends.

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So far only points for week 28 (12/01/2017) have been removed in the mouseovers. You might recall that I ranted about those results here. The serum ferritin result of 998 from week 15 (10/10/2016) has long been discarded as pure fantasy. With those dodgy results removed there are clear ongoing downward trends to the whites and the newts over the last 4 to 5 months, and the whites are now bang on bottom-limit. But it's not important, they say.

In my opinion, the latest value for the Serum Ferritin (499, week 38, 23/03/2017) looks to be, well, rather convenient, seeing as they were aiming for a target of 500, and the previous three values were 696, 643 and 642. And yes, I did tell them almost exactly that at the consultation, and I also told them that the previous week the blood-letting staff at LGH were quite concerned that their venesection protocol had ceased to be effective. Time will tell if I have to declare that result as dodgy, but for now I'm letting it stand as either a valid but surprising good result or as testimony to data creativity.

But it's not important, as they say.

Yet for some reason they have changed my 6-weekly checks back to 4-weekly.


Mental battle

Posted by on February 10th 2017 in A bit of a rant, Illness and injury

In case you'd not noticed, I like numbers and charts. They form patterns, patterns which form pictures each worth a thousand words. Keeping track of the numbers (the counts), noting their trends and learning their meanings, is one of the pillars supporting my determination to beat this festrous malady and then to hold it at bay. The more I understand something, the less I fear it.

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*** Warning! Paraphrasing in progress! ***

Way back in December 2015 the docs were saying things like "Your blood counts are the most important indicators of your progress, that's why we do daily sampling and testing", in January 2016 it was "Your counts are good enough to go home, but you can't do (insert any meaningful activity here)", and in February it was "You did what? On a train? Bejeesus, you shouldn't have done that, your counts are still too low!"

A month or so later the concept of context was introduced... "Your counts are better, but we have to consider them in context, and that context is bad so we'll keep you in for a few days."

Later still they said "Your counts are recovering nicely, so we'll start periodic testing and monitoring, keeping an eye on the all-important counts. Monthly for at least a year, starting in June 2016. It's immutable. Only then will we consider cutting you some slack and changing to two-monthly testing and monitoring. It's not up for negotiation."

From all that it's clear that counts are important. I was (and indeed continue to be) tested every day I was there, whether as an inmate, a day-warder, an ambulatory or an out-patient. Each and every decision included a consideration of the counts.

But yesterday, after I had queried the low counts which were not discussed a month ago, the story was...

"Your counts dropped but have now recovered. We have to consider them in context, and that context is good so we will ignore and not bother to explain the reasons why the counts were low. They are good today. You really do have to stop attaching importance to the counts. Swings of up to 20% are not causes for concern. Oh, and we're changing the immutable monthly testing and monitoring to six-weekly as of now, not May/June. As before, it's not up for negotiation."

So, in one fell swoop my coping strategy was left in tatters and my diary until June had been trashed.  And I'm still not supposed to do (insert many meaningful activities here). Cheers for that, it was a real morale-booster.

I won't burden the main blog with more boring blood-test result charts, from now on they will be segregated on their own page due to their alleged lowly importance. Suffice to say that last month my white cell count had "swung" from 5.2 to 3.6 x 109 cells/litre (a drop of ~31%) and my neutrophils had "swung" from 3.06 to 2.00 x 109 cells/litre (a drop of ~35%), clearly not within their newly-introduced "20% swing rule" and therefore justifiable causes for concern. It's obvious to me that something significant happened at or just before the week 28 test, but they didn't give a shit back then and continued to not give a shit yesterday.

I have another consultation booked for six weeks' time. Whether I'll bother to give the mandatory blood sample for testing is a moot point - after all, if the counts aren't important, why waste the NHS's cash on unimportant sampling and testing?

I feel a phase of conflict coming on, so I will continue to grind my axe (for defensive purposes only).

Baruk Khazâd! Khazâd ai-mênu!

Snatching defeat from the jaws of victory – Part 2

Posted by on January 13th 2017 in A bit of a rant, Illness and injury

The call came, the results are in, and they're not brilliant. They make a mockery of yesterday's result-less consultation, which I am sure would have had a significantly-different outcome if the results had been available for analysis at the right time.

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So, let's see what's what...

Ferritin vs Hb: Well, the ferret-reduction process continues to work while the Hb manages to stay within acceptable limits, but the rate of reduction has decreased significantly:



Neutrophils vs WCC: These are both trending downwards which isn't good. The newts are heading towards their bottom-limit, and the whites are now below their bottom-limit. I suppose it's possible that the lower-than-usual results could be explained by the testing being done by a different lab, but I suspect that the drops are real. If the latter, it could be that my remission has stalled, or it could be that my levels have dropped due to me fighting an infection (which is unlikely considering that I have a low CRP score of 5). Either way, it needs the beady eye of a diligent consultant, and probably further testing, to figure it out:



Of course, it could have been dealt with yesterday, but it was so easy for the consultant to smile it off, blame it on the system and assume that all was still OK. Well, here's the news, Professor... IT'S NOT OK. And that means an unplanned visit to LRI early next week, and another unnecessary cost added to the NHS overdraft.

It's not all bad news... platelets are higher than usual (213), so at least I won't bleed to death any time soon.

You can tell that it's Friday 13th.

P.S. I suppose it's possible that I've been given someone else's results again, they do seem rather prone to doing that for me.

Snatching defeat from the jaws of victory

Posted by on January 12th 2017 in A bit of a rant, Illness and injury, LMAO!

So, with venesections every third Thursday and out-patient consultations every fourth Thursday, it doesn't take a genius to figure out that every 12 weeks the two sessions will fall on the same day. Today was such a day.

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A month ago some bright spark at LRI decided that on such days it would be best to perform just the one set of blood tests, at LGH, on samples taken just before the venesection. Said tests were to cover everything needed for the venesection session at LGH and everything needed for the out-patient consultation at LRI about three hours later. LRI gave me an appropriately-completed bloods specimen form with attached samples bag to give to LGH on the day. It was, allegedly, a fool-proof idea...

I turned up at LGH early this afternoon, they took the blood sample and I handed them the form/bag from LRI. They said that they didn't need the form/bag as they would use their own, so they took away the LRI form/bag for disposal. They also said that they were now using a super-duper digital system on PDAs which would make data collection, storage and transfer much better. I was insistent that the tests would have to cover the requirements of both appointments and that the results would have to be available at LRI by 16:15. They were equally insistent that it would all work flawlessly. I was then bled and given saline as per usual. All good so far.

Of course, in accordance with my expectations and contrary to theirs, it didn't work at all. Nearly four hours later over at LRI the consultant couldn't find the test results in the database, so the consultation was a complete waste of time.



My Friday is now trashed. I have to wait in for a phone call - someone from LRI will be calling the land-line (but not the mobile) IF the results can be found. Oddly, even though they are going all hi-tech with PDAs and the like, and the results (and my records) should be on a database, they are not allowed to send me the results via text or email. For reasons of security the information has to be given verbally. How quaint!

But hey, they DO like to send me appointment-reminders via text - one seven days before each appointment, and another five days later - telling me that every missed appointment costs the NHS an average of £126.

We sure as Hell won't be doing it their way again. To quote Tolkien's Pippin: "Short cuts make long delays."

Maybe I should be charging "an average of £126" for this afternoon's fiasco?

Welcome to 2017.


Posted by on November 20th 2016 in Illness and injury

The latest monthly out-patient consultation at LRI was a belter. I managed to prise some interesting info from the consultant, info that clarifies the current ferritin issue.

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So... the dodgy result of the test prior to the first venesection... they admit that it is spurious, but can't confirm whether it's a bad test, a bad result or someone else's result. If it's the latter then I pity the other wronged patient who probably has a result of ~1675 instead of 998 on his/her record and who may have been given treatment based on it. Either way the result clearly wasn't representative of my ferritin level at the time and I've been advised to ignore it, therefore it has been interpolated on the following chart which now shows a clear downward trend and which is up to date with almost all ferritin test results:



I say "almost" because of the second revelation... nobody told me at the time, but way back in July they did a ferritin test and the result was a staggering 2887 × 10-6 g/L, that's over 14 times the upper limit! I know that at that time we were waiting for my Hb to rise to an acceptable and stable level, but that doesn't mean that they couldn't have told me about the test result. I suspect that I wasn't told because my July consultations were with Prof. H.. I've had run-ins with her before and she's always stingy with information, I suspect that it's a "Knowledge is Power" thing. Whatever the reason, I really can't be arsed to re-jig the chart to show where the result plots.

The bloods are holding up fairly well considering that I have a bit of a snivelling cold and that I had a flu-jab a week before. The latest newts result shows as just a minor droop of the line, nothing to worry about:



It's taken a while, but I now have confirmation of which type of AML I was fighting. AML Type FAB M2.

Out-patient consultations at LRI to continue at 4-week intervals, venesections at LGH to continue at 3-week intervals.

Nothing else to report.

My angels

Caring At Its Best Winners 2015 / 2016

My angels take the stage to receive the "We are one team and we are best when we work together" award at about 3:00

The Ward 41 team have been my extended family for so much of this year, I owe them much more than words can say, and I'll never be able to thank them enough for all that they did.

Here are some snaps kindly sent to me by HCA Natalie... the roll-call, the citation, and one of the shift-teams. Hopefully I'll be able to post a few more pics soon.

It makes me feel really sad that some members of the team have already gone on to other things in other places while I've been out, and I've not been able to give them goodbye-hugs and thanks. I'll miss them more than they'll ever know.

Update: Here's another pic kindly sent to me by Ward Clerk Sam, who always manages to miss the photo opportunities:

They scrub up well, don't they? TBH, I didn't recognise some of them with their clothes on 🙂

Ferritin / Addict

Posted by on November 10th 2016 in Illness and injury, Maps

I went to LGH for venesection no. 3 today, and got the pre-bleed result from venesection no. 2 - you may recall that I had a bit of a WTF episode during that session.

That pre-bleed result from venesection no. 2 was 1462 × 10-6 g/L - way higher than the previous result, but it seems to more like what we expected, and the Hb is still holding up:



This seems to add weight to the theory that the pre-bleed result of 998 × 10-6 g/L from venesection no. 1 was either wrong or not mine. Time will tell - two points on a graph isn't really enough of a basis for a trend. Nevertheless, I still intend to "discuss the matter" when I attend my next haematology out-patient consultation next week.

Anyway, sitting on a bed for over 2 hours today in a room full of ill people while intermittently bleeding into a bag does have a few benefits... as well as getting me free cuppas and biscuits, it also allows me to get stuck into a good book which I've not read for some time:



Map Addict. A Tale of Obsession, Fudge & the Ordnance Survey, by Mike Parker.

If you've not yet acquired a copy, I recommend that you add it to your Christmas wish-list. It's much better than a poke in the arm with a sharp needle eye with a sharp stick.

Ferritin downer 2

Posted by on October 21st 2016 in Illness and injury

Over the last two days this whole affair has become a lot more bizarre...

Yesterday I attended my monthly out-patient consultation at LRI. Good basic blood results, the Hb had climbed back to 148, so no anaemia due to the first venesection. Curiously, I was given no result for ferritin, which I thought was strange as that's the only thing they are actively treating at the moment. The consultant was oddly reluctant to discuss it, so naturally I pressed the matter 🙂

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He said that there wouldn't be much effect after just one venesection and that they would check it after 6 or so of them. Not good enough, I said, telling him of the grief that I would suffer when SWMBO asked for the non-existent test-result, and that we weren't going to be happy waiting about 30 weeks to find out if the procedures were working. After me threatening to give SWMBO his email address he relented and said that they would do a test at the next monthly consultation.

I told him again that his "6 weekly" instruction on the venesection referral form had been "interpreted" by me and by LGH as "one a week for 6 weeks" and that the second "bleed" was provisionally booked for today (21st October), 11 days after the first one. He said that he had intended it to mean "1 every 6 weeks", I told him that if that was what he meant, he should have written that instead. I told him that I felt fine, and pointed out that according to his own results my Hb had recovered within only 10 days, so there was no sign of venesection-induced anaemia. Grudgingly he said that "1 every 4 weeks" would do, and then after a bit of muttering and keyboard-mashing he changed that to "1 every 3 weeks". I asked if he wanted me to cancel the provisional for today but he didn't say yea or nay.

So today I made the executive decision and went to LGH for the second bleed.

As previously reported, the first venesection was done on 10th October. On that day, before they drew the blood, they took a mandatory sample so that they could measure the ferritin (yeah, it's not rocket-science) and the Hb. Today I got the result of that test...

Ferritin: 998 × 10-6 g/L

So it had gone down by 677 × 10-6 g/L with no intervention whatsoever between 22nd September and 10th October... just 18 days.

And nobody has yet been able to explain how or why.

I suspect that at least one of the test results is wrong. That, or at least one of the test results is someone else's result. Don't snigger - it's happened to me at least twice this year. I know that I'm often over-cynical, but either scenario might explain the consultant's reluctance to disclose a ferritin result yesterday.

Regardless, LGH proceeded to take another pre-venesection sample and hooked me up to a drain-bag. While that was going on they made me another appointment for 6 weeks hence. After I queried that, the Ward Sister quizzed me regarding the confusing "6 weekly" thing. When I told her that I'd discussed it again with the consultant and that he'd clarified it... and then changed it... and then changed it again, she said that she wouldn't sanction any more bookings for me until the whole sorry mess was sorted out officially and to her satisfaction. She was on the blower to Haematology in seconds flat.

Eventually she returned. 1 every 3 weeks. Official. So now I have 2 appointments at 3-week intervals.

Sorted. But it shouldn't have taken over 4 weeks to sort out and they shouldn't have used me as a go-between.

It'll be another 3 weeks until I discover the ferritin level from today's pre-venesection sample at LGH, and 4 weeks for the ferritin level from the next out-patient consultation at LRI. Those results might just depend on which way the wind was blowing, what colour socks I was wearing and which other patient's tests were being done at the same time.

Ferritin downer (updated)

Posted by on October 10th 2016 in Illness and injury

More ferritin woes...

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After losing the first referral form asking for a series of venesections to be started within 2 weeks of 22nd September, LRI raised a replacement on October 4th. On the 7th of October the nice nurse where they do the blood-letting (Ward 1 LGH) called me and we had a chat about it. She thought that I had raised Hb and needed it reducing, I had to tell her that my Hb was fine and that I need the ferritin (FT) reducing without reducing the Hb to a level where I would become anaemic. She asked me what my FT level was and was mildly taken aback when I told her "1675". She said that the info wasn't clear regarding the frequency and number of treatments - I remember the consultant writing "6 weekly"* on the original and told him at the time that I thought it was a tad vague. Clearly the info on the replacement referral form also leaves a lot to be desired.

That first session took place today, so it was late.

According to LGH each bleed should reduce the ferritin by 30-50 × 10-6 g/L, that's for the Haemochromatosis patients that they usually deal with, they hardly ever have patients with acquired iron overload due to chemo and multiple Hb transfusions. 30-50 × 10-6 g/L isn't much compared to 1675 × 10-6 g/L, so at that rate it'll take plenty of venesections to get things fixed.

LRI want to space them out because a higher frequency means risking anaemia which would not be a good thing. Venesections remove ~9% of the Hb, and Hb levels don't recover naturally at much more than, in my case, ~10 g/L per week.

So, LRI are referring me to LGH for a series of venesections to get the FT down to ~500, a level which they consider to be OK and at which they would stop. To reduce it all the way down to the top-limit of 200 would take many more venesections. Now, depending on * below, 6 bleeds could take 6 or 36 weeks, and, say, 20 bleeds could take 20 or 120 weeks, which is probably longer than I have left! Some authorities (at LGH)  insist that it should be brought down to 50 and then be controlled between 50 and 200... good luck with that 🙂

Anyway, we're one down, several more to go. LGH are hedging their bets and have made another appointment for me next week, the day after my next out-patient consultation at LRI.

* As predicted, the "6 weekly" thing was interpreted in different ways. LGH, where they do the procedure, interpreted it as once a week for 6 weeks, the Haematology Nurse Specialist at LRI thinks that the consultant intended it to mean once every 6 weeks. I find it totally bizarre, it's no way to specify a course of treatment.

This post was edited on 21st October 2016 and again on 15th January 2017 - the nice chart has been removed because it was based on incorrect information (thanks for the duff info, University Hospitals of Leicester NHS Trust!).

BANG! and the dirt is gone…

Posted by on September 25th 2016 in Illness and injury, Just for fun

 Manhattan Project

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