Archive for the 'Illness and injury' Category

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

http://xkcd.com/1736/

Ferritin

Posted by on September 23rd 2016 in Illness and injury

No, it's not another strange hobby. No Mustelids have been deployed or harmed in the production of this post.

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According to the consultant at yesterday's out-patient consultation, my key bloods are now well into the "normal" range:

  • Hb: 148 (normal range: 130-180 g/L)
  • Platelets: 185 (normal range: 140–400 (× 109 cells/L))
  • Whites: 5.9 (normal range: 4–11 (× 109 cells/L))
  • Newts: 3.5 (normal range: 1.5–7.5 (× 109 cells/L))

However, he said that my ferritin level is "a little high". He also said that it's a common thing that they often see in people who are in remission from AML, it's a consequence of them messing with my bloods so much during the treatment.

So, this raises two questions...

1: If it is common and if it was expected, why has this not been explained to me at all during the previous nine months?

2: How is a level of 1675 × 10-6 g/L classed as "a little high" when the "normal" range is 15-200 × 10-6 g/L (or 50-200 × 10-6 g/L depending on which lab is doing the tests)?

To get some sort of visual perspective, here's a graph of all of my ferritin readings currently available to me:

 

 

Feel free to do a trend analysis on that  :mrgreen:

Anyway, the accepted wisdom is to reduce the ferritin level simply by bleeding me at regular intervals, I'm currently waiting for a series of appointments to attend a different hospital to spill my hard-won red stuff into a waste-bucket.

I might just get me a real ferret instead. From what I've experienced it will be just as efficient at drawing blood, it won't cost the NHS a penny, and it will have a much lower carbon-footprint than driving a diesel-powered tin box to Leicester and back several times during the coming months.

Kicking AML’s Ass: Promoted

Posted by on August 19th 2016 in Illness and injury

According to the consultant at yesterday's out-patient consultation (75 days post-chemo), I'm now a Survivor and no longer a Sufferer.

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I'm not cured (they never use that "C-word") but it has been confirmed that I'm in what we all hope is lasting remission. There are no signs of the disease itself but they will monitor me for a year or so while I continue convalescence to repair the damage caused by the treatment. It's mainly physiological (muscle-loss, lack of energy and stamina, lack of eyelashes, lack of pupil dilation etc.) but there are some odd mental effects too (Google "chemo-brain" for further details). The Treatment Summary document states that I may have "late effects" including fatigue, poor concentration and forgetfulness. Oh, and early menopause!

Bloods are now more-or-less "normal":

  • Hb: 128 (normal range: 130-180 g/L)
  • Platelets: 239 (normal range: 140–400 (× 109 cells/L))
  • Whites: 4.6 (normal range: 4–11 (× 109 cells/L))
  • Newts: 2.67 (normal range: 1.5–7.5 (× 109 cells/L))

As you can see, the all-important neutrophils are still building up nicely:

 

 

Normal service will be resumed as soon as possible 🙂

Kicking AML’s Ass: Up!

Posted by on July 21st 2016 in Illness and injury

Two weeks of medically-unaided recovery have made the following kick-ass blood-count differences:

  • Hb: up from 90 to 101 (normal range: 130-180 g/L)
  • Platelets: up from ~70 to 223 (normal range: 140–400 (× 109 cells/L))
  • Whites: up from 2.4 to 4.6 (normal range: 4–11 (× 109 cells/L))
  • Newts: up from 0.82 to 1.65 (normal range: 1.5–7.5 (× 109 cells/L))

After today's check-up, the one outpatient appointment per fortnight has been changed to one per month 🙂

So that's good news for you lot, as I'll have to find something less boring to rattle on about.

Kicking AML’s Ass: Out of the woods, I can see the pub in the distance

Posted by on July 12th 2016 in Illness and injury

Cycle 4 has finished.

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I'm not yet discharged back to the care of my GP (that's a few months away) but the hospital visits are now tailing off - one outpatient appointment per fortnight until further notice.

The official line is that I'm in a period of counts recovery which should lead to remission... after previous chemo cycles that recovery has taken a few weeks, but due to the cumulative effect of high-dose cytarabine cycles this latest recovery could take several months, and we can expect set-backs if I catch any bacterial/viral/fungal infections.

To give some idea of how slowly the counts are recovering, here are comparative plots of the neutrophil counts for the latest two cycles. For the avoidance of doubt, we're aiming for a minimum count of 1.50 x 109 cells/litre for minimum-acceptable infection-resistance. 4.50 x 109 cells/litre would be a good mid-range long-term target...

 

 

The red-count plot follows a broadly-similar pattern (at the latest check it was still low at about 90 grammes/litre, climbing, but not very quickly), which means I'm at home with many things to do and not much energy to do them. Mind you, I do have to try... I need exercise in order to convert belly to muscle. Furthermore, in theory, more exercise should mean faster recovery.

And there's more good news! I now have so much head- and facial-hair that I had to have it trimmed to keep it in check. So now I look less like Uncle Fester and more like Great Uncle Bulgaria 🙂

Kicking AML’s Ass: Cycle 4… The end is nigh

Posted by on June 25th 2016 in A bit of a rant, Illness and injury

A quick update...

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The Hambleton Suite staff fixed the CADD pump. Turned out that they had filled, primed and programmed the pump properly, but whoever had turned it on had, for some unfathomable reason, forgotten to press the "start program" button. It put me a day behind schedule and meant that the last dose was still going in on Ella's 21st birthday but it wasn't too much of a spoiler.

So, that was the Cycle 4 chemo all finished!

On June 10th I felt that I wasn't firing on all cylinders during the thrice-weekly consultation so they admitted me back on to Ward 41, did some blood-cultures and pumped me full of Vancomycin. The following day they said that they had grown a gram-positive bug from my PICC line.  The Vanc was changed to Teicoplanin. By Monday I felt much better so I was discharged, but I would have to attend daily for Teicoplanin shots.

It didn't really work. On June 17th I was admitted again.

The day after, the bug had been identified as coagulase negative staphylococcus. Ooer! They pulled out my PICC line due to sepsis. From then onwards, IV Tazocin and IV Teicoplanin meant cannulation which, as previously, didn't go down well with me... it took seven attempts to get a line in, it worked only once and there had to be two more attempts before a good placement was found. Nine holes during 24 hours. No wonder I don't play golf 🙁

The day after was Fathers' Day. Another key calendar day trashed by the NHS. Well, half-trashed... the kids came in to see me, but it's not the same as being at home. I didn't get to see my dad. Then again, he was on holiday in Italy.

Anyway, the daily CRP infection-markers rose again and again. The doc said that I'd probably be in for the full week. That led to another problem - I had to apply for an emergency proxy vote in order to exercise my democratic right on Thursday. I had to get my case worker to find out about the process and to print the required form, and then get one of the staff nurses to support the application.

Typically, as soon as the application had been posted my infection markers dropped and my blood counts started to rise. I was discharged on Wednesday and managed to vote without proxy on Thursday.

I went back in for a quick blood-test and consultation on Friday, it was all looking good so I got sent home.

So, I have a weekend of not being allowed to do much at home, followed by a Monday consultation.

I suppose it could be worse.

Kicking AML’s Ass: Cycle 4… There will now be a short intermission

Posted by on June 1st 2016 in A bit of a rant, Illness and injury

The first two doses went in just fine, some nausea and epic vomiting as expected but OK after that.

Today I went back to Hambleton to have the pump reservoir fitted for doses 3 and 4...

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They were having problems fitting the new reservoir to the pump. Their not paying attention to their own instructions didn't help. Eventually it was fitted and I was sent home ASAP.

We were on our way home when the pump, in idle-mode until 8pm, started beeping every five minutes. I called for advice, there was nobody there with suitable training to help me over the phone. Moreover, there would be nobody there with suitable training to help me directly if I got back in the car and presented myself and said pump for further investigation. The advice was to "turn it off, lock the lines and go back to Hambleton in the morning".

I turned it off, locked the lines and then took the liberty of taking the whole damned thing off my body and dumping it in a big yellow and purple "Infectious Substances" bin.

See what I did there? I used the same rash caution that they used when they removed perfectly-functional PICC lines due to their not following their own "Suspicion of Sepsis" rules correctly 🙂

Or, as I prefer to view it, tonight I had a choice... sleep downstairs on the settee with a malfunctioning beeping pump full of poison, or sleep upstairs safe in the arms of my beloved.

It was a no-brainer.

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