Archive for the 'Health, or lack thereof' Category

Sour Humbug

Posted by on December 18th 2018 in Health, or lack thereof
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Fifth Bone Marrow Aspiration with Trephine... done.

They'll phone me with the results.

No meds to tide me over Christmas and the New Year, next consultation on 03/01/2019.

I'm to pack a bag ready for a long-term stay, I'm to try to stay infection-free and I'm to call it in if I feel... ill. That's an odd notion considering that I've been feeling ill and fighting infections and falling blood-counts since June.

I broke the rules tonight - the Christmas Pub Quiz beckoned. I think we managed 4th place out of 14 teams. A few beers and a curry with good friends. A top night.

There's more to life than being kept alive.

'tis the season to be jolly...

Humbug

Posted by on December 14th 2018 in Health, or lack thereof
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This morning's scheduled call from the LRI has been received. Based on the test results from the blood sample provided by me on 11/12/2018, the raised serum ferritin level and the palpitations are probably due to infection, and the raised platelet level is probably due to the blood analysis machine mistaking malformed red blood cells for platelets. I was told that it would need further investigation, so I could look forward to another Bone Marrow Aspiration with Trephine. I was given the choice of either 24/12/2018 or 28/12/2018, I opted for the latter so that I wouldn't be sore on Christmas Day. Call over.

Chris and I discussed the call. The notion of an infection was interesting, so we questioned it. We'd all been aware that I have had infections since June, and aside from the 5-week course of antivirals that ended yesterday, I'd been prescribed nothing else. Chris called them back to see if they had factored that into their plan, to find out if I should have been on antibiotics, and to find out if I would need more antivirals.

I waited for them to call back.

I just took the call... the plan has changed again. Whether or not I had been taking antivirals or antibiotics, they want me to stop taking them immediately. They want a bone marrow sample that shows the infections and their effects. And the lead consultant has changed tack, now she isn't happy leaving the bone marrow sample so late, now she wants me in on Tuesday 18/12/2018. Their plan doesn't extend beyond that, so I have no idea if I'll have meds after the sample.

As if to underline the confusion inherent in their system, while composing this blog entry the postie delivered two letters, both addressed to me. Identical copies of the letter detailing the previous consultation of 22/11/2018. In theory my GP should get one copy, I should get the other, but I received both. You really couldn't make it up - even the simple act of correctly sending a letter seems to be beyond them!

Looks like I'll have to don the winter-wear and deliver it to the GP myself. At the very least I'll be able to make sure that they receive it. If you want a job done right...

Still perplexed

Posted by on December 13th 2018 in Health, or lack thereof
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I had to attend for another blood-test on Tuesday 11/12/2018, and I got the results by phone today. Nothing is in-limit. Hb, WCC and neutrophils have all fallen significantly. Serum ferritin is now way over top limit at 862 with no explanation. The nerdy counts charts have been updated.

The consultants still aren't sure what's going on, but they were happy to continue with their plan, which would leave me hanging for another three weeks. Then I mentioned a couple of things that they'd not factored into their scheme...

First up is a problem that's reared its ugly head only recently... palpitations, specifically atrial flutter. It started a couple of weeks ago, once a day, but over last few days it's been a couple of times per hour. It's how the heart copes when there's not enough Hb in the mix. I had it before, when I was an in-patient undergoing chemo cycles 1 and 2.

Then there's the farce that was the "urgent blood test" that I requested at my GP surgery on Monday 03/12/2018 because I'd been feeling crap for a week or so. They took the samples on Tuesday 04/12/2018, the Walsgrave performed the tests that day, and true to the NHS' definition of "urgent" I was still waiting for the results to be released to me late on Friday. Their results are similarly bad but they don't match the trend of the LRI results, which is a bit of a worry. I decided to omit those results from the nerdy charts.

The consultants are going to revisit their plan, and I am to expect another call from the LRI sometime this Friday morning. I've placed my bet on being invited to another Bone Marrow Aspiration with Trephine, Chris has placed her bet on courses of antivirals and antibiotics. I think we'll both be right.

Peaked too early

Posted by on December 3rd 2018 in Health, or lack thereof, LMAO!, Lost in translation

After all the effort put into spelling "community phlebotomist" correctly, the rest appears to have gone to pot:

 

Perplexed

Posted by on November 22nd 2018 in Health, or lack thereof, Video (YouTube, Vimeo etc.)
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Another blood-test and consultation today. The results were a bit of a mixed bag... platelets, WCC and neutrophils have all risen a tad but remain well below bottom-limit. Hb has dropped again and is now slightly below bottom-limit. They didn't give me a result for serum ferritin but from the way I feel I suspect that it has risen again. The nerdy counts charts have been updated.

The consultants aren't sure what's going on. The previous three times I was there I've been told that it might be t-MDS (therapy-associated myelodysplastic syndrome), then that t-MDS had been diagnosed, then that I have t-MDS. Now I'm told that I have neither t-MDS nor relapsing AML. In short, they know what it isn't, but they don't know what it is.

I was told that I am now over their two-year hurdle so it's likely I'll make five. I beg to differ - I feel like I'm stuck with one leg either side and my nuts squashed against the woodwork.

I may ask for a second opinion from someone who claims to know about what's known and what's not:

We're in "watch & wait" territory. Another blood-test three weeks hence, then a blood-test and consultation three weeks after that.

 

If there's one lesson to be learned, it's this:

When I get concerned about a result that's much worse than the trend, I'm told that it's a blip because it's out-of-context...

But when they triumphantly announce a result that's ever-so-slightly better than the trend, I'm told that it's a sign of recovery even though it's out-of-context.

One Up Four Down

Posted by on November 8th 2018 in Health, or lack thereof
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Another blood-test and consultation today. Platelets, WCC and neutrophils have all dropped again - that's now five consecutive drops. We've no idea what my body is doing with my iron intake - this time Hb has joined in and is dropping towards bottom-limit, yet serum ferritin continues to rise with no reasonable explanation forthcoming from the haematologists. That said, the Wikipedia page for ferritin does say that "concentrations increase drastically in the presence of an infection or cancer".

The nerdy counts charts have been updated.

I avoided another Bone Marrow Aspiration with Trephine, but I'm booked in for another test and consultation two weeks hence.

Back on the meds though - Aciclovir for 35 days, in a belated effort to shift the viral infections that I've had since June:

 
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