Newest thoughts →

December 2022

31st December 2022. After some of the hardest months of my life, I have finished the first draft of my 10th academic book, Paper Thin.

Read my last novel of 2022 this morning, Percival Everett's /PERCIVAL EVERETT BY VIRGIL RUSSELL/. Perhaps his most unusual book in an oeuvre of strange fictions.

"now I know that we're supposed to make sense that sounds like nonsense and then call the sense nonsensical"

Afraid I finally lost it with some doctors yesterday. We had agreed a care plan last week with new meds planned "within 7 days". 9 days later I emailed to find out what was going on. Was told that the teams had met and decided something different - totally without my involvement.

Sometimes, there are no good options in medical care and you are faced with a dilemma. But the difficult decision should be taken in consultation with the patient, not on their behalf and against what was previously agreed. It's very upsetting.

This just isn't right. The "new plan" involves my intense suffering at levels that I have repeatedly told them are absolutely intolerable. Yes, I rely on and defer to medical expertise. But teams of people deciding you must suffer without even speaking to you is so degrading.

Lots of evidence of Covid causing immune system damage... Would it be too much to ask that it please damage the part of my immune system that is mistakenly attacking my joints and blood vessels? Of course it would...

Heading into day 15 of positive covid tests and feeling thoroughly rough. Can't seem to clear the virus with my immunocompromise.

One of the problems is that coughing is incredibly painful with the intercostal arthropathy. Agonising!

Not a single person at hospital yesterday got my name right - I was Eve Martin, Paul Martin, Paul Eve, and Martin Paul at various points. 😂

A stressful afternoon in A&E with a good outcome. My kidneys are holding steady at around 25%. I do not have a secondary bacterial pneumonia, but they have given me precautionary antibiotics. I have strict instructions to return immediately under specific conditions.

In particular: coughing up blood; intensified chest pain; trouble breathing; oxygen saturation drops; still testing positive next week.

I've had to try to get in touch with the hospital. Still resolutely testing positive, symptoms worsening, and obviously can't go to a kidney phlebotomy room full of vulnerable transplant patients, so my kidney failure is going unmonitored. Terrible time of year to need help, too.

The covid is still here and I don't seem to be clearing the infection - if anything, I've felt worse today. Also worrying: I was told by renal that I needed weekly blood tests for kidney failure over Christmas. Obviously, I cannot have these while infected, leaving me at risk.

Day 11 and still positive. I've finished the antivirals but seem not to have cleared the infection. I'd better get back in touch with immunology. 😕

In fact, this whole Melville spat is hilarious. Except it probably ties in with the dodgy legal principle of constitutional originalism.

Rewatching the excellent TV adaptation of Jonathan Strange and Mr Norrell amid Christmas sociality.

"I wish to go home and read a book".

Me too, pal. Me too.

OK, I've procrastinated as much as is possible. There's nothing for it but to try to wrap these presents. (I am so bad at this.)

How hard can it be?

Well, I had an early Xmas present today in the form of calls from both immunology and rheumatology, who had spoken to each other(!) There's a plan to save my remaining kidney function by changing immunosuppression so I can beat the BK virus. Could have done this in Sept, but hey.

We talk in academia about inter- and multi- disciplinarity all the time, but it's in healthcare settings where I most encounter its problems. Getting teams to talk to one another and implement care holistically can be a patient nightmare. Each specialism can feel blinkered.

All UK ambulance response times should be reported in the news against the benchmark set by the theme to 1990's Teenage Mutant Ninja Turtles: "they didn't say, oh we'll be there in half an hour. 'cos they displayed, Turtle Power".

I have to go to sleep so I can wake up at 3am to take antivirals but new book arrivals, including @sadiseshiah's are too tempting.

A question for people who know: I'm massively immunocompromised. Being given antivirals for Covid. My wife seems to be going down with it too... Once the antivirals clear it in me, is there a risk of immediate reinfection from her?

So all the advice I've had is "yes, you can likely get it again"

Whenever I see Jeremy Clarkson trending on Twitter, I'm reminded of Stewart Lee's description of "Jeremy Clarkson and his outrageous politically incorrect opinions which he has every week to a deadline in the Sunday Times. Almost as if they're not real".

Well, I now have covid. Contracted on a trip to the hospital for urgent healthcare that I couldn't avoid. Wore an FFP3 the whole time. Praying that 6 jabs and Evusheld will protect me while waiting for the antiviral unit to call. Really hacked off.

Immunology have now called and are referring me urgently to local hospital for antiviral treatment.

Spoke to the doctor. I'm being given Molnupiravir - which will be delivered tomorrow. It's an oral antiviral.

He said today was the worst day for Covid in the last nine months. He's done nothing all day except prescribe antivirals for vulnerable patients. It's far overtaken flu.

Today's research work is on the deliberate digital preservation of malware and the issues it raises.

A section on the parallels to the preservation of smallpox virus makes for grim reading

Learned in the past few weeks why I have been so anemic. Healthy kidneys produce erythropoietin (EPO), a hormone that stimulates the bone marrow to produce red blood cells. Mine aren't doing enough of this it turns out. You can tell I paid attention to biology in school.

Heard this year's first playthrough of Peter Warlock's "Bethlehem Down" and will now have it rolling around my head for the next few weeks. Insatiable earworm. Sang both the alto (before my voice broke) and bass parts to this in my life.

This morning I read Percival Everett's Dr. No. Probably among his more ridiculous books and in his series of novels based around language puns. Most entertaining, though!

Lots of doublings in this novel. From the title, through to a character called Bill Clinton, and even the Beckettian insinuation that "nothing" happens twice.

After a period of struggling to be able to write in the wake of my recent hospital recovery, I've managed to pick things up again and this is almost there...

Fitness trackers that give a competitive perspective when you are learning to walk again are highly demoralising. I know my VO2 max is shit compared to people who don't have kidney failure, rheumatoid arthritis, and vasculitis. But that walk was an achievement so don't rub it in!

I love that the University of London Finnegans Wake reading group/seminar has been meeting for 15 years to conduct line-by-line readings of the work. So far they've completed Chapter One. (Not even joking!)

The government and the energy industry have told disabled people whose lives depend on powered equipment in their homes to draw up their own back-up plans to protect themselves ahead of possible blackouts this winter.

https://www.disabilitynewsservice.com/winter-blackouts-disabled-people-must-draw-up-their-own-back-up-plans-say-ministers/

"Ofgem said customers with medical needs should join their local PSR but it also made clear that it was up to them “to form a back-up plan of how they would deal with a scheduled outage if it occurred”"

How on earth are they supposed to do this?

We've been allowed tasteless decoration on the tree this year as compensation for my terrible health. A nice surprise on my return from the renal unit!

No tinsel allowed though 😂

Toby has been given some painkillers by the vet so if his little arthritic legs are bothering him we can keep him comfortable. After just a small dose he seems much perkier!

There are few things more frustrating than preparing and waiting anxiously for an important telephone hospital medical consultation... And then they don't call. Especially when you know your kidneys are dissolving further every day. 😔

A friend's grandkid is in a nativity play.

My friend: "does your play have baby Jesus in it? And parents Mary and Joseph?"

Kid: "How do you know that?!" 😂

The country's falling apart with strikes, a crumbling health service, and economic ruin and all the government can think to do is to pander to the anti-immigrant vote.

Poor Toby has to go to the vet. He really struggled to get up this morning as his back legs just gave out. May be nothing they can do but we need to make sure he isn't in pain.

Indeed, Helen spent half an hour helping him up and getting his legs working. He's never been this bad before 😭

It's totally the government's fault and I don't blame striking workers in the slightest, but it's quite difficult for me, a non-driver, to get the urgent kidney function blood test when there are train strikes Tues, Wed, & Fri... And a nurses strike on Thurs... 😬

All coach slots also sold out!

Just had a call with renal and it's not great news. BK virus levels are higher again. Kidney function is on a bad trajectory and has rapidly got substantially worse. They think it's the drug for the RA - Baricitinib - causing this.

If they can't control the virus, at least, he said, it won't cause any other problems - which was one of my concerns. But it will preclude a kidney transplant as an option, so if the virus can't be flushed out and the kidneys are destroyed, it's lifelong haemodialysis.

Need weekly blood tests now so that if kidney trajectory continues they can instigate dialysis urgently. Sadly, because of previous bowel ulceration I can't have the convenient home form of peritoneal dialysis and would have to go into hospital 3 days per week for haemodialysis.

Renal are meeting with immunology and rheumatology this week to try to come up with a plan. This could involve restarting the drug I was on before, instead: tocilizumab, which is much less likely to let the virus run wild.

Somewhat depressing but we'll find a way through it.

I'm not there yet, but the dialysis squad recommended I read around (and prepare myself). I think continuous ambulatory peritoneal dialysis sounds pretty good as you can do it at home/on the move... But must do it every day. Anyone who has been through this choice have advice?

This is the third time in my life I've had to rebuild my ability to walk with physio. Arthritic deconditioning/hospitalisation, then a stroke, then the first again. It's exhausting. But at least I know what I'm doing this time 😏

When I got out of hospital, I could do 3 minutes before collapsing. I'm already now doing 10x that. But still exhausting. Next step after this is back will be the exercise bike.

Have to conclude, with sadness, that I don't actually like the more recent Leftfield material. Leftism was a revelation to me, with its dub influences, guest vocalists, and otherworldly sounds. Rhythm & Stealth was darker but still had it. I just don't get the more recent vibe.

Thanks to everyone who has sent kind wishes re. my health situation at present. A reminder that @ersatzben is running the London Marathon to raise funds for @VersusArthritis whose research has saved my life.

If you can afford to sponsor him, please do.

https://www.justgiving.com/fundraising/Ben-Johnson53?utm_campaign=lc_frp_share_transaction_fundraiser_page_launched&utm_content=e8d46f54-e44d-4988-aa90-a6440d2ffc2c&utm_medium=email&utm_source=postoffice&utm_term=1667412479043

The rollercoaster of kidney failure continues. Rounding out the week with a bad result makes for an anxious weekend before I speak to clinicians next week :/

Working on the final report for my Leverhulme Prize

PS this was a joke. I didn't really get ChatGPT to write my grant report. Though it did quite an amusing job.

Lots of people dunking on ChatGPT ("its essays aren't that good at all!!") but I think the most impressive thing is the prompt comprehension.

That a computer understands what I want when I write "rewrite John Donne's 'Batter My Heart' in the style of Dr Seuss" is remarkable.

Saw rheum consultant.

He basically said: we're a bit stuck between a rock and a hard place. My arthritis is severe and can't go untreated. But if the virus comes back, there will be kidney damage. He's going to phone me in a week when we have the kidney results.

But I'm now very, very worried. Without the baricitinib I was basically totally disabled. I spent weeks in bed. I suppose I just have to wait and see what happens, but the prospect of lifelong uncontrolled RA fills me with horror.

If Baricitinib is too much even at half dose, we can try abatacept - but he's very sceptical it will do enough for the arthritis.

So now it's waiting for the blood results to see if the viremia has cleared.

So if the virus isn't clear, there's a hard choice: let the kidneys be destroyed by the virus and go onto dialysis. Or let the RA rampage and suffer systemic organ damage and be too ill/disabled really to do anything.

An example of the problem with the RA: it's not just joints & me being unable to move. It's damaging my vascular system. I've lost feeling in my right foot again & have electric shock sensations from the neuropathy. It's also attacking my heart + lungs, my ribs, spine, and neck.

But I have to try to stay positive. Perhaps the virus will have cleared. Perhaps it won't come back. Perhaps my kidneys will recover further.

Meeting today with a research team who are interested in my BK Virus and associated nephpropathy, trying to work out why this happens to some immunocompromised patients. Possibly more common on JAK inhibitors?

In any case, I'm billing this as "medical humanities".

"It's no surprise that Birkbeck has a higher proportion of disabled students, or mature students, than any other university bar The Open University, because it chooses to meet them as people, as learners, as open minds rather than as UCAS forms." https://t.co/JY3JptUv7B

Important health day tomorrow. BK virus tests to see if I have cleared the viremia or whether I need more high dose immunoglobulin. (Please not the latter. It's exhausting.) Also will see rheumatology to discuss the longterm management of the RA in the face of this kidney virus.

I've had to restart the immunosuppression earlier than I'd have liked as I just couldn't tolerate life without at least some. My vasculitis has restarted and I've lost feeling in my foot, with electric shocks. I've also got horrible throat inflammation going on.

But I think that the baricitinib is kicking in, even at the lower dose. So I just have to hope that the virus doesn't resurge. This will apparently now be a lifelong problem.

The problem is that it's not *just* a matter of sucking up some joint pain that I can "put up" with. Untreated severe rheumatoid arthritis causes systemic organ & vascular damage including vocal chords as per yesterday. So it's a balance of which organs get destroyed, by what...

Making cheese on toast for lunch. Toby has detected this and woken up. Sure he can't see or hear but there's nowt wrong with his nose.

Amazon advertising "last minute" Christmas deals in early December is clearly operating on some different time continuum to me.

Rheumatoid arthritis teaches you all sorts of things about your body. Like "ribs are joints" and RA can attack them. Thought I'd broken a rib the first time this happened. Just don't laugh, cough, or sneeze!

Another fact: your ribs clearly absorb quite a bit of shock/impact as you walk because I can sure as hell feel every step I'm taking today.

Thank heavens. I'm restarting some immunosuppression for my rheumatoid arthritis. I have been so ill with this uncontrolled - the pain is so bad I've been physically sick. And I've had a fever for weeks. But I am beating the kidney-destroying virus.

But to get there was so painful. I had, eventually, to complain to the hospital's Chief Medical Officer to get a call from a clinician. Otherwise, they'd just have told me to wait, suffering immensely, until my next appointment.

Going back through some old photos and videos.

Work in progress here on "Small Time Hero" at the start of the pandemic...

Eventually appeared on this classic comp

Today marks 1000 days of shielding - and 1001 days of Toby! Since I've had Evusheld I have felt safer in my necessary hospital trips, but we are still being very cautious as I cannot risk getting covid, which could kill me.

I have heard that AstraZeneca may know how to improve it to counter recent variants, but the fact is that the UK government has now set a terrible precedent of referring covid prophylaxis to NICE's dead slow technology appraisal process.

What is the current Evusheld situation? Sadly, it does look, from lab studies, as though it cannot neutralise the most recent variants. So the UK government squandered giving vulnerable people 6 months of a life back, just running down the clock.

This is dire. There's no responsiveness or initiative here - just an ultra slow reactive process that will mean that vulnerable people in the UK are given no protection as covid waves wash over us for the rest of our lives.