Sunday, November 27, 2011

General Transatlantic Update

Since I've been offline for just under two weeks, I think a general update is in order.

First thing, first: I weathered the flight pretty well, arrived around 7:00am, saw my GP at 10:15am, saw the excellent and charming consultant at Homerton Hospital at about 4pm, and was promptly admitted after a general chat. I stayed on ward for a couple of days, before being transferred to a dedicated short-stay rehab unit. I'll be here until just before Christmas, but rehab is for life, children, not just for the holidays.

Three major problems remain, coinciding with the three initial "brain events" I had: face, vision, right side. I have a left side Bell's Palsy: the left side of my face is paralyzed. It is slowly coming back to life with diligent work and lots of strenuous face-pulling, which is good. More troubling is the fact that the damage extends do the left side of my throat, and my left vocal fold. Listening to a recording of my voice as it now stands was distressing: there's no colour at all, and I've got less than an octave in range. Happily, the voice therapy protocol I'm using works, so with luck, time and effort all will be well again.

My vision is currently buggered: I have a squint in the left eye that makes me look like dribbling idiot--unfortunate because I dribble at the moment (see above re: palsy)--which concerns me only slightly less than the double vision I have when using both eyes. It turns out that my eyes will at some point magically fix themselves in the next 4-6 months, and in the meantime I should just STFU and deal. In practice this means I have put a frosty coating over the left eye lens in my spectacles, and go about my business, hoping each morning that I will miraculously be able to see again. If they don't fix themselves, there apparently reamins the knife. I shudder.

The physio here is excellent: strict, observant, accurate and persistent. It helps, I think, that I'm relatively young and determined to walk the hell out of here. RIght now I'm back to walking with a (Zimmer) frame, but I expect to graduate to a quad stick and then a walking stick before long. It may surprise some, but I'm working bloody hard to walk (properly) again. Although it felt initially like a step backwards from Mt. Sinai, it isn't: I'm getting to address the core problem, which is my balance. I still have a mild tendency to keel over.

I have my own room, with its own bathroom (about which more anon), and I'm now allowed to walk its confines unaccompanied (a joy!), although nowhere else. My day is packed with a schedule (of my own devising) of physio, voice, speech, writing and typing therapies. I have to be careful not to reach an unproductive level of exhaustion... with which I'll sign off!
Until the next update, I remain
Stroker Ace


Thanks to the wonders of the modern age and the vastly superior European 3G network, I'm connected again. Expect a fuller update or two soon, but for now: I'm well ensconced in a rehab facility and working my ass off. No more urine adventures.

I'm at the Median Road Intermediate Care Unit, Room 8, in Hackney. The number in my room (inbound only) is [redacted], If you're crazy enough to call, the best time to reach me is between 1pm and 4pm Eastern. I expect to be here until just before Christmas.

Monday, November 14, 2011


I flew back to the UK with my father, and was admitted to hospital before the day was done. I was exhausted, but trying to stay cheerful. Two days later, I was taken to the nearby in-patient unit, but didn't get back online for weeks.

Sunday, November 13, 2011

A Brief Respite

Getting ready to leave the hospital after a month! I can't wait. I have much to say about hospitalisation, infantilisation and so on, but it will have to wait until I can type more reliably. For now: Yay! Home! For tomorrow: ooh! aeroplane to London!

Saturday, November 12, 2011

Ultimate Urine Victory

Ultimate Urine Victory

(TMI incoming for the faint of heart.)

Just over a month ago, when I had the first of my several little stokes, I barely noticed the fist catheter going in, when I was in the emergency room, except as notice that my stay would not likely be short. It stayed for about 8-10 days.

definitely noticed when the first one was removed.It was... uncomfortable. You may want to wince in sympathy.

At this point, I learned one of the great truths of hospitalisation: catheters happen, and where catheters happen, urinary tract infections also happen. Joy of joys, with the removal of my first catheter, I promptly grew a fever and it was determined that I had a UTI. A course of antibiotics later and the infection was no more.

Now by this time I was done with the active stroke-having and the majority of the testing, I was mobile-ish with a walker and able to pee. Theoretically. The reality was different: you see, peeing meant either being half-carried to a horrid hospital bathroom with no lock, or using a ghastly plastic jug urinal thing with an unfinished and rather sharp neck.

I was in a wretched position, since the probability of being interrupted while in the lavatory approached 1, and the sharpness and general insalubrity of the urinal was an absolute inhibitor. Not normally pee-shy, I found myself unable to meet the doctor-imposed deadline of pee or it's the catheter again!

Enter catheter #2.I noticed that one.

I protested mightily and to no avail, and in the meantime was promoted out of the 4-bed stroke critical care unit to a glorious single room. When #2 finally came out, and I was again given a deadline to pee or be damned, I figured the additional privacy would help my addled brain, as would the copious amounts of water I was encouraged to down.

Sadly, I was mistaken. If anything I was interrupted more, and once by a PCA who wandered in and casually took my blood pressure while I was on the can. Small wonder that it was higher than usual. In any case, my not-too-distant ability to drink seven or eight pints before needing to pee did not serve me well, and a new pleasure awaited before catheter #3: the dreaded straight catheter. This is pretty much what it sounds like, a simple tube that goes in, allows the pee to flow, and is then removed.

I produced more than twice what the average human bladder contains, and overflowed the measuring bucket that comes with the straight catheter. Indignity heaped upon indignity!

Enter catheter the third and an honest-to-Bacchus urologist. The latter determined that the third full-on tube should stay in for a good three days too give my, by now, much abused urethra and bladder a bit of R&R, whereafter I should be on a regimen of regular straight catheterisation, until I could pee normally. I was determined that this ultimate sanction should never come to pass.

For one thing I was pretty sure that I was peeing normally for me, if they'd only bugger off and let me do my thing. For another this would have meant either days of self-imposed excruciation or a catheter on a plane, something I did not want.

Fortunately, through an exercise of will worthy of a Bhoddisatva, I produced all the necessary urine voluntarily, and then some.I was not quite home free, alas. One single holdout doctor would not give me clearance. It turns out that most bladders retain a bit of pee after going; there was a distinct possibility I was retaining a lot more, and that would be symptomatic of a real problem. 

Alone among her male colleagues, she insisted on thoroughness, and I cannot for an instant begrudge her the transitory discomfort that the men in the room sought incorrectly to spare me. 

Cue catheter #4, to be used directly after peeing, to fully drain my bladder and thence measure the retention. Over 200mL, and the catheter would not be removed this side of the Atlantic. It was a tense moment only barely alleviate bu an extraordinary informational pamphlet in the style of a greetings card that came with the catheter set. Its true glory cannot be described.

I passed the final tube test, and have been a veritable Niagara now the pressure's off. Hurrah! You may now uncross your legs.

If there is a moral, it is this: train yourself to have a weak damn bladder!

P.S To the G+ contingent, Yes, I am enjoying the gentle irony of this post appearing in your stream.

(You can see the card here.)

Saturday Update

1. Continual gradual improvement to the face and hand; barely detectable from outside
2. Ultimate Urine Victory is mine! I will not be travelling with a catheter, nor will I need to cath myself.
3. I have all the records and images available to me, and a discharge transcript that will provide a summary to Dr. C et al.
4. Discharge drugs have been prescribed and the prescriptions filled, but the drugs will be  locked in the drug room until tomorrow.
5. Contrary to some of the discharge bumf I received, I will not be given warfarin to go (a good  thing).
6. Walking is generally much better, but see below.
7. I got a visit from Dr JR the excellent Neuro-opthalmologist yesterday, she noted Dr. GP at Moorfields (she thought) as a folow-up.
8. Dr Rucker also applied two prisms to my glasses which help resolve the double vision, which is still otherwise terrible.
9. The new prisms seem to have greatly improved my balance, but because they restore the double vision, make walking harder. This is easily restored with a bit of tape.

Finally, I expect quite a few visitors today to say "au revoir" and am looking forward to getting out and home tomorrow, and the road to further treatment beyond!


Tuesday, November 8, 2011

Last Chance to See? - UPDATED!

Last Chance to See? - UPDATED!

UPDATE: If you were very generously thinking of schlepping up here on Sunday, hold your horses! Current plan is to discharge me into Dad's care at home (in the US) on Sunday, for transfer to the UK on Monday. As a result, Sunday visits (to home or hospital) are very ill advised... but fret not: I shall return! In the meantime, I have the joys of bladder training and straight catheters to occupy me this week. The days are simply packed!

So, it turns out that the hospital will under no circumstances discharge me to my apartment before I've undergone a month or two of rehab. 

They will only discharge me to the care of a parent and an immediate airplane to the UK, and thence rehab.

The other concern for the men and women in white coats is that there are a number of nasty infections on the ward, and I'm also in danger here (antibiotic-resistant urinary tract infection? No, thanks!) I share their concern!

The upshot is that at some point in the next week or so, I will get the airplane/wheelchair treatment and be back to the UK for a while. My intention is to return before my residency is threatened, but that may be a challenge.

If you're in the NYC area and have a chance for a quick trip up town, it would be a pleasure to bid you a temporary farewell.


P.S. I make no apologies for the histrionic header: I had a stroke: sue me! ;p

Friday, November 4, 2011

Progress Report!

Progress report! It's like a performance review for my brain!

Walking remains to be seen, but I made substantial progress yesterday, getting up and down a flight of stairs twice. Knackered afterwards, but progress! PT exercises still kicking my ass, though.

My mouth has definitely improved, although it's still impaired (and I have a quasi-synaesthetic taste of cold).

My right hand is also functioning better, or at least I'm adapting to it better: I can touch type consistently now with persistent difficulty, but it''s far better than it was. Fortunately the QWERTY layout favours the left hand.

Our last hurrah to get Medicaid to approve rehab in time to be really useful has failed, so we have engaged an alternate plan to fly me back to the UK where a grown-up healthcare system can dio me some good. Never fear, US-ians, I shall return! It took 10 bloody years to get a green card, I'm not giving up on residency or citizenship just because of a few piddling strokes!

The only remaining hassle (potential TMI incoming!) id that I picked up a Urinary Tract Infection when first catheterised, and it does not appear to have responded to the course of antibiotics. Some uncomfortable shenanigans have ensued, and I'm back to having a catheter again, at least until Saturday, whereupon "we shall se..." A bit of a pain, figuratively and otherwise

Thursday, November 3, 2011

Best In The World

Latest word is that Ms. L---- has submitted the Medicaid application, but declined to approve it. This means there is no hope of rehab in the US within the c.2 months it takes NY to process the application.

So, I think there is no alternative but to engage the NHS, if I want to have rehab at all within the first three months after the strokes. For the time being I am in no danger of being ejected from the hospital, but they are clearly eager to discharge me. That certainly won't happen until after the weekend at the earliest. The remaining uncertain factors are the ongoing UTI, which has developed beyond the initial infection a bit, and my steadiness on my feet.

I would very much like to return home for a few hours before hopping on a flight across the pond, and may well be discharged before we can arrange all the details, which shouldn't be too great a problem to handle.

Again, nothing's happening until next week at the earliest, and I can almost certainly manage at home for a day or two!

I have the appropriate form for the hospital to mail (!) my records to Dr C-----, and can fill it out as soon as I have his address. J------ is going to make sure I have a copy of my PT records.

I think that's it for now; if anything else occurs to me, I'll email. 
Talk tomorrow,

(Any American who thinks the current US system is the best in the world is either obscenely wealthy or a fool. In my case, a demonstrably lazy and rather stupid hospital administrator simply made the wrong determination, and I had to leave the USA to get treatment.)

"Almost" is a delusion

Excellent night's sleep.

Some slight thawing of the face today. I can almost close the left eye.

RH progress continues slowly.

Unfortunately gained a new catheter and drip, due to concerns about wretched UTI

Feels a bit of a setback but plenty of support to varry,,,carry on carrying on.

Lots of love

(More email. 15 months after the stroke I still can't close that eye.)

Wednesday, November 2, 2011

Email update

Medically basically stable but the mild urinary tract infection that surfaced when the catheter was removed may have escalated; time and a Urologist's visit will tell. It's certainly nothing to worry about.

Physically continual slow progress is steady, but slow. I can walk better and without a walker or cane, but am still very (perhaps dangerously yet) unsteady on my feet. Stairs were much better today, but still present a monumental obstacle to going home.

Still no further communication from Ms. L----; it may be time to engage aggressively with J-----.

Hope this update is useful; I'm pretty bushed from today's physical therapy.

(I was trying to update both friends on G+ and family by email. Parallel redundancy didn't last.)

Ça continue.

Ça continue.

Daily slow progress is slow (but daily).
The Medicaid saga drags on (don't ask!)
Tired today: not nearly enough sleep last night.
PT exercises are kicking my ass.


Tuesday, November 1, 2011

3 Weeks

3 Weeks and Counting.

It's been exactly 3 weeks since my first strokes and things are generally interesting.

Physically there are continual, gradual signs of progress in most areas, with the exception (apparently) of my eye muscles.Today I shall make a first attempt at stairs, which are a pre-requisite for discharge.

Mentally, I still seem to be about as compos mentis as ever, although I find long paragraphs visually a bit difficult: my eyes lose track at about the fourth line, I can usually bully my way through, but it's tiring.

Emotionally, I seem to have short-circuited a couple of feedback loops that,e.g. prevent me from laughing at my own jokes, so I can, I fear, come across as a gauche loon. I am also rather more prone to sentimental blubbing.

Practically, I am in a sort of pre-discharge limbo while we figure out how best to arrange some sort of rehab. I'm safe and secure in Mt Sinai for the time being, hoever.

While preparing this, I took my first stairs more-or-les successfully: four steps down were enough to tire my right leg out, which is a little ridiculous.No going home for me today!