Not rehab, reconditioning

The last six months of hospital stays, bleeds, transfusions, infections and heart stuff has left me pretty scrawny and deconditioned – my enormous abs, legs and biceps are but dim shadows of their former selves.

But over the last few weeks, I have turned the corner.

My infection is under control (with horse-size doses of Clindamycin, a yucky-tasting but effective antibiotic. My bleeding and other mysterious blood disappearances have at last come to an end (mostly because I stopped taking the blood thinner Ticagrelor, which was poison to me). My AF is under control, with fairly large doses of Amiodarone. The almost-blockage in my right coronary artery won’t be stented or otherwise operated on (to remove the calcium lump I have patiently built up over years on dialysis). I am taking aspirin daily as a moderately effective blood thinner and maybe that will be enough. So far this has proved to be the case.

So there’s no need to be skinny anymore. At last, I can walk further than around the bed. This morning Julie and I walked about 3km (1.8m) around our block. It was no speed record, but I have been walking regularly now and as long as I don’t try to run up hills, I feel pretty pleased with myself.

legsBut Julie, being Julie, doesn’t think that this is enough, so I went to my local doctor, got a referral to a rehabilitation centre and made an appointment.

Julie and I went along a couple of days ago. The first step is to be assessed by a doctor, who then nominates a plan for reconditioning (yes that’s what its called) over the next 10 weeks. I imagined the assessment would take 5-10 minutes and I’d be outta there. But no, it took 1.5 hours and was the most thorough (and humbling) I’ve had.

It began in a friendly way, with the usual questions confirming who I was, where I lived, why I was there, my medical history of how my body came to be in such a sorry state. Then a little family history: illnesses and causes of death in the family, etc. All to be expected.

What was not expected was a detailed physical and mental assessment. First the physical: sit, stand without help, checking the level of movement of arms and legs, timing me to get out of the chair, go to the wall and touch it, then return and sit in the chair. Of course, I moved faster than I have for weeks to make a good show of it, but all the doctor said was: 8 seconds, that’s ok. I thought it was pretty slick. But there was more to come.

First, he gave me a pencil and a printed sheet: join the dots in the right order, redraw that cube and others. OK. Now I’m going to say 5 words. You repeat them after me. I’ll say them again and you repeat them again.  Then a little later, I’ll ask you to repeat the words. They were face, velvet, church, daisy, red.

1-IQ testHe then asked me to count backwards from 100 by 7s. Now, this is not something I do on a regular basis, but off I went subtracting and concentrating until I got to 65, when (thankfully) he stopped me.  It was a slow and stumbling performance. (I later asked my 40-year old son to do it, and he raced through the numbers without thinking – his kids do these backward counts all the time, instead of the old times tables we learned at school, and he picked it up from testing them. Not me.

Still recovering from putting in such a poor performance, he asked me to list as many words beginning with f that were not proper nouns (beginning with a capital F). I began like a racehorse, listing the fa’s (fat far fantasy, etc – even fart), then fe’s (feeble fear fellow, etc), the fi’s (fin finance fickle, etc,) then fo’s (fox fondle forest, etc). then fu’s (future fun full, etc. I left a couple of the more disreputable f-words out. I realised later that I left a lot of fr words, like frank frenzied friar, and even good old from.

But of course, that’s all very well when you are in the car leaving the car park. (The French have an expression for it: esprit d’escalier – spirit of stairs, or wit of the staircase: witty responses thought of only too late, on the way home.  Just like me.

Sitting in the back of my mind all through these tests was: do I remember the five words?  When will he ask, because I need a moment to think. Of course, the tests went relentlessly on for another 10 minutes. Then he asked: what are the five words?

1-memorygameMy mind immediately provided the first two: face and velvet, then nothing. He looked at me, I looked at him, then I looked at Julie (who smiled and looked away – thanks Julie!). Then he said I’ll give you two hints and if you still can’t remember, I’ll give you a multiple choice. I got two more with hints and the last with multiple choice. What I also got was a strong dose of humility.

But there was more to come.

In his very next sentence, he said he not only specialised in rehab/reconditioning, but also in Alzheimer’s disease. My immediate reaction was: SO? It was unspoken and followed (also silently) by When does this session end?? Let me out! I came for rehab, not embarrassment.

Fortunately, it ended shortly after. We were taken to the physiotherapy area and I was booked in the start next week.

I must admit I was a little peeved when we left (i’m a sensitive kind of guy), but Julie thought it was hilarious. After a while (and after testing a few friends) I have mellowed. Either we are all lining up for dementia or those results, under those conditions, for people who need “reconditioning”, are pretty normal.

Anyway, that’s what I reckon.

Ask me again in 10 weeks.

11 thoughts on “Not rehab, reconditioning

  1. I would so flunk all those tests, and be more than irritated at the person giving me the tests. Looking forward to reading your updates.

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  2. Hi. I really hope you are continuing to improve every day. It’s been a rough journey for you. If you don’t mind me asking. My daughter has started getting lots of painful lumps in her legs. They have been creeping upwards from her ankle area for about the last 6months or more. She has offhandly been told they are calcium and more dialysis hours will help.
    We don’t get much help or information from her doctors so we don’t really understand if they will go away. Would you know any websites that might give us an insight about this and what to expect please.
    We do home haemodialysis and have done so for about 6 years.
    She is 37 and has been doing Haemodialysis since 2001.
    Good luck and best wishes for your recovery
    Jen. X
    Jen.hawkins62@gmail.com

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      • Hi Jen. One of the people I asked, a dialysis nurse with more than 20 years’ experience said:
        “On face value, it sounds like Calciphylaxis (https://www.mayoclinic.org/diseases-conditions/calciphylaxis/symptoms-causes/syc-20370559). It is treatable with medication and a regime of daily dialysis while on those meds, this will help reverse the deposits. Then there needs to be better management and monitoring of Calcium/phosphate. We monitor monthly and fortnightly if you are getting poor results.
        Not sure what country Jen is from and the availability of the meds. In Australia, it was over $2000 a dose but now there are much cheaper effective drugs.
        This condition would be further complicated if Jen’s daughter is a diabetic, as the blood vessels in the legs are in poor condition.
        I would have thought the doctors would have done a biopsy to confirm at the very least !!…. Unfortunately, without treatment, this will only get worse, not better.”

        Jen, it looks like you and your daughter need to start pressing your kidney doctor for tests and medication ASAP. I’ll send you more as it comes to hand. Greg

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    • Hi Jen. Another very experienced dialysis nurse replied as follows:
      “Sounds very unusual that the lumps are growing. They certainly need to be proactive, most likely cause may be calcium deposits but her Drs should be monitoring her calcium and acting on results, also her parathyroid levels.
      Her daughter may need a dose of calcium drugs.
      Could also be build up of microglobulin beta 2. A hiflux dialyser would be beneficial and maybe HDF.
      Sounds to me like out of sight out of mind home patient.
      They need to demand answers or move to private dialysis!!!”

      Same answer really Jen. Start by pushing for some tests and some genuine care. Good luck – and please stay in touch! greg

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