Things are Rigged

Seperator

In early July 2018, on the day England beat Columbia 4-3 in a World Cup penalty shoot-out, I was admitted into St Helier hospital. Over the previous two days, I had lost the ability to speak and to swallow and to breathe unassisted by the ventilator; a tipping point after months of gradual decline. Eating had become exhausting, a small meal could take upwards of an hour and be rarely finished. Sitting in the wheelchair was becoming a struggle, maintaining my balance was increasingly difficult, I was slumping forward and finding manoeuvring the chair with precision almost impossible.

The ward I was in was on the top floor of the hospital. There was scaffolding erected up the side of the building while renovations were carried out directly outside of the windows which, at the height of a blisteringly hot summer, were kept firmly locked shut. There was no air-conditioning, so the temperature on the ward was unbearable; electric fans guarded more jealously than a mother bear guards her cubs. That was not the worst of it, though.

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Royal Brompton Hospital – Fulham Wing

Despite repeated requests and despite receiving repeated assurances that the matter was in hand, I was not lying on an air-mattress. Three days later, I had a pressure sore on my right thigh the size of my hand. It felt like being branded with a red-hot iron.

Then, because I was lying down the doctors determined that they could not safely insert an NG (nasal/gastric) tube by which to feed me and so I would have to eat solid food and drink protein drinks lying on my side. It proved impossible to consume enough calories this way, and so my condition worsened.

After six days I was transferred to the Royal Brompton and installed in HDU on Victoria Ward where blessedly there was a noisy but reasonably effective air-con unit and an air-mattress. They promptly inserted an NG tube, by means of sitting me up briefly by raising the head of the profiling bed, so I was positioned correctly for the simple procedure. Then they pumped calories into me, began the long process of healing the pressure sore and, a week or so later convened a meeting.

It is always something of a worry when the consultant in charge of your case decides a multi-disciplinary meeting is in order to discuss your treatment ‘going forward’ (as if the direction of temporal travel was up for debate). A gathering of all those involved in trying to make me well again met in the ward multi-faith chapel. Attending, in addition to the consultant, myself and Polly, were several nurses, a physiotherapist, a dietitian and a couple of junior doctors.

RIG feeding tube

The atmosphere was sober, and I was feeling ever-so-slightly got at. The consultant explained to me that tests had shown it was no longer safe for me to eat. I’d had a videofluoroscopy, a swallow test, where I’d eaten various foodstuffs coated in Barium and x-rayed while doing so. The test had shown I was aspirating fragments of food into the lungs. The medical term for swallowing problems is dysphagia, and I had it in spades. The dietitian also told me that I hadn’t been chewing sufficiently, so what food I had been eating was not providing me with enough calories. I had been suffering from malnutrition.

Two weeks later, I had a small operation to have a RIG (Radiologically Inserted Gastrostomy) feeding tube inserted directly into my stomach. They told me it was too dangerous for me ever to eat again.

6 Comments

  1. GRG on 10/12/2019 at 11:39 am

    Having sampled Polly’s cooking on many occasions this must have been hard burden to bear.
    No more ‘man food’. BB and will endeavour to eat your share. It’ll be hard but we will do our best for you.

    • Stephen Deal on 10/12/2019 at 2:56 pm

      The story still has a long way to go, my friend. A lot has happened since that meeting.

  2. PJ on 11/12/2019 at 6:27 pm

    Fantastic that you are writing again? Who do we thank for the technology that is making it possible for us all to benefit from your amazing gift with words?

    • Stephen Deal on 11/12/2019 at 7:59 pm

      Hi PJ,
      I will be writing about the tech sometime soon. It literally saved my life last year.
      All the best,
      Stephen

  3. Martin Brown on 12/12/2019 at 3:37 pm

    Hi Stephen it’s a pleasure to hear from you being vocal about your experience over the years
    Whilst my diagnosis of Parkinson’s is very manageable your difficulties have seen you deal with the changing elements of your condition with courage and determination and you have always had our prayers
    During the last year while my symptoms were being scrutinised I was diagnosed with terminal lung cancer (which was later confirmed as a miss diagnosis after I had purchased a new BMW on the never-never to feed my desires)
    Now having learned more about my condition the lung issue may have been dysphasia as this is a common symptom of Parkinson’s
    Anyway may God be with you and your family at the is time
    Martin

  4. debbie field on 05/01/2020 at 4:00 pm

    Steve ….so good to hear your side of the story! Its important that all clinicians read it..
    I will make sure of that.
    You are an inspiration
    Debs

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