15 Oct, 2020

Limbo …

Well, I’m still in hospital, and obviously writing this on the 14th.  No idea what comes next, and nor for the moment do the medics.  The one good thing is that they did agree to withdraw the NG, the nasogastric tube, and that was done this afternoon. Big relief.

I was going to put the rest of this in an attachment so that readers could decide whether they wanted to know the details or not, but we’re probably moving towards a critical decision regarding my future in the next day or two so I decided to keep it here in the main text.  It’s a bit technical. Here goes:

We had had a meeting today:  the chief nutritionist, the consultant MND nurse, two other neurologists, me, and because my ability to speak is so bad and I need help, blog master Tim who lives nearby and knows my difficulties was listening and participating with them on my phone.

In summary: the options are a jejunostomy or – perhaps – a PEG but this time with a general anaesthetic.  Let’s deal with the PEG option first.

For me to have a PEG:

1. they must check that my lungs are strong enough to cope with the anaesthetic.  If not, they won’t do it.
2. they must be satisfied that they can find a route to and from the stomach, avoiding the ribs. They might have to search for it after opening me up.
3. The operation will be in UCLH (University College London Hospital) as normal but the recuperation period will have to be there also, for some days, not back in the National. The problem is that UCLH is a general hospital treating all types of illness, nowadays including Covid-19, and therefore they might have to wait a long time to book the op and the bed for recuperation.
4. The PEG is a more desirable facility because It’s more robust and easier to maintain than the others.

The Jejunostomy (J-tube):

1. Would also be done with a general anaesthetic, so my lungs will have to be tested again
2. Again, they will have to be sure that they can find a safe route to and from the intestine.
3. The intestine cannot take the quantities that the stomach can take, and it is more sensitive to infection, so the tube is much narrower than that for a PEG or RIG. Therefore it takes much longer for the right quantity of liquid nutrition to go in.
4. The nutritionist calculated that to supply my needs there will have to be continuous feeding for between 10 and 20 hours per day. Let me repeat that: continuous feeding for 10 to 20 hours every day!  They would start at 20 hours per day, and reduce it slowly if the intestine can take a little more.
5. Feeding must be done with a pump, not by hand. They would supply a machine to my flat. Obviously it might be working through the night. There is also a machine that can go in a backpack so that I can be fed as I walk around, in the flat or outside.
6. The pump and the pipe have to be cleaned every 4 – 6 hours.

So the meeting ended with the consultant MND nurse saying she will check what facilities are available for each operation. If it’s possible to have an operation in the next few days she would like me to remain in hospital. If it will be more than a week from now I will have to go home and then start the procedure all over again – Covid testing and so on. So I’m staying here for another night to see if she has the information tomorrow (today if you’re reading this on the 15th).

My current thinking is that if I qualify for the PEG, even if it’s a bit risky, I might agree to go ahead. If the only option is the J-tube I might refuse it. I cannot see any advantage in spending the rest of my life sitting at home unable to speak and shackled to a pump, with its own risks and maintenance procedures; and watching and feeling the further paralysis as MND/ALS spreads through the body.

So this is getting pretty serious. As I’ve said before, MND/ALS doesn’t actually hurt. Hour by hour I struggle increasingly with speaking, eating and drinking, but there’s no pain. Each morning at home I get up and can forget about the illness until I need to drink, eat or speak. It’s the medical interventions, trying to help with the painless struggles, that give the pain.

Anyway, what will be will be. I might have to make a very serious decision soon. And to reassure you, I’m sitting in my hospital bed tapping this out, and am looking forward to a good sleep. Why? Because that man across the room, whose snores throughout the night were the most disgusting I’ve ever heard, has just been discharged.

More tomorrow maybe, if there’s any information.

6 Comments

  1. What can anyone say David, this is your mountain to climb, except me and so many others are wishing we could share these decisions and help to make the climb a wee bit easier. Thinking of you and sending the biggest hugs possible xxxx

    Reply
  2. Dear David, As you know we send you all our love and lots of hugs. You are constantly in our thoughts and prayers.

    Reply
  3. Ach Dave. Thank you for sparing the energy to write this all out so clearly, as always. Heartily hoping for, erm, an appropriately shaped hole for a peg. Glad the monster’s vacated at least. Hope your new neighbour better, but let me know if you want emergency earplugs parcel.. More big hugs

    Reply
  4. I am sending you my very best wishes, David. With much love from Jordan

    Reply
  5. Sending our love across London Dave. You are in our thoughts and prayers, and your strength and stoicism are incredible. Sleep well tonight xxxxxx

    Reply
  6. I am thinking of you all the time and hoping things get better soon love always Barbara xxxxxx

    Reply

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