I am just back from walking the dog and I feel so tired, I want to get off this rollercoaster for a while and just be still. The evening dog walk is usually performed by my youngest daughter but since she is in sunnier warmer climes I have taken over the responsibility (though I don’t remember being asked which is often used as a reason not to walk the dog when I am away). It has been a hard day at work not because work was difficult, actually it doesn’t really have much to do with work, but because I spent three hours supporting my friend to tease out the issues she wants to discuss with her medical consultant tomorrow. I am not complaining by the way, I feel privileged to be able to use my experience of dealing with the NHS and liver diseases combined with the counselling skills I have learnt to support her, it’s just that it does take me quite a mental effort to do it.

When I wasn’t talking to other dog walkers or taking autumnal photos for my blog, I guess I was musing on this issue but also on my own need to decide what to do about my difficulty in swallowing food. I have a letter arrive today which was written a month ago, and which my GP gave me a copy of a few weeks back. In the letter my consultant refers back to a previous conversation we have had over endoscopic dilation used to enlarge the constriction in my oesophagus.  In the letter my consultant asks if I would like to meet again to discuss this. Since meetings can take rather a long time to arrange, I decided to email him instead. This is the part of the email that is relevant here though I have edit out some of unnecessary details:

I was going to discuss the bolus obstruction issue with you primarily from the sedation point of view since it seems to me obvious it will happen again at some point; in fact I thought a prawn got the better of me a couple of days ago. All gastroscopic interventions are rather horrific to me, but the addition of dilating the stricture makes me rather wary on two accounts.

Firstly I am concerned that stretching my oesophagus would cause additional scarring which would further slow down my motility which is the main everyday problem I have with swallowing. Secondly, you may remember the episode in the month or so before my transplant when I [haemehorraged] which also required a balloon to be inserted. Waking up in HDU with the balloon still attached to lollipop sticks outside my mouth has to rank as one of the most traumatic experiences of my life when unable to contain my rising panic, I gagged and shifted the balloon to block my airway. I don’t suppose many people get the opportunity to suffocate themselves.

I know sedation has been an issue in the past because of my original liver’s ability to quickly break down the drugs but I really wish something more could be done during the gastroscopies. I am left with echoes of the experiences that in some sense haunt me. The last time in August I have a distinct memory of gagging and being told by a woman to “just keep breathing Andrew” three times in a row. There are also physical signs of a struggle. […] I know I have to be able to swallow the endoscope for the procedure but I really wish I wasn’t aware of it. I have to say that a nurse commenting on me being given a date-rape drug didn’t add to the feeling of well-being.

My consultant replied a few days later to the two issues I raised and in particular about the sedation whether I wanted a general anaesthetic. I have to say this confused me since I didn’t think that was possible for gastroscopies. Did my consultant rush off a reply and was being sarcastic? I now feel I need to do some research to understand better the possibilities for sedation for endoscopic procedures and that is where my thinking got to when I arrived back at the house after the dog walk. It just feels too much to do this research at the moment.

Having reread the entire email just now, the reply does not come across as sarcastic or critical in any way; I wonder if I was making that up as an excuse not to reply and move forward. Life seems too complicated sometimes, or perhaps I make life too complicated sometimes.

I am going to leave this now. I want to get this up and posted, and I want to snooze.