TO PEG OR NOT TO PEG !!

For the last month my breathing difficulties have increased. I can no longer lay flat. In the last week I have had terrifying incidents of not being able to breathe when turned in the night, ( every 3 hrs to stop pain).Three days ago , just turning I had to gasp for air. Now, part of this was needing air, and then there was panic.. the situation lasted for 35mins before I could calmly breathe.
On Friday last I had the thing on  my finger, with recorder, to do overnight sats..I do hope it worked.. this is what I wrote when the recorder was returned\\\;...................

TO WHOM IT MAY CONCERN:

I did this test on Friday 12 July. As I have gel nails I felt it appropriate to place the finger monitor around my toe nail, where there is no nail varnish.

When the unit was switched on it flashed “L” .So ,realising this wasn’t working as it should, I then had it on the correct finger, according to the instructions.

As Dr Thomas , at clinic, has always done the finger monitor on a gelled nail, I do hope this has worked !

If you wish me to repeat it, because: I put it on my toe first; or the gel needs to come off, please do say. However, should I need to repeat it, please can you let me know as quickly as possible as I am having significant trouble with breathing. This happens when I am lying flat, when I am sitting and lean forward or to the side. It can also happen on other occasions, even just when I’m sitting.

I do hope I get a response soon as I am very frightened and even fear going to bed. I mostly lose my breath when I am in bed, thus I am not sleeping well and wake with headaches.

Thank you

So you get the picture... except for two things  1. I wake up dizzy also and 2. My nails are a lovely purple shade    !!!!

So having discussed PEGs with:   Prof Shaw in Sheffield; Rachael, the consultant at Overgate Hospice; and more recently my Speech Therapist; and dietitian  I agreed that it would be the correct measure to have a PEG .

The PEG would be: because my breathing is getting worse and a crisis intervention would be to be avoided, also: it would be used for giving me extra fluids ( drinking the amounts of liquid I need with a catheter is very draining ) and to take my meds as liquid:: and finally I would be able to have a feed breakfast.
Breakfast is a real problem.. I cant eat cereal or bread... Ive had eggs and sometimes can have bacon... but it depends on how it is cooked.... and that depends on which carer I have...........

So armed with all this as a background, I met the    today . I was told  Gastroenterologist  by the Gastroenterologist I would be able to have it soon, and that it would be done under a local anaesthetic with an intravenous sedative.

Jokingly I said  can I have a large dose of sedative as I didn't fancy swallowing a tube... this was met with a ... the anaesthetists   will decide  how much you need based on weight etc !! What a humourless man !!

Then I asked how would I manage with two tubes in stomach with the hoist belt    .    I WAS TOLD I WOULD HAVE TO BE VERY CAREFUL !!!....
NOT VERY HELPFUL !!

So here we are : Me agreeing to have PEG with a local aesthetic and him agreeing to do it .
I then asked what would be my position for the op. On your Back... was his response.
But I cant breathe when on my back ............

The procedure only takes 20mins...

I CANT COPE FOR EVEN TWO MINS,   SAID I.

BUT IT ONLY TAKES 20 MINS,  HE SAID.................

BUT I  CANT EVEN TAKE 2 MINS ,,SAID I..............

This conversation continued .

In the end it was decided that I will have the op but under anaesthetic. The  will be able to organise my breathing .

The op will take place in the next 6 to 8 weeks (Hopefully!!) But it does depend on getting a space in the planned ops , ie to get a theatre space.

BUT as this time passes my breathing gets worse and thus the op gets more tricky... conundrum , isn't it !!!


HUG ME , IVE GOT MND