N.I.V... MY VISIT TO ST JAMES

Yesterday, I went to St James Hospital, Jimmy's. I was to go to re breathing issues. I was much surprised when I found I was directed to the Sleep Clinic ! !!
My appointment was at 11:30 and the ambulance was due at 9:30.. it turned up at10:30 , and due to bad traffic we arrived an hour late !. The clinic was empty ! A nurse, passing through, munching on a sandwich said, are you here for the afternoon clinic ? !!!
The ambulance man, Stuart, explained why we were late and said my name. The department sprang into action and I was seen. (Apparently Leeds gives a priority to MND patients .)

So, if you've been this sort of clinic before,ie , if you have MND, you'll know what awaits. A chat with the Doc and then the nitty gritty of spirometry and the heated ear to ensure a good circulation, followed by the cut to gather blood which gets tested for O2 and Co2.

Whilst I was waiting for the cream on ear to work , about 5 mins I was told, I thought I would eat my sandwich. I put too much in my mouth and started to choke . I banged the horn on wheelchair and banged on my back, indicating I needed it banged. The receptionist, standing behind the counter said, Are you alright ? I, of course couldn't answer as I was choking. She didn't move. Are you alright ? she repeated . I still was choking. . She still stood still. I managed to regurgitate the food, as she , at last, began to move. I calmed, then ate tiny tiny mouthfuls till I had completed a quarter of a sandwich... all I ate for hours as I didn't get home till 6:00.

So results in. High O2 even during the day, but Co2 not climbing too high ( good one)... Over one third of the night shown to have STATS of less than 90%.  So results not good. Indeed I'm counted as too ill to get on the diaphragmatic pacing prog. Indeed it's  the reason I'm so so exhausted during the day has been that my O2 levels are so abnormally  low.

So... Off I go to meet Martin, in a small office, rather like a cupboard under some stairs.. It has shelves all round with boxes and every other one had protruding tubes. Like entering a cave of caged worms !!

But one of these boxes was for me ! A machine to help me breathe  at night. YEY !!!

We began the intro to this support... Why , why, why, do they always start with the lowest common denominator.. viz we began with do you know what your lungs do???   For goodness sake !!!

So , yes I was frightened, but I held the mask to my nose for the statutory 10 secs... we them were to progress to 20 secs and I did 5 mins ! There ended the intro and I was able to walk free ... well you know what i mean !!! Wheel free !!!!

Stuart, now , very anxious ,as his shift ended at 4:00, would now be very much over time... but he had had a relaxing day........

So at home, I had another go ... and then to bed....... I put this off through fear. But Sarah was with me and promised to check me frequently. I trust her. After two false starts when I pulled mask off , I settled down ... and slept ...

 BUT .... THE best bit was that when Sarah did  turn me,  I didn't loose my breath... amazing , after only a five hours of NIV, an amazing difference.

But, sadly, it is one more step along the road................

HUG ME, I'VE GOT MND

BREATHING ANXIETIES

My life has been hectic as usual but the main issue for me, has been re breathing.. I am having tremendous difficulties. It appears I should have been given more tests in Feb but this somehow didn't happen.

It has now reached what feels like a crisis for me. I'm struggling in the evening and terribly when going to bed as I can.t lay flat which causes difficulties with turning.

 I end up gasping and very distressed. My night carers are extremely kind and soothe me as best they can.... but they cant breathe for me. 

However I rang the appropriate consultant in Hx today and know that I am now being referred to Leeds as a matter of urgency. 

There  I expect to either be fitted with a mask, which forces air into you or (my preference) will take part in a new trial of a thing like a pace -maker which will stimulate the muscles around my  lungs. Of course I need to know more about this trial, it has been used on spinal patients for a year and is now being used on MND patients who, as yet, haven't had the mask thing, but need help/support with breathing.

 I really thought I was going to have a heart attack the other night my breathing was so so laboured for so so long... and... having a DNR in place, I got even more frightened as I'm not ready to go yet !!!

No,  not for ages!! There are too many too good bits and there will be even more once I can breath with less effort !!!.

HUG ME, I'VE GOT MND