3 October 2012

Today was our big day at Papworth Hospital as it turned out it was extremely fortunate that the good Dr Michael from Australia was able to be with me the whole day. Michael has written his own semi-medical description of how the day went and I’m reproducing that below in italics. Of course in reading Dr Michael’s version of how the day went we must remember he is a doctor whereas the patient sees it from an entirely different point of view. Certainly for me I would say it was one of the worst days of my life, as much as anything because I panicked over breathing at some stage and spray was used which seem to me to block both nostrils solid and it was the ramifications from this which turned this into a horrendous nightmare. I was certain I was going to die. I couldn’t breathe and this is the most frightening aspect of the whole thing. In a sentence I now know that my prognosis is poor and I could certainly pop off any day. In the meantime the quality of the life I have left will be certainly diminished.

Mark, yesterday, Wednesday, 3 October was a torrid day for us to share – but there were benefits.

First the bad bits. The ambulance taking you to Papworth Respiratory unit was an hour late. The reception area for ambulances and patients at Papworth (Bernard Barren Building, Entrance 3) is primitive, limited both for parking and then for variously disabled patient to have to congregate. Then in spite of all our efforts to arrange transport home this failed with us being advised that the ambulance arranged for about 1330 would not arrive until 1630. A hasty call to the reliable Ollie’s Wheelchair Friendly Transport brought relief although Ollie was slowed by heavy traffic. By the time you arrived home to Lantern Thatch it was after 1700.

TStop listening to you when you make if you’re going to want thank you doing the entrancehe ambulance wait which found you sitting in your wheel chair for an extra 3 hours caused pressure area pain on your bottom and you suffered with increasing cold. Thereafter you were anxious and required the mask but this too was made worse by a blocked left nostril. In spite of the Nippy respirator working well at higher pressures and your pulse oximeter giving oxygen saturation readings in the high 90’s you were stressed with a feeling of insufficient air and the blocked left nostril. Try as we might we could not get you comfortable and this led onto a difficult night watched over by the attentive and skilled night carer Djarn (?spelling, pronouncer Yarn). This morning though you were sleeping peacefully with an oxygen saturation sPO2 about 97%.Off the respirator while Craig and Paula were sitting you up, dressing you then moving you to the study your sPO2 dropped to about 87%.

    The better aspect of the day were the Papworth staff, nurses and then Dr Michael Davis your respiratory physician. Kind, caring and clearly knowledgeable. Michael Davis was concerned by your loss of 6 pounds weight since your previous visit but more so because of the low blood oxygen (off the respirator and also recordings taken automatically at home overnight-on the respirator). Of even greater concern was your raised blood carbon dioxide (84 mmHg, normal is 35-45mmHg).

He identified this as insufficient breathing because of the absence of diaphragm and weakened chest muscles. Now you were relying, off the respirator, on using “accessory” muscles in your neck to breathe. Increasing the inspiratory pressure of the respirator, which he advised, has corrected all this.

    Like me he thought your swallowing was still adequate but you were having difficulty because of a sensation of a shortness of breath each time you swallowed. By day he suggested using the nose attachment for the respirator and encouraged you could learn to swallow and even dictate with that mask in place. Dangerous choking is unlikely.

 Oxygen is not indicated and sometimes with a high CO2, is contra indicated or must be used with care.

    We discussed feeding directly into your stomach. This is an option that should be retained to supplement whatever you can get in and taste by mouth. To insert this PEG (per oesophageal endoscopic gastrostomy) normally requires sedation but  for you with respiratory impairment, a general anaesthetic would be necessary and you would wake with respiratory support much like you are using now. There is no rush for this for it is important first to stabilise your breathing and improve your oxygenation and reduce the high carbon dioxide CO2, ( a waste gas – by breathing it away with the help of the respirator). This now seems to be working well though will take a day or so for you to settle.

    Michael Davis indicated you could be admitted into Papworth anytime for stabilisation if you do not obtain this at home. He  thought  you would need to stay for up to 3 days and  Alice could be with you. He is aware though of the incredibly good support you are getting at home. Better than any hospital!

    At the end of this torrid day you enquired ” is it all worth it,  or should I just pull the plug” but you quickly resolved to push on aiming for Christmas and then again your 50th wedding anniversary next March. Obviously, there is a  more “living” yet, to be enjoyed !
Sure we have shared much, but Wednesday 3rd October 2012 was not one of our better days. Yet there were the good bits, and the benefits, and you and I have learnt to cling to these..

XXX

Mick

And so with half a dozen carers and the good Dr to calm me down, sufficient to put me to bed, I suspect this is the first night over the last many years we went to bed without our champagne. I really know that the good Dr not wishing to alarm the our two children has written a little for them and I will reproduce this tomorrow.

2 October 2012

  Shortly after I had been bundled about and settled in my study chair ‘ my lovely’ appeared ready for a battle with the brambles, at the vet’s, to try to extricate the poor little black cat who had obviously been through the wars since she left us. Jane’ the sheep was left in charge […]

1 October 2012

Today, I received from one of our regular readers, who nursed her husband through MND, an excellent article written by an MND patient which describes some of the horrors of living with the disease, many of which would not immediately strike someone who has a friend or loved one who has had the misfortune of […]

29 September 2012

A bad start today. While preparing me for the carers to get me up, shower and dress me etc, I choked on some tea and for a few seconds it seemed touch and go.’ My lovely’, who was the only one with me, at the time, thumped me hard on my back and cleared it, […]

27 September 2012

I suffered an attack of nausea whilst Craig, of Ross nursing, was preparing me for bed. (Not because of Craig, I hasten to add, I have the highest regard for this carer) I took the prescribed dose of anti-nausea pills and after a short while the nausea had passed. One of the problems associated with […]

26 September 2012

Colin, not  Neil, turned up from Possum to adjust the new controls on the chair to be more patient friendly. He did a good job and then looked at the bed controls, which we call Trivids. One of them only worked intermittently and there can be nothing more frightening than hitting an alarm button and […]

25 September 2012

The crazy weather continues. As we approach the end of the month we are threatened with a full month’s rain one in one. Fortunately this extreme weather appears to be confined to and the Midlands but somehow we seem to have missed the summer somewhere along the line. These areas are suffering from horrendous floods […]

24 September 2012

Coincidentally as I was dictating today’s entry we received a telephone call from the Possum people responsible for my alarm button is – wrists; study chair and bed. We have been asking, for two or three weeks, for these people to come and sort at one during these alarms. The lady calling this morning was […]

23 September 2012

Paul ‘the computer’ came round at lunchtime and, as he is much faster than I am, at least having the use of his fingers, he very quickly started sending out my appeal letter to blocks of names in my address book. As so frequently happens, particularly on a weekend when one needs help, the Blog […]

22 September 2012

This day ,three of Ross Nursing carers, completed the climb of Ben Nevis – the highest mountain in the British Isles- on behalf of the MND Association. Craig, who is my key worker at Ross nursing, seemed loathe to tell me about the climb. As a result he failed to send me any sponsorship forms […]