Ventilation.... again

I had my appointment with the respiritory consultant yesterday (see previous posts for background ). Firstly I underwent the usual lung function tests and the results, along with those from the overnight oxymeter were uploaded for the consultant to see.


I already knew the oxymeter reading was fluctuating between 93 and 95 percent oxygen saturation both when lying down and sitting. This figure should be around 98 percent. If its below 90 then you have serious problems. The figure recorded yesterday was 97.5, so much better, however lung capacity had dropped to 1.65 from 2.4 five months ago and from over 4 three years ago.

However the consultant's response was one of little concern, saying that the figures were reassuring and in themselves would not indicate the need for ventilation. Part of me would have been happy to say "great, thanks very much" and left, but I was puzzled by her response.

Everyone's advice, including MND related consultants had always been, don't leave ventilation too late. Be prepared and don't wait for an emergency. Ventilation won't arrest the progression in respiritory decline but ventilation, even for a few hours a day can temporarily increase lung function when unassisted, allowing better coughing ability and reduce fatigue. And although it is generally agreed that the decision to ventilate should be driven by symptoms, not test results, it is also widely documented that lung capacity under 50 percent of normal is in the danger zone. I am now at 40 percent.

So for all of these reasons I perservered and it was agreed I could try it.

Although I didn't realistically expect to walk out there and then with my portable ventilation equipment and start using it immediately, I didn't expect to have to arrange an overnight hospital stay to set it up. And I really don't want to do it.

My overnight hospital stay when I had my feeding tube put in was awful and I don't expect any different this time and NOBODY understands why, so let me try and explain.

Having people with no knowledge of my care routine when I have to rely on eyegaze communication is very difficult.

Having familiar carers without any eyegaze communication is also very difficult

Having total strangers with no eyegaze communication is simply impossible.

I know that once out of my wheelchair, there will be no practical way of rigging up the eyegaze computer over the hospital bed, so I will become completely isolated. So how am I meant to communicate with anyone regarding necessary ventilation setup changes, or any other requirements. There won't be anybody monitoring the ventilation continuously. I know what will happen; somebody will change the settings based on inaccurate interpretation of my grunts and I will be left for an hour or more before they recheck. If I am uncomfortable in the meantime or can't swallow saliva I will have no way of removing the mask or calling them. They won't have anyone constantly monitoring me. It isn't like I have had some procedure and require medical resources on hand in case of complications. The purpose behind this is to adjust the pump settings for sleeping but the chances of sleep for the first night wearing a mask pumping air into me are negligable. Being on a general hospital ward is not going to help.

An overnight hospital stay is purely for the convenience of the hospital. I have suggested paying privately for a suitable nurse to stay overnight at home but it was dismissed as unworkable. Personally, other than the effort to arrange it I can't see any advantage of being in hospital and plenty of advantages of staying at home. It just seems that nobody is prepared to make the effort to arrange it. I will pursue it further but won't hold my breath (pun intentional)

Finally, hospitals are about the best place to catch something and frankly I want to avoid them.

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