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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Definitely not a Happy Easter

My Easter holidays have ended on a sad and depressing note. I learned yesterday that a friend with MND died that morning. He is the second member of our local MND group to pass away in 15 months. I had known Steve about a year and as well as meeting every few months to watch everyone else have lunch, we were in regular email contact. He had a fantastic and irreverent sense of humour and although I only met his wife and daughter briefly, he was a much loved husband and father. Steve had been responsible for raising the money for the research I was discussing last year. Like all of us, he never expected any resulting treatments to be in time to benefit him but he didn't even get to see the research start.


The news of his death resonated particularly as Steve was at a very similar stage in disease progression as myself and a simple cold which spread to his chest was all it took. So it is hard not to let this news get to me on several levels.

I received another email late last night from a facebook contact whose husband had MND saying he also died a day earlier. I didn't know Graham personally but gather he was largely bed bound with a tracheotomy. He also had a young family and like Steve, had been diagnosed more recently than me. So the phrase 'borrowed time' is difficult to get out of my head, particularly when last night's overnight oxymetry test didn't need a specialist to interpret that the result wasn't good.

But for the moment my thoughts really are with Steve and Graham's family. They have lived through the nightmare of this disease and have just experienced its inevitable conclusion.

The Dreaded Ventilation is Nigh

blog entries have been very thin on the ground although plenty has been happening, so here is a quick roundup of the last few weeks.

At the beginning of April we had a night away at the New Forest hotel that we first visited in November. This time the experience was different in several respects, both better and worse. On the positive side, November's bitterly cold weather and icy winds which kept us inside the hotel last year were replaced with wall to wall sunshine and warmth. On the day we arrived we stopped at Bucklers Hard a few miles away and spent a couple of hours there before spending the remainder of the day in the hotel grounds.

On the negative side I found the journey down very tiring and combined with the effort required to operate the wheelchair at Bucklers Hard, I was exhausted by the time we reached the hotel and remained so for the rest of the day. Next was the thing I had been worrying about, the transfer to bed and sleeping (or rather the inability to sleep). The hoist we had hired had been delivered and worked ok, but despite taking my own pillow I was having problems after a couple of hours.

I had already had breathing problems sleeping on my back at home but I had made some modifications allowing me to turn on my side. The bed at the hotel didn't allow me to move so I was struggling for breath. Tracy pushed me on to my side but after a while my shoulder was hurting and one hand was trapped under me. I had to decide whether to stay in that position or go back on my back and risk the breathing issue again. Then the other problem was the heavy cotton duvet. I needed it low enough so the weight of it didn't pin me to the bed or add further weight on my chest. But it had now slipped too low and my legs weren't strong enough to fish it back. I hardly got any sleep and the time I had to think just made me worry about the cruise; this was 1 night, a 90 minute drive from home, the cruise is 14 nights away from home.

Since getting home I have continued having problems overnight and also in my indoor wheelchair which applies pressure to the area of my back in just the wrong place. As a result of all this, I have arranged an appointment with a respiritory consultant next week to arrange ventilation equipment. I have dreaded reaching this stage but I think it would be unwise to embark on the cruise without it. Although this non invasive ventilation is simpler than a full tracheotomy, it still requires a lot of initial setting up and requires a mask over mouth and nose, which by most accounts is fairly uncomfortable and hardly conducive for sleep, particularly as I will be incapable of adjusting it myself. Some people decide to draw the line at assisted ventilation but I guess I should at least try it first.

I realise I have strayed from the original subject of this post but it seemed to be a good opportunity to elaborate on this development.

The hotel break was a nice change of scene and it was good of Tracy to undertake it, but I fear it will be the last one we do.

I will leave other recent activities for the next post

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Post Gig Review

As you saw from the previous post, the boys had their school concert last week where the audience witnessed the debut public performance from Netic. The boys had been practising for weeks but as they took their positions I was probably more nervous than them.

The school have their own drum kit so we only had to lug the guitar and two amps up. The boys were second on the bill after a group of recorder players, so not your typical support act. Luke got things going with his drum intro and Jake and Daniel both came in perfectly. Just as we were breathing a sigh of relief, disaster; Luke's drum pedal slipped on the wooden floor and everything ground to a halt. We had told them previously just to keep on playing through any mistakes but this was definitely a song stopper and I felt so sorry for them. One of the teachers jumped in and volunteered to hold the pedal in place, the headmaster explained the technical hitch and re-introduced them for a second attempt. And all credit to them, they played right through faultlessly. As you can hear on the video, everyone loved it.

They should have been the headliners in my unbiased, objective, impartial and balanced opinion. Seriously though, whilst I would have to concede that some of the other perfomers were technically better, the boys performance was by far, the most entertaining and original. As the other kids who had been watching filed out of the hall at the end, I heard one of them say "Luke, Jake and Daniel really rock" to which several others  agreed, which wasn't surprising because they really did ROCK.

Netic steal the show