Friday, May 6th 2011

Thoughts on NIV

I had a follow-up meeting with Lara, my palliative care doctor yesterday afternoon, to discuss the pros and cons of NIV (non-invasive ventilation) and the possibility of trialling it. It’s something that I had been giving some thought to recently as my breathing had shown further signs of deterioration. A couple of sleepless nights, slow to fully wake up, and a general feeling of weariness throughout the day plus a couple of mild headaches in the mornings were all indicators that my breathing muscles are not as efficient as they used to be. I wanted to explore what options I had and how they would impact both my lifestyle and my care package.

In tests NIV has been shown to improve quality of life by assisting the weakened breathing muscles so that more oxygen can be drawn in and more carbon dioxide can be expelled without leaving a person feeling so tired. Used overnight this can help with improving the quality of sleep so that you wake with more energy and without the headaches. Studies have revealed that NIV can extend life by months although it needs to be appreciated that it will not in any way slow down the progression of MND; it just makes the remaining life a little more comfortable.

But NIV isn’t suitable for everyone. Some people cannot tolerate wearing a mask especially for prolonged periods. I must admit considering all the problems I’ve had with skin irritation one of my concerns was definitely whether I will be able to tolerate something pressed firmly against my skin for so long without the ability to reposition it myself. So to get an idea of what it would feel like Lara had brought with her a mask for me to try. The one I was shown fully enclosed the nose and mouth and featured a cushion seal all around the edge to prevent air escaping. The whole thing is held firmly in place with straps that go around the back of the head. Without a machine to try it out on I could only gauge what it felt like and how comfortable it was. It did feel rather claustrophobic and after a short time it was already beginning to irritate me. Now I appreciate the fact that there are various kinds of masks which could be assessed for suitability so one of those might be better for me.

At this stage I have merely been exploring possibilities. If I were to go ahead with a trial I would probably need to go down to the respiratory centre at Southampton for some blood gas tests and the fitting of a mask etc. Alternatively because of the distance involved it might be possible for me to have the assessment done at my local hospice in conjunction with a team from the general hospital which fortunately is in close proximity. They seem to think I would be away from home for a couple of days or so whilst they tweak the settings.

Like just about everything in life there are pros and cons to using NIV. At the moment my body is somehow compensating for the gradual decline in breathing efficiency. If however I were to start using NIV my body would become dependent on it and I would lose the ability to compensate. This could lead to a situation whereby removal of the mask could lead to panic attacks because of the sudden difference in air pressure. How quickly I would become dependent on it is hard to say and it varies from person to person. I suppose initially the idea would be to use it only for a few hours a day, perhaps during the afternoon when I’m resting. But the question is how long would the benefits last before wearing down? If I quickly developed a dependence on it and started using it throughout the night then that would bring with it other factors to consider such as noise levels of the machine and requiring a carer to be on hand all the time which is something I don’t currently have. If it then progressed to wearing it during the day then that would introduce more problems. Masks that cover both the nose and mouth would make it impossible to operate the speech recognition on my computer. I would also lose the ability to independently drink from my wheelchair mounted drink holder and would of course have to manage without it whilst eating and drinking. Showering and shaving would also no doubt present their own problems. And finally, would wearing a mask isolate me? How difficult would it be to go out in the wheelchair? Apparently there are portable versions of the pump equipment but I would feel very conspicuous being pushed down the road hooked up to breathing apparatus, as well as having concerns about how long the batteries last.

So having had the benefit of a couple of discussions and a lot of thinking on my part I have decided for the foreseeable future to continue on as I am. Fortunately there doesn’t appear to be a window of time in which I must choose (unlike PEG) so I can revisit it later if I choose. But at the moment I am very wary of losing this compensating ability that I have. I would not want to rapidly develop a dependence on NIV because then I would simply have solved one set of problems and created a whole host of new ones which would also impact my quality of life. At the moment I can tolerate the occasional mild headache or feeling tired so as long as it doesn’t stop me from sleeping I will live with it. Instead I still have a few things that I can try to help ensure I can breathe easier. One thing I have noticed lately is that it feels easier to breathe outside especially when there is a light breeze. I mentioned this to my doctor and she said that even a fan has been found to have beneficial effects so this is something I plan to explore. In addition I still have considerable adjustment on my profiling bed so that my head and chest are elevated thus allowing gravity to assist more. Let’s see what effect these have over the coming weeks.


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4 Responses to Friday, May 6th 2011

  1. Jane C says:

    You mentioning the fan brings back memories – Richard always had both bedroom windows open, plus two floor standing fans on full blast! So while he was breathing more easily, I was going to bed attired as though I was off on an Arctic expedition!

  2. Dani says:

    ” If however I were to start using NIV my body would become dependent on it and I would lose the ability to compensate. ”

    Mark, where did you learn this? This is the first time I hear of ‘dependency’ in the way you describe it. I know many PALS who have been using NIV at night time only for a year and longer. My partner has been using at at night only, for about 3 months. What makes you ‘more dependent’ is not the use of NIV but continous deterioration of muscles involved in breathing. If you could benefit from NIV and not using it you are in danger of having high CO2 levels and going into coma. Dani

    • mndals says:

      Hi Dani,

      With regards to your question, it was something discussed with my palliative care doctor. However, that information may have come from other sources as I know my case was being discussed with my respiratory specialist. In essence she did explain to me in some detail how my body is dealing with the additional CO2 without the assistance of NIV. However as it was some time ago now I can’t recall all the details so I am loathe to say too much for fear of misinforming people. But it was felt that this ability to gradually compensate (as much as possible) would or perhaps could be compromised if I started using NIV (perhaps it’s a case of use it or lose it). How long that will take is of course anyone’s guess. It could be a few months or it could be many. Everyone is different. I have found that as with many topics I talk to people about regarding MND it is impossible to talk in absolutes because of the variability. Anyway at the moment I am monitoring the situation. Thanks for your comments regarding other people’s experiences with NIV. That was very interesting. Did your partner gain an improved appetite after starting on NIV? Mine is very poor.

      For the benefit of others who may be reading this and contemplating NIV, let me just say that as always my writings here reflect my own experiences and what works best for me. They are not a blueprint for others to follow as everyone’s circumstances will be different. I would hate to think that I have adversely affected someone’s decision to have NIV.

  3. Dani says:

    I understand Mark and respect your take on the matter. Like you, I do not wish others to get the wrong impression about pros and cons of non invasive ventilation. Like you, I am not a medical professional, so my knowledge is limited and I can only interpret the information I am given.

    My understanding is that when the main muscles responsible for effective breathing (abdominals, diaphragm and intercostals) weaken, some other muscles try to help (so you can see people moving the muscles on their neck, for example, when trying to breathe more effectively).

    I include two links that explain matters further. The second link is a document published last year by NICE, outlining the use of NIV in MND.

    My partner has a poor appetite, but his weight loss has stopped and his weight is stable now. We are more careful about calorie intake and have introduced Ensure drinks. There have been several studies linking better prognosis in MND with a higher BMI. You can alwasy try NIV and see if it brings you any benefits. At the beginning you only wear it for 15 mins, half an hour etc. at a time, as the build up needs to be slow. My partner took to it really well. Palliative care folk should not have any ‘legal’ issues with NIV, as it is ‘non – invasive’ and you can discontinue its use if you wish to do so.

    All the best, Dani

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