Friday, 10 December 2010

Take a deep breath!

Tuesday 9th November 2010. I was admitted to Hospital for a Supra-Pubic Catheter insertion. The anaesthetist was amazing. Even my inappropriate giggling (emotional lability) as he injected my spine, didn't phase him. I haven't been called bach for a good many years, it was comforting. Eventually I was given midazolam and sedated. The anaesthetist explained the added risk, inherent in sedation, for patients with MND. I had every confidence in him.
Both before and after the procedure, t
he Respiratory Team under Dr. B put me on a Non Invasive Ventilation Machine ( NIV ). This afforded me enormous relief.
Ordinarily I struggle with extreme tiredness and headaches. It takes such an effort to breathe in and out that I am exhausted and fatigued before I even attempt to do anything else. I do not feel the benefit of a night’s sleep and wake already feeling shattered. When I am tired I have a weak gag reflex, causing me to choke frequently. I also find it difficult to speak or use what little mobility I have left, including control of my power wheelchair or Eye-Gaze computer. Breathing is effortsome and tiring. Often in order to catch a breath I need to jerk my head backwards. As well as being dangerous, this places strain on my neck muscles. I already have a neck brace to assist in holding my head up and need to avoid unnecessary trauma.
When I used the NIV I did not have to make the effort to breathe. I was able to relax and woke feeling refreshed and strong, in a way that I have not felt for a very long time. This effect lasted for a good few hours after a relatively short session of less than an hour.
The only other time I feel anything like this effect is being driven in the car with the windows down. This effect however only lasts as long as the car journey and is a poor comparison.
Despite the results of my Blood Gas Tests being consistently within acceptable parameters, I felt such benefit from the NIV that I would like the opportunity to use one at home. I am confident that having access to an NIV would greatly relieve a number of my symptoms. Used regularly, perhaps overnight, I should wake feeling refreshed and energized without the sluggishness and headaches that I currently experience. With an NIV at home I would also be able to alleviate symptoms when my breathing and speech becomes laboured and difficult.

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