Yesterday was another trip to the RCH in Truro as Chris had to see the respiratory consultant. Breathing muscles can get affected as time goes on with MND, so it is important to have regular check ups. We had no idea what to expect and one of the tests was a little unpleasant. The nurse explained to Chris that they had to take blood from the artery in the wrist. This is to check the oxygen and carbon dioxide levels in his blood. Well this proved not to be an easy task and her first attempt at poking the needle in his wrist for about a minute didn`t work, or the the second attempt either. Chris never said a word, but his face spoke volumes, I think it was a little bit painful!! She then asked if he minded is she got the consultant in as he had a knack with tricky patients, to which Chris asked `Who is the more experienced!!` Luckily the consultant did have the knack, he kinked the needle slightly and yay!! out popped some blood.
The other two tests were much easier, the breathing into tubes tests and a chest Xray. The consultant then examined him. He explained that when the chest muscles don`t work properly they don`t get rid of carbon dioxide as efficiently, especially at night and this can cause a lot of problems like daytime tiredness and headaches on waking. When this happens they can use something called `Non Invasive Ventilation`, which is a mask attached to a machine that you use at night. He said Chris`s chest muscles were slightly weaker than they should be, but at the moment all the tests were normal, which is really good. He has to go back every two months for regular check ups.
I`ve read that before NIV was used, life expectancy for MND patients was a lot shorter as respiratory failure was brought on much sooner, it was a choice though and some people prefer not to use it. At the moment Chris has said he would, at the moment he wants to stay alive for as long as he can.
We then popped up to see Chris`s sister, who lives not too far from Truro and had a lovely meal with them. It also meant Chris was able to see his other sister too who is down on holiday.
Well yesterday`s low mood passed almost as soon as it came. It kind of hits like a wave out of the blue when it happens and then it`s gone. People have told me that this is normal and I guess that all I can do when it happens is to literally ride the wave .
