Today started very early, 3am in fact. Chris woke feeling unwell, short of breath and very hot. I panicked and called 999. Last time their response time was 45minutes, this morning it was an hour, thank the Lord it turned out to be nothing serious. They think Chris had the start of a chest infection and felt it best to see his GP first thing as they know him. This in theory was OK, but we had to be in Plymouth by 1pm, so it was a bit of a rush. Chris managed to see the GP he usually sees. I was not impressed with her at all today. She seemed affronted that the ambulance crew suggested antibiotics and said she was only prescribing them because they said so. She also got really huffy as Chris was finding it hard to breathe in without making a noise when she tried to listen to his chest. She said she couldn't possibly hear if there was anything there and to get Derriford to take an X-ray. She kept making faces at me behind Chris's back. OK she admitted a while ago that she knew nothing about MND, but there was no excuse in being ignorant and patronising. I nearly told her to stick the antibiotics where the sun don't shine. I also told her about the mucous build up and although the palliative care nurse had told her to prescribe something to dry the saliva up, I had read that the thick mucous needed something called Mucodyne to thin it. She was having none of it and said she would give us what the nurse suggested. It wasn't the nurses fault, she was trying to help. I am damn sure I know more about this flipping disease than the GP though. Why don't they try reading up about it? That`s all I do, research and ask advice from those who have been there.
We then set off to Plymouth, over 70 miles away, we managed to squeeze in a toilet stop at home and drop off the antibiotics as they had to go in the fridge. I have never driven to Plymouth before,but the SatNav got us there safely and we managed to find a disabled parking spot OK.
Chris had lung function tests to start with, the huffy puffy ones never go well. He then saw the Respiratory Nurse Consultant. Well straight away it was obvious that he knew all about MND and I think both Chris and I went 'Phew'. First he said that Chris's lung function was 50% down on 12 months ago, well that didn't really surprise us. We then told him about the throat spasms and mucous build up and he asked what the doctor prescribed, I told him it was Amytriptyline, he asked if Chris drooled and I said no and he said that was the wrong medication and that Chris needed Mucodyne!!! That was what I thought. He also fetched a suction machine for Chris to take home. He showed me how to use it, but putting the end in Chris`s mouth set off his gag reflex and he brought up a load of mucous so he saw first hand what we were talking about and reiterated that the Mucodyne would help.
He also explained the differences between Progressive Bulbar palsy MND and ALS MND with bulbar symptoms which Chris has. He said NIV would help Chris, but he explained that people with MND who have chest problems, but no bulbar problems, would live longer with NIV. He also said that wouldn`t happen with those with bulbar symptoms, but it would improve quality of life. He did the wrist blood test and sent Chris home with a finger SATS monitor to wear for two nights to see if his oxygen levels alter at night.We just send it back by post. He said he would happily give Chris NIV up there and there was a way for it to be monitored remotely, it was a lot to take in. When Chris was having his gagging, mucous throw up episode he also said Chris would benefit from a cough assist machine and we are going back in two weeks to collect one if we feel he needs it. He said it would be unlikely that he would get one in Cornwall ..why??
I then asked him about a tracheotomy. He said that they do perform them electively, but that it was very rare, the problem was that it would keep someone alive, but not slow down the MND, so the person could end up completely `locked in`. He said it would be unlikely that Chris would ever need a sudden emergency tracheotomy. It would often be done if someone became totally dependent on NIV or had recurring chest infections. Thankfully Chris is a long way from that. He added though that a tracheotomy would involve a 3 month stay in hospital. That made Chris decide, 3 months is a life time with MND, he doesn`t want to spend that amount of time in hospital, especially so far away, unless there was no other option and maybe not even then.
We went away feeling pretty good, Chris had medication and a suction pump to help with the saliva build up and we certainly feel better informed. It was certainly worth the long trip.
By now we were both pretty tired. Our Sat Nav decided it didn`t want to show me the way home and I had a panic attack in the car park, but there are these amazing things called road signs and we actually made it home in one piece.
When I got home my teasy mood had not improved, especially when I discovered our Calor gas tank was empty, long story but the account hasn`t been transfered to us yet and I forgot to check it, so no hot water, hob or heating if we need it, till Monday or Tuesday. I managed to cook a meal in the electric oven only to tip it all over the floor, I think I needed my bed, who says tantrums are just for two year olds!!!
On a positive note I have used the suction twice on Chris since we got home and he is already feeling the benefit of the Mucodyne.
It is so good when the health professionals have knowledge about MND, it can feel a pretty damn lonely place when they have no idea about it.
Chris had lung function tests to start with, the huffy puffy ones never go well. He then saw the Respiratory Nurse Consultant. Well straight away it was obvious that he knew all about MND and I think both Chris and I went 'Phew'. First he said that Chris's lung function was 50% down on 12 months ago, well that didn't really surprise us. We then told him about the throat spasms and mucous build up and he asked what the doctor prescribed, I told him it was Amytriptyline, he asked if Chris drooled and I said no and he said that was the wrong medication and that Chris needed Mucodyne!!! That was what I thought. He also fetched a suction machine for Chris to take home. He showed me how to use it, but putting the end in Chris`s mouth set off his gag reflex and he brought up a load of mucous so he saw first hand what we were talking about and reiterated that the Mucodyne would help.
He also explained the differences between Progressive Bulbar palsy MND and ALS MND with bulbar symptoms which Chris has. He said NIV would help Chris, but he explained that people with MND who have chest problems, but no bulbar problems, would live longer with NIV. He also said that wouldn`t happen with those with bulbar symptoms, but it would improve quality of life. He did the wrist blood test and sent Chris home with a finger SATS monitor to wear for two nights to see if his oxygen levels alter at night.We just send it back by post. He said he would happily give Chris NIV up there and there was a way for it to be monitored remotely, it was a lot to take in. When Chris was having his gagging, mucous throw up episode he also said Chris would benefit from a cough assist machine and we are going back in two weeks to collect one if we feel he needs it. He said it would be unlikely that he would get one in Cornwall ..why??
I then asked him about a tracheotomy. He said that they do perform them electively, but that it was very rare, the problem was that it would keep someone alive, but not slow down the MND, so the person could end up completely `locked in`. He said it would be unlikely that Chris would ever need a sudden emergency tracheotomy. It would often be done if someone became totally dependent on NIV or had recurring chest infections. Thankfully Chris is a long way from that. He added though that a tracheotomy would involve a 3 month stay in hospital. That made Chris decide, 3 months is a life time with MND, he doesn`t want to spend that amount of time in hospital, especially so far away, unless there was no other option and maybe not even then.
We went away feeling pretty good, Chris had medication and a suction pump to help with the saliva build up and we certainly feel better informed. It was certainly worth the long trip.
By now we were both pretty tired. Our Sat Nav decided it didn`t want to show me the way home and I had a panic attack in the car park, but there are these amazing things called road signs and we actually made it home in one piece.
When I got home my teasy mood had not improved, especially when I discovered our Calor gas tank was empty, long story but the account hasn`t been transfered to us yet and I forgot to check it, so no hot water, hob or heating if we need it, till Monday or Tuesday. I managed to cook a meal in the electric oven only to tip it all over the floor, I think I needed my bed, who says tantrums are just for two year olds!!!
On a positive note I have used the suction twice on Chris since we got home and he is already feeling the benefit of the Mucodyne.
It is so good when the health professionals have knowledge about MND, it can feel a pretty damn lonely place when they have no idea about it.
