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magic
26th February 2012, 14:36
Hi everyone. Need advice again. Husband has become increasingly exhausted. Everyone says that he has to mange his energy and that nothing can be done for the fatigue. I am aware that some people have a breathing assistance system overnight. What is the trigger for this level of support? He has not seen a neurologist since his diagnosis before Christmas. I do lack confidence as everything seems to be attributed to MND yet no one can predict what will happen when. I welcome your comments.
magic

pete
26th February 2012, 15:32
Hi Magic

Know just how he feels, I have just been to see my neuro, and she has reffered me to thoracic services in stoke for lung function and other tests, so as far as you say ,Yes its pretty much everything from runny nose to gasping for air is down to MND,once you diagnosed it seems everything from now on is MND related, The only guy i know for sure ,who is having breathing support night and sometimes in the day is Mark aka Batty might be worth a PM i am sure he will advise you

computatec
26th February 2012, 20:58
Hi Magic

The indicator for needing breathing assistance, known as non invasive ventillation NIV, is waking up with bad headaches and falling asleep several times during the day.

Clive

magic
27th February 2012, 07:18
Thank you both, husband has just woken up with bad headache and gone back to bed. This often happens. He is spending about 10 hours a night in bed and sleeping for about 3 hours a day. I will ring the MND nurse today. She did a breathing test before Xmas and said it was Ok but, even at this time he could not lie flat because of breathing difficulties.

Magic

hilary walklett
27th February 2012, 10:07
The headache could possibly be because his breathing dificulty stops him taking on enough oxygen. He definitely needs professional assesment, I would say.

Hilary

john
27th February 2012, 10:09
Magic,
irene has oxygen readings of 94,95,96 and we were told numbers needed to be in 80s before bipap(NIV) would be introduced. Irene doesn't sleep much during the day.

John

magic
27th February 2012, 10:20
Have just secured respiratory assessment for this Friday. I will advise you of the outcome. He sees specialist regarding rectal bleeding on Thursday, so, with a bit of luck, we may have some help by the end of the week.
Thank you all again.
Magic

Batty
27th February 2012, 11:13
What is the trigger for this level of support?

Hi Magic,
The answer to this is the blood gas levels(co2) which I am sure they will check for you-this is done in the arteriel blood either electronically or manually.
Regards Mark

computatec
27th February 2012, 15:55
Magic,

You need urgent help with these symptoms. Meanwhile put some large strong blocks under the head end of the bed and a slope of pillows so he is not lying flat. The problem is that gas exchange is not taking place properly in his lungs so he is not getting rid of the carbon dioxide and it is poisoning his blood. If you can get him into a Respiratory support & sleep center, his blood gases will be monitored over night. I am looked after at Papworth hospital in Cambridge, an hours drive from my home. They have a weekly MND clinic and a special interest in the disease.. There are similar units all round the country.

The unfortunate truth is that you have to be pro active and push for everything you need for your husband's wellbeing. Next task, ask the district nurse to order a Profing bed for him. It's like a hospital bed with all the adjustments controlled from a handset.

Clive

magic
27th February 2012, 20:16
Thanks Clive, I have just ensouraged him into an upright position but he doesa not think he will be able to sleep this way. WIth appointment for sleep centre on Friday, is there anything else that you think I should do?
Magic

computatec
27th February 2012, 21:04
Magic,

He will not be able to sleep sitting up. If you make a ramp of pillows, cushions etc so he is lying with the top half of his body sloping up and his lower half flat you can get him comfy, lying on his back. Look at a clock, imagine 09:55, the angle between the two hands is a starting point for the amount of slope, which will probably get lower after the pillows settle

It may take a bit of work to get it right, so his back and shoulders are flat and his lungs are breathing freely and he is not scrunched up with rounded shoulders. This is why you must ask now for a profiling bed so he can adjust the slope to his own comfort. I can only lie on my back and can no longer turn in bed, so I sleep with the bed control in one hand and adjust it as necessary. I am in bed for ten hours each night. The beds come from your local NHS equipment service on loan, but can only be requested by an OT or district nurse.

The sleep centre on Friday is great. Is he going in as an inpatient? I was in for five days and they tested everything and fitted me up with a machine to take home. Which sleep center are you going to?

Clive

magic
28th February 2012, 19:01
Just found your repl Clive. Sleep clinic is in St James hospital. No idea what is involved but will ring MND nurse to find out. Thank you for your careful mail about sleeping position, we will have another attepmpt tonoght. Will let you know the outcome from clinic.

magic

computatec
28th February 2012, 20:14
Hi Magic

It's good that you have an appointment this week. I presume you are referring to St James in Leeds and if that is correct you are in a very good place. I look forward to hearing how you get on. I was diagnosed in London, at the Royal Free hospital.

Clive

magic
2nd March 2012, 17:30
had both appointments. To have camera up his bottom to investigate bleeding, should be next week. Saw respiratory nurse this afternoon and blood gases are OK in the daytime.To wear monitor overnight to record night time breathing but, on the whole quite positive. It does not explain big increas in fatigue but will have full blood test soon. Thank you all for your concern.
magic
A

computatec
2nd March 2012, 19:45
Hi Magic

Thanks for the update. The overnight monitor will record his oxygen levels continuously through the night and record them in the machine. The information is then used to draw a chart which shows what is happening while he is asleep.

Does "He" have a name?

Clive

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