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Jangobie
14th March 2013, 15:49
Just thought I would share a time when the NHS did get it right.

We have just had a visit from the Outreach Respiratory Unit at Lane Fox (st Thomas' Hospital) after a shaky start with them with no contact since last August, St Georges contacted them on our behalf to ask about a cough assist machine for Eddy as he keeps on getting clogged up and does not have the muscle power to clear it. They were absolutely brilliant, they brought the machine but also had with them an array of spare kit for us to keep and also had a spare ventilator with them so Eddy can have one upstairs and one downstairs, as he needs to use this overnight and at different times during the day.

They made sure that we were comfortable with using the cough assist before they left, also gave us full contact numbers and emails for their whole team. It is a great machine and hopefully will make a big different. Diane

wooz
14th March 2013, 17:00
I think certain parts of the NHS are hugely underrated, great news

Rory
14th March 2013, 17:50
Great news Diane
Let me know how he gets on with it as I use a suction machine and it seems to work .
Hope Eddy will be more comfortable with it .
We might need him for the Grand Slam !

Best wishes

Rory

petal
14th March 2013, 23:31
HI nice to hear good reports of Nhs i am very pleased to hear of cough assisted machine we are currently waiting for one ,hope we are as
pleased .


Take care Petal

raq1975
20th March 2013, 12:48
Can I ask where you started with your search for this machine. It's sounds just what my mum needs but I'm not sure who to contact in the first instance? Many thanks rachel x

pete
20th March 2013, 14:59
Hi Rachel,

in our part of the country, we have to get this tackle sourced by the respiratory part of the team that are assigned to you, I found our Speech therapist just wonderful in knowing where and how to get what was needed, but I can put money on ,that it will be different in other places , What I can say, I do not have one at the moment but having tried one not long ago ,found it beneficial ,but that said I still can cough so they wanted me to persevere as they say use it or loose it, so far it's worked in my favour , hope you get sorted and best wishes to you.

Regards
Pete

Jangobie
20th March 2013, 15:51
Hi Rachel, as Pete said it was Eddy's respiratory part of his team that started the ball rolling. All of our team knew about this machine but like Pete says, it is not always the same procedure but usually someone on the team will know if not how to get it, who to talk to. We have only had this a few days but it really has been a big help. Eddy has respiratory onset ALS so the muscles in his chest are weak and he has hardly any cough reaction. He uses a Nippy ventilator all night and usually a couple of times during the day. Very best wishes Diane

suefreespirit
22nd March 2013, 19:49
Hi
I too have respiratory onset MND , Im on a ventilator all night , but am avoiding using it in the day at the moment, Im having a RIg next week , so that may help with the feeding issues, I also suffer from a bloated stomach due to the ventilator I think . They have suggested a cough assist for me too , best wishes suefreespirit.

Jangobie
23rd March 2013, 14:57
Hi suefreespirit, Eddy too gets bloated and has an awful lot of wind. At the minute he has no problem with swallowing but does need the ventilator sometimes during the day. The cough assist has been a bit help. I hope all goes well with getting the rig fitted. Take care. Diane

Terry
23rd March 2013, 15:51
Hi Diane and Sue;
Bloating and a build up of wind can be a problem with Mnd due to the lack of movement and the inability to relax muscles. I find it very hard to get rid of wind especially from the lower area. The enema function on my Bio Bidet helps remove it. I do not use a ventilator yet.
Best wishes, Terry

berdbrain
2nd April 2013, 19:43
Hi Diane, just wanted to know if you still think the cough assist machine is a good thing? My sis is having terrible trouble with her cough and after much resistance she has just today begun using the suction machine that Rory among others uses, my question is...is it painful to use the cough assist? Does Eddy have a suction machine as well?
Can anybody give their experiences of the cough assist machine? All answers gratefully received! thanks
Debbie XXXXXXXXXXX

Jangobie
2nd April 2013, 20:15
Hi Debbie, Eddy doesn't use a suction machine. The cough assist is a full face mask that he holds over his mouth and nose, you have a remote control which enables him to switch the machine on. It is a type of suction and quite strong but it is not at all painful. He takes two deep breaths in and out with the machine set to inhale and then on the third breath he tries to cough as best he can and switches the remote to exhale and this pulls up anything that he has on his chest or at least moves it around. His MND is respiratory onset and so a bit different to some types of ALS, he uses a Nippy ventilator all night. Our respiratory team showed me how to use it in case Eddy could not hold it over his face himself. He finds it a great help. Hope this helps and I hope that your sister is having a good day. Best regards Diane XXX

berdbrain
2nd April 2013, 21:57
Thanks for that Diane, she is not having a great day I'm afraid, because she has another chest infection...she didn't want to use the suction machine, but today she had to and now she is happy and feels it moves stuff. Hers is bulbar type....I have told her about cough assist, but when we spoke to Ian Rennie nurses they asked i fit was a type of cough mixture which made me feel a bit silly as I have read about it a lot on this forum and in fact sheets from MND so I imagined all medical people would know about it.....but will suggest to my brother in law that he gets in touch with respiratory team, and we'll see how she gets on with this suction machine now that she is actually using it.
thanks again, and I hope you enjoyed some sunshine today. XXXXXXXXXXXXXXXXXXXXXXxDebbieXXXXXXXXXXXXXXXxx

berdbrain
6th April 2013, 14:49
Hi Diane, I hope you and Eddy are enjoying the sunshine, I just thought I would let you know that my sis and husband are going up to John Radcliffe to get a cough assist machine next Thursday...I think it will really help her....she didn't want to use the suction machine, but when she started using it she realised how it helps her and I think the cough assist will help clear the junk further down so that she can get some relief from the yuck.
Thanks for your help
sent with love XXXXDebbieXXXXXXXXXXXX

Jangobie
6th April 2013, 16:24
Hi Debbie, it is so lovely to have a bit of sunshine, I think that it makes us all feel a bit brighter. I am glad that your sister is going to get the machine, Eddy says he can really feel it shifting the junk. He had a bit of a rough day yesterday but is feeling a lot better today. Thanks for letting me know how your sis is doing. Take care of yourself and I you and your family have a good weekend. Lots of love. Diane

berdbrain
13th April 2013, 12:35
Hi Diane and all, I thought I would give an update, we're having a tough time at the moment because my sis had another infection and more antibiotics and was having terrible nights with the coughing, up and down to use the suction machine.....then she went to chest clinic at JR to be assessed for cough assist and whatever they did, it meant another night of really bad rotten coughing. Now they will phone up next week with a day when they have to go and collect it, and bring it home......so that is almost another week before she gets it and then has to get used to it and hopefully it will bring her some relief.
We do do the patting on her back, and the lady who gives her massages and reflexology and things says that if we try and massage her feet that will relax her and maybe stop the coughing.
She is taking the mucadyne, and the doctor has now prescribed a tablet that I can't remember the name of, but you put it under your tongue and it dissolves and relieves your anxiety and makes you feel very sleepy...this has helped a bit, but she really needs the cough assist I think to actually get rid of the mucous better than the suction. The doc has listened to her chest and she says it is clear.
What with this and the weight ...she is putting real food pureed through her peg and she feels psychologically and physically that this has made a difference, and her weight has stabilised, so now she has agreed with the dietician to give something called Vital 1.5, which is new and is easy on the tummy, a go through the pump at night....we are hoping this will give vital extra calories without upsetting her tummy.....but this won't come until the end of next week either....I was there when the dietician came and I asked if it could be organised any sooner, but the answer was no....the wheels of the NHS turn very slowly at times.
I am hoping for a better day for her but it is so hard to watch her cough and cough and she is so debilitated by it, I am trying to say to her hubby that it is good that her weight has remained the same for 2 weeks, but I am so worried about the cough.....I am sorry to go on but , she didn't reply to my text and I am thinking she is either sleeping which is good, or coughing, which is not. Yesterday while I was there she had loads of texts (main form of communication obviously) but she didn't have the energy to even look at them.
Sorry to offload
Debbie
XXXX

Jangobie
13th April 2013, 16:11
Hi Debbie so sorry to hear tha your sister is having such a bad time again with the coughing. I really hope that the cough assist will help. It really does help just to get things off your chest sometimes. Take care and love and best wishes to all your family. Diane

berdbrain
6th May 2013, 10:58
Hi Diane, my sis has now got the cough assist and used it yesterday but she had a lot of rumbles last night and she felt that it sort of made things worse.....do you think that when you start to use it it brings more mucous up than your used to and so it feels worse, and then once you use it regularly it keeps it under control? or am I just being silly? I am sorry to ask you every minute detail about it....but with the weight loss still being an issue, we worry so much about a chest infection, although her GP also prescribed a ventolin inhaler thing.
Hope Eddy and yourself are enjoying the warm weather
XXXXXDebbieXXXXXXXXXXX

Rory
6th May 2013, 17:40
Hi xxdebbiexx

I find that it sometimes gets worse before it gets better with the suction machine. Then once it is all out, I found find it easier to keep under control.
I take wherever I go and it just keeps the mouth and throat clear. I do find adding a bit of lemon juice to my drink and sipping it helps loosen the gunge .
As you know i have not passed the driving test so I do not have a cough assist machine !

Cheers

Rory
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