BREATHING PROBLEMS WITH VENTILATOR

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Permalink Reply by Kath Hope on October 13, 2014 at 13:08

Elizabeth, I am so sorry to hear of your problems.  I cannot speak for your scoliosis, and sadly our friend Marion Whiting is no longer here for us to seek advice from.  I do know that it was very important for her to have her filters changed regularly on her Nippy ventilator and she was also supplied with the CPAP Bacterial Filters, which many of us use with our CPAP too.  Whilst I personally only need to change them once a month, Marion had to change hers every 3 nights or she too was prone to breathing problems and chest infections.

Many people with scoliosis do also have sleep apnoea, so when you go in for your sleep study, ask them if apnoeas/hypopnoeas were also flagged up, which also cause oxygen desaturations.  I say this, because if you had been having struggles with your mask and not getting the required treatment, then people with sleep apnoea would indeed be open to heart problems due to the stress of the heart with no positive air pressure being administered, and also to chest infections due to their immune system being low.  Of course, this is as well as the issue I mentioned earlier about the importance of the filters being changed regularly.

Please let us know how the sleep study goes and how you are yourself.  My best wishes for a quick solution and recovery Elizabeth

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Permalink Reply by Ruth Kirk on October 22, 2014 at 15:24

Hi Elizabeth,I hope you are feeling better and had the sleep study.i like you have scoliosis and at 56 years old have been in a ventilator for a long time,about 15 years with 1.5 litres of O2.
I have recently transfered to a Nippv St + which is the same as yours.
I had a similar experience last year which was viral as all tests proved negative including heart,it did clear up eventually. Your oxygen at 66 % is vey low and when I had similar they took me into hospital the same day.Was your CO 2 high?
It sounds like your mask may be leaking a lot and you may need to change setting on the vent. As for your back compressing ,it is unlikely as at 48 your back is probably fixed. A lung function test compared to a previous one will determine any major changes . I have had scoliosis since a child with no operation and since I started in a vent when I was 41 ,not much has changed function wise,I use my vent at night and sometimes in day when resting.
Another suggestion is ,I have benefited from doing breathing exercises and I use a portable neubuliser daily just with saline which really opens up my tubes. I really hope your sleep study and tests went well please let us know
All the best Ruth

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Permalink Reply by Kath Hope on October 23, 2014 at 21:55

Thanks for your reply Ruth, which I hope Elizabeth is well enough to read.  It's good to hear we have you on the forum with your scoliosis experience, as Marion Whiting (who you've probably come across) used to help us out with scoliosis sufferers until her sad death earlier this year.

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Permalink Reply by Ruth Kirk on October 23, 2014 at 22:26

Thanks Kath, I was sad to hear about Marion's death , her book was great and I wish I had read it when I started on the vent . I am happy to help on the forum for any one who has scoliosis and is on a vent . It was hard when I started on my ventilator ,big and bulky back in the 90s ! I still managed to travel the world ( thanks to my husbands carrying skills!) and now have a small neat bipap which is great although still trying different masks even after all these years.Your site has been great to see and hear how other people cope with different masks
I do hope Elizabeth is ok. .

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Permalink Reply by Kath Hope on October 24, 2014 at 13:15

Yes, it was very sad losing Marion and we still sell her books.  Whilst we don't share the same condition, we can certainly help each other out re the mask/comfort issues, and thanks for offering your help on this forum and also in the Facebook Group

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Permalink Reply by Elizabeth Howard on December 14, 2014 at 22:23

I stl miss Marion a lot.  I am not too bad, have recently been for a sleep study at Papworth, had my ventilator increased a bit as my oxygen level was low, I was surprised they didn't keep me in when I went for a day case a few weeks previously as 66 oxygen level is low I agree!!!  I do feel better since the increase in ventilator settings, my oxygen has to stay on 1 as otherwise I make carbondioxide.  I will be happy to answer any questions, many thanks

 
Ruth Kirk said:

Hi Elizabeth,I hope you are feeling better and had the sleep study.i like you have scoliosis and at 56 years old have been in a ventilator for a long time,about 15 years with 1.5 litres of O2. I have recently transfered to a Nippv St + which is the same as yours.
I had a similar experience last year which was viral as all tests proved negative including heart,it did clear up eventually. Your oxygen at 66 % is vey low and when I had similar they took me into hospital the same day.Was your CO 2 high?
It sounds like your mask may be leaking a lot and you may need to change setting on the vent. As for your back compressing ,it is unlikely as at 48 your back is probably fixed. A lung function test compared to a previous one will determine any major changes . I have had scoliosis since a child with no operation and since I started in a vent when I was 41 ,not much has changed function wise,I use my vent at night and sometimes in day when resting.
Another suggestion is ,I have benefited from doing breathing exercises and I use a portable neubuliser daily just with saline which really opens up my tubes. I really hope your sleep study and tests went well please let us know
All the best Ruth

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