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My Stay at St. Barts
After 4 years of telling the London Chest Hospital that the Cpap machine wasn't working and making me feel worse I finally got admitted again for another try! I had returned 2 Cpap machines and 1 auto Cpap explaining that the machines were actually making me feel worse than when I didn't use them.
The first hospital I attended (Whipps Cross) had already determined that I was having mixed apnoeas when I used the Cpap machines due to the pressure being on the highest settings. I used to wake up feeling so ill and sick when I used the machine.
I posted a discussion on here and it was Kath's answer that made me want to give it 1 more try before giving up on the machines altogether.
But how to tell the consultant that I wasn't happy with the treatment so far. I opted for the "my friend is using this" story or there would have been an argument as after 4 years I was getting ready to go for it with anyone!
Finally I was admitted into St Barts in November for a last attempt (The London Chest Hospital now works from Barts). I was going to stay until something was done, even if it was me deciding to give it all up with cpap treatment.
The first thing they did was an overnight study using the cpap. This confirmed what I had been telling them for 4 years so they next used the auto pap. This led to a huge argument in the ward (I was the only person on the ward! How much do empty beds cost the NHS?) as now I had had 2 nights on cpap and I was feeling so ill. I was told that my initial count of 60 apnoeas an hour had gone up to 100 an hour and I was now a very sever case.
On the 3rd night they used the auto pap again but this time I just ripped it off during the night as I had a blinding headache. A doctor was called to the ward who told me I HAD to use the machine to which I replied I don't HAVE to do anything and if there was a problem with that call me a cab to go home!
Finally I was put on a Bipap machine (which is what Kath suggested in the first place!) Although the pressure had to be ramped up a lot from the other machines it didn't seem to have a bad effect on me and after 6 nights The apnoea count is now down to ZERO, I can even drive again!!!!! I spent 1 last night in the hospital just to make sure that everything was really Ok and it was.
The Moral of this story is don't give up if it doesn't work - keep nagging your consultant until you get results. I use the machine all the time now with a mask liner which makes the mask so much more bearable especially if you need high pressure.
Hope this story helps others who are having problems with the cpap machines - Russ
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Replies to This Discussion
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Permalink Reply by Kath Hope on
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Russ, thanks so much for this update, which I hope will help others. Fortunately, for most people fixed CPAP or APAP is a life-changing successful therapy, but sometimes for various different reasons, a different machine is needed. I too had to be changed to an ASV (Adaptive Servo Ventilation) earlier this year. Whilst my AHI was usually within the normal range I was retaining carbon dioxide and my oxygen levels still dipped (we are still on the journey to find out why). For the benefit of people viewing your post I'm linking to your original discussion http://hope2sleepguide.co.uk/forum/topics/mixed-apnoeas which links to 2 others http://hope2sleepguide.co.uk/forum/topics/mixed-apnoeas
I really am so pleased to hear things are going well for you now and that you didn't give up on your life-saving therapy. The moral of these stories are to hang in there and keep looking for an answer!
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Permalink Reply by Leslie Robert Hayward on
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I really am so pleased to hear things are going well for you now and that you didn't give up on your life-saving therapy. The moral of these stories are to hang in there and keep looking for an answer!
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Permalink Reply by David R1 on
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Interesting as i have central and respiritory apnea. I went to Papworth for my appointments etc.. i have been advised that if my central apneas are more promenent i will have to go onto oxygen. But i was intrtested to hear what Russ said as well as the postee of the link that Kath has given about the headache on waking as well as feeling like you have had a good old drink. I qm teatotal as well (hic hic) because of meds. So it makes sense to me this could be the issue here with me. I have my 3 month appt in May so will bring this up with them then. I cannot fault the staff at Papworth nor the facilities.
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David R1 said:Interesting as i have central and respiritory apnea. I went to Papworth for my appointments etc.. i have been advised that if my central apneas are more promenent i will have to go onto oxygen. But i was intrtested to hear what Russ said as well as the postee of the link that Kath has given about the headache on waking as well as feeling like you have had a good old drink. I qm teatotal as well (hic hic) because of meds. So it makes sense to me this could be the issue here with me. I have my 3 month appt in May so will bring this up with them then. I cannot fault the staff at Papworth nor the facilities.
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