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Some advice for Frances
Frances is new to sleep apnea and fairly new to this site, she asked me to start a discussion for her. Her original issue was about getting rid of marks made for her mask, but is concerned with her treatment.
I have added a few of Frances's comments to me:
Frances is using a Philips Respironics Bi-pap, apart from sleep apnea she has other health issues, she wears a Resmed Quattro full face mask. She is concerned that her treatment may not be woking correctly although the figures from her machine look good, her AHI 7 days avg 1.2 and 30 day avg 1.6.
"The ct scan just showed scar tissue in lungs they said nothing to worry about!!
I am at least relieved there is nothing in my lungs!! Still have been running a fever and still not quite up to par..I am thinking of asking for a new sleep study as I don't think I am getting much rest. I do wear it every time I sleep tho, am afraid not to!! I just still feel tired most of the time.
I believe my machine is on 21/19 I put the humidifer part on 5. My husband says I am not snoring and the therapist lady said if I wasn't snoring it was working. The snoring loudly has been since I was a kid the fatigue just…"
Frances, If I left anything out please add to the discussion. As I said "with you illness's and the fact your pressures are high, you do need constant checking" and would keep going back as often as you think you need too.
Views: 117
Replies to This Discussion
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Permalink Reply by Frances Helton on
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I think you put everything in there Terry, Thank you! Any help would be appreciated!!
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Permalink Reply by Terry Vella on
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Kath, I know you have spoken to Francis before, just wanted to see if you could recommend something, also anyone else on Bi pap, I'm only on CPAP. I was hoping maybe Rock or one of the Drs may have some imput.
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Permalink Reply by Kath Hope on
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Hi Frances and Terry. Sorry for the delay in getting on here, but I had to make myself not be tempted to jump on here until I'd finished this month's newsletter, which you'll no doubt both be getting in the next few minutes across the various ponds in your inboxes. Now I'm up too late too and have broken my curfew of midnight
Anyway, sorry to hear you're not feeling too good yet Frances, and hopefully some of it is due to your recent chest infection. In the days before I was diagnosed and suffered from numerous chest infections (due to my low immunity) it used to take me a long time to get over them - well after the antibiotics had finished. I used to feel very weak and vulnerable and very very tired, although some of that will have been due to no treatment for my undiagnosed sleep apnoea.
I'm not a medic obviously, but your AHI sounds good so it seems like the treatment is certainly working. I don't know what your other medical conditions are though. I do know that some people with certain conditions like severe asthma also have oxygen with their treatment.
How long have you been on your BiPAP now Frances? It does take a while for a lot of us before we feel the full benefits, and I certainly never had the magical feeling that some people get after just one night's treatment. You can read my brief story on the Blog - My Story and there may be other blog posts on there that might help you
PS I'm liking these new smilies - not sure what all of them mean though - I'll have to get my kids to tell me
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Francis, hope your feeling a bit better, there is a Doctor who is on here and the sister site sleepguide, his name is Dr Park, evry two weeks he has a webinar where you can listen in or ask questions if you want. His next one is Tuesday at 8pm New York time. You can register through his website below or he'll normally put an invite on here or sleepguide. The more you understand the better.
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Dr Park's latest teleseminar is on the 9th October and the latest one is to ask him any question about sleep apnoea. Here's the link http://doctorstevenpark.com/ask-dr-park-10812
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I have been on my bi-pap for about a year and a half. I do have a autoimmune disease, Ankylosing Spondalitis among a handful of other back issues. Have been on the medicine Enbrel for awhile which lowers your immune system. Am in a great deal of pain this morning. I believe it's gonna be a long day...Thank you Kath for your input!!
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That's interesting, as I came across an article a few months back connecting auto-immune disease with OSA. Have found the article, and it also mentions Ankylosing Spondalitis! https://www.medify.com/blog/sleep-apnea-linked-to-autoimmune-diseases/
Out of interest, have you noticed any improvement in these 2 conditions since going on BiPAP?
You have such a lot going on, so it's not surprising you are struggling, and you no doubt have to take medication which could be affecting both the OSA and your sleepiness, but are obviously very necessary. I really sympathise with you Frances.
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Frances, I agree with Kath, I didn't realise you had been on Bipap for 18 months, even though you have other issues, i wuld have thought you should have seen better results by now even though your AHI's are very good. Can I encourage you to seek at least another appointment with your sleep specialist if not another sleep study. Like Kath I sympathise with you and we are here to support you. It is very difficult for us with the associated illness you have.
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Sorry, have been down and out. Back is still "out" and in a lot of pain so half goofy from pain med's and been sleeping more. I agree Terry I think I need another sleep study but will have to wait till I get ct scan paid for. The link you put on here, that could very well be true!! Very interesting!! Thank you Terry and Kath!!
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No worries Frances, keep us updated.
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