Sleep Apnea and Polycythemia Vera

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EnergeticCoffeeSnail2953 +0 points · 12 months ago

I am new to this site. I was diagnosed with sleep apnea back in 2000 and was given my first machine. I moved around a lot and in that time I never really felt I needed it as my partner was always keeping an eye on me. Then I suddenly got sick in December of 2010 and went into respitory failure. The doctor in the hospital wouldn't let me out unless I promised to use my machine. I needed a new one so my insurance at that time paid for it. Then about 5ys later I needed a replacement machine because the one I had was getting old and had been dropped. To make a long story short. The machine that I received as a replacement was a "loaner" I did not know that at the time. Fast forward a year and a few months takes us to June of this year. All this time I was a faithful BiPap user. Then I get told that I needed a sleep study for the doctor to be able to send in a prescription for a new machine. I had my sleep study a few weeks ago now the doctor is saying I don;t have sleep apnea any more yet, because of the Polycythemia vera (elevated red blood cells caused by my bone marrow) when I lye down I feel like I can;t breath correctly with out my machine. I wanted to know if anyone else is having the same sort of issue. I have lost some weight which might contribute to my no longer needing a machine due to sleep apnea but still feel like i need one.

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snuffie3456 +0 points · 12 months ago

How frustrating for you! It sounds as though you are dealing with a situation rare enough that no one knows how to respond to your question. I wish I could be more helpful-mostly just wanted to respond so that you don't just hear crickets chirping. I think if I were in the same situation I would request a direct consult with the pulmonologist. There are so many layers of care in the sleep clinic, and I believe that the technicians and nurses are super knowledgeable, but you have a co-morbidity that is most likely outside of the usual care they provide. You might be getting the "canned" response to your sleep study results, which might require a second look from the doctor.

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sleeptech +0 points · 12 months ago Sleep Commentator

Weight loss is the only known potential cure for obstructive sleep apnoea (not central). It doesn't work for everyone because OSA can be caused by a complex web of factors, but it can work for many. So, it is possible that your sleep lab has cured your OSA. However, you said that were on BiPAP, and this is only used in cases where obstruction is not the only problem. CPAP holds you airway open preventing obstruction whereas BiPAP actually breathes in and out with you, augmenting your respiratory effort (as well as holding your airway open). It is used for treating central sleep apnoea and various forms of respiratory failure. How well do you know the diagnosis which lead to you using BiPAP? I am not a doctor (I am a sleep tech with 16 years experience), but would suggest that you do some investigation to find out exactly what is going on. Keep asking until the answers start to make sense. There are too many people in the medical industry who can't be bothered to take the time to engage in proper education of patients.

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