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secondary polycythemia

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ellen68007
ellen68007

Hi everybody! if I want to make a post or reply to one, then I do it on my computer. My ipad as I posted before shuts down on this site. I have tried to copy and paste but this works better. My question to all my very helpful friends here is this. I have COPD which was the cause of me having secondary pv but the symptoms are the same in most cases. The respirologist did an breathing test where I had to wear a spirametre on my finger overnight to measure my oxygen levels while sleeping. The levels are normal in the day time but the test revealed very low levels while sleeping and also it was noted that I stopped breathing 8 times. Now i have to have a test to where I have oxygen at night for one full week at home. I could have had it overwith in one night if I would have it done at our local sleep apnea clinic. I did have that sleep apnea test a few months back and it stated my sleep apnea was mild and definately not the cause of my polycythemia. Just a bit confused as to where this is going. If anyone knows anything about this please post! Thankyou to all.

0 likes, 4 replies

4 Replies

  • Orseblue
    Orseblue ellen68007

    Posted

    Hello, I had major operation back in February and was told I stopped breathing 2 times and 1 at recovery room.

    They talked about sleep apnea and testst but I never did the tests.

    I was given the lung exercise ball thing and try to use that as much as possible.

    My sleeping is poorly due to night sweat and a stressful job, I feel I need to take long deep breaths at times to up my oxygen.

    At hospital it was talk about the mask at night.

    I work with clients that adapt to the mask very quickly.

    Hope you get good results and if you do need the mask be assured many people use them and sleep very well with them on.

  • keith28441
    keith28441 ellen68007

    Posted

    Hi Ellen

    COPD and sleep apnoea can both cause an increase in erythropoietin, due to not enough oxygen reaching the body's tissues. During the daytime, it’s possible that by being “active” oxygen is perhaps circulating better around your body than when your asleep as the body is dormant. My brother-in-law has sleep apnoea and wears a mask when sleeping but he informs me, the mask and equipment merely circulates air around his airwaves i.e. nose and mouth, it isn’t actually oxygen. With this said, if they are giving you oxygen to take at night, then perhaps they are focusing more on your COPD rather than the sleep apnoea. The fact that they have said your sleep apnoea is mild and not the cause of your polycythaemia but that your COPD is, may further support this.  Having said that, perhaps one is causing the other? – Might be worth asking your Haematologist if both conditions can be connected?

    Sorry I can’t be of more help but that’s the only rational I can think of.

    Kind regards

    Keith

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