Thank you Lori.
I think there is a misunderstanding here, you appear to have misunderstood me with regard to my diagnosis as if I was attributing mycondition to sleep Apnea alone! NO I did emphasise in my post that blood test CONFIRMED Polycythaemia Ruba Vera with a Jak 2 mutation, full stop.
Although not confirmed that I also suffer from sleep Apnea as I hadn't had it monitored & havn't yet got around to doing so, I can only conclude that Sleep Apnea may have escalated the & triggered off the PV condition which had been working away inside my blood stream for decades. This I linked to my experience of not having to take any medication or venesection for 2 months earlier this year when all my blood readings were within the normal range. Bruised muscle which I had didn't permit me to lie down normally in my bed, the sitting up position during sleep resulted in normal breathing during sleep, consequently I didn't wake during the night with dry mouth from snoring with an open mouth! & felt perfectly rested each morning.
This was hardly coincidental that I got relief for a couple of months during normal breathing during sleep!

When I read this reply today, I became very depressed again when I read your description of Polycythaemia to be a Chronic condition. Yes blood cancer is blood cancer no doubt, but at the same time, the fact that Polycythaemia can be controlled with venesection & medication & from various articles I read about it, people can go o to live normal lives + doesn't always cut short the lifespan of most? People. Now I feel an invalid again! chronic has put me back on my box. I hadn't been going out & about, I went to Church to try to get back into a normal routine, felt a bit lightheaded, didn't go back until last week & again yesterday. I felt confident I was fighting my lack of confidence. I begun to attend the opening receptions in our local art galleries, coffee with friends, thought I have to get in with life, now after reading the word 'chronic' describing Polycythaemia, I just feel what is the point in trying to put such a chronic condition into the backround & try to ignore it as if I just had a minor treatable disease.
I just don't know. Take to the bed I suppose & wait until I'm called from this life.
I have a relation a surgeon who explained to me that a lot of people who were living in high altitudes suffered from this condition & their only means of treatment was venesection prior to Pharma produced meds which came on market later. Venesection is so safe with no side effects. At least a lot of them seemed to get by.

Thank you for the links which I will go through when I am in a better frame of mind.
I forgot to mention that I am on warfarin for blood clot prevention for almost 3 years, as had clot in my leg. The duration of warfarin intake was for 6 months .Then a couple of months later I developed clot in lung . Blood test was carried out in A&E for Polycythaemia due to this lung clot. I was Polycythaemia positive.
I did ask my Consultant if it was necessary to be taking warfarin & hydrea concurrently when it evidently was the PV kicking in which led to both blood clots I assume. He didn't give me a direct answer as to whether I should be taking warfarin medication when the main culprit was Polycythaemia, & am on Hydrea as well!! Two different lots of medication for a confirmed Polycythaemia condition. The mind boggles, to be honest & am receiving side effects from both medications.

Jump to this post