Secondary polysithemia

[Wimpygirl]

I have had this for about 4 years. Hematologist removes blood when needed. My breathing is very compromised when blood gets thick. Been told my copd causes the bone marrow to make too much blood. Anyone else have this problem? fatigue is terrible. I am 73 female, and 6-7 yrs ago, I was very active. Now I have trouble doing most everything, except a little sewing.

[Paul42]

Hi

secondary polycythemia is a different condition to what most people would have on here, on here those with polycythemia (and other conditions) come under a group of conditions called Myeloproliferative neoplasms (MPN).

Usually your condition is as a result of another hence the 'secondary', its often when the oxygen supply is limited, so people who live at high altitude, smokers, people with lung conditions likes yours and asthma.

That said I am sure the things people do here to help alleviate fatigue, which is very common, would be very similiar. Eating well, plenty of water - keeping well hydrated thins the blood and is key, i drink 3 litres a day at least.

Excercise is another however i am sure with COPD this is a challenge, being an asthma sufferer myself i know from attacks i have had how debilitating it is not being able to get your breath and how utterly miserable it is, one of the worst things you can experience, especially in the now colder weather.

I dont know why it causes it to make more blood in secondary, if i was guessing i would say the body is trying to create more red blood cells to carry more oxygen but thats just a guess as i say.

Best wishes, i hope things improve for you soon.

Paul

[Aime]

Hi, so sorry to hear of your problems. I am sorry I can't answer your question about secondary polycythemia but Paul has given you some really good advice already. Instead I send you some big E hugs which I hope will help support you and let you know you are not alone. The people on this forum are so kind and understanding, you have come to the right place!

I hope you find a way to cope with your symptoms better so you can do the things you want to. Kindest regards Aime xx😺😺

[Wimpygirl in reply to Aime]

Thank you both for replying. I think the hemotoligist is thinking my bone marrow is trying to fix my problem of not enough oxygen by making more blood. Complicated!!!