@chorusgirl500 so far my insurance has covered everything but a 60 $ copay. However, I doubt that is going to last. The total cost without insurance right now would have been 3000 $ , which is about what i am paid in a month. It isnt even about the money , as much as I'm realizing in order to stay alive im going to lose the opportunity to do all the other things I want to do that require money. Ill never go to another country or see the Northern Lights. I have a therapist I have been talking to, but I've been working with her for years and how to help someone who might die is really out of her wheelhouse.

@chorusgirl500 My Jak2 was positive and my doctor and I decided together that the bone biopsy would not be needed and my treatment, Hydroxyurea and phlebotomies would be the same no matter what the results of a biopsy said. Being JAk2 negative is really a good thing! You may have an underlying condition and can be treated.PV Primary is with JAK2 + PV secondary means something else could be causing it and sometimes it can be resolved! Did they say they believe it is PV? Have you been traveling in High Altitudes? It can raise all your blood levels and mimic PV labs. Your ins is much better than mine. I have a high annual ded. And then I pay 20% of all costs. I was never sick and always healthy so I get it. You are so young and will get it all figured out. Please keep us all posted and if you have any questions, just ask.

@chorusgirl500 There are different forms of polycythemia. Primary Polycythemia Vera generally involves an acquired mutation in the JAK2 gene. So, not having that mutation is actually a good thing.

Secondary Polycythemia, is generally caused, (loose interpretation) by an underlying condition in which your body senses it’s not getting enough oxygen and is calling for more red blood cell production.
Conditions such as sleep apnea, smoking or lung disease,obesity, hypoventilation, asthma,
chronic obstructive pulmonary disease (COPD), using
diuretics, the use of performance-enhancement drugs, including EPO, testosterone, and anabolic steroids
Other common causes of secondary polycythemia include:
carbon monoxide poisoning, living at high altitude
kidney disease or cysts.

Your doctor suggested a bone marrow biopsy which goes to the heart of the blood manufacturing site in the body…the marrow. I’ve had 13 of these done over the course of my leukemia journey. The biopsy of the marrow can give your hematologist an overall picture of the health of your marrow in being able to produce healthy blood cells.
If you do require this test, many clinics offer a mild sedation which lets you sleep through the procedure. If they don’t ask your doctor for a one time dose of an anti-anxiety med such as lorazapam. It can take the edge off the anxiety to help you through this.

I’m expecting they will also check your EPO blood level and check for kidney disease. What other tests have been run?

@chorusgirl500 a PV diagnosis without finding the JAK mutation is very unusual. I think something like 95% of PV patients have that mutation. So I can understand why the other commenter wondered why I recommended a biopsy if you had a PV diagnosis. Even with a PV diagnosis and JAK mutation you and your doctor can learn a lot from a bone marrow biopsy and broad genetic analysis. So I am glad to hear you are going for it. The biopsy and genetic analysis is helpful as a baseline for comparison for future years. The procedure is pretty quick, I would ask for the local anesthetic and I got something for anxiety which I was grateful for. I am a triple negative ET patient. There is a kind of continuum between these MPN diseases and patients do not always neatly fit into one category. It is good to know all you can. I wish you all of the best in seeking your diagnosis and care. Remember, most people live long and good lives with these diseases. Take care and try not to let it take over your life.

@chorusgirl500 My 18 year old son just went through several rounds of CBCs until one came out normal . This started two years ago. The Jak2 test was negative. Because he has had a normal CBC and negative Jak2 , the hematologist said he did not have PV. He blamed it on the lab. I sure hope he is correct. He also said probably sleep apnea that lowers O2 and causes the body to make too many red blood cells is also a possibility. From what we were told, if he was positive, he could live a normal life.