PV and ME…

Real patient experiences shared privately at www.TreatmentDiaries.com. Read more, share if you like or join in the conversation. Making sure you feel less alone navigating a diagnosis is important. Connecting you to those who can relate and provide support is what we do.TD logo

PV and ME…

Hello, This is my first diary entry. December 17, 2015 I was diagnosed with Polycythemia Vera. I’m really not sure of what to expect from this disease since I’ve never heard of it. My first visit was having a lot of blood drawn. The 24th of December I went in for a phlebotomy to where they drained blood. What’s really scary is that I feel it is an assembly line and no one has really spoken to me about the disease other than I have it.

This has been rather scary with nobody explaining what this is. Just give us your blood and that is that. I do see my doctor at the end of the month. I’d rather be on the other end of this. I worked in a hospital for 17 years and never heard of this disease. Again, thank you for your kind words. Now, what confuses me is the website for Polycythemia Vera states it is a rare blood cancer which causes my bone marrow to produce too many red blood cells.

I did go for my 6 week checkup and they said I’m fine. Down side……I still don’t know what the Heck I’ve got. I had to ask on past visit as to what I have. Not ONE person/physician has told me anything!! I’ve made an appointment with my primary whom I love to death and I’ll speak to him. I’ve gone to Dr. Meyer since 1997. He will give me the answers. Also, still dealing with this being cancer or not. I had my daughter call her boss and see who the boss’s friend goes to. They call it cancer, I do know that.

Sept TDThe reason I’m stuck on the latter is that IF it is actually cancer like the latter states, then my care should be very different. I’ve received info from MPN research foundation. I’ve reviewed it and I’m still confused. From researching my PV…Lymphoma & Leukemia Foundation call it Cancer, as well as MPN website. Mayo Clinic and others have stated the same thing. This has been the most frustrating experience I’ve been through. I guess I need another me because I always got answers for my patients so they didn’t feel bad and have to continually question this illness. BUT, that isn’t going to happen. So I’ll see what my physician states.

It’s frustrating when you hear different views. My JAK2 was negative….now does that mean it is not in the bone marrow but somewhere else. I’m beginning to think that the doctors personal don’t know what it is. It has my heard spinning. Is there someone that explain the negative aspect of JAK2? I am tired, also tired of doctors and all their medicines. Still trying to make it to my heart doctor’s for yearly visit, which has passed by a few months. Hematologist doesn’t have a clue. Just checks my blood. Last two months have had to get blood drawn off. Feel better for about a day, but then feel the shortness of breath also being tired comes flooding back in again.

May be losing my house but haven’t decided on bankruptcy. Color me, very tired today.

Real patient experiences shared privately at www.TreatmentDiaries.com. Read more, share if you like or join in the conversation. Making sure you feel less alone navigating a diagnosis is important. Connecting you to those who can relate and provide support is what we do.