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SAMEOSAMEO's Message Board Messages

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Hi:

I have found what I think is a very caring and knowledgable hematologist. He found that my white cell levels are too high along with the red cells and he has put me on oxygen for the next 3 months. If my white cells level out he will then do the bone marrow biopsy. While I'm not looking forward to the biopsy I am happy we are on to a plan. I feel like I'm moving forward anyway. Thank you for your prayers and I send them your way also. I know what you mean about the itchy skin. I look like I have the chicken pox lately. I have those good and bad days also and listen pretty intently when my body is yelling at me. I hope your days are tolerable and thank you for the kind words.

Karen

Thank you so much for the help. I was hoping I wasn't just being a hypochondriac when I got a little upset that he thought it was no big deal. I thought exactly the same thing. What the hell is he waiting for? And he didn't even offer any suggestions as to what I should be doing in the meantime, which I thought was a little scarey. He's a hematologist but I wasn't comfortable with him from the get go. My primary referred him to me. I will get on the phone immediately and get 2nd opinions. 

Again, thank you. 

Hi:

I had my first consult yesterday for my diagnosis with PV. The doc told me that if I were to have a Phlebotomy it would kill me because my white cell levels are high also. He is going streight to the bone marrow biopsy. It's scheduled for the 21st of Nov. Like you I cannot walk from one room to the next without panting and having to sit before I can talk to anyone. I can't even do my yoga, which I miss. I have a oxygen machine I use at night when I sleep but that's not helping anymore. I think I need to get a 2nd opinion on the Bone Marrow thing. I have no idea who to go to tho and I'm sooo sick of hearing "Take your baby aspirins everyday" or "Your levels have been up for 4 years, what's three more months going to hurt" HELLOOO, It's going to hurt me!  If I go to the Mayo Clinic, which is the next best thing to the Univ of Minnesota. How do I ask another Dr. for their opinion?  What will they need from me? If anyone can help with this I sure would appreciate it.

Karen 

Hi:

I have recently been diagnosed with PV and like you my head is spinning with the diagnosis and trying to find out more about it. I liked reading what everyone said in here. I didnt realize you had to watch what you ate also. My first Dr. Appt for this is on Wed the 22nd of Aug and would like to go in armed to the teeth with questions. Does anyone have any good ones to ask. I have no idea what to ask! 

Thanks for your help

Karen

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