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About peacelovehomeschooling

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    Hive Mind Queen Bee

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  1. I hope you get all of these things. Many hugs...
  2. For my husband to be okay. We are waiting on a confirmation of polycythemia vera (appt is Nov. 25th). I just want him to be healthy and for this to essentially be a non-issue in his life. For him to live a long healthy life despite this diagnosis and for it to never progress to anything more.
  3. I am praying for your grandson. Thank you for the update. Many hugs to you.
  4. @redheadmom. This is very helpful, thank you. Yes, I noticed this week they had been reclassified as cancers. I didn't know why. His dr hasn't mentioned yet, but I expect it to come up when we meet with him after the bone marrow biopsy. I haven't told my husband yet but need to before we go for that follow up.
  5. Thank you. Do you have a good resource to direct me to to learn more about Myeloproliferative Neoplasms? I am not on Facebook.
  6. @AMJ. This is very helpful. Thank you so much. I hope that your dad continues to respond well to the med and holds off any further complications from this disease. My husband is very good at following the directions he is given and will whatever his dr (and nurses) tell him to do. I do believe he has developed this within the last year and a half or so. His labs for his physical in July 2017 were normal. They were abnormal in May 2018 but with a change in diet and increase in water they normalized and remained normal at a follow up in Dec 2018. Then in Sept this year were abnormal again which is what bought him a trip to hematology. I am hoping that bodes well for him remaining in the PV status and not having myelofibrosis. Until then it is just a whole lot of waiting....which is hard.
  7. Thank you all for your responses and stories. It is reassuring to know that others are living good healthy lives with this disorder. I welcome any all prayers and good thoughts as he goes through the bone marrow biopsy and we wait to hear the results. Hopefully it will show clear marrow and just confirm the PV and he can get started on treatment to get it under control.
  8. Thank you. My husband is 55. I appreciate any and all good thoughts and prayers for him. If you think of anything else that could help us please let me know. I know just enough to be paralyzed with fear (I'm non-practicing RN with peds oncology as my specialty).
  9. My husband has been diagnosed with JAK2 mutation and possible plycythemia vera. However, before that is listed as a final diagnosis he is going to have to have a bone marrow biopsy. My fears are that the JAK2 could be causing more sinister issues. His JAK2 came back as positive 11.7%. I am not sure what that means and if it could have any meaning for the likelihood of anything else going on with him. Do any of you know anything about this? Also, anyone with PV or knowledge of it is treated....the chances of it developing into anything more....anything at all that I need to know? I haven't researched myself because, to be honest, I wasn't expecting the JAK2 to come back positive. Now I just feel blindsided (as does my poor husband) and I know enough to have scared myself close to a panic attack.
  10. I had chicken pox as a child (the vaccine hadn't been invented yet). No, no shingles thus far. My husband also had chicken pox as a child. He got the shingles vaccine this year. I am supposed to get it but they haven't had it in stock to get it, so no telling when I will get it.
  11. I am very sorry you are going through this. I hope you are able to get answers and good treatment. If you don't mind sharing, what other autoimmune disorders do you have (I have 3 myself)?
  12. Who needs screens when you have these people to follow and watch daily. What an oddball group of people.
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