Connect
← Return to Polycythemia Vera: Just been diagnosed
Discussion
Polycythemia Vera: Just been diagnosed
Blood Cancers & Disorders | Last Active: 20 hours ago | Replies (399)Comment receiving replies
Hi, @clarissa37, and welcome to Mayo Clinic Connect. It sounds like your mom has been through a lot with this diagnosis and its symptoms, and then the stroke. I also agree with you that you can find information supporting - or quite the opposite - about anything you'd like on the internet.
Hoping that members here will provide you some support and solid assistance as you are looking to get some answers. Please meet @atir @chadknudson @apr931 @mwear @juiceinjc. They may have some experience with using oxygen and taking or deciding not to tak Vitamin C or D3.
Also, I thought you'd be interested in this Mayo Clinic information on polycythemia vera https://www.mayoclinic.org/diseases-conditions/polycythemia-vera/symptoms-causes/syc-20355850.
Did the doctors explain the why behind their recommendations of "as needed" or "nightly" for using oxygen?
Replies to "Hi, @clarissa37, and welcome to Mayo Clinic Connect. It sounds like your mom has been through..."
So today my mother went to the hematologist, she did not have to give blood her numbers looked fine. She told her doctor that she didn't wear her Oxygen except as needed. He said that it was good and if she cut back her iron intake it would be a lot better. So he told her no more cereal for snacks. I guess that would go in to the Vitamin K thoughts I had. Her regular physician said that she should wear the oxygen as precaution for her lung capacity is not so well. But that all she knows actually. She does have some prior lung surgeries as a child and COPD so it could just be a recommendation from him. But I have been reading the other posts and the information provided by the Mayo clinic.
I think this is where I would like to keep getting my research from. I mean my brother cant argue with the clinic right? And thank you all for all your help.
Connect
Thank you for your reply, I look forward to hearing personal experiences that may shed some light on how they cope.
They originally put her on oxygen about 4 years ago, she often gets bronchitis and such and has had a breathing treatment device for many many years. when her oxygen dropped into the 60s the ER actually got her with the people to have in home oxygen and they said to use it at night or if her oxygen got to a certain point, basically as needed. Her hematologist told her to use it throughout the day. I really am not sure I have the whole backstory on that part, I will ask her and see and make sure to post it.