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Replies to "I can definitely relate to being a little freaked out. I was only 35 when I..."
Blood Cancers & Disorders | Last Active: Jul 14, 2023 | Replies (92)
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I can definitely relate to being a little freaked out. I was only 35 when I was diagnosed. I remember my heart sinking when I was told. I was thankful my mother came to that appointment with me because I really don't think I could have driven myself home. I am now 43 and have had 5 different hematologists over the last 8 years. I have had ups and downs with my symptoms and my levels going high. But just know that is manageable and it is possible to still live a normal life. I would like to say that if you need to talk at all to reach out at anytime!
Replies to "I can definitely relate to being a little freaked out. I was only 35 when I..."
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Thank you for reaching out and sharing your story. Before the diagnosis, I’d never even heard of the disorder. I truly hope my hematologist is on top of things as I would hate to have to switch that many times, BUT I have no problem doing so if I feel I’m not getting the care I deserve. How long did you have symptoms before you were actually diagnosed? I’ve only had one bleed and am scheduled for 5 more in the next 5 weeks to get my levels down. Not sure how long my levels have been elevated so I’m really hoping my organs are not damaged from pumping thick blood over that time. How are you feeling now?? Hopefully you are doing well.