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ET with Jak2 and allergies/fatigue

Blood Cancers & Disorders | Last Active: 11 hours ago | Replies (17)

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Profile picture for debhammel @debhammel

It is challenging to manage a disease like ET. I was diagnosed in October, 2023. Mine was found while diagnosing colitis and Exocrine Pancreatic Insufficiency. The blood tests revealed platelets of 792,000. I was referred to a hematologist/oncologist (whom I adore!), had a bone marrow biopsy and started Hydroxyurea (HU) along with one low-dose aspirin daily. My platelets dropped quickly into the 200,000s and my HU dosing was changed to only 4 days a week with 3 days off. Yes, it's exhausting. All of my chronic diseases cause fatigue, and all the meds to manage them do so as well. At 71, I rest often, try to get enough sleep, and don't beat myself up when I am too tired to participate in an activity or event. The key is to do what you can and enjoy it, modify other activities if possible so as not to wear yourself out, and be kind to yourself.

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Replies to "It is challenging to manage a disease like ET. I was diagnosed in October, 2023. Mine..."

@debhammel I have a few years on you (8 to be specific), and agree with all that you say. The trouble for me is that I am a stubborn, old woman who is used to being competent, and in charge. I am learning that aging is a series of losses, and as you say make peace with some of it. My problem is finding the line between "giving up" and moderating activities.