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Essential Thrombocythemia: Looking for information and support
Blood Cancers & Disorders | Last Active: Nov 4 11:06am | Replies (597)Comment receiving replies
Hi! I’ve had ET for 34 years. Was diagnosed at age 21. I’ve been on hydrea for so many years without any complications. I’m starting to feel fatigue and shortness of breath even though I’m very active and feel healthy. My doctor is recommending a bone marrow biopsy to make sure I don’t have scarring. I’m a bit concerned since I’ve not had any issues but now that I’m 55 I’m worried things might be getting worse. I’m scared to do the bone marrow biopsy since when I had one 33 years ago it was awful… I’m guessing it’s a lot more improved since then. Any info anyone can give me would be great! Also I want to tell many of you recently diagnosed that you can live a normal lifestyle without complications like me for so many years!!!! I’ve really not had any side effects!! Take care!! Joni
Replies to "Hi! I’ve had ET for 34 years. Was diagnosed at age 21. I’ve been on hydrea..."
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Hi Joni, thank you for sharing your positive story about having ET for 34 years without complications. That’s really encouraging for other members who have been diagnosed with this blood condition. Since you’re having some different symptoms it’s wise to have this checked out.
Opinions on what a bone marrow biopsy feels like are as varied as there are people! I have a good friend who breezes through hers like a trouper without any sedation. Me, on the other hand, I feel like I’m a pretty tough old bird and have a high tolerance for discomfort, but there will always be ‘happy sleep’ with IV sedation for me from now on.
IV sedation is the same used for a colonoscopy. You’re under for less than 15 minutes and wake up refreshed with no knowledge of the event. I’ve been fortunate enough to have my last 10 at Mayo Clinic where I wake up to Lorna Doone’s and Apple Juice to get me perked up! 😀
Most clinics offer sedation but if it’s not available, don’t panic. First, you will always have a local anesthetic injected at the site. That really does help to have the area numb. Also, you might ask your doctor for prescription of Lorazepam (Ativan), it’s an anti anxiety med that takes the edge off of the experience. It’s important and helpful to be able to remain as still and calm as possible. I relied on my prior Lamaze training to help with the 3 biopsies without sedation.
Most practitioners are gentle and understanding of the discomfort this can bring. But don’t be shy about asking for IV sedation or at least an anti anxiety med to dull the experience if you’re concerned. It’s personal choice and no shame in requesting to be as comfortable as possible!
Here’s a little informational article on bone marrow biopsies (bmbx) that you might find helpful. (It’s only the first section of the article! The rest of the article keeps going with other blood conditions which aren’t related to your ET).
https://www.healthline.com/health/leukemia/why-cant-you-be-sedated-for-bone-marrow-biopsy
I’m here anytime you have questions. Let me know what you find out, ok?