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How did you make the final decision to begin HU protocol for ET?
Blood Cancers & Disorders | Last Active: Jan 22, 2023 | Replies (75)Comment receiving replies
I'm so grateful to have stumbled across this group. I'm 40 years old & was recently diagnosed with TB. My blood count is currently at 615 & I get blood work done every 3 months to monitor the progression. There was talk about starting me on medication but after my hematolosist presented my case to a panel she opted to just have me take 2 baby aspirin a day. I've had a lot of stress and anxiety steaming from this diagnosis as I'm still trying to learn what all this means for me. I'm terrified everytime I get bloodwork done and I have to hear the results.
Everything that I've read talks about a 20 year life expectancy. I don't know how to get past that information. I was trying to conceive & suffered 2 miscarriages before the diagnosis & now doctors dont know if the TB caused the miscarriages. I've wanted to have another baby but now with this diagnosis & everything that I'm reading I feel completely lost & overwhelmed. I find myself doing a lot of crying at the thought of not being able to live out a full life. I'm hopeful that processing all of this gets easier with time. Hearing that there's others that have successfully dealt with TB for a long period of time gives me encouragement & hope. Thank you.
Replies to "I'm so grateful to have stumbled across this group. I'm 40 years old & was recently..."
Hi Erikaerika…
I have a question. We’re you diagnosed with TB….tuberculosis? Or were you diagnosed with ET….Essential Thrombocytosis?
Eileen
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It is absolutely an overwhelming diagnosis to receive. I spent many weeks worrying and crying, wondering if my children would find me after throwing a clot somewhere. I taught my then 7 year old how to dial 911 if it ever happened. My hematologist is amazing, and after many visits crying in the office with him, he reminded me that stressing over it will do absolutely nothing for me in the present, and that really the only long term studies on life expectancy after this diagnosis are done on older people anyways, as this is most commonly a diagnosis of older aged individuals. There's really no way of knowing what other conditions they could have had that could have potentially led to a faster death than younger individuals. He explained that studies have not really been done on younger people diagnosed with this, and there is the potential to live a full life if properly managed. As an ER nurse, I see very often how no matter how healthy you are, your life can be taken in a split second by tragic events. I was initially very stuck on the 20 year life expectancy as well, but I try not to dwell on what may happen in a couple of decades and try to live for today. You never know when your time to go is, and I'm not willing to let this take me down any faster. Processing the diagnosis absolutely got better with time for me, and I try not to stress over what I cannot control. Hugs to you ❤️