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Profile picture for Lori, Volunteer Mentor @loribmt

@birgitr dear, My goodness, you should have no hesitation using your newly acquired English skills! Talk about impressive. I’d say you’ve mastered the language and express yourself quite eloquently. 🥰. Thank you from the bottom of my heart for your heartfelt response.

I really do try to ‘practice what I preach’. I spent too many of my younger years worried about what if this happened, what if that happened…and none of it ever came to fruition. All that time wasted with worry. Then, later in life, when I actually did face my mortality with leukemia, I dealt with that one day at a time the best I could. Keeping a sense of humor and being as positive as possible throughout.

Changing attitudes doesn’t come over night. It takes practice with daily positive affirmations, switching negative thoughts to positive outcomes, little changes like that. Over a short period of time it becomes natural to have a more genial outlook. ☺️

As for your quesiton about the importance of VAF (variant allele frequency) and the impact on the development of ET…While I’m aware of allele burden definitions and that they may be useful prognostic biomarkers, that way is above my pay-grade. 😅
You have some great questions that warrant answers. So my suggestion is to write these questions down and ask them at your next appointment with your hematologist!

As for life expectancy, we have many members in Connect whom have been diagnosed with ET…from newbies to veterans still living multiple decades later. Each person’s situation is unique to them. So again, longevity questions would be for your doctor to answer.

But if it’s of any consolation, many doctors of members in Connect, including my own hematologist when he and I discussed myeloproliferative neoplasms (such as ET and PV) have anecdotally stated, “The majority of patients pass away with these blood conditions than from them.”
So keeping with my perspective of staying positive and forward focus, I’d say just get about with your life. If something changes, then you’ll deal with it at that time! Your doctor monitors your labs and will watch for trends. Nothing will happen over night.

I did a quick search for all the discussion surrounding ET (essential thrombocythemia) where you can jump into any conversation with other members such as @janemc @nohrt4me @mikecaldwell just to name a few.
Here’s the link to my search: https://connect.mayoclinic.org/search/

Wishing you a lovely week ahead! You mentioned that you teach maths! I expect that you’re a wonderful, well-respected teacher! Sending you a hug!

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Replies to "@birgitr dear, My goodness, you should have no hesitation using your newly acquired English skills! Talk..."

@loribmt yes I am feeling utterly blessed being part of this community and particularly being accompanied by an expirienced and most importantly so perceptive mentor like you.

What me mostly hit was your ability to let go from your worries and change your attitude towards a more positive and optimistic one. Thank you so much for sharing 🙏🌹Honestly my past mindset resembled your previous one. I have been overthinking things regularly even when the issue itself was from minor priority. It took me most of my adult life to realize what really matters , not to put things on the backburner and learn how to avoid pondering too much .
For this reason is this specific desease for me a new challenge in terms of living a fulfilling meaningful life besides without being defined by the health issues although and particularly no one knows how things a gonna go. Last point is crucial for me to achieve ,because I was always craving for knowing how things could evolve ( maybe this is especially a trait from someone who loves mathematics 🤣🤣, here the result is cristal clear).