aortic aneurysm

Posted by virginiafizz @virginiafizz, 5 days ago

Hi, have had ET and Jak2 for 12 years, have been taking HU for the last 3 years, I am 64 years old. During a routine check up my Doctor noticed a pulsating around my belly button. She did an ultrasound and said it looked normal but has sent me to an Ultrasound Clinic to double check, which I'm grateful for. She said that the Jak2 mutation can cause aortic aneurysms, was wondered if anyone has encountered this.

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Lori, Volunteer Mentor | @loribmt | 5 days ago

Good morning, @virginiafizz
Thank you for posting this new discussion about the possible link between the JAK2 mutations and aortic aneurysms. You have a very astute doctor to have picked up on the symptoms and to be up to date with the potential correlation between the two health conditions.

What are the suggestions for treatment of the aortic aneurysm at this time?

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virginiafizz | @virginiafizz | 5 days ago

In reply to @loribmt "Good morning, @virginiafizz Thank you for posting this new discussion about the possible link between the..." + (show)

@loribmt
Hi, my doctor said if the scan showed there was an aortic aneurysm they would see how advanced it was. If it was in the early stages I would need to have regular ultra sounds to measure the size of the aneurysm. If it is advanced it is life threatening and I would need a major operation that would require a stent being placed in the aorta to strengthen the wall of the aorta. Hopefully it won't come to this and as she said some people's aortas are closer to the surface and that is the reason the pulsating is more noticeable. I havè the ultra sound scan on 3 August so can give an update after this.

Lori, Volunteer Mentor | @loribmt | 5 days ago

In reply to @virginiafizz "@loribmt Hi, my doctor said if the scan showed there was an aortic aneurysm they would..." + (show)

Hi @virginiafizz Oh, don’t you just hate having to wait for answers! I’m sure you’ll be on pins and needles until Aug 3…scanxiety. Hoping you get only the best new. But please give us an update. Hugs.

virginiafizz | @virginiafizz | 4 days ago

In reply to @loribmt "Hi @virginiafizz Oh, don’t you just hate having to wait for answers! I’m sure you’ll be..." + (show)

@loribmt yes waiting until 3 August for the ultrasound is nerve racking but with luck it will be normal 🤞

nohrt4me (Jean) | @nohrt4me | 3 days ago

Hi @virginiafizz

Dad had ET many years ago, developed an aortic aneurysm. It was fixed with an transcath procedure. Not sure what yr doc is recommending as the best procedure of you, but Dad did just fine, and he was out of the hospital in a day or two.

It's interesting that JAK2 is related to aneurysms. Dad died 20 years ago, before they had identified mutations, but makes me wonder if that was a factor.

I have CALR mutation. My mitral valve prolapse got worse after ET onset, but no doc has pointed to a connection, probably because neither are real common, and certainly not together.

Docs are recommending open-heart surgery to fix valve. Lots of preliminary tests first. I've been in limbo since May with the testing, but I find the test period gives me room to absorb all the info.

It is real stressful at times, so I get it!

Wishing you the best. Keep us posted!

virginiafizz | @virginiafizz | 2 days ago

In reply to @nohrt4me "Hi @virginiafizz Dad had ET many years ago, developed an aortic aneurysm. It was fixed with..." + (show)

@nohrt4me Hi, thanks so much for the information, it's so helpful to learn of other people's experiences and how they moved forward. I live in a small town in New Zealand with limited medical resources so I find this group and Google a massive source of information. As more people share their experiences of ET and JAK 2, it would be great to find a common denominator that triggers them. Is is environmental, is it childhood medical problems/flus etc. Why is it more common over the age of 50. So many questions. Interesting that your father had and you have ET. When I asked if it was inherited, as I thought I would need to tell my family, was told no. Again shared experiences so helpful.
Good luck with your journey, please keep us posted on your progress.

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