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Aortic Aneurysms – Introduce yourself & meet others
Aortic Aneurysms | Last Active: Dec 11 7:12pm | Replies (581)Comment receiving replies
54F in Greater Boston. Married 32 years to the same man. We have 2 kids. The eldest is 22M and in his final year toward a B.S. in Industrial Engineering. He struglles with 2 LDs & ADHD-PI. (I have ADHD-PI as well; so does my dad.) Our youngest, 18F, has profound autism & moderate intellectual disability.
VERY out of shape and working on my diet (primarily) and light exercise. I'm limited to 20 lbs per arm, but no HR/BP limit? Weird.
I have an ascending aortic aneurysm, found on nuclear stress test in February of 2021. It was 4.7 cm. It's now a 5.1 cm.
Seeing my CV surgeon 10/5/23 to get more specifics on the surgery: Where, specifically, is this aneurysm? Are branching arteries involved? How does he feel about the revised guideline to 5 cm being surgical intervention point, down from 5.5 cm? How many of these surgeries has he done? Who will be working with him?
There will be an emphatic declaration on my part that I don't want students even in the operating room, let alone assisting in my surgery. I'm putting this in writing several places. I don't give a flying fart in space if they're a teaching hospital.
Background: I had a disastrous surgery in December 2018 at a teaching hospital in Maine that left me with a surgical site infection, open wound care for weeks, and 3 suture site hernias still to be repaired. I've done my tour of duty. No more students practicing on my body.
I have a million inflammation markers that are just vague enough that no specialist will deal with them: ANA (speckled, 1:1280), C3, total complements, IL-2R, IL-6, IL-10, chromogranin A, etc.
I'm worried about rheumatological conditions that cause vasculitis, but can't get a rheumatologist to engage based on the markers I have. Too vague.
I have recurring hyperparathyroidism. No one wants to deal with that, either.
I'm just a medical mess and need to start taking better care of myself, despite the aneurysm.
Replies to "54F in Greater Boston. Married 32 years to the same man. We have 2 kids. The..."
Hi larak,
So sorry to hear about your medical conditions.
You do have a lot going on! Hopefully you can find ONE trusted medical professional that can put into English what your “next steps” in order, for what your care should be. Seems like all of us need a patient advocate to understand and make sense of “their”world. Hopefully you’ll find that one person. Wish you the best of luck! csd
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Ask your doctor to show you where it is located. Ascending means it is the part of the aorta that your blood first enters the heart as it goes up to the arch. Mine was on the arch. Listen to your doctors. My was found accidentally at a measurement of 4cm. No way to tell how long it was there. A year after I was cleared of any problems with my heart and told to follow up yearly I ended up with an emergency double aortic dissection. I was in perfect health other than the aneurism. I ended up with 3 areas that were patched (one at the valve, the one approaching the arch and one descending after the arch leading to my legs) and one stent. The surgery was a welcome event considering I’m still here. The surgeons told my husband I could be considered a miracal. Most people don’t make it to the Er and if they do they don’t make it out. Think positive. Start walking (important in aftercare) and trust your medical team. I’m sorry you had a bad experience. Find someone you trust. Tell them about your experience but you need to have confidence in your team! The alternative here is not good. Good luck on your journey.