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I'm scared. Just sayin... also med ID bracelets?
Hi - new here. I'm 40, F, with 4.5 Ascending aneurysm. It has been increasing at a steady pace for 10+ years. I don't know why I have it - no family history & no known risk factors. I feel scared a lot. Sometimes I feel up for the challenge (recovering from the looming surgery); other times I feel terrified it could leave me further disabled. I already work much harder than I can handle, trying to earn a living in a body that already has several other chronic (and disabling) conditions. I honestly have no other option financially. I love working - and want to keep working, but would prefer to only work as much as my body is able. But I digress...
I feel afraid that 1) the ticking time bomb will go off before 'expected,' and 2) that the surgery might end in complications, leaving me with further disabilities that render me unable to continue working going forward.
Because of the timing of past health emergencies/recoveries & schooling, if I were to attain social security disability, the amount I could get would never come close to paying the bills. Moving in with family is not an option - I cannot maintain mental health in those homes. But I know in that respect, I am future tripping. I don't know if there will be complications with surgery. But it's hard to not worry because based on my track record, for my age, I'm not terribly lucky when it comes to health. I have a few significantly difficult diagnoses (not referring to aneurysm), as well as a list of "early-onset" this and that. So it's hard not to worry. I do, however, feel lucky about the 9-month cough I had years ago that led to the incidental discovery of my aneurysm.
For the past 12 years, since I had a traumatic brain injury, all I've been doing is trying to become self-sufficient/independent. After intensive brain rehab, I finished college, and then grad school, and started a career (but working more than I should). And now this... Mostly looking for support.
Also - curious what thoughts are on having a med ID bracelet for this? I feel like it would give me a little peace of mind, but I'm also nervous maybe I'd just be making too big a deal out of it (?) Thoughts? Anyone else get one? I don't want to draw more attention to my medical needs. I also don't want it to constantly remind me about the aneurysm. But I'm afraid it would be the last thing they think of checking at my age - I worry they might focus on other things like the controlled meds that I take (red flag for drugs), or my past hospitalizations for severe anxiety.
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In Sweden, where I live, it is only my social security number that gives access to my medical records, so when I call our emergency number, they see my high risk of stroke and my continuous follow-up of my aortic dissection.
Hi,
I was diagnosed with thoracic aortic aneurysm 11 years ago at 3.7cm. 5 years ago I was at 4.0cm. Now I’m at 4.7cm. So I feel the need for surgery is coming in about 5 years too. I am currently 51.
My grandfather had an abdominal aortic aneurysm. I was at his home when it ruptured and he died at 62 years.
I am anxious about the waiting and have also thought of a medical bracelet. I like your term mindful preparation and the other lady who shared her medical necklace and ideas.
Grateful to you all and this community.
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1 ReactionI ordered a medical bracelet as soon as I was diagnosed. It's like a talisman if nothing else. I always expected to get heart disease; it runs in my family. But no one that I know of ever had an aneurysm. This whole business is very scary and this group will help keep you grounded.
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2 ReactionsFirst, I don't think there's anything wrong with having a medical bracelet that indicates you've got a potential for aortic dissection. It might help paramedics or EMTs in the event you are having a dissection and it's mistaken for a heart attack. It certainly can't hurt. Second, but I would say your energy should be focused on making sure you've gotten a second opinion from a world class care center like Mayo, Cleveland clinic, University of Texas at Houston, UCSD La Jolla, University of Minnesota Minneapolis. If you're at a 4.7 and you're 51 years old, I think you're probably on the edge of making a decision to have the surgery. I had emergency open-heart surgery at the age of 50 and I am now 60. It was really brutal emergently, but I know that most people have a much better outcome when it's a plan scheduled surgery and there is no emergent dissection. So if you have a surgeon who is willing to do the aortic graph and or valve work, depending on where your aneurysm lies I would personally do it now rather than wait. The medical bracelet idea is sort of a Band-Aid because well it will alert somebody to what the problem is potentially if you can't, if you dissect, there's a pretty good chance you will not survive it. I'm not saying that to be dramatic. I'm just telling you the reality is that once you dissect it is very difficult to get you into surgery opened up and stable enough to do the repair before you bleed to death. That's the reality of you're facing. So, medical bracelet is perfectly fine, but it is not going to save you. Listen to your doctors and follow the plan. They've set out for you. Get a second opinion from an experienced qualified thoracic surgeon and a major care center here in the US. You're smart to be thinking about what a good plan is and that is half of the battle. Peace.
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1 ReactionI would think that if having the bracelet gives you even a little more peace of mind, that it would be well worth getting one. Actually, I would consider it a sensible thing to do! 😉
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1 ReactionI have a Medic Alert tag that slips around my FitBit band. I always wear my FitBit, so nothing extra to remember. 🙂