Managing Anxiety with an Aneurysm

@rockpir
Google: vital blood pressure wrist monitor, version WEB306. This site will not let me post a link.

I am still trying to find time to figure out how to set up the wrist monitor. The instructions are printed so small, its not readable. Had to order an online user manual.

@rockpir
Google: vital blood pressure wrist monitor, version WEB306. This site will not let me post a link.

I am still trying to find time to figure out how to set up the wrist monitor. The instructions are printed so small, its not readable. Had to order an online user manual.

I have not entirely figured it out, either.

What I have realized is that, even with other considerations that could be addressed (regurgitating heart valves, dilated pulmonary arteries, high titer ANA, etc.), doctors aren't going to do anything helpful anyway. They are waiting until you are "emergent" and need surgery ASAP. Hopefully, they time it right.

I've spent years and thousands of dollars trying to get answers as to why this happened, what the heck is going on with my inflammatory markers, why no one is concerned about all my heart valves regurgitating and increased PVCs that have made my heart rate unmeasurable by standard equipment. ( I have to be measured by EKG sometimes, otherwise I look like I have severe bradycardia.) I don't get it, but they either don't care or have nothing helpful they can offer other than "Keep your BP down." Oh, and "Lose weight." I have given in and am on Zepbound now. I'm down nine pounds, so it's a start.

I don't think they utterly don't care. I think they don't respect older women much to begin with and that most of their metrics are still geared toward men. Both are huge problems. I think they stay in their lane so entirely that they miss things they could be doing. Major cardiac centers say they have interdisciplinary teams. I've yet to see it and I've been to a few in Boston. Cardiology does not talk to rheumatology. Does not happen. They do not give a rat's patootie about records from your eye doctor, your dermatologist, etc. All of whom want you to see a rheumatologist and have even referred you. 😂 I think most doctors are insecure and threatened by AI technology, so they refuse to listen to it or use it. Whatever answers you find on your own, they are not going to help you pursue them. I have years of labs, imaging reports, and my full genome sequencing. AI has some definite ideas of what is going on and additional labs have indicated good ole Gem (Google Gemini) might be right. Does. Not. Matter.

My advice? Save your money. Focus on what you have control of: a nourishing diet, light exercise, keeping or getting weight down, prioritizing your spiritual life, and connecting with friends and family.

Do keep your BP down and get your annual scans. (If you just found out about the aneurysm, it should be every six months for a year or two. They need to know growth rate.) Find a thoracic surgeon who specializes in aneurysms and who has done a ton of the surgery you're going to need. See them annually, or how ever often they need to see you to be available if you need to schedule. Oh, and if anyone tries to give you a fluoroquinolone antibiotic like Cipro, say no thanks. Aortic rupture is one of the rare side effects. There is an FDA black box warning for this.

Then, live your life. This isn't something you can solve. You can only control those things within your sphere of influence. And really, the goal is to never have the surgery. My ascending aortic aneurysm is 4.9 to 5 cm. Given stent technology for ascending aneuryms has not progressed (yet!) to transcatheter procedures, I'd be looking at open heart surgery. I don't want that. Mine has only grown .2 cm since February 2021, so I'd rather just live with it while I can.

Best wishes to you. I hope it helps somewhat to know there are 200,000 cases of aortic aneurysm diagnosed in the U.S. every year. And this is a likely a vastly underdiagnosed condition because it's largely asymptomatic for most patients. Experts estimate that hundreds of thousands more are affected. That's a lot of people and the majority of us are just out here living our lives, many with no knowledge of what is going on in their body. Your odds are really good of never having this become a life-threatening event. This is what I tell myself anyway.

@larak Great advise and information. The way I see it is that at least we are blessed to know that we have this condition and we can have our regular checkups and hopefully prevent the worst compared to the people that are just living their life without knowing.

I have not entirely figured it out, either.

What I have realized is that, even with other considerations that could be addressed (regurgitating heart valves, dilated pulmonary arteries, high titer ANA, etc.), doctors aren't going to do anything helpful anyway. They are waiting until you are "emergent" and need surgery ASAP. Hopefully, they time it right.

I've spent years and thousands of dollars trying to get answers as to why this happened, what the heck is going on with my inflammatory markers, why no one is concerned about all my heart valves regurgitating and increased PVCs that have made my heart rate unmeasurable by standard equipment. ( I have to be measured by EKG sometimes, otherwise I look like I have severe bradycardia.) I don't get it, but they either don't care or have nothing helpful they can offer other than "Keep your BP down." Oh, and "Lose weight." I have given in and am on Zepbound now. I'm down nine pounds, so it's a start.

I don't think they utterly don't care. I think they don't respect older women much to begin with and that most of their metrics are still geared toward men. Both are huge problems. I think they stay in their lane so entirely that they miss things they could be doing. Major cardiac centers say they have interdisciplinary teams. I've yet to see it and I've been to a few in Boston. Cardiology does not talk to rheumatology. Does not happen. They do not give a rat's patootie about records from your eye doctor, your dermatologist, etc. All of whom want you to see a rheumatologist and have even referred you. 😂 I think most doctors are insecure and threatened by AI technology, so they refuse to listen to it or use it. Whatever answers you find on your own, they are not going to help you pursue them. I have years of labs, imaging reports, and my full genome sequencing. AI has some definite ideas of what is going on and additional labs have indicated good ole Gem (Google Gemini) might be right. Does. Not. Matter.

My advice? Save your money. Focus on what you have control of: a nourishing diet, light exercise, keeping or getting weight down, prioritizing your spiritual life, and connecting with friends and family.

Do keep your BP down and get your annual scans. (If you just found out about the aneurysm, it should be every six months for a year or two. They need to know growth rate.) Find a thoracic surgeon who specializes in aneurysms and who has done a ton of the surgery you're going to need. See them annually, or how ever often they need to see you to be available if you need to schedule. Oh, and if anyone tries to give you a fluoroquinolone antibiotic like Cipro, say no thanks. Aortic rupture is one of the rare side effects. There is an FDA black box warning for this.

Then, live your life. This isn't something you can solve. You can only control those things within your sphere of influence. And really, the goal is to never have the surgery. My ascending aortic aneurysm is 4.9 to 5 cm. Given stent technology for ascending aneuryms has not progressed (yet!) to transcatheter procedures, I'd be looking at open heart surgery. I don't want that. Mine has only grown .2 cm since February 2021, so I'd rather just live with it while I can.

Best wishes to you. I hope it helps somewhat to know there are 200,000 cases of aortic aneurysm diagnosed in the U.S. every year. And this is a likely a vastly underdiagnosed condition because it's largely asymptomatic for most patients. Experts estimate that hundreds of thousands more are affected. That's a lot of people and the majority of us are just out here living our lives, many with no knowledge of what is going on in their body. Your odds are really good of never having this become a life-threatening event. This is what I tell myself anyway.

@larak
Hi, I read you comment, and can relate with my experience with cardiac thoracic surgeons. I am getting the standard protocol of waiting until at least 5.0 measurement of my AAA. Mine is 4.7 cm and stable for 2 years but it was discovered I have a congenital bicuspid aorta instead of tricuspid, that has probably caused the AAA. I have autoimmune disorders, Hashimoto's and Sjogren's disease. Sjogren's can cause systemic symptoms and I am at 30-40% for cardiac events even without the heart issues I have. The surgeons seem only focused on their protocol for surgury which will have to be done since the aortic valve is calcifying and both will be repaired with open heart surgery, (eventually). I have an appt with Rheumatologist in June, which takes months to get in. Will she be concerned about the cardiac issues and communicate with cardiologist. Remains to be seen. Otherwise, I just wait and see. Cardiologist never asked about my BP, cholesterol. I am proactive about my health, but have changes in cholesterol and BPs with my autoimmune issues. Going to a Naturopath who will at least listen to my whole story. If I were you I would pursue the autoimmune issues, with more autoimmune panels. At 5.0 cm, you should be considered for surgury.

@sherrylou51b I've been told, since mine is slow-growing and I'm only 56 years old, waiting until 5.5 cm is okay.

I am concerned about the cardiac changes: valve regurgitation, dilated pulmonary artery, the PVCs that look like bradycardia, exhaustion upon exertion to a ridiiculous degree that keeps getting worse. But, so far, no one else is.

I have a high-titre (1:1280) ANA with AC codes 8-10 (systemic sclerosis). I am HLA-B51 positive (Behçet's). Mildly elevated chromogranin A. I have occasional elevations of C3, some cytokines, and metanephrines. The latter cause occasional BP spikes, but it hasn't happened for a while.

I had secondary hyperparathyroidism, likely from kidney issues affecting nutrient absorption. That may be related to systemic sclerosis.

I have diagnosed dry eyes. I have recently diagnosed atopic dermatitis. I have an egregious number of contact allergens. I have poor circulation (not quite Raynaud's, blue fingers and toes, not white) and poor wound healing without diabetes. Likely small vessel circulatory issues. And, of course, the debilitating joint pain, fatigue, and brain fog. The shoulder and hip pain shows up on MRI as non-erosive inflammation.

Because it's not a slam dunk clinical picture, rheumatologists have been unhelpful.

I really have tried. There is a lot of information available. I haven't even summarized it all here.

But I can't make doctors do anything. I can only make me do things. I've pretty much given up on all doctors, but need a couple to access a thoracic surgeon.

@pear1714 Yes. At least we know to avoid all the fun rides at Walt Disney World and taking up power-lifting as a hobby. 😂

We are a little better off for knowing some of the stresses to avoid.

@larak the good is that I don’t like rides, love Walt Disney thought