Newly diagnosed and/or living with ascending aortic aneurysm…anxiety
How do you guys cope with the knowledge? My 4.2 CM ascending aortic aneurysm showed up incidentally on a CT scan for a back sprain.
I haven’t had follow up as I write this. It is scheduled for the 11th with my primary care Dr. Will I get another scan of my chest to confirm it???I live in Hawaii… fearful of it not being taken seriously and having spiked high blood pressure from Stress and anxiety cause more damage. I would appreciate your insights… thank you in advance.
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I remember finding out and being so surprised. I thought I had a pulled muscle in my chest (which I did) or it was my heart murmur making my heart beat too fast. Nope after tests and confirmations, I was diagnosed with ascending thoracic aortic aneurysm. After the shock wore off I realized I was not going to die quite yet. I read everything I could find and then started reevaluating my situation. My nerves were a "hot mess". I was reevaluated to 4.1 by the cardiac radiologist and told I was in the "survivance group" and they would retest in two years. At first, I said, but I could die in two years and then I said, no I can live. This site helped me so very much in reading other experiences so if somewhere or never down the line surgery is needed I am so much calmer. Since I am in my 70s and walking is my only exercise there is no lifting over 30 lbs and to continue my walk routine but slow my walk on the treadmill to 2.2 . I purchased a bracelet to alert others of my issue when I travel about on my own (cruises) which I have only worn once. Mindset is your go-to. I focused on others sharing their stories and positive inroads to new medical information, and most of all I decided in my mind not to focus on my aneurysm. I know easier said than done. Some of these sites have shared stories of others that have not had any growth in years. Seek mental health help if needed to get your head around the diagnosis, a professional can help you find your personal way to deal with your stress. I pray you will find a way to your peace and know you are not alone in this.
My experience is much the same as booklover71. I found out by accident, freaked out, educated myself, and decided to make the changes needed to live my life.
I wanted more data to know whether my ascending aortic aneurysm was stable or growing, so I've had a CT with contrast dye and an echocardiogram every 6 months for the past year and a half. Seeing stability in the data has helped me stay calm. I check my BP for 5 days each month. My cardiologist added a beta blocker to my BP medication as a dual strategy to lower the pressure of blood flow. I wear a medical alert bracelet and now have a "wardrobe" of bracelets to go with different outfits 😁. See laurenshope.com
I've lifted weights all my adult life and tended to lift and haul stuff all the time. That has been the biggest change for me. I miss doing weight training and I don't like needing to ask for help, but better that than a dissection hoisting my carryon suitcase into the overhead bin.
Hang in there. This is a process of change and acceptance. Knowing it is there means we are much less likely to die from a sudden dissection.
I think that everyone "freaks out" a little at first. I think we'd all be liars if we said that we didn't.
But like any other life event, like losing a big job, or a divorce; allowing the emotions to work themselves through is necessary. Then, you can come out the other side with a clearer mindset.
I had a family history of Aneurysms; my Dad had two abdominal Aneurysms, about 15 years apart, and died from the second one because he refused to get follow up checkouts after his first surgery in 1987. My Ascending was discovered during a routine Calcium Score CT. Yes, it was scary. In fact, I felt myself "checking out" as I was sitting in my new Cardiologist's office, as he was explaining all of this new information to me. I freaked out inside to myself for about a week or so. I have some experience with yoga and meditation; so I decided to use this event to "go inside more"; that is to say to use the experience to slow down a little bit (not entirely), do more hiking instead of 160 bpm bicycle hill climbs, meditate more, educate myself on this new thing I'm living with, a new diet that I need to embrace, and practice what I preach more; which is to try to "be" with this new reality as much as I can; and let it teach me whatever its going to teach so that I can further myself in my life a little bit. I know that sounds a little New Agey and weird; but this is how I want to approach my experience with this. Seems to work for me.
As far as a "what's next" – for me, my Cardio has ordered another CT, this time with the injectable dye to check the heart valves, and to confirm the aneurysm size, etc. Idk what's after that, I suppose we'll see. Mine is initially measured at 4.5×4.5 cm, ascending.
I have found an App that works with my Apple Watch called Pulse Alarm; it allows one to configure a max heart rate while exercising; and it will both vibrate and audibly beep my watch when that rate is met or exceeded. My Cardio set a max heart rate for me at 130 bpm. It eliminates the hard bicycling that I used to do, but that's OK with me. I can still to the gym (both lighter cardio and weight machines) with the help of the Pulse Alarm app.
It's gonna be OK. It's scary, yes. But we're gonna be OK. One day at a time. Keep up with us on here, too.
I’m surprised that all of you seem to have a “let it be” attitude. I recently had a cat scan for my artificial mechanical aortic heart valve and a 3cm aneurysm showed up in my abdomen by using contrast dye.
I was at one hospital ER for something unrelated when the usually normal CT scan came back revealing the aneurysm in my aortic artery near the celiac vessel.
The doctor came back to the exam room and said “we are going to have you transferred to a trauma hospital for emergency surgery”. I asked why and he said I had that confirmed aneurysm “but it has a tear in it” . I said ok and off I went.
When I was examined at the trauma hospital. Their cardiovascular surgeon said “you’re going to have to come back to the hospital but right now it isn’t bleeding so the team feels you’re stable enough to be discharged”. Then he said that I should see my own cardiovascular surgeon ASAP.
I made a phone call to my surgeon and asked to be seen as instructed by the trauma hospital’s ASAP instruction but he said All hospitals say ASAP and laughed.
I told him that I needed to see him soon. He said that tomorow would be fine but “you know we have an appointment in 2 months”
I said it’s important for me to see you sooner and the office made an appointment for me the next day. When I arrived there I was greeted by a smug secretary. “You need to wear a mask and pointed to a mask holder near the door.
I sat in the lobby by myself as nobody but me was there Finally his radiologist came to get me and he did a sonogram or cardiogram ( I’m not sure).
After he was done he showed me to an exam room. He started talking to me like I was bothering him and he was clearly annoyed with me and he took it lightly and was in a rush.
He said “I didn’t find anything
( but 2 other cardiovascular surgeons did??) as he was rushing out the door I said “could it burst?” He turned around and said as a matter of fact it could but we have ways of treating that” (when?) “while I lay on the grass after jogging?”
People would think that I’m having a heart attack when I wasn’t. A burst aneurysm is usually fatal isn’t it? Anyway he just said “it could” and was taking it lightly before he closed the door.
Staff person came to take me out of the exam room and pointed to the way out to the secretary (who was still rude).
He said “ see you next year!” I know he had to get back to seeing other patients who had appointments but he basicallly blew me off.
I knew it was only 3cm but it’s torn! Now. I’m thinking of getting another opinion. What should I do?
Thank you for taking time to write back. I appreciate your thoughtful and empathetic response. I have read it more than once and find your experience a balm to my nerves.
Thank you for sharing the website. I need something pretty and the bracelets etc sure fo fit the bill.
Thank you for sharing your experience and how you cope. I think I’ll get that watch app too. If I may ask, are you taking a beta blocker? Or ACE inhibitor? I have a hard time keeping both my heart rate and blood pressure down when I’m anxious. My watch APP alarm may go off so often, I’ll become more stressed😅. Thanks again for your response🤗
Thank you Mermaid1. Your reply was wonderful. The ID bracelet idea and ct with contrast and echocardiogram sound like a good plan. I’m hoping to get my first one very soon as I only know I have ann aneurysm but no details ( hence more anxiety since I feel some pressure and burning in my neck and back…) and don’t have an appt with a cardiologist that deals with the aorta yet. Are you being followed at the Mayo Clinic? I live in Hawaii and if I don’t think the care ( based on fact we only have 1 million folks in the state and this isn’t all that common) is cutting edge or at least highest standard of care, I will be flying out to Minnesota. My husband’s family lives 30 miles from Rochester. Thank you again… ordering bracelets ( and maybe a necklace!) and asking for the CT scan and echocardiogram every 6 months… 🌺Much Aloha 🌺
I am taking Amlodipine Besylate 5 Mg and Atorvastatin 10 Mg Tablet. My blood pressure goal from my doctor is to keep it less than 130/80 mmHg. I had both a Transthoracic Echocardiography and a CTA chest with contrast. In 2022 prior to finding out, I went on four cruises that required lots of walking but it was after the last one I thought I pulled a chest muscle pulling luggage off the carousel (which I did). I am feeling chipper and praying you will get the answers. I decided to not let this health issue hold me back but like you, I needed answers and resources. I am sending positive thoughts your way.
Hi, Ginny –
I'm very new to all of this; my Aneurysm was just found like three weeks ago. My new Cardio put me on a Statin, but nothing for Blood Pressure (yet). My aim is to keep from taking medication if I can help it.
I've practiced yoga and meditation for a few years now, and even though I get nervous at all of this too, the breathwork from both practices really does work to slow the body's systems down and thus lower heart rates and blood pressures. I have to take my BP twice a day, and have found that it takes me two or three times with some concentrated effort to slow things down to get a good reading.
Even just something as simple as four square breathing helps.
Inhale for 4 seconds
Hold for 4 seconds
Exhale for 6 seconds
Hold the exhale for 4 seconds
Repeat for a minute or two and then check your BP and see if it helps.
Feeling grateful for groups like this. Good luck and let us know how you're doing!