Aortic Aneurysms – Introduce yourself & meet others

@joanp57 i am one of the one percenters. But sometimes amongst us we talk about those more urgent and critical than us. Someone like you it seems.
Well done to you for making it through, and more to you for telling us your story.
My aneurysm was 6.5 but I dissected. The ambulance never showed but fortunately my wife got me to a major hospital. In so doing she saved my life.
Joan, you have a purpose. There is a reason you are still with us and given another chance. You don't need to understand it but you do have it.
For a year I wandered through my days searching for mine. Full of anxiety, doubt and often fear I realised my purpose was to advocate for myself and help others to understand what had happened to me. I meet every month with others like me to talk as friends who share a common story. And this is so helpful to overcome my fear of the future.
I encourage you to find others like yourself and take the journey together. You will always remember, but over time you will not look back.
There are brighter days ahead. You just need to get out into the sun and enjoy them.

I just got off the phone with the Internal medicine specialist who diagnosed me wih biscuspid aortic valve and aortic dilation 4.1. The internist said to carry on with my activity level and she will redo the echocardiogram in 3 years. She told me also told me the dilation progression is usually 0.2-0.6 per year... If I understand this correctly you should consider surgery when the dilation is around 5.. By her own calculations.. 0.2 go 0.6 increase per year puts me at 5.3 in two years.. Yet the eccho is not done until 3 years... She said she would order me a 24 hr BP monitor and CT scan for calcium score. She forgot to order the 24 hour bp monitor....

Next BP.. I was advised to monitor my own BP with an OMRON bp machine... which I did. I took the BP multiple times a day. after a couple of weeks.. All readings were "high" ... ... Then she told me the family doctor is usually the one who puts patients on medication. She said I was "too anxious" and that if she hadn't told me I had this diagnosis, I wouldn't have known about it. ... "Just carry on as I was before".... she will reassess in 3 years.
I told her on line resources recommend lowering BP, no heavy lifting, easy to moderate exercise. I asked how to get Travel Medical Insurance if I have a heart condition that is not stable.. she said this is "Mild".
Anyhow.. she asked if I wanted a referral to a cardiologist and I said yes, please... again referring to my anxiety..
Oh well. I guess that's a positive move forward.. I'm not anxious when I know the facts and know somebody has got my back. I like to get my ducks in a row...and let go of the things I can't control.

Any other advise would be welcome. Do you I a medical alert bracelet?? How do I describe this to get travel medical insurance??

I just got off the phone with the Internal medicine specialist who diagnosed me wih biscuspid aortic valve and aortic dilation 4.1. The internist said to carry on with my activity level and she will redo the echocardiogram in 3 years. She told me also told me the dilation progression is usually 0.2-0.6 per year... If I understand this correctly you should consider surgery when the dilation is around 5.. By her own calculations.. 0.2 go 0.6 increase per year puts me at 5.3 in two years.. Yet the eccho is not done until 3 years... She said she would order me a 24 hr BP monitor and CT scan for calcium score. She forgot to order the 24 hour bp monitor....

Next BP.. I was advised to monitor my own BP with an OMRON bp machine... which I did. I took the BP multiple times a day. after a couple of weeks.. All readings were "high" ... ... Then she told me the family doctor is usually the one who puts patients on medication. She said I was "too anxious" and that if she hadn't told me I had this diagnosis, I wouldn't have known about it. ... "Just carry on as I was before".... she will reassess in 3 years.
I told her on line resources recommend lowering BP, no heavy lifting, easy to moderate exercise. I asked how to get Travel Medical Insurance if I have a heart condition that is not stable.. she said this is "Mild".
Anyhow.. she asked if I wanted a referral to a cardiologist and I said yes, please... again referring to my anxiety..
Oh well. I guess that's a positive move forward.. I'm not anxious when I know the facts and know somebody has got my back. I like to get my ducks in a row...and let go of the things I can't control.

Any other advise would be welcome. Do you I a medical alert bracelet?? How do I describe this to get travel medical insurance??

@patti14 Seeing a cardiologist is a great step forward (again I am aware of the restrictions in Canada). Things for you to take into account as you talk to the cardiologist: Echocardiograms can give a measure of the aneurysm but they are not the most accurate, a CT scan will be more accurate and usually used to establish a growth rate. The Echo will be used to monitor your BAV though. Establishing the growth rate is important in your case, just having an estimate that is based on "what usually happens" is not enough, you need to get your actual growth rate determined and that is usually done by several periodical measurements, that will help your cardiologist determine a much better follow up protocol.
You also need to get a baseline of the health of your BAV, only a cardiologist can do that based on the Echo results. The functionality of BAVs may deteriorate over time and in some cases (if not most) will need to be replaced. In my case for example, mine gets checked every year and this year it went from mild to moderate, which means it has deteriorated a bit from past years, my cardiologist told me I will need to have it replaced before I develop symptoms, when you start getting symptoms your heart is getting taxed and starts getting affected, I estimate mine will need replacement in 4-5 years. BAVs can be replaced endovascularly (lower risk procedure) but not with an aneurysm.

As others have said, try to stay calm, knowledge is power, the more prepared you are the better questions you will have and will allow you to insist on follow up protocols that are better for you. Your aneurysm is on the small side, so probability of rupture/dissection are small, but controlling your BP is paramount, high BP may contribute to more rapid growth.

As I have said many time, stay active, treat your body well, try to control your anxiety. Yoga, intense exercise, travel, spending time with family work for me, I am sure you can find activities that can help you, also consider seeing a professional (therapist) if your feel you need help.

All the best

@houston13 Thank so much for the info. I have received a cardiologist assessment date for end of July. You mentioned "intense exercise" to control anxiety... how do you know how intense to go?? I thought we were supposed to "take it easy" and not stress the heart..