Aortic Aneurysms – Introduce yourself & meet others

Go to the cardiology web sites in the hospitals near you or that you’re interested in, look at the providers and their profiles, most Dr profiles will have a section with clinical interests or research interests. For example the profile of my cardiologist says:
CLINICAL INTERESTS:
Adult Congenital Heart Disease
Bicuspid Aortic Valve
Thoracic Aortic Aneurysm
With that I know this Dr specializes in what I’m interested in. BTW in my case he truly is, my cardiologist is an aneurysm/aortic valve nerd which has been incredibly helpful (I had an ascending aortic aneurysm which was repaired and a bicuspid valve which will need replacing at some point in the future)

At 80, I feel great. However, the cardiac surgeon suggests open heart to fix a regurgitating aortic valve and, while he's there, to replace a 4.5 cm ascending aorta. I am looking for another, less invasive, solution but finding a cardiologist/surgeon/counselor who understands the options AND Medicare insurance reimbursement is near to impossible here in Raleigh, NC. How do I go about identifying sources/resources with aortic valve/ascending aorta experience? Thank you.

Hello,

I am brand new to this group and not even sure that I am starting on this support group at the proper place. This is my first online support group ever.

I am 63 years old, very active, asymptomatic, work 25 hours a week at least, but have a concerning future ahead.

I just reached out and sent my records to the Mayo Clinic in Jacksonville, Florida.

My diagnoses: congenital bicuspid aortic valve (should be tricuspid) with 4.0 ascending aortic aneurysm growing annually at 0.1cm rate. Complicated by undifferentiated connective tissue disease (UCTD) and thankfully in remission since 2023.

I need an interventional cardiac surgeon with UCTD experience. Does anyone know of a Mayo Clinic intervention/cardiac surgeon like that?

Also, my cardiologist told me that those of us with UCTD have a window of time when connective tissue can be sewn up in surgery. Do we know when that time is? Is it related to our heart ejection fraction? When does my opportunity for surgery cease?

These are the questions that buzz around in my head way too much.

Thanks,
Kay

Viperron, I think it is normal to have daily fear when you know you have no control of when the rupture might occur. I too think of the difficulty of surgery and the healing time since I am 77 years old. How old are you Viperron? I do believe in Quality of life over Quantity of life. However, I really haet the thought of my loved ones mourning my death so deeply when I am gone. I saw their trauma whe their Dad, Grandfather sudenly passed away at 63. The greatgrandsons never knew their great grandad but hear us talk about him. I am the only parent and grandparent left. I wish the FDA would approve the TEVAR graft for an ascending aortic aneurysm using the femoral insertion (closed surgery) method. Cardiothoracic surgeon and Pumonologist all agree that I am at very high risk of not making it through the AAA open heart surgery. God is so good and I do feel blessed to be aware that I have limited days on earth and that I must get my "ducks in a row" for the benefit of my loved ones. As to when the rupture takes place, I just pray that I don't suffer pain for long or that some HERO decides to try to save me and I end up in a wheelchair at best for the remainder of my life. Quality over Qantity. May God help us BOTH thru all of this.

Being a grandmother is fantastic! Being a great grandmother is truly a blessing from God above. As great as a grandchild is, seeing that grandchild have her own children is beyond any type of euphoria imaginable Donna White. I am just trying to spend as much time with them as I can without causing my family too much worry. I don't want my death to come as a surprise to them. However, I also do not want them worrying about me. Its obvious to them that I am not the same person I was before I contracted severe COVID and have continuously gone downhill. I do believe that having autoimmune disorders makes you more susceptible to a stronger reaction to viral and bacterial exposures. I had managed my Mixed Connective Tissue Disorder, Lupus, Sogren's and Hashimotos Thyroidits well until COVID came along. Then that Bilateral COVID Pneumonia did an enormous amount of damage to my lungs muscles. The Ascending Aortic Aneurysm (AAA) just seems to get a little larger every year. Being short stature with a 5.5cm reading places me at a high risk for rupture.

I am going thru almost the same thing with an AAA plus an ascending anyuresm . I believe in GOD but struggle everyday with the fear , I could get an operation but I do not want to go thru all that at my age. I catch myself saying when I get a pain “ let’s burst and get it over with” but I don’t really want that. Very stressful. May GOD help thru this 🙏🏻

What you say here touches my heart, no pun intended. I've always said my goal is to be a great-grandmother. My older grandson is 20 and nowhere near having a family. It's very sad to think of our loved ones going on through life without us. You are very brave.

I just found out after a CT scan I have a AAA. 5.2.
Going to wait 6 months and get scanned again. If the same?
I don’t know.
My vascular surgeon says if it grows to 5.5 cm I must have surgery to repair it!

Bless you sweet lady, Donna White! I too am a 77 years old lady and only 5 ft. tall. My ascending aortic aneurysm measurers 5.5. I have mixed connective tissue disorder and bilateral Pulmonary fibrosis with early honeycombing courtesy of Severe Covid Pneumonia, hospitalized 2 weeks in Dec 2020. I have never smoked in my life, maybe have one serving of a social drink ever 24 months. I have gained weight since the hospitalization because of ongoing weakness (long COVID). I do not have a problem with high BP or high Cholesterol. I am not a good candidate for open heart surgery because of lung damage, high risk for Post Op Pneumonia, inability to get off the Vent after surgery, etc per my cardiothoracic surgeon and my Pulmonoloigst. I am grateful to be alive but I can't help but think that I am living to die. I know that we all are and perhaps I am lucky to KNOW that my time is limited. Most likely, there are other people out there who have never had a reason to have a CT scan and therefore possibly unaware they even have an aneurysm. Guess I am the lucky one who is preparing now to take care of those who I will leave behind. I prefer to think of this aneurysm as an unexpected blessing. My soul is at piece but my mind wants to stay around to watch my dear sweet Family grow in the coming years. I try not to be in my own "pity party".

You'll find lots of support and some answers here. I hear a lot about long wait times for appointments. I thought perhaps it was just in my part of the country, but it seems to be the case all over. I know it's worse in other countries, but surely this is an issue that needs to be addressed. Truth is, I get most of my medical information from the internet, then I know what questions to ask my doctors. We're on our own here, folks.