Her Heart Matters: Women, heart disease and support

Hello @jmmg - I would like to add my welcome to @karukgirl and offer my virtual support as well. I would also like to share our Aortic Aneurysm support group with you as well, https://connect.mayoclinic.org/group/aneurysms/ where other members are talking about ascending aortic aneurysms also.

Thank you, Justin, I have been watching the threads and hoping that all the little pains and other symptoms I'm dealing with are just anxiety and not indicators of rupture, etc. The waiting to get a doctor to talk with me is torturous.

First, jmmg, a consistent blood pressure of 139/87 for 10 ten years is hypertension. Get a new Primary Care Physician. This is certainly poor medical care your blood pressure was not addressed nor treated. It most definitely should have been and likely has contributed to your development of an enlarged ascending aorta and be aware, genetics, could have also played a role in this condition. Heavy exercise is a No No for you. My husband has an aortic aneurysm, diagnosed by accident in 2015, and was instructed not to dead weigh lift over his head (he was a construction worker and did exercise with weights for years) plus and this is the big one...when we first meet I would checked his blood pressure (I am a retired RN) and it was always sky high. This was a man who never went to a doctor, blood pressure had to be elevated for years. Of course, all that changed once we became serious and married. Now he follows all my "orders" and is under the care of multiple physicians AND on 2 different blood pressure medications, cardiac medications. His B/P is perfect now. Annually he has his aneurysms measured via CT Scan or MRI and it is not enlarging, staying around 4.3-4 cms. At 5 cm. surgery will be indicated. We had just gotten married when his aneurysm was picked up by a routine chest x-ray and we were devastated and so frightened. We ended up seeing an Aortic Aneurysm Surgeon (that's all he does) at Mt. Sinai MC in NYC who calmed us down. I would suggest this is what you need to do...find the best treatment center/physician/surgeon who will monitor you closely. You might need to contact the top hospitals in the country. US News and World Report has their annual ranking of hospitals and specialties in the US and they are top notch. Take a look at their rankings...just google it. And once you decide where to be evaluated the squeaky wheel gets the greased. You must advocate for yourself very strongly and hope and pray you get a compassionate scheduler on the phone who will help you get an appointment. Also remember you can ask to speak to a patient advocate or a RN - tell your story...I believe they most likely will help you to get a timely appointment. You must first get your blood pressure down...that is not helping your condition. I wish you the very best of luck. I/my husband and I have been in your shoes and know how scary this is. Just get the right care and your anxiety level will decrease. Ours certainly did. It will happen for your too 🙂

Thank you, Briarrose, for all your information. I was able to get in to see the cardiologist last week and it was not comforting. I am on blood pressure meds and they seem to be helping. Unfortunately, when I asked about surgery and meeting with a surgeon I was told the hospital doesn't do aneurysm surgeries and if I have a rupture then I would need to go to San Diego or Los Angeles to a different facility. They would "do their best to get me there in time. My "hospital" is 4 miles away from my home. Those two places are at least 2 hours from my home. Unacceptable! I am doing what you suggest. I have the names and numbers of several surgeons and hospitals outside my insurance plan and will be asking to at least have a consultation. I certainly don't mind paying for good care. My husband's cancer issue is so stressful so I'm wrapped up in his daily care so it can be difficult to be positive that I can live with a 4.5 enlargement without dissection. Best of luck to you and your husband. Thank you for the encouragement! This is a difficult path for sure!

Does this group deal with seemingly incurable arrhythmia? I’m in the Mayo arrhythmia group, but looking at this page today for the first time, there seems to be useful info here, too. It seems that arrthhmia folks are more in the “Dime a Dozen” category with all cardiologists,and no innovative research is being done”. . My experience with my arrhythmia surgeon is good, but he’s having to do a second ablation as the 1/24 one didn’t stop my 5 year history of gradually increasing BPM (now regularly in the 130’s). I react badly to propofol, and repeated cardio versions and now repeated ablations are causing severe mental deficiencies (memory, confusion). I just get the feeling from all cardiologists that AFIB folks are second class patients, and we are offered few treatment or research options. If the May 2d total ablation of my AV node and a reprogramming of my pacemaker (to have it slow my BPM) doesn’t work, is it “wait for your stroke” now?
Can this group offer help? Does Mayo have arrhythmia specialists?

@ferret911, if you would like to seek a second opinion with Mayo Clinic cardiologists, you can request an appointment here: http://mayocl.in/1mtmR63