Venting

@stk You said, "...I am currently thinking that I may have to move to get an area where I can get better care (and to where my wife can actually get an appointment with a rheumatologist)."

I say "Look before you leap!" Access to excellent medical care is a concern shared by millions in this country. With the aging population, insurance companies dictating many aspects of care, and fewer young people entering hands-on patient-centric specialties, even in major "medical marketplaces" ready access to care is uncertain. Unfortunately, the highest density of specialists often is in the highest-cost living areas.

Is there a middle path for you? Can you look at a major metro area near you, but within reasonable travel distance, where both of you can find care? Even if it requires the occasional overnight stay in a hotel, it would be cheaper and less disruptive to life than a relocation.

@sueinmn You are correct. There are two larger nearby metro areas that I will look into. Thank you.

Hello, I just wanted to reiterate that I totally agree with @sueinmn and add support to her suggestions. I, too, live in a rural area with limited medical resources but I travel to a larger metro city for second opinions or for some speciality services. I ensure that copies of all medical notes/tests, etc., are forwarded to my rural cardiologist so that they have all the clinical information available. I have learned that “the grass isn’t always greener” the hard way, and I know I that have to stay proactive on keeping my medical care team informed. Our overall healthcare system has become very fragmented post-COVID and requires our own due diligence of our health information. Sounds like you are on top of your health information too which I feel is so important these days. Best of luck to you and your wife in your health care journey.

A lot a mis information on MyChart as well.

@stk

It’s hard to believe in this in age with the advanced technology and resources at our disposal that something as important as this is being mis-managed. I don’t want to assume it’s human error as many other factors could be involved. My thoughts are 3 actions: 1. Always stay 100% up to date as to what’s on your personal portal and immediately questioning in-accurate (or confusing) data on you; 2. Running from this problem doesn’t help you. Reporting to the right authorities and getting it fixed helps you and many, many others in the future. Easier said then done but if you’re persistent enough and make enough noise it will get fixed. Wish you all the best with both this step and your overall health.

I have a 5 cm ascending aortic aneurysm with a dilated pulmonary artery, chronotropic incompetence, leaky valves (all of them), and increasing episodes of PVCs with trigemi. I also have a history of hyperparathyroidism with two glands removed, various GI conditions including Barrett's esophagus (which is, essentially, pre-cancer), a high titer ANA with other elevated immune markers: C3, cytokines, chromogranin A, gastrin...

I lived outside of Boston for 3 years because I thought care would be better there. It wasn't. Rheumatology is a hard field to find a decent specialist in. Most specialize in run-of-the-mill arthritis. Not systemic sclerosis sine scleroderma, which is what I likely have.

Do not move without establishing care with someone you like first. I don't care if you're moving to a medical center. There is still no guarantee that you'll get a decent doctor. Lahey, Beth Israel, Mass General Brigham... None of them would address the obvious or look beyond whatever little niche they specialize in. You are on your own diagnosing yourself. You still have to get enough data together in a coherent format, with receipts, and get it in the hands of the right doctor who specializing in whatever you think may be going on. Hopefully, they'll be intrigued enough to help you figure things out.

But do not move first and do not wait for your doctors to figure things out. They won't. They're likely just waiting to crack you open to make those sweet surgery dollars. Be proactive and do your research.

Thank you

Yes I've learned that you have to be your own advocate. It seems like Dr's are so busy and get tonthr point of uncompassionate care, maybe not intentionally but with all the restrictions of health insurance that doesn't help. I sure do pray for you to get better care.

Unfortunately the patient has to be very knowledgeable about their cons and pros with lots of research since medical centers are requiring more unnecessary surgeries and could care less what the quality of life is afterwards. The cardiologist had obtained approval for open heart surgery but not the follow up CT chest scan which I had to fight for to see if mine had increased after 6 months
I am not keen about open heart surgery at 67
Does anyone have ideas about exercises on this?

@shirleydm It is frustrating to say the least with the way healthcare is now. My dad was recently in a nursing home for a fractured hip and shoulder, yet they would not do any assists. They also messed with his meds and dietary needs stating they had no idea. It was a hassle and we couldn't get him out of there quick enough.