Living with AAA 4.3

We also need to put them on the spot occasionally just to see how they respond. I’ve found more than once where their response/reaction was a deciding factor in wether I would continue to dr with them. The first cardiologist I saw I asked if he would show me on a model of a heart and arteries (that was on a shelf right behind him)where my issue was. He said sure, and proceeded to draw it out on a piece of scrap paper. Needless to say I didn’t go back. The first oncologist I saw, I asked about results including using non traditional treatments. He scoffed at me and said nothing else. I haven’t been back there either. I have found dr.s since then that were willing to sincerely answer any questions I have had. They are after all working for us and I want to fully trust them. They haven’t always given me a answer that I liked, but I knew I could trust.

Firstly, thank you so much for your response to me and your ongoing support to so many others within this group. Sharing your insight was so valuable to me personally during such a stressful time. I thank you again for that.

Yes, something is definitely different with me as of recent. I plan on lightening up on my activity until I’m back in my home State. To make matters worse I am traveling and can’t wait to get back home. Thankfully not flying. I am scheduled for a CTA of my chest with contrast within the next week. However, the last time I had this type of test for my neck during an emergency ER visit and before I became aware of my AAA, my heart raced like I was in a full sprint all the while laying down. Pretty scary few minutes and I swore I would never do it again. In hindsight, my thoughts on this happening was either because of the AAA causing it or because I may be allergic to the Iodine they used for the contrast. I just conveyed that concern to my Cardiologist since he just ordered the same test. Waiting to hear back. I will update the board here accordingly.

I trust my hair loss specialist. She's an NP at my dermatologist. My pulmonologist for sleep apnea seems to be on the up and up. I found a new opthamalogist who seems okay, too. And... that's it. The rest are iffy. 🤣

I had a rheumatologist refer me to a dermatologist who specialized in connective tissue disorders to evaluate some continual redness I have. I have a high titer ANA, none of the common ENAs, and a positive HLA-B51 with a 5 cm ascending aortic aneurysm. Etc. Etc. So the dermatologist was supposed to do a biopsy to assess for lupus or Behcet's. However, he did the punch biopsy to 1.5-2 mm (not deep enough for medium-sized blood vessels), put the sample in formalin, and did no DIF staining. With sun-damaged skin, you can often see evidence of SLE in like 80% of cases, if the DIF staining is done. There is a band at the interface between skin layers that appears. That DIF staining would also light up small vessel vasculitis, showing inflammatory infiltrates. Now, both he and the rheumatologist are like, "We have nothing to go on." (Aside from the ANA, the HLA-B51, the anuerysm, the dry eyes, the new atopic dermatitis, the mouth sores, etc. ) No, they purposefully did not look. The test was a long shot to begin with and then it got completed incorrectly.

Another rheumatologist ran the ENA panel and said, "See! You don't have a posititive ANA!" I really hope he was an abusive jerk and not seriously incompetent. Because if he really didn't understand the basic tools of his trade (the ANA vs. ENA), he's a danger to patients. (To be fair, it was a multi-beaded assay that is often used in place of the IIF ANA. The beads change color based on whether those specific ENA antibodies are present. But if I know that, he definitely should have.)

My cardiologist who specializes in vasculitis knew I'd been waiting to see him rather than hit the ER with continual chest pain and rib pain. I had tried increasing GERD meds with my PCP, to make sure I didn't just have heartburn. LOL! I saw him last week. Zero imaging. We're going to wait a whole other year and run an MRA of my entire aorta.

So I guess I get to find an ER that isn't Mass General Brigham before then.

The thing is, this aneurysm was discovered in February of 2021. NO ONE has run any imaging of the entire aorta in all that time. I started seeing my current doc in May of that year. A lot of my abdominal aorta has been incidentally captured in 2018 and 2019, so I'm not too worried.

I'm gradually moving all the care that I'm bothering to continue with to Lahey and Tufts from Mass General Brigham. MGB is providing really slipshod care these days. Bare minimum, even for patients with serious diagnosed conditions. No one coordinates care. Docs do not talk to each other or look at each other's notes. Very few of them listen to patients, even with simplified spreadsheets of labs and imaging results and a short list of concerns. Heck, I finally ordered whole genome testing, because I could see clearly they were never going to figure it out. It's likely Behcet's or a Behcet's-like condition such as MHC-I-opathy. I don't just don't feel safe there.

I'm going to wind up back in Florida, like I did with the hyperparathyroidism. Except it's really hard to add flights to existing medical costs right now.

You certainly do have a lot to contend with. I'm so sorry. It's good you alerted folks to the care you got at MGB. Have you let anyone there know about your feelings about how you were treated? Don't they have surveys or something? The more I read up on aortic aneurysms, the more worried I become. Whom to trust? When to have surgery? Maybe it's the anxiety but my blood pressure, which has been under good control for years, has suddenly risen to levels above what's considered safe. I see my cardiologist in Sept. and will press for more information. This is scary stuff and those of us in this group get it. Good luck and keep asking questions.