If you followed my blood pressure saga, basically I’ve been being told my entire life I’m fat, lazy, diet is the problem, etc. And my entire life I’ve been working as hard as I can, I’m a vegetarian who eats pretty well, and I get next to no results at any form of exercise, I’m tired all the time and an insomniac all the time. So after a year of a doctor throwing worthless blood pressure medication after another my primary said “maybe we should refer you to the hypertension clinic”.
I don’t know, you think?
Get to the clinic, the clinician asks me a few questions, looks at me and says he thinks I have Cushing’s and refers me to an endocrinologist. Endo looks at my blood and says “you’re producing way too much ACTH, now we need to figure out why.” Excess ACTH = high blood pressure, fat retention, the whole list of complaints I have.
There are three tests that need to be done, and those are an MRI, a CAT Scan, and an IPSS.
The MRI took months (while I have had an mri in the past I discovered acute claustrophobia when a cage was put on my face… we discovered in testing that the thing was designed for people with smaller heads and that if I pulled the cushion out I could fit in without my nose being pressed, which seemed to be the trigger, but they kept cancelling on reschedule the day before. Three times. By the third time they cancelled I was more scared that this was not going to get done in 2023.
MRI found nothing. Orders were placed by the Endo for an IPSS and CAT scan. Got the scheduling for both and set them up.
Took a CAT scan Tuesday, it found a golf-ball sized lump in my chest pushing on a chunk of it. I had the results of it that night in my patient portal. Whether that’s part of it or unrelated I don’t know. Wife’s googling indicates potential Hashimoto’s, but I don’t know. I email the endo on Tuesday. No response. I call the Endo Thursday (I gave her a day) to see if we need to keep hurdling toward the IPSS (scheduled for next Friday,) and run into that I can’t actually get in touch with this doctor. The person who answered said she’d send a high priority message to the doc, that was yesterday at 9… called again today was told she would respond within 48 hours of the high priority message that was sent to her two days ago asking her to check her email from three days ago… lordy…
This is all happening coincidentally as I’m having my first visit with my new PCP… I’d seen her once before, I was in a five month period of trying to get a new PCP as my old one quit and nobody told me, I tossed her a note while I was sick with whatever the Lyme like illness was. So I walked in to our “initial” meeting and she was a tad overwhelmed. PCPs are supposed to be CCd on things. She had not been.
She said all of this was out of her league but scheduled me with a Thoracic doc to try and get a biopsy of this mass.
Day 3 of sitting on a potential cancer diagnosis, heading toward a potentially unnecessary IPSS ($40K procedure, general anesthesia, 1 in 2000 chance of vision loss. 1 in 1 chance of two holes poked in my groin to snake tubes to my brain via femoral arteries)
Pre-op for the IPSS discovers abnormal heart activity, most likely because that mass is pressing on the veins, or has invaded them. Don’t know. Google’s actively not helping me here.
Scary time, but does make me realize I can reschedule surgery if I don’t get an answer.
Feelings of dread, search engines that return more, doctors scheduled to the gills who make it worse. Feels like rushing and time moving at a snail’s pace.