
No one who diets likes a plateau…except now I am thinking plateaus are a really good thing.
Going to see the cardiologist yesterday, actually speaking to a human being who is an expert about the changes in measurements on my 6.5 month follow-up echo, was an interesting roller coaster of emotions for me. On one hand, it’s good news. On the other hand, hEDS is still a wild card with more unpredictable outcomes. Last night, I certainly felt an emotional let down of sorts, just from the emotional build-up to the visit, and then experiencing the after effect of finally having the appointment and thinking to myself, “Now what?”
Either way, just like with any chronic health condition of this type, there is literally nothing I can do about it while my heart just does what it wants to do, except just keep living my best, healthy life.
Sigh. But I’d rather eat cake, lol. And I wish I didn’t have to constantly employ discipline to NOT worry about it (and to NOT eat cake).
Even though a lot of my appointment from yesterday sounds like Charlie Brown listening to his parents or teachers talk, I am pretty sure she said something along the lines of this:
“In patients with moderate-to-severe mitral valve regurgitation (MR) due to bileaflet prolapse, progressive ventricular remodeling—the enlargement of the heart’s left side—often enters a compensated phase that can remain stable for a period of time, though this plateau is highly variable and often shorter in hEDS patients due to tissue fragility.
While chronic volume overload typically causes progressive, unrelenting expansion, the heart may temporarily accommodate the volume, resulting in a chronic, relatively stable stage before transitioning to decompensation (heart failure).
- Natural History and “Plateau”: Patients with severe mitral valve prolapse (MVP) can remain asymptomatic with stable ventricular dimensions for many years (a “latent” phase).
- Plateau in Moderate-to-Severe Progression: A significant 50% of asymptomatic patients with moderate MR from prolapse will progress to severe MR over a mean of 4.5 years, meaning roughly 50% of patients may not show severe progression during that specific period.”
I think my “latent” phase, when the mitral valve regurgitation started and was mild, was after I first felt something was different, (or simply felt weird in my chest—sort of like shortness of breath), sometime in late 2018, leading to a lung function test in January of 2020 and being told I was fine.
And then it just so happened that getting that very first echo last August, and now this first follow-up echo, has occurred during a progressive remodelling due to chronic volume overload phase, as I progress from moderate to severe. BUT, I am not severe yet. I went from grade 2 to grade 3. I am NOT grade 4. As far as I can remember from what she said, I am most definitely in a “chronic, relatively stable stage,” despite the change from grade 2 to 3. My heart is temporarily accommodating the volume like a champ. Go me and my heart!
But shit, WTF, no matter what I do right now, and every day moving forward, this is not going away or getting better on its own. I am heading for an inevitable destination, and I cannot even be told when I am going to get there.
I asked her point blank, was there a chance I could avoid surgery? The answer, no. I mean, that’s what I thought she’d say, but I actually made her say it, because honestly, part of me still cannot believe any of this. Maybe if I knew I had a mild heart valve problem back in 2018-2020, and then had years and years of knowing this is my reality, (and knowing how “latent” it’s been until now), I could feel a little more confident about this most probable “plateau” phase. But nope, it still feels fresh, and raw, and new every time I have a test or an appointment.
I know it sounds simple enough. So what, I have a heart valve defect that is progressive, and I’ll eventually have to have it fixed, no big deal, right? When they fix it (try to fix it), they simply open me up, stop my heart and put me on bypass, use their expertise to sew the valve back up, or maybe replace it, and then I go home to recover and live my life…until it starts to fail…again, which is also inevitable. Why even think about it now? It’s all just something that will happen in an unknowable where and when of my future, which is entirely beyond my control. Why let it steal my peace right now, for even 1 second?
Obviously, I am not going to let it steal my peace, generally. BUT, I am not going to lie and say that for just a few seconds, it’s NOT an elephant in every room I walk into. It just is. And it takes a large part of my daily discipline to just let it be there, and to instead NOT scream and cry about it when I feel a twinge in my chest.
I have another echo scheduled for November, and then a follow-up stress test with the cardiologist at the hospital, and we will see what the numbers say. In the meantime, I just have to let it be.












