Health saga — the whole story (so far)

04 Jun

TL;DR Three independent problems, and the immediate picture is open-heart surgery within the next month. The long-term picture is gradual recovery.


The symptoms that started all of this are not too different from the symptoms of myasthenia gravis, but not identical, either. Fortunately, they’re also not identical to ALS — that was the big terror.
Problem #1 is a motor neuropathy. It takes much more effort than it should to move my skeletal muscles even minimally, so any activity at all is disproportionately fatiguing. It hasn’t been formally diagnosed yet, in part because insurance is balking at the cost of the diagnostics. If it’s what the neurologist thinks it is, it’s treatable, an the treatment is lifetime schedule of IV immunoglobulin. I’ve got an appointment with a neuromuscular specialist, but it was a two-month wait to see him and the appointment isn’t until the end of June. The hope is/was that the insurance company would be more likely to listen to him and pay for the expensive diagnostics which, if they confirm the guess, lead to the even more expensive treatment.
Problem #2 was discovered while still casting about for the right specialty to match the weird symptoms that I’ve been having. The cardiologist found a very rare congenital abnormality where oxygenated blood that should be feeding the cardiac muscle is getting pointlessly shunted to the lungs, due to holes between the cardiac arteries and the pulmonary artery. I had a heart catheterization today that confirmed that the reduced oxygen to the heart hasn’t done noticeable damage so far, but in another 10 or 20 years it would become progressively more dangerous. At its current stage, t’s surgically reparable.
Problem #3 was discovered during the cath. It is a nearly blocked coronary artery that needs bypass surgery, and that somehow evaded all of the cardiac workup that had already been done tracking down Problem #2. Single-bypass surgery is routine these days. The surgeon came by after the cardiologist showed him the cath results. He’s confident that he could fix both problems at once, but the blockage is sufficient he doesn’t want to wait long.
The main concerns remaining are how the problems interact. The neuropathy probably means that my cardiac rehabilitation after surgery would be slowed, and the cardiac rehab may mean a delay in starting the treatment for the neuropathy. All of this can be dealt with, and I expect to get back to or in the general vicinity of the full function I was at six months ago. But it might be another six months or a year before I’m there.

Posted by on June 4, 2013 in Health


3 responses to “Health saga — the whole story (so far)

  1. mysticlez218

    June 4, 2013 at 8:18 pm

    First off *Big warm hugs!* I am so sorry for all your problems Naga!

    “confirmed that the reduced oxygen to the heart hasn’t done noticeable damage so far, but in another 10 or 20 years it would become progressively more dangerous. At its current stage, t’s surgically reparable.”

    Second, this is good news though if its surgically reparable!

    Sending all the warm wishes and positive thoughts I can possibly muster all in your direction.

  2. slapshot

    June 4, 2013 at 8:22 pm

    I’ve been following this on twitter for a while now, and it’s good to see that you’ve finally gotten some results back.

    I was wondering to myself if it wasn’t ALS, but didn’t want to even bring that up. (medical stuff, especially SCARY medical stuff, scares the shit out of me)

    I get very angry though, when I hear talk of insurance companies balking on paying for needed services. No worries though, I’m not going to get all political here

    The important thing is that these issues are repairable, and you will be able to fully recover. My best wishes go with you and Jalan as you work through a difficult time.

    • nagadikandang

      July 1, 2013 at 6:40 am

      Thank you, Stephen.

      Yeah, the ALS was the massive fear. Pretty much the worst-case scenario for the symptoms.

      As it happens, I’m now only about two weeks away from the next testing run. I don’t know how much physical function I’ll regain (or continue losing), but the foundations of my life — my integrity in my sense of self, and my partnership with Jalan — are intact regardless.


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