February 1, 2013

Lingering Anger

One month from today will be one year since Mark's arrhythmia near death experience.

And I gotta say, there is still some unresolved anger regarding how everything went down.

Things should not have happened the way they did, and it's something that continues to bug us.

There have been only a couple of times over the years of dealing with Mark's health problems when we felt like he was receiving inadequate care. Like, his doctor(s) was taking a half-assed approach, not dotting all the Is or crossing all the Ts.

Unfortunately, we feel that the episode last March was one of those times.

You know how unsettling it can be when you discover that someone isn't who you thought they were? That you made an error in judgement, a mistake in trusting them? It rattles you, makes you feel unsure about YOURSELF. Makes it difficult to know who you can trust.

Mark's cardiologist did that to us. He had been Mark's doctor for over eight years prior to the arrhythmia. He had seen Mark through angiograms, stents, two heart attacks and bypass. 'Course, knowing what I know now, I wonder if he tried a little too hard to avoid bypass....

I feel like I'm being vague, so here's the thing: We are still angry at Mark's former cardiologist for seemingly writing him off. For basically refusing to call an arrhythmia specialist into Mark's hospital room to physically SEE him, pour over his chart and make a first-hand diagnosis.

He spoke with an electrophysiologist over the phone only. That guy was merely fed info from Mark's doctor.

And Mark's cardiologist gave us the distinct impression that he had no hope for Mark. He gave up.

I can understand how that could be an easy thing to do. When you list out all of Mark's problems, it is overwhelming and looks logically like he shouldn't be able to survive so much.

It honestly wasn't hard to convince Mark's entire family that he was at death's door.

But they were wrong. Not just wrong that Mark wasn't going to die yet, but wrong about his diagnosis!

If it hadn't been for Mark's plucky and steadfast kidney doctor (nephrologist), we may have never known the truth and Mark may not have received the correct treatment, which very well could have led to his death.

That is not dramatics; it is the truth. Mark's cardiologist diagnosed him with Atrial Fibrillation when it was actually Ventricular Tachycardia, which is much more serious. When we finally got Mark to an electrophysiologist, he told us that if he had treated Mark in the hospital, he would not have left without an implantable defibrillator, and his walking around without one was very dangerous.

Two weeks before meeting the specialist we had gone to see Mark's regular cardiologist for a post-hospital follow-up. I asked him point blank if Mark's problem could possibly be anything else. He gave me a definitive NO. But when Mark's shiny new electrophysiologist called the cardiologist at my tearful request (because I was hoping to get everyone on the same page), he said, "Oh yeah, I suspected V-tach all along."

WHAT?? You lying liar!

Up until then I had been trying to give him the benefit of the doubt, while Mark had already decided this guy just didn't care about him anymore. I was all, "No, that can't be. How can a doctor do that?"

Apparently they can. Not only that, but so did other doctors in that hospital last March. It was a bit insane. They saved his life the first night he was there, but then endangered it with "hospital acquired pneumonia", and continued to endanger his life by not calling in a specialist. Mark had to be intubated twice because his heart wasn't responding to treatment because they weren't treating the right problem!

Because of all of this, we had to talk about hospice and other end-of-life issues. Mark even signed a DNR at one point because he thought he didn't want to be shocked again! It was a nightmare.

All of which could have been avoided if the necessary specialist had been called to Mark's bedside to make a completely informed diagnosis. Arrhythmia is a tricky thing. Why the cardiologist thought a phone consult was good enough I will never understand.

It is any wonder Mark did survive it. I give credit to his nephrologist for stepping up to advocate for Mark when I was too bewildered to. Everyone who loves him flocked to Mark's side and buoyed him, giving him strength for the fight. And he, Mark himself, decided he wasn't done. All the doctors treating him for those 13 days really did was fuck up.

It is so disheartening to feel this way, to feel like the next time Mark has to be hospitalized I will have to be hyper vigilant in making sure the doctors are doing their best for him. It is already exhausting to deal with a hospitalization, let alone have to also question everything you're told. And to not know if you can trust these people who have your loved one's life in their hands? Awful.

I know Mark has myriad problems. I get how taking one look at his chart could overwhelm a doctor or nurse. But dammit, you don't just throw your hands up and decide he's a goner. You fight for his life until he takes his last breath. You fight for his family and children. You sure as hell don't play God, deciding you know what's best all on your own. If you're not 100% sure of a diagnosis, you seek another opinion. And not just over the phone. A person's life is worth more than an obligatory phone call.

Now I know to ask for more, to demand it if I have to. I hope anyone who reads this will remember it, and do the same for their loved one.

1 comment:

  1. What a terrifying experience. I'm so glad someone helped stick up for you when you needed it. Thanks for sharing your story so we will feel strong enough to stick up for ourselves when we need to. I'm glad you're husband is okay.

    Happy Sharefest. I hope you have a lovely weekend.