Caregiving

Getting hit by a bus doesn’t mean it’s your time

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What do you say when the nurse says your husband should be dead?

To hear those words is sobering. Haunting. I keep thinking to myself, he could be gone. And it keeps coming back into my head. He could be gone. He could be gone. I am having a hard time shaking the thought, even a week after hearing the words.

For new followers of this blog, you should know that my husband is a heart transplant candidate. He had open heart surgery in June (read about it here) and doctors implanted an LVAD inside his chest, a left ventricular assist device, otherwise known as a heart pump. It has kept him alive while he is waiting for a heart to be available for transplant.

Our lives have been going relatively well since open heart surgery this summer. He is driving short distances and doing more of the household chores and errands. He changes his own dressing every three days at the wound site, where the drive line from the control unit passes through his body to attach to the magnetic pump that keeps his blood flowing. Changing the dressing was a big step for him, because I think he was a little afraid of it. I changed it for the first several weeks after his surgery, but now he is very comfortable doing it himself — so comfortable that he took a trip South alone to visit relatives just a few weeks ago. He was proud that he could fly on his own. And I was proud of him. The trip really built up his confidence. It was fun to see.

He came home and was a little tired, but that seemed normal. And in a week he had bounced back. Then things seemed to change. He complained some about being fatigued after his workouts. I didn’t pay too much attention to it, because he still seemed to be doing well, and in fact, his lab numbers, which get checked every week, were fine. By Saturday of last week, though, he seemed excessively tired. He also didn’t have much of an appetite. He didn’t have a fever, so while I was perplexed, I didn’t worry too much because he had a regularly scheduled doctor’s appointment on Monday.

But on Sunday I had to remind him to eat, to fill his pill holders, and to change his LVAD battery. He is usually extremely on top of this stuff.

All that to say that I should have been listening to the voice in my head telling me, this is not like him. Something is not right. But I didn’t listen to the voice.

Instead, on Sunday morning I helped him as much as I could, then cooked, and when I finished, I went to check on him. After some talking, it was clear he was disoriented. His LVAD started to alarm. The LVAD control unit said “low blood flow” — not good.  His LVAD couldn’t circulate enough blood through his body to keep him going.

And finally he passed out. His version of being hit by a bus.

I called 911, and then the emergency pager set up for LVAD patients at Henry Ford Hospital, and immediately an LVAD coordinator called me back. The coordinator is a specially trained nurse who works with LVAD patients. She stayed on the line with me until my husband was in a squad headed to Henry Ford Hospital in Detroit. I followed them in my car after grabbing his backup batteries and control unit.

In the emergency room, they were expecting him, thanks to the LVAD coordinator calling ahead; he immediately went to the front of the line and was treated quickly. A blood test showed his hemoglobin to be at 2.9. Now pay attention to this: Most people’s hemoglobin levels are 12-13. For him and other LVAD patients, normal is around 10. One of the nurses told us that everyone in the ICU was amazed he was still walking around with such a low hemoglobin number, because frankly, he shouldn’t be.

Walking around, that is.

She said the lowest hemoglobin number she had seen up to that point in her career was 5. And she’d only seen it once.

But anyway, thank God he’s still walking around, and once again, he has miraculously come back, thanks to the good doctors and nurses at Henry Ford and his own will to survive. We both realize it isn’t his time yet. He’s not done.

An upper upper G.I. procedure revealed a blood vessel in his stomach that was “squirting blood” as on LVAD coordinator described it. The doctor who performed the procedure clamped the vessel in three spots to stop the bleeding, and after a second look in two days later to make sure there was no more bleeding (there wasn’t), this fix is taking care of the problem. My husband’s hemoglobin is now back up to 7.4. Doctors are still working on some other issues as a result of the bleeding, but he will be out of the hospital soon, hopefully by Thanksgiving, though no promises.

What have we learned from this? Well, a couple of things. We know never to ignore a single detail. We should have brought him in here the day he said he didn’t have an appetite, the day he said he felt fatigued after his workout. Looking back I can see all the signs that we tried to explain away. There are so many times in life when we tend to overlook the signs that are nagging us just a little. And then they turn into big issues. So when you are tempted to think it happened “all of a sudden,” if you consider it, you know it really didn’t happen all of a sudden. You just weren’t mindful of what was going on in front of you. That was definitely the case for us.

Lesson two: It takes time. Time to get this sick. Time to recover. Time to start feeling like yourself. I haven’t felt like myself since this happened. Neither has my husband. He has since learned that LVADs expose people who have issues with their blood vessels (not all well-formed, which they think is why his blood vessel burst). These issues are present in lots of people, but only the continuous blood circulation of an LVAD makes it known.

Both me and my husband will need time to get back the confidence we both felt before this incident took place. But we’ll get back there. And he’ll make it to a new heart because he is a strong, good man.

He is still walking around. He isn’t dead yet. Nor should he be.



2 responses to “Getting hit by a bus doesn’t mean it’s your time”

  1. Carla says:

    I don’t check your site often, and don’t know what prompted me to look at it today. I will be keeping your family in my prayers.

    • admin says:

      Thank you for you kind words. For all who have asked, my husband is still hospitalized but we hope he’ll be home by midweek. I won’t be blogging this week — spent a long day cooking, spending time with my dad and my stepson, and then at the hospital with my husband.

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