the whole shebang


I’ve been wanting to write a long, comprehensive post about my dad but haven’t had the time, energy, emotional fortitude, or enough booze.

On January 26, 2000–the day after his 50th birthday–my father had a massive myocardial infarction. A heart attack. My mom told me just yesterday that they call the type he had a “widow-maker” and the situation would have had a very different ending if the ambulance hadn’t gotten there when it did.

Eleven years…

(Eleven years means my mom and I have become well-versed in cardio medical terminology. We have to be. There are doctors who assume we don’t know what we’re talking about so a demonstration to them must be made. Other doctors [the ones who have stuck around] know we’re aware and educated about the situation and talk to us as equals instead of country bumpkins.)

(To be very clear, some of my best friends are doctors. I have nothing against doctors. I just don’t like assholes.)

…one triple-bypass, numerous stents, a failed candidacy for transplant, five more heart attacks, and several hundreds of dollars worth of medications per month later, here we are.

And where are we exactly? End-stage congestive heart failure.

About three weeks ago (I think, since time holds little meaning at this point), my dad began having trouble breathing and having chest pain. It sounded like a heart attack. Off to the hospital he and my mom go. Not a heart attack but pneumonia. See, congestive heart failure (CHF) causes your body to retain fluid, and it will often collect in the lungs. It also can cause swelling in places like the ankles and the feet. But my dad didn’t have any of that so the outward signs of CHF weren’t there. But they were there in his lungs. So he began a dose of antibiotics as well as a diuretic to eliminate the extra fluid. There were a few ER trips that week as they worked to adjust meds, determine oxygen at home was needed, and establish a plan. I flew out to Tucson and stayed with my mom. We spent all of our days in the hospital with my dad, who took great pains to assure me that he would be fine. I stayed for a long weekend and he was discharged the day after I left.

The next ten days brought a marked change in my dad. He ate very little, he slept a lot. He grew weaker. Then, over the phone, the call came from cardiologist’s office to double his dose of diuretic. Within 24 hours, he was back in the hospital. He hasn’t left.

There have been two major mistakes that we can see having contributed to his current decline. One was a pharmacy mix-up with his thyroid medication. (Oh, right. He has hypothyroidism as well.) The second was the doubling of the diuretic. It severely dehydrated him (he also had a limit on how much fluid he could drink) and caused his blood pressure to plummet. He expressed the thought that he was dying (he apologized at the time if it seemed melodramatic, and he is NEVER melodramatic), my mom called 911, and I flew back on the first flight the next morning.

My mom & I watched him crash at the hospital, and a rapid response team was called in. You know on ER or Grey’s Anatomy when a bazillion people come and crowd around a patient’s bed and yell questions at him and orders at each other? Yeah, like that. We watched my dad’s blood pressure steadily decrease and his heart rate follow suit. People kept shouting things about not being able to get a temp. They turned on ALL the lights above his bed and had him flat on his back. My mom and I huddled together in the corner, clutching each other. They stabilized him, he crashed again (though not as significantly) about 45 minutes later, and was summarily transferred to ICU.

Over the next few days they were able to get his blood pressure raised and the fluid balanced. He was moved to a regular room, and everything fell apart again. He wasn’t able to stay awake and he was there was major disorientation and tremors. He was only able to handle liquids, and there were at least two days when we thought we were losing him. I don’t like euphemisms for death but that’s what it honestly felt like. He was slipping away.

Backing up a bit. My dad has a pacemaker/defibrillator implanted in his chest. A little while ago, it began beeping. The battery was low and needed to be replaced. The procedure was scheduled for the end of September but ha ha, he was in the hospital. No problem–it was rescheduled for the end of October. October 28. Today.

Ok, back to last week. It was determined that instead of simply replacing the battery perhaps an entirely new device was needed. So we waited. This was Thursday. On Sunday, we were told maybe he could get the new device on Tuesday. Then we found out that the surgeon was out of town. Ok, call another. No, he’s out of town too. And then there was radio silence from everyone until Wednesday morning when a nurse came in and told us that the transfer to another hospital was in process, as though we were already aware. I told her she had the wrong room. Within half an hour, we were finally told a little of what was going on. The surgeon who was supposed to change the battery, then implant a new device, had been faxed my dad’s most recent EKGs. She nixed the new pacer and said he would need an LVAD–a left ventricular assistive device. Oh, we said. That’s why the transfer. Ok, we said. That’s all we knew. We didn’t even know when the transfer would happen, so in the event of a middle of the night trip, my mom and I spent the night in my dad’s room.

(We ordered a cot. We were told none were available. There was an empty bed in the room but we were told in no uncertain terms that we were NOT to get in it. We gazed longingly at it all night. My mom likened it to holding a large glass of water just out of the reach of a parched man.)

Yesterday afternoon an ambulance drove my dad across town to the hospital at the university (for those of you not from Arizona, you’ve probably seen this hospital on the news; it’s the one Gabby Giffords was taken to when she was shot). And he was back in ICU. The first thing my mom and I noticed was the recliner AND pull out bed. We were working on about 3 hours of sleep, with our longest stretch being 90 minutes, and we’d already been up about 12 hours. While the nurse drew some blood from my dad’s picc line, we asked when we might see Dr. I., the surgeon who had recommended the LVAD (and who was going to implant a new device originally). The nurse asked why we were asking, and we said, “Well, because she’ll put in the LVAD?” “Oh, no. She doesn’t do those.” (We suspected as much but, you know, no one told us otherwise.) “Dr. S. will do the surgery.”

So we waited for Dr. S., who, as it turns out, is MAYBE five years old than me and has way better hair. She was fantastic. She asked my dad to tell her his whole story and she listened thoughtfully the whole time. She explained that his situation–heart disease that starts at a young age–has taken a typical path. Then she explained his options. Continued medical therapy, transplant, or LVAD. She warned that the requirements for both the transplant and the LVAD are very strict (the transplant more than the LVAD). She also said she strove for maintaining QUALITY of life, not quantity. The battery of tests for evaluation would begin first thing in the morning.

And so my mom and I went home, bleary-eyed and dreaming of a pillow and soft surface on which to lie. We slept the sleep of the drugged and severely sleep-deprived. This morning, we felt normal.

(Honestly, we’ve forgotten what real normal feels like.)

That brings us to today. The evaluations have included enough blood drawn to dessicate a small cow, an echocardiogram (that the tech let us watch and explained it all as he went along –the benefit of being in a teaching hospital), and a two and a half hour stay in the catheter lab, where they did an angiogram to investigate flow and blocks, and to insert a Swan line.

And here we are.

When will we know what will happen? We don’t know. We may not know for days or even weeks.

So we wait. And watch. And hope. Mostly hope.

4 thoughts on “the whole shebang

  1. Hope. Keep hoping. Quality of life IS important, but the medical personnel should be doing everything they feel is possible to help your dad. You and your mom are true advocates for your dad's well-being. Thank goodness you are asking questions. Intelligent questions. Miss you and wish you well.

  2. This must have been so hard to write, and you're so brave to share it all. Our stories are uncannily similar, except that my dad's ambulance did arrive a minute too late. And, in a piece of weirdness that seems bigger than mere coincidence, our dads have the same birthday. Mine was just born two years earlier, 1948 instead of 1950. I am so glad the doctor you are working with now is skilled and patient. I know we've never met, but I know you can imagine how much you're in my thoughts right now.

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