There was a story in our experience, but the words weren't coming. After reading a diary published by exmearden last year, the lightbulb went off. "I can do that." She helped me find my voice, for which I will forever be grateful. From there the words just flowed.
There was a reason it had to be held back until now, which will be explained at the end. A warning, however, it is long, and it is personal, for those who don't like personal.
I was out with the dogs, chatting with a friend and neighbor, and missed the calls. There were 7, all from him. Something’s wrong. That was excessive, even for him.
I called. He was back a day early from a business trip, left the airport, stopped at a nearby hotel feeling sick – so sure it was a panic attack (he hated flying). He’d wait it out.
After describing how he felt, I said (while trying to stay calm): “you’re having a heart attack,” asking him to call the front desk for an ambulance, ASAP. He resisted, of course.
He had a mild heart attack over 3 years earlier, and had changed his life; was doing the healthy routine, exercising, eating – the perfect patient said the Dr. a month earlier. She even used his case for lectures.
He argued a bit; I asked if he wanted to die in a hotel room at the airport; he said he wanted to get in the car and come home (it was rush hour – he was in a town SW of the city; we live in a town NE of the city). I said: “you won’t make it; you’ll die in your car.”
Then I told him I would call right back, to either call 911 or the front desk, and let him go (that was hard to do – I was running on instinct). I called 911, asking how to get in touch with the emergency services down there. Somehow I was able to dial with my whole body trembling. I gave them the information, said this might be a duplicate call, and called him back.
Now he was experiencing chest pain on top of the other symptoms (difficulty breathing, profuse sweating), but he had called the front desk. I asked him to take an aspirin – to chew it, unlock the room door, lie down, and try to cough. He put me on speakerphone and did as I asked.
Within minutes help was there. I listened to them as they prepped him for transport. An EMT came on the line, giving me directions to a hospital in the city.
As we were heading in he called our oldest from the ambulance to tell us he was in fact having a heart attack. He had a love affair with the telecommunications industry – his industry. My son told him we’d see him at the hospital.
He was in the cath lab when we arrived. They had unblocked the artery at the stent (the same artery involved in the previous attack) and were going to put him in a room “on the floor” for observation overnight.
As they wheeled him out of the lab, he arrested; the stent already blocked. They tried again, this time with two stents and a tube. No go. In went a balloon pump to keep his heart pumping, and I gave permission for emergency bypass surgery. The artery, turns out, was diseased beyond repair. The doctor said it looked like a string bean, with the plaque buildup representing the seeds.
After some discussion, the boys and I decided to go home, 30 miles away. The surgery would take 4-5 hours. If we lost him we wanted to be together. My oldest had a college class the next morning he could not miss, so we went down to the hotel by the airport to pick up his car, then drove home.
I slept with the phone on my pillow. They called just before 5 a.m. He made it, and was in intensive care. I could see him at 10:30 a.m. He was critical, but alive. He walked 8-12 miles almost every day, which the surgeon said probably saved his life.
The surgeon kept us up to date; agreed to meet when we asked. Told us he would be able to walk again – though maybe not 8-12 miles a day at first, may or may not be able to play tennis, would need rehab to grow new veins, probably out patient was his guess. He would suffer bouts of congestive heart failure, would be walking around with heart damage like a certain percentage of the population. He would need to avoid salt and stress. Ok. We can do this.
Two days later they removed the balloon pump. His heart was stronger. Before the surgery his ejection fraction was 5-10% - not consistent with life. It was now 20-25%. Normal is 60-65%. Not great, but improving.
The next day they tried to remove him from the ventilator. It didn’t work. I don’t know the criteria involved, but trusted their expertise. The next day they tried again, and again they failed.
The following day – 5 days after surgery – they cut back on sedation to try again to remove him that night or the next day. He was awake, aware, could answer my questions by nodding his head. (And he looked at me with such trusting eyes I hoped not to let him down.) We were getting over the hump. I was so excited I went home to get my oldest son.
It wasn’t a good visit, this time. The ventilator tube was causing incredible discomfort. They kept mildly sedating him to alleviate his agitation. I asked why not a tracheotomy. Something about invasive, infection, waiting 14 days. We came home.
Two hours later the surgeon called. There had been an “unfortunate” incident. On top of everything else, he had contracted MRSA in his lungs (they thought from insertion of the vent tube prior to surgery), so he was dealing with pneumonia, but responding to treatment. The unfortunate incident was that phlegm got caught in his tube, blocking off his air. (Tube down throat, plus pneumonia, plus making him cough when they clear out the tube – DUH! This isn’t rocket science folks.).
By the time they figured out what was wrong, he’d gone 7 minutes without oxygen. Seven Minutes! The doctor said had the anesthesiologist figured it out sooner, she could have bagged him. What? But there was good news; his ejection fraction was now 25-30% based on a test from the day before, so until this incident, he would have been calling with good news. Like this was really a good thing? Seriously?
I knew he was gone. Seven minutes without oxygen? I went in the next morning and never realized I could feel him until I couldn’t; and I didn’t, heading down the short hall to his room. I actually stopped before reaching it, because I could feel the difference. The nurse was acting weird, and since she was on the day before I wondered if she witnessed the “unfortunate” incident. I didn’t want to talk to anyone but him. I kept putting cool paper towels on his forehead, telling him I love him, and asking him to please come back. The nurse ran after me when I left, but had nothing to say, though she acted like she wanted to say something. It was very odd. I didn't want to deal with her. She finally asked if I was going to be ok. No. My husband is dead. What a stupid question. I didn't answer - just left.
I got home and called my oldest dearest friend and told her he was gone, that I couldn’t feel him anymore, and that all that remained was his body, operating by machine. It was like living inside a horror movie. I called my Mom and brother and told them the same thing. I got my boys together and told them. My oldest wasn’t buying it. He went down the next night, and saw exactly what I saw. His Dad was gone. That dear friend was there with her daughter, and they were both crying when he walked in. It was that obvious.
Of course then his organs started to shut down. Surprise. His operating system was destroyed.
First to go - his kidneys. They tried dialysis, to no avail. They didn’t want to do a brain scan until they got his creatinine level down, since that would interfere with the results. Then his digestive tract started to shut down. His breathing became reflexive, though I don’t remember the medical term. He was unresponsive except for slight movement in one eye.
I don’t know when they brought in the neurologist, I never met him, but 5 days later it was determined that he had a 1% chance of surviving and would be in a total vegetative state. They were just confirming what I already knew. Not so sure why it took five days, frankly.
(The second morning after the “unfortunate” incident, when the surgeon called for permission to do dialysis, I told him I understood he had to go about this scientifically, but that he would eventually come to the same conclusion I did, the day before. He was no longer with us.)
His family came in from out of town, thank goodness. Out of 7 adults, 4 are doctors. We met with the surgeon, where we were told about the 1% chance of survival. The doctor said they were also probably a bit myopic about keeping him on the ventilator instead of doing a tracheotomy. What! I didn’t ask, because there was no point, but could that have saved his life? Maybe I don’t want to know. I just looked at him after this news and said “I told you he was gone.” And he nodded and said “I know.”
We asked for time to discuss – I just needed to get away from the smells and the sounds to think clearly. I was ready to explode. They did this to him, then kept him on life support for 5 days. In intensive care. Why!! Because he had insurance? I can’t help but wonder. If I knew he was gone, why didn' they?
We went to a coffee shop on the grounds, in a separate building. I told my boys I wanted to defer to their uncle, the oldest of the doctors. They agreed. His suggestion was remove him from all support. We had a few choices. Another was to just keep him going in that state. That wasn’t going to happen. He didn’t have a living will but he was beyond the need for one. After nearly 32 years together I was well aware of his wishes. We all were.
He died within minutes. My youngest and I did not want to watch him struggle through those last breaths. The rest of the family stood at his bedside. Then my oldest came back to the conference room where we waited, after just minutes, and fell into my arms sobbing, saying “he’s gone.”
He died on a Saturday evening officially. Unofficially it was 5 days earlier. Our 30th anniversary was a month later. We won't be celebrating either so it doesn't matter.
I miss (not in any particular order of significance but just as they pop in):
-The warmth and light in his eyes – he had incredibly kind eyes which is what first attracted me;
-The generosity of his big heart;
-His bear hugs (he was tall, and as gentle as he was large), they made me feel safe;
-Our silly dinner routine whenever he was in town (I can’t bring myself to eat at the table yet);
-The background noise of baseball games during our lifetime – it was his passion (now the sound just hurts);
-The pattern of our life together – rather mundane, but ours just the same;
-Being part of a unit that no longer exists; the companionship – loneliness aches – and is incredibly empty;
-His puttering around in the yard or house – he was always busy and good with his hands;
-His energy and enthusiasm for life – he was a force of nature (type A personality and proud of it);
-His phone calls when he was out of town or when an idea struck him while out and about (sometimes still when the phone rings months later for just a moment I think it’s him – became convinced it would make me go crazy if I couldn’t get a grip…)
-His voice (he never spoke to me again after those calls from the hotel, though I did save a phone message. I play it sometimes, the sound of his voice touching a chord deep inside in a familiar way);
-The way he loved our kids, with everything he had, and then some;
-How much he loved the Fall, which is just barely starting to show its brilliance;
-Him (we met when I was 22, and I never looked back).
We had a memorial service – his wish. I, personally, find them distasteful. Luckily we both found wakes (viewings) distasteful. He was cremated before the service even took place. Walking out of the funeral home with my sons after making those arrangements, I wondered to myself if this is what it means to finally be an adult.
After finding out he was already at the funeral home, my oldest said, as we were leaving, at least he’s finally home, or at least on the home side of town. He left 1 day shy of 2 weeks earlier, for his trip. Two weeks is an eternity when you’re living a nightmare.
The funeral director made my skin crawl. When we asked if he was here yet, he sparked up, saying “oh yes.” Then he rubbed his hands together and asked if we wanted to see him. I declined, saying we saw enough last night.
The theme for the day of the service was “this sucks.” I told my kids it effectively shuts down conversations you don’t care to have. I heard my youngest say it every time I saw him. Some people, in an attempt to comfort, can actually do the opposite. After this experience, I’ll never again tell grieving loved ones that s/he is in a better place. Hearing or reading that hurt in ways I never knew possible. This was his place.
There’s more I’d like to share.
After his first heart attack, the doctor said he had a genetic predisposition to coronary artery disease. There was a blood test that gave them that information. He suggested our sons have it done.
He walked 8-12 miles a day. He ate lean meats and steamed vegetables. He saw his cardiologist every year. She took blood and based his medication on those results. The only thing that changed was she took him off Plavix after a year (then told me in hindsight she probably should not have done that. I don’t know enough to know if that would have made a difference). He took his medication every day. The blood tests didn’t pick up the fact, as the surgeon told us, that he was having small heart attacks for years, based on the clusters of veins that had grown all over the outside of his heart to help increase the hampered blood flow. Maybe an ekg, echo or stress test would have indicated what was going on? Maybe not. I’m not a doctor.
Statistics show that within 5 years of having the first heart attack, there’s a good chance you’ll have another, and the second one has an increased chance of being fatal. These statistics are based on the patient reverting back to unhealthy habits. That wasn’t the case here. Family history had a big say, perhaps. But I can’t say that with certainty. Family history had nothing to do with him suffocating to death, on a ventilator, while his hands were tied to the bed.
I tried to keep the narrative factual, while keeping emotions out. They would have just gotten in the way of the story I wanted to tell. However, we lived and breathed test results for a week and a half, along with the sights, sounds, and smells of hospital life. They seeped into every waking moment, and into our sleep. It got to the point where our hearts jumped every time the phone rang, no matter who was calling, no matter where we were. We called every night before bed and every morning as soon as we woke up, and the fear set in before each call, those last 5 days. One night, while calling before I went to bed, a nurse suggested, while saying she couldn’t really suggest, that we should be there. It was bad – we knew that. After the unfortunate incident, we were just waiting for the call that would tell us his body gave out – he was already gone. He was on total life support. It was just confirmed to me when he died immediately after that support was removed.
It was a nightmare, compounded, in the end, by a nightmare that seems to have no end. I still have a hard time sleeping, months later, thinking about him suffocating as his hands were tied to the bed, so he couldn’t pull out the vent tube. I’m not sure if that will ever fade away. It has been more than a year, and it still hasn’t faded.
We all gathered around him one last time before we went to the coffee shop to make the final decision. (A shout out to Starbucks here for giving my family refuge.) As long as I live I will never forget my youngest son’s reaction. He keeps his emotions buried deeply. He’s the type you have to pry everything out of, one little piece at a time, to get an entire picture; the opposite of my older son who wears his heart on his sleeve. Anyway, he wanted to be the last to be with his Dad, alone. He wasn’t quite to the age where he saw his Dad as a person, yet, as my niece so wonderfully put it. When he was done he came out and leaned over onto my shoulder and started crying, right there in the hallway in front of hospital staff and family. I haven’t seen him cry since he was 6 years old. He’s 19. That and my oldest falling into my arms crying after watching his Dad die are moments that will always be with me. There were a lot of tears that day. I don’t know where I found the strength to hold up under such an assault. As a mother, their pain took my breath away. As someone going through this with them, I wasn't sure where my breaking point was, and what would happen after I crossed that threshhold. It's amazing how deep our strength reserves lie.
Upon the urging of friends, family, the lawyer handling the estate, and my family doctor, I sought the advice of a medical malpractice attorney. Six months into our back and forth (he liked to ponder out loud on the phone), he passed away suddenly and unexpectedly, too. An associate took over. We had the records reviewed by a nurse, and just a month or so ago he called to tell me there wasn't a case. The hospital did everything "humanly possible" to save him. Of course I had to ask even though they let him go seven minutes without oxygen. He said unfortunately yes. Then he said something that shouldn't have shocked me coming from someone who deals with cold hard facts, but he said he didn't know why the original partner even agreed to take it on. There was nothing there. I was insulted, but let it go by. What's the point?
So I didn't want to put this out on the internet forever if there was a chance we could proceed with a malpractice suit. That chance is now gone. Some friends and family want me to get a second opinion. We're not even sure that's an option, first of all. Secondly, the boys and I find some small comfort in not having to relive this nightmare for years to come. You seek comfort wherever you can find it, ultimately.