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Friday, December 4, 2015

How Mary Survived Multiple Cardiac Arrests, Part 1

by Paul and Mary Pakusch
November 24, 2012

Paul: As you can see, Mary looks quite healthy today. You would never guess that there was a time when she was lying on the floor, blue as can be, eyes in a fixated stare, no heartbeat for at least eight minutes, beyond “unconscious” to the point where she was basically dead. When you have a Cardiac Arrest, your chance of survival drops 10% for every minute that passes.

Sometimes I feel the need to give this graphic description because looking at her today, it's hard to imagine what she really went through. Statistically, she shouldn’t be here. Or at best, living with permanent brain damage. It was a cardiologist who told me this about 6 hours after Mary collapsed on July 15, 2006. He told me to be prepared to make a decision about pulling the plug.

They were basically telling me it was hopeless. Maybe she would survive with brain damage. I pictured pushing her around in a wheelchair for the rest of our lives together. The chance of her surviving altogether was around 10% and the chance of her ever living a normal life again was 5%. As you can see, she beat both of those odds. But back then, how could we face going forward with odds like that?

Mary doesn't remember anything about the morning of July 15, 2006. To her, it's a story that's been told to her by other people and me. She doesn't remember most of the week prior to that and she doesn't remember most of the week after that. But that morning, we were standing in our kitchen, talking. She suddenly turned towards the sink, braced her hands on the edge of the counter, and leaned into the sink. It looked really weird, so I said to her, “Mary, what are you doing?” Then she fell backwards, hit her head on the refrigerator, and landed face up on the floor. This all happened over a period of a few seconds.

I didn't know it at the time, but she had just suffered a Sudden Cardiac Arrest. That's different from a heart attack. With a heart attack, blood flow to the heart is stopped and usually causes damage. With a Sudden Cardiac Arrest, the heart simply stops. We are both passionate about the subject and we want people to understand what a Sudden Cardiac Arrest is. There is NO warning. Many people mistakenly believe a cardiac arrest is a heart attack, and that maybe you will feel chest pains or get other heart attack symptoms to warn you to get help. Not gonna happen. It’s NOT a heart attack. With no warning, a Sudden Cardiac Arrest will happen as quickly as it takes to get to the end of this sentence.

When blood flow to the brain is cut off, you have about 10 seconds of consciousness. And that's what had just happened. Mary’s heart had stopped. She was very dizzy and was starting to pass out. She was trying to steady herself by grasping the edge of the counter. Then she completely lost consciousness and collapsed.

Of course, I had no way of knowing all this. All I knew was that something horrible had just happened to her and she needed help immediately. I can still hear the sound of my quivering voice calling out her name in shock and disbelief. As luck would have it, she had fallen in front of the telephone. I immediately dialed 911. We have since received a copy of that 911 call; the first thing you hear on the tape is me screaming her name as I waited for someone to answer the call. The 911 communicator spoke to me in a firm voice, got the necessary information, and told me help was on the way. While waiting, she gave me a job to do: Save Mary’s life.

I had never before had any CPR instruction but she gave it to me on the spot. For anyone who has ever resisted the idea of learning CPR, let me tell you this: You have NO IDEA what a helpless feeling it is to see your loved one lying there and not breathing. Your choice is simple. Learn CPR and maybe save a life, or don’t learn CPR and just leave everything to fate. I was scared as hell to do CPR, but with my wife lying there practically dead, following the 911 Communicator’s instructions was my only option. I knew the nearest firehouse was over 2 miles away and that precious minutes would be lost before they arrived. Remember, the chance of survival goes down 10% for every minute that passes.

Based on the length of the recorded 911 phone call, we can estimate that her heart had been stopped for at least 8 minutes. Once the first firemen arrived, it still was whatever time it took for them to get the external defibrillator in place and administer the first shock. Then the second shock, which finally got her heart started again. But she never regained consciousness until about 42 hours later.

Mary was brought to the hospital non-responsive. Since blood flow to her brain had been cut off, now the question was how much brain damage was there? She went through a battery of tests and two CAT-scans and then was put on a cooling therapy. Maybe you’ve heard of people who have been submerged in icy water and then survived. This is the same concept. While in an induced coma, her body temperature was brought down to around 92 degrees and kept there for about 24 hours. The idea is to decrease blood flow to the extremities so that more blood will go to the brain. This can’t be done fast. Once the cooling therapy is over, the body is slowly warmed over an 8-hour period back to a normal temperature. Then the coma-inducing drugs are stopped and we pray and hope that she will wake up. If she didn’t awake within 72 hours, the prospects would be grim.

This was a Sunday evening. Her body temperature was to be back to normal by midnight and then they would stop the drugs that kept her in an induced coma. I went home for the night with the intent of returning the next morning with a boombox, CD's of Mary's favorite music, and some pictures to put on the wall. These were to stimulate her brain and hopefully help her recover from any brain damage.

At midnight they stopped the drugs that kept her in an induced coma. Imagine my thrill when I received a call at 1:15 in the morning to tell me she was awake--only an hour and a quarter later! The nurse told me she was responding to yes and no questions. She asked me if I wanted to come in. Hell, yes! Our youngest daughter came with me, and my two sisters, a nephew and my aunt all met me at the hospital. I'll never forget the big smile on the nurse when she greeted us in the ICU and led us into Mary's room. Mary was lying there, looking dazed but awake. She still had an oxygen tube, so she couldn't talk, but she responded to my questions by nodding or shaking her head. It had to be one of the most emotional moments of my life, to sit down next to her and be able to talk to her when we pretty much thought she was gone forever.

Her memory was very screwed up at that point. Anything you told her would be forgotten within a minute. It was like this for the next several days. If you've ever seen the movie "50 First Dates," it was like that. Drew Barrymore's character suffers some kind of amnesia from an accident where she wakes up every morning and doesn't remember what happened in her life after the date of her accident. So, Adam Sandler's character, who is in love with her, finds ways to deal with that.

We had to do the same thing with Mary. We wrote notes and left a journal at her hospital bedside so that anytime she woke up, she would see the notes and know why she was there. Gradually, her memory began to improve.

Her hospital stay lasted 10 days and she received an implanted defibrillator. She came home to recover from the surgery, and to regain her strength. Brain-testing was done on an out-patient basis. Loss of oxygen to the brain is called anoxia. The result of that test was this: We were told that her recovery from anoxia was the best they had ever seen!

Mary still had some minor short-term memory issues, but she came up with methods to help herself. And that’s how she lives her life today. She relies on writing things down. Her desk at work is covered with Post-it notes!

Mary had a second Sudden Cardiac Arrest on December 22, 2007. Again, it was a full-blown Sudden Cardiac Arrest, but since the circumstances around it were different, she does remember this one! Here's the story of both Sudden Cardiac Arrests from her point of view:

Mary: I think the first thing I remember for real is waking up in the morning and realizing I was in the hospital. I don’t really remember if anyone was there with me, but I do remember a notebook sitting next to me that I had already written in about my experiences so far. My handwriting was very child-like, and I had only written a sentence or two on each page. But somehow I knew I was in the hospital. I don’t remember being scared, or even confused. Maybe I don’t remember my feelings because my memory was still very foggy for a few days after that.

I remember Thursday morning, having to say good-bye to my sister and her husband as they were getting ready to leave. I think they said they were going to Buffalo and would be back in a few days. All of that is still confusing to me.

My next real memory is from Saturday, one full week after my SCA. That was the evening my kids, my nephew, and I think one of my kids’ friends, who was like a member of our family, came to visit. I remember having a really good time. We were teaching Keith how to spell “spaghetti” (spag – hetti), we were taking quizzes from a woman’s magazine, and just generally laughing a lot.

I don’t really remember Sunday, but nothing particularly interesting happened that day. Then Monday, they took me into surgery for the 2nd time to place the ICD. They had tried on Friday, but there was a problem with the wire not being long enough or something like that. The weird thing is that when they took me into the operating room, I suddenly had memories of what it had been like on Friday. I had memories of “clowns” and music. But it turned out the doctors were wearing bright colored clothes and head coverings. The general atmosphere was almost festive. I remember not feeling scared. It was almost “fun.”

I got to go home on Tuesday, 11 days after the SCA. I had been in the ICU the entire time. This is the story as I remember it being told to me:

On Saturday, July 15, 2006, I woke up and was checking on the weather. Apparently it was raining that morning. It was my oldest daughter’s wedding shower that day, and rain had not been in the forecast. My husband, Paul, says we were in the kitchen discussing who would take the dog out in the rain, when I suddenly leaned forward over the sink. His first reaction was that I was fooling around for some reason. Then I fell backward, hitting my head, and then landing halfway into the living room right next to the phone. He immediately knew something was horribly wrong, so he dialed 911, screaming my name until the dispatcher answered. We have listened to the 911 tape, and you can hear her getting very firm with Paul to calm him down. Then she had him check for a pulse and breathing and then begin CPR. It took about 8 minutes for the first responders to get there. It was firemen from the closest fire department. Meanwhile I was turning blue, and my hands were starting to curl up from lack of oxygen. The firemen used an external defibrillator and it took two shocks to get my heart started again. Paul woke up our two daughters who were living at home, ages 15 and 17. A second group of firefighters arrived, and then paramedics. They got me into the ambulance and Paul was told they would do everything they could. He knew it was very grim.

At the hospital, again, Paul was told I was not likely to survive. If I did, I would be in a vegetative state. But they put me into an induced coma and used a fairly new strategy for cardiac arrest victims. A “cooling therapy” where they lowered my body temperature to the point the blood would go to my brain to give me as much oxygen as possible. This was Saturday morning. They kept me in the coma and cooled off until Sunday evening. Paul left the hospital late that evening, shortly after they started to take me off the meds and warm me up. He was told the next 72 hours would be crucial. If I didn’t wake up by then, it was very bad. But then 1 ½ hours later, I woke up! Paul got a phone call to come back to the hospital.

I don’t remember any of this, except for one thing: I remember Paul reaching his hand out to me and asking if it was OK if he held my hand. I said yes. I honestly thought this must have been a dream until he confirmed it later. Throughout the next few days my short term memory was pretty much non-existent. I kept asking the same questions over and over minute by minute. I don’t remember any of that at all. Paul says it got a little better each day, though. My family was told they should keep a journal that is written in by everyone that comes to visit me. That proved to be very helpful later. Even now, I like to read it on occasion. During those first days, I apparently was convinced I was in the hospital because I had cancer, or had some kind of surgery. I could not grasp at all what happened to me. During that time, I also had a lot of dreams that I was going home at night and coming back during the day. I guess I thought sometimes that I was there to visit someone else. I had a huge argument with one of the nurses over this. It’s funny to me, because that is one of my real memories. I remember giving her the finger as she walked out of the room. That is not typical of me, so I figured that was one of my dreams. But then my family confirmed that part really happened!

As I mentioned before, the cardiac arrest happened on a Saturday, the day of my daughter’s wedding shower. My family was in town for the shower, and then my other daughter’s graduation party the next day. Obviously Kristi’s shower was postponed, but Sunday Paul told Tracy to decide whether or not to hold the graduation party. I was in the coma and there was nothing anyone could do. Tracy chose to have the party. I am glad she did. When Kristi got engaged, I told Tracy I didn’t want her wedding plans to overshadow Tracy’s senior year and graduation. To this day, I am sad I wasn’t there, but still glad she had her party. The pictures that were taken that day reflect a seriousness underlying the celebration, but I still think Tracy enjoyed her day.

When it was time to come home from the hospital, I was happy, but also scared. I was just beginning to have a better understanding of what happened to me. I left the hospital with specific directions about the care of the surgical incision and my arm, but not really what to do about the cardiac arrest. Since I am a teacher, I was on summer break, so I didn’t need to worry about going back to work for a little over a month.

During that month, I was afraid to exert myself at all. The doctors were not able to tell me why I had the SCA, so I spent my time curled up on my favorite chair sleeping a lot. When I went for my check up with the cardiologist later in August, she approved me to go back to work. I could hardly shower by myself, let alone get a classroom ready and teach full–time. I left the doctor’s office crying all the way home. I had been seeing a therapist for anxiety, so I made an appointment with her. She agreed I was not ready to go back to work and that when I was ready to go back it should only be part time. She worked with my primary doctor to write me out from work. I went back part time at the end of October, and then full-time in January. Even then, I was tired all the time. By October I had my cardiologist on board as far as me not going back to work full-time.

I was very lucky when I went to work. The staff in my school was extremely helpful and welcoming. Everyone was making sure I didn’t have too much stress, and any extra work that came along, someone else would take care of it for me. Although more than 6 years have passed, some of the teachers I work with are still sensitive about making sure I am not too stressed.

So, once I had permission to stay home and the knowledge that I needed to build up my stamina, Paul and I started walking every day. First I could only make it to the end of our apartment complex driveway and then down the street to the corner. Finally, the whole 15 minute walk to the beach. It was a special time for us. We hadn’t had that kind of time together since we were first married. I think it was good for both of us. But Paul was still extremely jumpy. On one of our walks to the beach, we sadly witnessed a seagull getting hit by a car. Paul’s eyes got very teary and he talked about how it reminded him of how I looked when I had my SCA. It was almost humorous to me that I was being compared to a bird, but it also hit home for me how badly Paul was affected by what happened to me. I honestly believe he suffered more than me in so many ways.

Once I was back to work full-time and driving again after my 6 months off, things felt pretty normal. Paul and I still talked about the SCA every single day. Our children were upset with us for bringing it up all the time. They were tired of hearing about it. We never got tired of talking about it, even now after 6 years. We are just careful not to drive our family crazy with it.

Then, on Saturday, December 22, 2007 it happened again. I had invited the whole family and my best friend over for a Christmas dinner. It went very well, and everyone had a good time. When everyone was gone, late afternoon, I sat in my chair and rested. My daughter’s boyfriend was still there, and he needed a ride home that evening. I gladly drove him home. When Melissa and I got home, I decided to take the dog outside and then get ready for bed. It was after 11:00 and I was exhausted. Melissa went upstairs where her older sister was. I took the dog outside. When we got back in, I headed for the kitchen. I looked at the clock because I was going to leave a note for Paul with the time I had let the dog out. Paul would be getting home from work around 11:50. Suddenly I felt dizzier than I ever remember feeling. I reached out to the counter to catch myself, and I don’t even remember getting there in time. The next thing I knew, I was lying on the floor and had no idea at all where I was. My kitchen looked VERY different from that perspective! I had been dreaming when I passed out that I was drifting down like a feather. Then, when I first opened my eyes things looked crazy. I don’t remember the details now, but it took a minute for the real objects to come into focus. Then a little more time to realize it was my kitchen.

At that point I felt absolutely fine. I got up carefully because I was worried I would still be dizzy. I wasn’t. I walked upstairs, called out to my two daughters so I could lie down right away. Kristi came in to check on me. I told her what happened. I called the doctor. He told me I may have had a cardiac arrest, but since I felt fine, I could wait until the next morning to transmit my ICD info over a phone line. It wouldn’t be seen until Monday anyway, since the next day was a Sunday. On Monday we called the doctor’s office to see if they got the transmission. That’s when we found out it was closed because it was Christmas Eve. No one was going to see it until Wednesday at the earliest. The doctor on call suggested we go to the emergency room. We did. My cardiologist told me it was a full cardiac arrest. It took 8 seconds from the time my heart stopped to the time my ICD shocked me and got my heart going again. Since I had checked the time just before it happened, I was surprised it was about 3 minutes from the time I got dizzy to the time I got upstairs to my bed.

Anyway, I wanted to mention that when I found out it was definitely a 2nd SCA, I started crying. My doctor was very kind. Soon after, I learned that she had already gone all the way to Pennsylvania with her family (about 5 hours away) when she got the call about my SCA. She left the kids there and came back to see me. I will never forget her for that. It meant the world to me.

My betablocker was increased. I was told to take 6 weeks off from work, and my doctor told me not to drive, indefinitely. She still doesn’t know the cause of my SCA’s and believes driving would be unsafe. I agree, given I had been driving my daughter and her boyfriend just 20 minutes before this happened. Since the whole event only took 8 seconds, there would be no time to react and pull over if I was driving. It was after this cardiac arrest that the doctor started to believe the cause could be stress related. There is a possible genetic cause that is being studied in Albany, NY. It would involve a simple blood test, but my insurance company would have to be convinced to cover it. It cost over $4000. Now I was truly worried; this was not a “fluke” and there is a chance it is genetic, which puts my daughters at risk. They are all terrified about that. All three girls have been checked and followed by the cardiologist. She hasn’t found any problems, but I never expected her to. There is still nothing obviously wrong with me.

For the next year or so, my doctors and I battled the insurance company. Paul and I couldn’t afford to pay for the blood test outright, so we needed the insurance company to help. It literally took a year of phone calls and letters (mostly from the doctor’s office) before the insurance company agreed to cover the cost. I made an appointment with the doctor, had the blood drawn, and then waited. I had been told it could take up to 6 weeks, but within two weeks I got a call. The doctor explained to me the results were “inconclusive.” That was the last thing I expected! If the results had been definitely negative, we wouldn’t have an answer, but at least we would have discounted another possibility. If it had been positive, the girls would have been tested and if any of them showed the genetic predisposition, they would get an implanted ICD. We were all rooting for positive results, actually. But, it was “inconclusive.” The reason for that is because not all the genes believed to be involved with this problem have been isolated. The ones that were checked on me were not positive, but there are other genes that can’t be tested yet. It will probably take years of more research to be able to isolate those genes to get definitive results. I was devastated. Recently a new genetic test has been developed. The doctor wanted to find out if this was a possible cause. I am still waiting on results for this.

My family is pretty used to the effects of my SCA. I have some very minor short term memory issues. These are not very obvious most of the time, but I am very aware of them. My family had to get used to driving me places. For four years I had to rely on other people. Two summers ago I finally got permission to drive again. It is an amazing feeling of freedom we all take for granted! I am tired all the time, from my medication. Paul knows that when we go out in the evening, it isn’t going to be a long night like it used to be. He is wonderfully patient about that.

I think about the SCA daily. It may not help that I read the daily updates on the Inspire site. But I don’t think that’s the only reason. I think it’s just such a part of my life that I can’t not think of it. I literally walk through life wondering when it’s going to happen again. If I am climbing up on the counter to hang a poster at school, I wonder if I’m going to have an SCA and fall. If I’m walking through a crowded mall by myself (after being dropped off there!), I wonder if I’m going to go down and freak out a bunch of strangers. When I’m standing in front of my class, I wonder what the kids would do if I suddenly collapsed in front of them. One time Paul and I were leaving a funeral home after a wake. I suddenly became very dizzy. I grabbed Paul, thinking I was going down, but then it passed. I cried all the way home and it took me an hour to stop shaking. I had to find a way to transmit my ICD data, because we had gotten rid of our landline (cell phones have taken over our lives!). I had to wait until the next day and have a friend bring me to her house only to find out it had nothing to do with my heart at all. The doctor said I may have gotten dehydrated. I know my heart meds do cause my blood pressure to drop too low once in awhile. Dehydration can contribute to that. I carry a water bottle with me wherever I go now. I panic a lot when I get the least bit dizzy.

Paul keeps saying he is glad I had the 2nd SCA, because it proved to him that the ICD really works. I know he means this, but I also know he worries all the time. One night I needed his help with something in the bedroom after I went to bed. Since he is hard of hearing and he also doesn’t always hear his cell phone, I texted my daughter to ask her to get him right away. He and my daughter immediately jumped to the conclusion that I had another SCA. They came running into the room very panicked. I felt terrible for scaring them. It never occurred to me they would think that way. Luckily we were able to laugh about the whole thing once everyone calmed down.

Paul: As we indicated earlier, what happened on July 15, 2006 is a story that Mary heard. She doesn't remember anything about it, so she wanted to hear a tape of the 911 call. The 911 call was about 7 and a half minutes long, so it's a record of what was happening during those precious minutes when we were trying to save her life. When we listened to the tape for the first time, it was pretty emotional for both of us. I was reliving the whole experience, and Mary was hearing for the first time an audio recording that made the whole thing more than just a story to her. I told her I felt like I was listening to a tape of her dying. She said, "No, that's a tape of you saving my life!" That's when I realized for the first time that it helps to have a positive attitude about things you can't control.

Click here to read part 2, written in September, 2019

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