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Wednesday, October 2, 2019

How Mary Survived Multiple Cardiac Arrests, Part 2

The original blog was written by Mary and Paul Pakusch in 2012.  Much has happened since then and Mary agreed to write about it. 

Here is the link to Part 1, which covers the original cardiac arrests, a description of what a cardiac arrest is, how it affects Mary, and includes the years 2006-2012.

http://www.sunnysideof50.com/2015/12/how-mary-survived-two-cardiac-arrests.html

Here is her story from 2012 to now.

By Mary Pakusch

September  2019

Although Paul and I have been divorced for a couple of years now, we still get along. Paul recently asked me if I was interested in writing more about my cardiac arrest experiences since he published his original blog about it several years ago. At the time I had written about my initial cardiac arrest and the 2nd one I had 1 1/2 years later. In the following 11 years or so, I’ve gone into v-fib and needed to be shocked approximately 18 more times. It’s hard to keep count. 

Paul actually gave me some notes to help job my memory. The past few years have been traumatic, and sometimes it’s hard to remember all the details. 

After my 2nd SCA, I don’t believe I had another one for quite a few years. I know I wasn’t allowed to drive indefinitely after that one, and I think that lasted about 4 years before I was given permission by my cardiologist to drive again. I remember at least one year of Paul driving me to work and picking me up every day. I spent about 10 hours a day at work because of his schedule and availability. That actually worked out, though, because it decreased greatly the amount of work I had to bring home. I also had a year of a colleague from work picking me up every day. It was so wonderful that she did it, but stressful for me because I felt like such a burden. I don’t remember how I got home those days. I feel like maybe a couple of teachers and maybe Paul shared that job. 

The next time I remember having a cardiac arrest was in May 2014. That year had been a particularly stressful one for me at school.  I was teaching in a 5th grade classroom most of the day, and then I was split between a 3rd grade classroom and working with a kindergarten student the rest of the day. I also belonged to a new committee that was taking me out of the classroom a few times a month. I vividly remember walking down the hall with the 3rd grade teacher I worked with a few months before I had the SCA and telling him, “If I’m going to have another cardiac arrest, it’s going to be this year!” I didn’t realize how true that would be. 

Anyway, that same year the fifth grade teacher I worked with was newly married and his wife got pregnant. In May he was out for a week when the baby was born. It was at this time that school got even more stressful for me. My students had been complaining a lot about bullying going on with some of the other kids and one day I had had enough. I had a class meeting and got very stern about what the consequences would be if it continued. Then I stopped at my principal’s office on my way out for the day and asked her if she would be wiling to stop by and talk to the kids the next day. Driving home I felt very bad heart palpitations. I didn’t think too much of it as I knew it had been a stressful day. That night I had 4 or 5 SCA’s while I was sleeping. My cardiologist said I almost had one while I was driving home, but it self-corrected by itself so I didn’t know my heart had gotten that out of rhythm. 

I remember feeling very dizzy during the night. It never occurred to me that it could have anything to do with my heart. I was trying to lay in positions that wouldn’t make me feel so dizzy. Then, toward daylight I had another episode of dizziness and felt a hard thump in my chest. That was the first time it occurred to me I might have gotten shocked. I woke up Paul and told him what happened. I sat up and at this point I thought it was the only shock I had had. Paul was concerned because I was talking about going to work since I now felt fine. I was in denial and didn’t want to believe it was actually a shock I had experienced. Finally I decided to call in to work and wait until the doctor’s office was open so I could transmit the data from my ICD over the phone line. When I did, they called back and said I had actually had 5 shocks overnight.  I had slept through 3, passed out for 1, and felt that last one. They wanted me to get to the hospital and call an ambulance since I could get shocked again. I can’t remember the details, but I think Paul left work and got home before the ambulance was ready to take me out. At the time I joked the scariest part was being brought down the 5 or so stairs that led to the front door. They kind of tipped me a little on the stretcher and one of the guys got yelled at for it. I think he was new. 

I went to Strong Hospital for some reason. Maybe my doctor was working at the hospital that day. I’m not sure. I was in the ER for quite awhile. Paul came to stay with me. While I was there I felt fine, but I ended up having another shock. I  sat up on the cot to plug in my phone when I felt the dizziness come on. By then I had learned to recognize the feeling. I remember starting to lay down. Something I hadn’t mentioned before is that every time I get shocked I have really crazy dreams or experiences that are hard to explain. I see all kinds of colors and I sometimes feel like I’m spinning, but not in a bad way. Then I feel like I’m falling, somewhat like a feather, not a sudden drop. When I was in the ER I felt like I was falling forever. When I finally landed I opened my eyes and saw many concerned people looking over me. I said out loud, “I’m back…” They kept asking if I was ok. By then I was fine, like I always am after I get shocked. Then I saw Paul sitting in a chair across the hall. They had gotten him out of the way. He looked extremely distressed. I don’t know who was more worried about who at that point. But he came over and saw that I was fine. 

I believe this hospital stay lasted several days. They needed to figure out why I had what they termed a “V-fib storm,” especially after all those years with nothing happening. Through questioning me, we figured out I had started a new medication for anxiety about 5 days before that. Since I had been so stressed at work I had asked my doctor for something to help. I so wish I remembered now what it was called. Little did I know that it had a known side effect of causing heat palpitations and people with heart rhythm problems shouldn’t take it. I was furious with my doctor because she should have known that. While I was in the hospital my doctor wanted to try a different medication for my heart, but it could have bad side effects so they usually keep a person in the hospital for a few days to monitor them when it’s first started. I think one of the days I was there the monitor I was hooked up to went off because I had a run of v-tach, but my heart got back into rhythm on it’s own, so I wasn’t shocked. Then the doctor wanted me to get a treadmill test. I had thought I was going home, but instead I was told they were going to keep me another day to do that test. I was very nervous because the only other time I did one I felt very uncomfortable. Nothing bad had happened, but it was scary to me. While I was waiting to be brought down for the test I was getting more and more anxious. I could feel heart palpitations. Someone finally came with a wheelchair to get me. I told her I was very anxious and felt like something bad could happen. She was supportive, but there was nothing she could do. Then when I got to the room, the technician started putting my leads on. I told him also that I felt like something was going to happen. He said not to worry. If it did, I was in the right spot. We walked over to the treadmill and there was a bed right beside it. I got extremely dizzy and remember saying something “here we go” and trying to sit on the bed before I passed out. The next thing I knew I woke up in the same room surrounded by hospital staff. Later, my cardiologist said, “Well, I guess we got the information  we needed.” I didn’t know what she meant at first, but figured out since that we now knew for sure that anxiety and stress were a huge component to my heart issues. She also felt the medication they were monitoring me for was not a good one. I don’t know if it could have induced those 2 events, or if it just wasn’t working and it was a med that they try to avoid if possible. 

It was a relief when I finally got to leave the hospital, but I was back to not being able to drive. This time it was for 6 months. I think because we knew the medication had caused my v-fib storm, the doctor felt safe letting me drive after 6 months of being incident free. Paul and I had to cancel an Alaskan cruise we had scheduled for August. My anxiety at this point was quite high. I struggled for a couple of months just leaving home to go to the store. My family was very supportive. I think I went back to work the 2nd week after school started. I had some restrictions, but overall I was ready. 

The next time I had a SCA was February 2016. I had decided to leave Paul and it was the day I moved out of the house. I was moving to a 3rd floor apartment in Henrietta, about 20 minutes away. I had gotten a moving company. Because of the circumstance I didn’t feel comfortable asking my daughters to help me move and no one offered, so I was pretty much on my own. Paul had actually offered to help, but that would have been awkward and mean for me to accept. I actually asked him if he could be not home until I was gone. I got my van loaded with the stuff I didn’t want the movers to take. Once they had the truck loaded up they wanted to follow me to the new apartment. We drove all the way there and while they got ready to unload the truck I walked upstairs to open the apartment. I carried a lamp up with me because it was easy and I figured I shouldn’t waste the trip not carrying anything. When I got there I walked in and set down the lamp in a corner. Then I turned around and felt that familiar dizziness. I woke up in the middle of the living room floor with no idea at all of where I was or how I got there. Since it was a brand new empty apartment there were no clues like familiar furniture. Just as I started to feel panicky, I noticed the ceiling light in the dining area. For some reason that was enough to remind me of where I was. By then I heard the movers downstairs. They were working on figuring out how to get the couch upstairs. I crawled over to the wall and leaned against it. When they walked in they asked where I wanted it. I didn’t want to tell them what just happened because I didn’t want them to feel like they shouldn’t take the time to unload my stuff. So I just said I almost passed out and needed some water. One of the guys went down to my van to get my water bottles out for me. They seemed relatively unconcerned, so I let them keep working. In the meantime I called Melissa, who was at work nearby. She immediately left work and came to the apartment. After the movers were done I called the doctor’s answering service since it was a Saturday.  When I told the doctor on call what happened they said as long as I felt ok I should be fine, but if it happened again I should go to the ER. 

Melissa had Spencer came over and they spent a few hours with me. I felt perfectly normal. I had wanted to go to MCH to visit George, so they left and I took a nap. I decided if I felt normal after the nap then I would drive the 4 miles to see him. I did. Around midnight I came back to the apartment. I walked up the stairs and into the apartment. Standing at the dining room table I started to feel that dizziness again. I had just enough time to step away from the table and onto the carpet before I passed out. When I woke up I crawled to my chair and immediately called 911. I think I also sent out a text to the 3 girls and Paul letting them know I was going to Strong. When the ambulance arrived they evaluated me and tried to decide the best way to get me down 3 sets of stairs. They ended up putting me in a special chair and carrying me down. That was one of the scariest experiences of my life! I had no control. They kept telling me to keep my hands in even if I felt like I needed to grab the rail, or the chair could tip. They were very slow and careful, but I was terrified the whole time. 

Paul ended up meeting me at the hospital. I was grateful, but it was also awkward since I literally had just left him that morning. He stayed with me in the ER for a few hours and then decided to leave. Finally a few hours later they put me in a room. My doctor increased my medication and I was back to square one as far as not being able to drive. I was more upset than ever before because now I was living alone and didn’t have people around who could drive me places. My daughters were very supportive and helpful, but I also have to admit to cheating a little. George was only a few miles down the road, so I decided I could drive that distance. I just avoided the expressway and going any distance further than that. Luckily Uber came out around that time. I used it to get to my therapy appointments. 

One of the worst parts about this hospital stay was my general lack of visitors. Paul actually came to see me and stayed awhile. We had a great talk. I don’t think any of the girls came, and when it was time for me to go home no one was available. I felt very lonely. I knew I had upset them by choosing to leave Paul and I didn’t want to push anyone at that point. I ended up posting on FB that I didn’t know yet how I was getting home. Luckily one of my friends at work saw it and offered to get me. She drove me home and then stayed with me for awhile. I think Melissa came over after that and spent some time with me.

I think I was ok for awhile after this incident. I was actually almost a year before my next cardiac arrest. I was working in a 5th grade classroom that year. I had moved up again with my small group of students. I loved the teacher I was working with, but we had one student and his mother that was causing a huge amount of stress for us. I told the teacher and the school counselor that I worried they would be the cause of me having another cardiac arrest. 

Christmas vacation came. After a relaxing week off, I went back to an already busy day on January 3, 2017. I had a CSE meeting for one of my students. I knew it was going to be a battle with the school district to continue services for him as he entered middle school the following school year. I had to plan for a sub to replace me during that meeting. Then, the difficult student I had gave me a hard time about doing some of his work first thing in the morning. So when the class went to art class I was going to make a modified homework assignment for him. I walked the whole class to the opposite end of the building where the art room was, walked all the way back to my classroom, and then grabbed some materials and went up to the office area where the copy machine was in a small room. When I walked in, another teacher from the 5th grade team was using the copier, so I put my things on a table and leaned over to write something down. I felt that familiar dizziness and stepped backward so I wouldn’t hit the table. It was a very small space. 

I woke up facing the ceiling, and again not really knowing where I was. I started to recognize the few things I could see, such as the recycling box near me. Then it came back that I was at school. By then Mike, the other teacher, had jumped over me to yell for the nurse. Her office is across the hall from where I collapsed. She was by my side on her knees. The principal and the special education coordinator for the school district was standing at the door. There were several more people out in the hall. I told the nurse I was fine, but that I had been shocked. I think they had already asked the secretary to call an ambulance, and they had put the school on lock down so no students would come by and see me like that. The nurse wouldn’t let me get up, even to sit. My co-teacher then came into the room where I was. I was so relieved to see her. We had gotten very close in the first few months of school. She later told me the special ed coordinator was giving her a hard time about coming in. 

I gave someone I think Melissa’s phone number because I knew she would be the most likely to be available. My co-teacher asked the principal if she could come with me to the hospital until someone from my family got there. He agreed. I wanted to cry, I was happy she cared that much about me. Sadly, getting onto a gurney and being put into an ambulance had become old hat, so I didn’t feel nervous about any of that. I just couldn’t believe it was happening again. One of my fears was that I would collapse at school. I was thankful, though, that it was while the kids were out of the classroom. It would have been traumatizing for them to see me collapse like that. 

This hospital stay was relatively short, I think. It’s hard to keep details straight.  The one thing I know for sure, though, is that the doctor was concerned enough to decide we needed to try something other than just medication. We discussed the possibility of surgery. She had been talking to several different specialists and found a doctor that could do a left sympathetic denervation. That meant they had to deflate my left lung for the procedure, and then cut a nerve chain in my spine that led to my heart, I think. It is responsible for the fight or flight response. It hadn’t been used a lot for my condition, but the times it was, it was successful. I was scheduled for the surgery in May. Obviously I was out of work again for the rest of the year. I had planned on retiring at the end of that school year, so it turned out that was my last day of teaching ever. Not exactly the way I had planned on ending my teaching career. 

This is where I am a little foggy about the time frame. I think it was about a month later that I had another incident. Technically I didn’t get shocked, but at first I thought I did. My heart went into v-tach and I passed out. It got out of the bad rhythm on its own, but I didn’t know that. This was the day I learned how dangerous cheating on the driving was. I had driven the short distance to MCH. I always parked in the back and walked along a path past the “smoking hut” where a lot of residents hung out. I had just walked past them carrying a cup holder with 3 coffees from Tim Horton’s when I got dizzy and passed out. I woke up face first on the sidewalk with coffee spilled everywhere. My pants were ripped and my knee was bleeding. I knew immediately what had happened. I looked back to the hut and no one seemed to have noticed. I tried to holler that I needed help but no one heard me. I figured my only option was to walk the rest of the way into the building and get help there. When I got to the door one of the residents I knew was coming out. I asked him to get me security. He was in a wheelchair, so he wheeled down the hall toward  the security office on the other side of the building. I sat on a bench in the entrance-way hoping I wouldn’t have another shock. No one else was around for several minutes. Finally an aide I knew walked through. I stopped him and asked him to call security for me. There was a phone nearby. They got there quickly and when they found out what happened, they called a code blue. Now I was surrounded by all kinds of people. I asked someone to get George. In the meantime an ambulance was called. They had me on the gurney by the time George got downstairs. The first thing he said was that he had a bad feeling it was me when he heard the code blue for the lobby. He knew I would be arriving around that time. 

I don’t remember much about the hospital stay except that the doctor was getting concerned about the frequency of my episodes. She did some more adjusting of medications. I think that’s when I started taking the Nadolol, which messed me up badly. It caused me to get dizzy and out of breath when I walked. I was still taking the huge dosage of Metoprolol so I was already tired all the time. This made it so bad that I couldn’t get through a day without taking a one to three hour nap. I was out of work for the rest of the school year for sure. I still visited George, but I used Uber to come and go. 

So I had my surgery in May and seemed to feel great through the rest of the month and June. I had a chance to go to school and say goodbye to my students, and I had a retirement party. Saying goodbye to the kids was the hardest part. I had that group since they were in 3rd grade. They would be leaving to go to middle school soon. One little girl put her arms around me and we both just cried and cried. One little boy I was close to refused to talk to me. I know he was angry I had “left” them. 

By July I felt the surgery and medications were doing the job. At that point George’s son had moved in with me temporarily. We rarely saw each other, but he was using the empty 2nd bedroom I had, and paying me a little bit of rent. One night I went to MCH to visit George and I stayed until close to midnight again. I took the Uber home and came upstairs. Matt was already in bed. I walked over to the living room light to turn it on when I suddenly felt really dizzy. I panicked and hurried to my chair. Just as I sat down I passed out and got shocked. When I woke up and figured out what happened I sat there for several minutes trying to decide what to do. I knew I should call 911, but I needed to go to the bathroom. I decided that was my priority for the moment. After I went, as I started to wash my hands, I passed out again. I hit my shoulder on the sink, leaving a painful bruise. I was just figuring out again where I was when I felt a sharp hard pain in my chest. I said out loud, “What was that?! Why does it hurt so much?!” Then it hit me I had just been shocked a 3rd time in about 5 minutes. I was terrified and afraid to stand up. I crawled out of the bathroom and knocked on Matt’s bedroom door. I told him I had been shocked and I needed him. He popped out of bed immediately and came out to the living room. I crawled up into my chair and passed out once again. Matt witnessed my 4 shock of the night. I asked him to call 911 for me. By then I was shaking badly. I also had him give me my night heart pills. That may have prevented me from having any more shocks that night. 

When the ambulance came I told Matt he didn’t have to come with, but he wanted to. I had to take the ride on a chair down the stairs again, but this time they did a better job and it was much steadier. Matt met me at the hospital and waited until we knew someone else was coming. We joked around some about my 9 lives, etc. At least he kept my spirits up. This was my worst experience psychologically. I had so hoped the surgery had worked, and being aware of 4 shocks in about 10 minutes was terrifying. 

It was this experience that caused me extreme anxiety that affected my daily life. I was afraid to get up and walk across the living room, let alone go anywhere. I still visited George, but I had Matt bring me in a wheelchair. The Nadolol was really bothering me on top of the anxiety. My life became very limited. Obviously the doctor was concerned as well. She talked about me having an ablation, which is essentially burning off a small part of the heart. It was the part she believed was causing it to go into a bad rhythm. She had me wear a halter monitor for 48 hours to track the palpitations. This would help her determine which part of my heart she needed to ablate. The results were interesting. I had about 4, 000 palpitations a day. Although heart palpitations in most people are harmless, the doctor had already determined that they can lead to a cardiac arrest for me. All I could think of was that I had about 8,000 opportunities for a cardiac arrest in two days. I can’t remember who said it, but someone later told me to think about it as 8,000 times I didn’t have a cardiac arrest. When I went in for my results, the doctor asked me what I do after 5:00 in the evening. I responded that’s when I go visit George. I thought she would say my palpitations got worse ( I immediately got it in my head I might have to cut back on my visits), but instead she said that’s when they seemed to calm down. Going to visit George was actually relaxing me! That was good news. 

So the decision was made that I would have an ablation done. For some reason that I no longer remember, it didn’t happen until early November. I moved to a new apartment on November 1 and I believe it was within a week that I had that procedure. Although they gave me anesthesia, it was the twilight kind. That means I was in and out of consciousness. I have had heart procedures done that way before, so I wasn’t nervous about it. It’s actually kind of cool! The only bad thing was that I ended up going into v-fib during the procedure and getting shocked. I was awake for that and didn’t enjoy it at all. I remember asking if I had just been shocked. They felt bad I was awake for it. Being shocked wasn’t supposed to happen during that procedure. 

I think I went home the next day. It was a relief to know I now had 2 procedures and all the medication backing me up so I wouldn’t need anymore shocks. Then about a week later, mid November 2017, I brought my clothes down to the laundry room. When I got back I sat in my chair and then felt that familiar dizziness. Sure enough, I was shocked again. Back to the hospital. I cried. I cried more than ever before, even in the ER. This wasn’t supposed to be happening anymore. 

When I spoke to my doctor she told me she thinks it happened because of everything my heart had been through the past couple of years, including the ablation. She said it needed time to settle down. Now it’s been almost 2 years and I haven’t had another shock. My fear is still there, though. It is just in the past 6 months or so that I’ve been able to work on getting out of the house, drive without feeling panic, walk any distance including going into a store. We have cut back on my medication, including taking me completely off the Nadolol. That made a huge difference right away. Just the other day I had my 2nd visit to Wegmans with my daughter and granddaughter. The first time we went we ate dinner and walked up and down a couple of aisles. This time we walked across the whole store and I did a small shopping trip. It was such a great feeling to be pushing a cart with my granddaughter in it! 

I still have some things to work on, but I have come a long way with my anxiety. I can only hope that I will never have to go through any of that again. I guess time will tell. 

I want to thank Paul for asking me to write this. It is interesting to think back to all of that. It makes me appreciate how far I’ve come. 

Paul: I want to thank Mary for writing this.  Although we are not married anymore, I still care very much for how she is doing.  She is the mother of our three children and grandmother of our grandchild plus our step-grandchild.  We have always wanted to share these experiences with others to educate people on what a cardiac arrest is.  Our divorce does not change that.  As for me, I am very happy in my new life with my new wife, Stacey.  Stacey is very supportive of these efforts, for which I am very thankful.

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