Broken Heart Don't Break Me
My heart is broken. Not broken in the sense of a bad relationship, or “sticks and stones,” but structurally broken. I was born with a single ventricle (one pumping chamber), and several other structural abnormalities. But because it is broken, I am strong. I am strong because of events in my life that my broken heart has allowed me to attend. My broken heart has allowed me to meet many people, and experience many things. I have experienced more in thirty-one years, than many people experience in their entire lifetime. My life is made of many chapters of ups and downs. Healthy times and sick times have shaped my inner strength, and made me the kind of man I am today.
When something is broken, it requires occasional patching. Although I had three open heart surgeries by the time I was seven, I have had to occasionally be repaired by less invasive methods. This summer, my heart became electrically broken, when I started having many irregular heart rhythms.
Around February of this year, I began having episodes where my heart rate would reach around one hundred eighty beats per minute. This arrhythmia is called atrial flutter. This is an awful feeling that I best describe as running a marathon while sitting down. I would feel dizzy and weak during these episodes. The longest episode I had lasted ten days straight. Imagine trying to sleep, while your body is trying to run. Imagine trying to sit and watch TV while your body is shaking to the rhythm of your fast heart rate.
I have been treated by the Mayo Clinic since I was seven years old. I hold the Mayo Clinic in the highest regards, and owe my entire life to their doctors.
During my first visit of many to the Mayo Clinic this year, my cardiologists came up with options to help the problem. My family and I had to pick the correct option, best suited for me. One option that would fix the problem was to undergo another open heart surgery, and to have a pacemaker placed inside the heart. Because of my convoluted anatomy, it is difficult to place a pacemaker in both chambers necessary for adequate pacemaker success. The other option was to be placed on an anti-arrhythmia drug, dofetilide, to medically control the rhythm irregularity. The problem with the drug was that it may not work that long, and as with all anti-arrhythmia drugs, it may cause additional arrhythmias. After much discussion, praying, and thinking, my family and I decided that I needed to have surgery to adequately fix this problem that was taking over my life, and not allowing me to do the things I wanted to do. This was tough. I told my parents that I had never had to make these decisions, as I was always young before, and they had to make them for me. I gained a new admiration for my parents and their choices, and decisions while I was young…WOW.
I had to have a pre-operative diagnostic heart catheterization. This was supposed to be routine. This was supposed to be where the doctors looked a certain pressures in my heart to make sure my surgery would be a success. Often times in life, you should expect the unexpected. The day after the heart cath, we went to see the surgeon. We were all prepared for tying up loose ends, asking last minute questions, and getting ready to have a fun weekend before the surgery, to be with each other (family and friends), and go into the surgery totally prepared mentally and emotionally. But, after the heart cath I was told I could not have the surgery. It turned out the pressures in my heart were too high for a successful surgery. I was told that if I did have the surgery with these high pressures I may have difficulties, and that I may end up on a transplant list in the long run.
Preparing for the fact that I WAS going to have surgery was easy. I knew (at that time) that it was exactly what I needed and wanted, to get my heart in the shape it needs to be in order to carry me on for the rest of my life. That was the easy part. I cannot describe to you what your emotions, and what your body does, when you are totally prepared for an ordeal such as open-heart surgery, then get totally sideswiped, with the idea that you cannot have surgery, because your heart cannot handle it Although it was a blessing in disguise, the switch from being able to have surgery to not being able to have surgery, was actually rough on me.
I kept wondering why I have been so healthy all these years, except for the arrhythmias, yet why was I not seeing signs that would indicate that the pressures in my heart were so high? I quickly came to the realization that God was completely behind it all. Why else would the numbers say I should be feeling much worse, yet I was not? In my mind, something bad was supposed to happen that day, or in the following days, we will never know what, but I think something was to go wrong, and God has a bigger plan for me, and did not put me in that position. I have thanked God every day since then for a surgeon who does not put his skills and ego above his logic. The surgeon said, “We have made this mistake before.” Although I feel bad for his “mistakes” in the past, I thank God that science and medicine is based on mistakes and learning from those mistakes, and that the surgeon learned from those mistakes, and used his logic and knowledge to stop everyone in our tracks and take a step back.
So, on this day, we were told we had to go in a different direction. We had to wait five days though, to come up with another plan because my main cardiologist was out of town and the surgeon wanted to talk to everyone before we came up with the next step. So, we had to go from Friday to Wednesday wondering what in the world we were going to do. Meanwhile, I was having arrhythmias during dinner and they were waking me up, and were making me feel uncomfortable. Luckily, our friends came up to Minnesota to be with us. They were coming for the surgery anyway. They all said they would still come up and support us as we were waiting for the next decision. We had the best time though. We laughed practically the entire weekend, and this really took up a lot of our time, which we probably would have spent contemplating what to do next.
So Wednesday came, yet we still could not see my cardiologist until 4:15pm. I have been seeing this doctor since I was six years old. We have basically grown up together. I owe every year of my life to him. He has kept me going, and kept me going in a strong way. He was surprised that my cath numbers were so high. My cardiologist and my electrophysiologist decided that the best course of action, with the least risk, would be to place me on the anti-arrhythmia medication. My parents can tell you, I was somewhat bummed over this choice. I just did not have a good feeling about the drugs. Also, they have to put you in the hospital because if something bad is going to happen, it usually happens within the first three to seven days. Thus you are sitting in the hospital hoping that side effects do not occur and that the drug will work.
So the next day, I go off to be admitted to the hospital. At that time I was feeling ok, except tired, drained, and the annoying arrhythmias. I walked up to the admission desk and said, “I have reservations for Rothlein.” Seriously, I felt like I was going to a hotel, since you usually go into the hospital on a gurney, or ambulance, not walking upright, volunteering for service. Between the IV’s, blood draws at 4:30am, and ECG’s twice a day, this was not fun, but I had definitely been through worse in my life. Also, the first day, they gave me heparin shots (three times a day) in my stomach, and these shots burn. They did this because it was protocol on that floor since most of the patients are eighty years old, in heart failure, and could not walk, thus were at risk for blood clots. I made a deal with them, that if they would not give me the heparin shots in my stomach, I would walk several times a day. So, as I went down the hall in my gown, robe, IV, heart monitor, and booties, I called it my “Heparin Prevention Program.”
At first they had me on the low sodium diet, because I was on the cardiac floor. One night, I had chicken stir fry. I told my mom it tasted like rice, chicken and veggies drenched and marinated in sweat. The apple crisp was good, and I got ice cream whenever I wanted.
They also put me on a new blood pressure medication because my blood pressure was so high (one of the surprising results of the cath). My high blood pressure is causing my ventricle (the lower chamber of the heart) to become thickened, and stiff, which is not good, since I only have one ventricle to do all the work, so they have to get my blood pressure down. This new medication made me dizzy. It dropped my blood pressure so quickly, I was light-headed and dizzy. They halved the dose on my way out of the hospital. The doctors said it may take a few weeks to get used to the new pressure. I did get used to the medication, and my blood pressure started to come down.
Two days after returning home from being placed on this new medication to thwart my arrhythmias, I was watching a movie at home with my girlfriend and I was back into atrial flutter again. I called my doctor at the Mayo Clinic and he said to see if it would convert, or go back into a normal rhythm, in a couple of hours. It did not convert, so I was back at the local emergency room.
There are several maneuvers you can do to try to get your arrhythmia to break. These include holding your breath, blowing into a straw that is capped off at the end, and eating ice. I was doing these in the emergency room, and my arrhythmia would not break. The doctors then placed me into the hospital, to see if it would convert. If it had not converted, they were going to have to do electrical cardioversion. This is where you are sedated, and they use the patches to give your body and heart a jolt of electricity to hopefully convert to a normal rhythm. Luckily for me this time my heart rhythm converted on its own and I did not have to be cardioverted.
After talking to my cardiologists at the Mayo Clinic they said to wait and see if I would go back into the flutter rhythm, before having to go back to Rochester, MN. Since I was on the dofetilide, theoretically my heart should not go back into atrial flutter. Well, two weeks went by, with a normal rhythm, and one day, I was back in atrial flutter. My doctors were trying to be very conservative, which I appreciated; I would rather be conservative and try all less invasive measures before we jumped to any big time procedures.
After this episode, my cardiologists in Florida tried to electrically cardiovert me because my heart would not convert on its own. After an unsuccessful cardioversion, we were back on our way to the Mayo Clinic for new options. The popular new option at this point was to increase my medication. To increase it though, you have to be placed back in the hospital, because as the increase in dose is occurring, the same side effects can present themselves. So, I was in the hospital for another five days increasing my dofetilide dose, and being bored in the hospital. During this visit also, the Mayo Clinic doctors tried the electrical cardioversion, and were successful in getting my heart back to a normal rhythm. I left the Mayo Clinic to go back to Florida on a Friday.
The very next day, Saturday, I was back in atrial flutter! By this time, enough was enough. I was so discouraged, so sad, and so annoyed. I could not believe I was going through all this. I could not believe that first of all I could not have the surgery to fix this problem, but also the drug that was being used to mask this problem was not working. I did not know where to go, where to turn to. I never lost my faith in God, and never lost my faith in my cardiologists. After yet another unsuccessful cardioversion attempt with my doctors in Florida, I was back on a plane to the Mayo Clinic. This time all my doctors said we needed to do more invasive procedures to disrupt this arrhythmia.
My electrophysiologist scheduled an ablation procedure for me. During this procedure they place catheters in both the veins and arteries around the groin, and sometimes in the neck, and map out the electrical pathways of my heart, they can then see where the arrhythmias are, then do a procedure to disrupt the pathways inside the heart. The doctors discussed putting in a pacemaker, with a lead in my atrium (the top chamber of the heart), that would act as an anti-arrhythmia device that would detect and slow future atrial flutter episodes. In order to put the pacemaker in they had to close two extraneous blood vessels that my body had grown, that could be a pathway for blood clots to go to my brain, if not closed off. So three major things had to get done to eliminate or decrease the incidence of arrhythmias. The first procedure, the ablation procedure was to take place on Monday, if everything was normal during the procedure they would close off the vessels and place the pacemaker, all at the same time. I was excited; I was in atrial flutter, and I wanted to be fixed.
So Monday came around, I had now been in atrial flutter for ten days. We were hoping I would go into the procedure early in the day, but unfortunately I did not go to the procedure until that evening. During the ablation proceedings, my blood pressure dropped some and was controlled with medication. Due to this possible complication they were unable to close off the vessels or place the pacemaker, so this was going to be a week long affair. They were successful, however in ablation my main atrial flutter pathway! There were other flutter pathways they identified but those either converted on their own, or were controlled with a temporary pacemaker lead they tried. This was good news that I was going to get a pacemaker. The one complication that did occur was that my main flutter pathway was near the nerve that controls the diaphragm (phrenic nerve), so I now have temporary paralysis of my right diaphragm. I developed fluid in my chest because of this and my right lung is not aerating correctly. They say most of the time this diaphragm problem resolves, but it takes a long time to happen. It was just another bump in the road of a long summer.
Wednesday of this week came, and they were able to close off the two blood vessels via another heart catheterization. There were no complications during this procedure. Finally, on that Friday, I got the pacemaker that will hopefully control future arrhythmias and allow me to live peacefully with a normal heart rhythm and rate. I was so excited. I remember coming back from my pacemaker placement with a smile on my face because I had gotten my pacemaker.
It has been a couple of months since I left the hospital from this horrible summer. I am feeling well, and am back at work.
Yes, all this at age thirty-one. All this is just one summer. All this is just one fraction of the experiences in my life. I am thankful though, for the support of my family, and my girlfriend. Without them for support and my doctors for guidance, I would not be here today. I am enjoying my normal rhythm, trying not to take anything for granted. Yes, my heart is broken, but my life is not. My heart may need patching, but at least there are patches that can be place, and procedures to do. My heart may be broken, but it is not breakable.