My dad’s heart condition is complicated, to say the least. Between serious rhythm problems that don’t respond well to treatment, Marfan Syndrome, and a complex array of powerful medications, most cardiologists don’t want to touch him with a 10 foot pole. His lack of response to treatments has stumped even the world’s foremost heart experts. He had a powerful experience this month which he said made him feel like a new person.
If you know my dad, you know that he is quite understated. When he describes feeling “uncomfortable” you can be assured that he likely describing the worst discomfort imaginable. When he says that the previous ablation procedures did not have optimal results, he’s leaving out the part about all 6 ½ feet of him toppling to the dining room floor when his heart spontaneously stopped, just months after the “not-so-successful” procedure (this incident was several years ago, no need to send a card). It was this very procedure, that he was scheduled to have for the 4thtime this month. It was this very procedure that made all of the difference. At my church, during lent, we are encouraged to ask God for something BIG. I decided to ask for my dad’s heart rhythm problems to resolve, but I didn’t really expect any of this to happen.
Here’s his story (written by my Dad, shared with permission, edited by me (to make it shorter for this blog):
Background info: For the past 30 years I have struggled with episodes of atrial fibrillation (irregular heart rate). Since my 20’s I have had hundreds of episodes of a-fib. Atrial fibrillation is a fairly common problem and many people are not even aware that their hearts are out of rhythm. I have more severe version of the disorder and always know the moment my heart goes out of rhythm and the moment it goes back into a normal beat, called sinus rhythm. The treatments for a-fib include medication, electrocardioversion, and cardiac ablations. I have experienced all of these treatments.
I have tried many drugs to control my rhythm. I have had over 50 electrocardioversions (electrical shock to the heart to cause it to convert to a normal rhythm). The most complex treatment is called a cardiac ablation. Ablations involve freezing or burning heart tissue in order to repair the electrical “wiring” of the heart. This typically is a 6-10 hour procedure. I had this done in 1998, 2003, 2006, and 2013. My story centers on the ablation I had done in March of 2013. The various treatments provided some relief. I would sometime go for weeks or months in normal rhythm, but eventually my old nemesis would return with a vengeance and I would feel worse than ever. One of the medications worked very well for me. It is called Amiodarone and it is the heavy artillery in the arsenal of heart medications. Amiodarone is usually used as a last resort because it brings with it some potential serious side effects including thyroid, lung, kidney, and liver damage. I took it for several years (2009-2012) and it was very effective at preventing afib. The downside was that I began developing tremors in my hands, and thyroid problems.
Last August a cardiologist at the Mayo Clinic advised me to discontinue Amiodarone. He said I was too young to be on such a powerful medication. Because it had worked so well, I reluctantly agreed to discontinue the drug. I resigned myself to the probability that my a-fib woes would soon return. Sure enough, my irregular rhythm returned on the Saturday after Thanksgiving.
Through the years my local cardiologist has become a trusted friend. He would usually tell me not to worry because we had some treatment options. On this visit he looked over my charts with a somber expression. He looked at me and said, “We don’t have many options.” I grabbed at the glimmer of hope and asked him what the options were. He replied, “We don’t have any options left. Mayo took you off the only drug that ever worked and they will need to come up with a plan. I will continue to see you as a patient if and when the Mayo clinic can come up with a treatment that keeps you in rhythm for several months.” My heart sank.
The first plan of action was a different rhythm drug called “Tikoysyn.” As much as I hate missing another break (went to Rochester over Thanksgiving), I hate missing school more, so I scheduled a 3 day hospital stay during Christmas break. I felt some hope that the plan would work. I looked forward to getting relief from the incessant pounding of my heart that had been going on for so long. Each school day had become a struggle. I was becoming a cranky old teacher and colleague and husband and dad. That is not my nature and I did not like it at all.
After 3 days in the hospital with this new medication, my heart was still bouncing around. They tried to shock it back into rhythm three times, but to no avail. The specialists came into my room and told me that Tikosyn was not going to work for me. Then the cardiologist in charge looked at me and asked, “What do you want to do now?” Many thoughts flashed through my mind. I wanted to have my Christmas break back, I wanted to quit, I wanted to be healed, I wanted to retire, I wanted to go home and sit in my basement. I wanted another plan. I asked him what he would do if he were me. He suggested we try another ablation procedure. Remember that I had already had 3 of them without much success.
I visited with my primary care physician who I have been seeing for 25 years. He never seemed too enthused about my cardiac ablations and I thought that he might just tell me to forget about it. I had decided that I would do whatever he suggested. If it meant just living with the rhythm problem, then so be it. Surprisingly, he told me to go for it.
My local cardiologist also thought that I should try another ablation. He added that he doubted it would work, but felt it was the next logical step. I went ahead and scheduled the appointment for the Wednesday of Spring Break (of course – I didn’t want to miss school). So I plodded through January, February, and the first weeks of March with the old ticker galloping away. I know that my family has faithfully prayed for my recovery over the years, but after all of these years my hopes weren’t high.
Spring Break 2013: As the appointment date drew near, I was having some serious doubts about going through with another ablation. The trip to Rochester on Tuesday morning was terrible. The highway was covered with several inches of solid ice. A strong NW wind was causing blowing and drifting across the road. I seriously thought about turning around, but I didn’t want to go back over what we had already been through. I kept hoping we would “drive out of it” but that was not the case. It was one of the worst drives I have ever made — and I have driven on some bad roads over the years. So about that time my stress level and heart rate were both off the charts. We were listening to Christian radio while we drove and heard a verse that really struck me. Exodus 14:14 “The Lord will fight for you, you need only to be still.” I didn’t know the context until later, but Moses said that to the Israelites as they stood by the Red Sea with the Egyptian army bearing down on them. I more needed the Lord to drive, but anyway, we pushed on and eventually reached the Mayo Clinic.
After a battery of tests, I met with a doctor for a consultation about the procedure. During the consultation the doctor explained everything that can possibly go wrong during the procedure and then gave me a consent form to sign. The list of possible complications is long and I was getting more and more wary of going through with it, especially since I was quite certain it would be unsuccessful. I’m not sure why, but I did sign the consent form. After surviving the car ride, I figured this wouldn’t be a big deal.
The next day, my alarm went off at 4:30 AM and we went to the hospital. I had been off the medication that keeps my heart slowed to a reasonable rate for a couple of days. As a result my rate had been racing at 160-170 beats per minute for the past day and I was feeling desperate for some relief. The surgery preparation involves a lot of questions, poking, shaving, questions, and more poking. I was eventually carted off to a holding area where I was to wait to be wheeled to the OR
As I was lying waiting and waiting for my surgery to begin mind began wandering. I thought about how this was a total waste of time and money. I thought about my family and friends that had been praying for me over the years. I thought about my mother and how many times she had been at the hospital or at home waiting for news about my surgeries. Of course, I thought about my wife and how she has always been there for me. Then I thought about myself and how I had not been able to pray about this affliction for a long time. I was discouraged to the point of being sure that God would not help me with atrial fibrillation. I thought of the verse that I had heard on the Radio,” The Lord will fight for you, you need only to be still.” I couldn’t think of a prayer to pray, so the idea that maybe I should recite some good old-fashioned Lutheran liturgy. Ironically, the only one that I could think of was “Create in me a clean heart O Lord”… and I couldn’t remember the rest! So I repeated that short line many times, not even realizing that it was referencing my heart. I was thinking, “Lord, I’ve got nothing, I can’t even pray about this, I don’t want to do this, if you would do something – I would be surprised.” About that time they did find me and took me to the procedure room. Soon after that I drifted off to sleep while the team went to work on me.
Seven hours later I began to come to again. People were unhooking equipment and putting things away and asking me how I was doing. Even though I was still very out of it, I could feel that my heart was in the glorious sinus rhythm that I hadn’t felt for three and half months. I was thankful, but truthfully doubtful that it would last.
Later that day, the doctor who performed the ablation stopped in my room. He said that the ablation went much better than he expected and that he thought it would hold (not the type of report I’m accustomed to). In my 2006 ablation the doctor found a problem area that he did not want to treat too aggressively. He thought that the area would probably give me problems and within two months I went back into a-fib.
The heart is controlled by a complex electrical system. There are no wires. Instead, the heart tissue itself conducts electrical impulses. For some reason, the electrical impulses sometimes go wild and cause the heart to quiver instead of beat. If that happens in the upper chambers it is called atrial fibrillation because the upper chambers are called “atria”. That is my issue. It is generally not life threatening, but it does stress the heart and causes unpleasant side effects such as fatigue and discomfort. If the lower chambers called, “ventricles” begin to fibrillate, then that is often fatal because the blood does not go anywhere. The problem area discovered in 2006 was with a large blood vessel called the superior vena cava or SVC. The SVC brings blood to the right side of the heart from the upper part of the body. The SVC does not usually cause rhythm problems. In fact the doctor said that only about 1 in 100 cases involve the SVC. In 2006 the doctor found the problem area on the SVC, but could not do anything with it because it was adjacent to the phrenic nerve, which controls the diaphragm. He was fairly certain that if he burned the heart tissue, he would damage the phenic nerve and possibly paralyze the diaphragm. As a result, he left it alone.
I asked the doctor about the phrenic nerve and the heart tissue. He said that the nerve was not near the problem area this time. When I asked how that could be said he’d consulted with my previous surgeon and the two of them “could not give a reason for it.” Both doctors are extremely renowned electrophysiologists who do hundreds of cardiac ablation procedures each year, and they were baffled! I thought back to the ancient passage written by King David that was on my mind before the procedure. Now, I admit to being a science guy. My first reaction is to doubt things, however, let’s look at the passage in Psalms.
Psalm 51:10 – 11 Create in me a clean heart O Lord, and Renew a right spirit within me. Cast me not away from thy presence, and take not your Holy Spirit from me
Restore unto me the joy of your salvation, and grant me your free Spirit.
This was a life changing experience for me. The mind, body, spirit connection was all evident, and I sense a renewal in all three of those areas in my life. So, despite having a whopper of a cold, my heart remains in sinus (normal) rhythm. Without a doubt, this was the best Spring break of my life.