Tuesday, August 23, 2011

The story of my heart

With a BIG anniversary approaching this Wednesday, I thought it would be fitting to tell the tale that is my cardiac history. So sit back, relax, and try to remember your middle school anatomy class (and kudos to those who make it to the end of this post). 

Ever since I was in elementary school I had episodes where my heart would start racing. I have vivid memories of playing with my friends and saying 'Hold on, my heart is doing that 'thing' again' then taking a break until it stopped doing that 'thing'. Knowing what I know now, it is very hard for a child to explain what it is they are feeling. How is an 8 or 9 year old supposed to know what is normal and what is not when it comes to their health? 

These episodes would only happen every once in a while and I never thought they were something scary. In fact, over the years I had learned ways to make the episodes stop. Like holding my breath or bearing down like I was going to take a poo. Both of which, I would find out when I was older, were legitimate techniques for slowing a rapid heart rate. Isn't it crazy how your instincts can just take over?

So years and years go by, fast forward to my freshman year at ECU. I was in my first class of the day, drawing (Oh yes, I was an art major. Go ahead and laugh). My heart started to do it's 'thing' so I started to hold my breath and bear down like I usually did to stop it. Only this time it would not stop. About 5 minutes had passed and I finally said something to the teacher. He was one of many who thought I was full of shit when it came to my heart thing, but agreed to allow me to walk to the campus health clinic. 

Once I was there the nurse tried to take my heart rate with a blood pressure cuff. It was going so fast it would not register. She then tried to do it manually... she lost count around 200. Over 200 beats per minute. This was the first time I had ever even had my pulse taken and I was not aware that this was considered fast. During these episodes I am still able to talk to you and somewhat function; I just get dizzy and my vision starts to get fuzzy, like I might pass out at any moment. The campus Doc decided to send me to a local cardiologist, more specifically an electrophysiologist who deals mainly with the 'wiring' of the heart.

Doctor #1 had me wear an event monitor for 30 days. Basically it is a tiny EKG machine that looks like an old school pager with two wires coming off of it. Those wires are attached to electrodes that stick to your skin. Whenever my heart felt funny I pushed a record button and it would take a reading of the electrical activity that was going on at that time. I wore, I recorded, Doctor #1 diagnosed me with super ventricular tachycardia, or SVT. He recommended a procedure to permanently cure the problem rather than be on drugs for the rest of my life. 

The heart beats thanks to electrical impulses generated from your natural pacemaker, the SA node. These impulses travel to other nodes in the heart to make your heart contract. Here is a quick video from you tube that explains the whole process:

So what was going on in my heart? I had 'accessory pathways' or extra nodes that would, on occasion, pick up the impulse from the SA node, which would result in my super sonic heart rate. During an ablation procedure an electrophysiologist finds these accessory pathways (which are just nerve cells) and burns them using radio frequency. The nerve cells are dead = they can no longer pick up an impulse from the SA node. 

Doctor #1 does ablation #1, which was a success. Or so we thought.

In rare cases when you ablate an accessory pathway it uncovers yet another condition. I was one amongst the small percentages of folks who then developed inappropriate sinus tachycardia, or IST, after my ablation. It is worth noting that this was back in 2001 when very little was known about IST or any other electrical miss-wiring in the heart. Doctor #1 was in way over his head and he knew it. In fact, once I started feeling new symptoms and called his office for an appointment, they claimed that he had never treated me before. I was scared and felt like no one would listen to these new symptoms I was having, which now included chest pain. I returned home for the summer and started to look for a new cardiologist that would listen to what I was saying and take my symptoms seriously. I wish I could remember exactly how many I saw, but let's just say it was more than a couple. As many docs as I saw I wore twice as many event monitors. It sucked. I finally found Doctor #2 who seemed to know what he was talking about and seemed to know what to do to fix it.

Enter ablation procedure #2.

When you have IST, it means that your SA node (that natural pacemaker) fires inappropriately. Usually it responds to your other systems in the body and makes your heart rate rise and fall with activity, endorphins, stuff like that. Mine would just fire all willy nilly, beating faster than it should at rest. Aren't there medications you can take to make it behave, you ask? Why yes, there are, and they usually work great with folks who have IST. However I also have very low blood pressure. And all the meds (and yes, I tried them all) would make my already low BP drop to the danger zone where I would black out. So Doc #2 decided to try and alter my SA node enough to where it would slow my resting heart rate down. Remember how I said they use radio frequency to burn the nerve cells? During my first ablation he only had to make one burn. During this second ablation he had to do 40-something burns until he had to call it quits because I went into a 'shockable rhythm' (you know... when they yell CLEAR!). Doc #2 said it was not a success, that the equipment he had did not allow him to go to the part of my heart that he needed to. He referred me to Doc #3 who works for Duke who has the fancy equipment.

Many tests and many event monitors later Doc #3 decides to try yet another ablation. 

Enter ablation procedure #3, this time with 30-something burns.

Still unsuccessful at slowing my heart rate.

At this point it is 2006 and I decide to just try and live with it. I found that if I exercised and brought my heart rate up naturally it would help my resting heart rate to be lower. I had good days and bad days, but was (for the most part) 'fine'. And the only other option I had, since I had so many ablation procedures at this point, was a pacemaker. No one wanted that, especially since I was so darn young.

So I have a year or two feeling 'fine'. And then I had to go and get pregnant. 

Pregnancy is pretty darn hard on the heart, even in the healthiest of mamas. After having Noah I saw a steady decline in my ability to manage my fast resting heart rate. I would wake from a dead sleep and my HR would be around 120. I was no longer able to work out. Heck, I could not climb the stairs without feeling like I had just climbed a mountain. I would not accept this as my quality of life. I had a kid to take care of and keep up with and just KNEW that there was something else that could be done. 

I researched, researched and researched and found the authority of heart rhythm disorders, Doc #4. He is the big-wig. One of his bio's I found online said that he likes to find patients with medical conditions that seem to be walled in and thoughtfully plowing through those walls. This was my guy.

I left Japan, left my son and had ablation #4. Again, many burns were made. And again, the procedure was not a success. He was able to slow it SOME, but not as much as he or I would have liked to see. But he was scared that just one more burn would mean I would need a pacemaker. And again, no one wanted that. He also said that there was a lot of scar tissue from where the other docs had goofed around. He jokingly (but not-so-jokingly) said that I should have come to him straight away and could have avoided all those 'unnecessary' ablations procedures. 

I go back to Japan feeling somewhat better. But then a few months later it gets worse. And worse. And then more worse. I can no longer use a manual can opener without becoming short of breath. My resting heart rate is sky high. I am loosing weight because of it. Quality of life in the toilet. I call Doc #4 and he decides to do yet another ablation, this time being more aggressive and knowing that it might result in a pacemaker.

Enter ablation #5. He is aggressive, but to our surprise is able to slow my rate to the 80's without needing a pacemaker. High fives all around!

The thing with ablations is that it takes a few weeks for the scar tissue to fully form. It keeps growing as the burns heal. So I was not going to feel the full effect of this last ablation procedure for a few weeks. But in the mean time I started noticing other symptoms that were new and unusual. 

My head felt full, like I was hanging upside down. And any time I bent slightly forward or back the pressure in my head was unbearable. Then I noticed that the veins in my neck were bulging out, hulk style. I had to sleep sitting up. I decided to say something to Doc #3 (who was local, Doc #4 was in TX). Doc #3 examined and agreed that there was something going on. I have a CT scan to see what exactly it is causing these symptoms. CT scan showed that my superior vena cava was blocked by what they assume is scar tissue. Scar tissue that was there thanks to all of the ablations I have had. 

Remember, all but one of my ablations (read: FOUR) were focused on my SA node, the natural pace maker. The SA node is located in your right atrium, right where the superior vena cava joins the heart. The superior vena cava is the largest vein in the body and delivers the blood from the upper part of your body back to your heart. Since my SVC was somewhat blocked I had a back-up of blood in my veins, which is what was causing all these new and unusual symptoms. 

Doc #3 had no idea what to do. He talked to other docs in the area. None knew what to do. While I waited for them all to talk and figure it out yet ANOTHER symptom appeared; my heart would flat out stop at times. 

Remember how I said that scar tissue keeps growing after the ablation procedure? Well my scar tissue grew to the point where my SA node would decide to just stop sending out a signal for my heart to beat at times. The heart is wired with 'back ups' incase this happens, so it was not a 'lethal' problem, but did mean that I would indeed need a pacemaker after all. My heart was stopping for a few seconds a day. And I could feel it. It was beyond freaky. 

I decided to stop messing around with the local NC docs who had no clue what to do with me. I headed to the Cleveland Clinic, the best heart institute in the US. 

Tests were done. It was found that my SVC was occluded (fancy word for blocked) to about 3mm. That is really freaking small. Because of this the pressure in my SVC was dangerously high. I had to have open heart surgery to reconstruct my SVC. 

And that, my friends, is what lead me to the surgery I will be celebrating the anniversary of in a few days. Details will follow in the second installment, but for now I have a crying Amelia to attend to:-)

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