Tuesday, January 6, 2009

My Chronic Illness Story

I haven't been feeling well this week, so I've been in hiding a little bit. Just trying to manage the daily grind. I completely and utterly despise talking about my health problems, but I might as well get it out there. Help my visitors understand me maybe a tiny bit.

When I was in high school, I tried to be an athlete like my big sister. I was tall, so everyone just assumed I would follow in her basketball shoes. I hated basketball, but I did try high jump. The jumping I liked, and I was good at it. The problem was that to be on the track team, you couldn't just high jump. You had to run at practice, too. I could NOT run. Couldn't. Shortness of breath. Fatigue. Palpitations. My mother took me to doctors who diagnosed everything from asthma to anorexia. All of them were wrong.

I remember that search. I felt so small. So weak. I couldn't imagine living that way forever, but I couldn't see an answer.

Fast forward to my early twenties. The problems continued sporadically. Then, I had two children only thirteen months apart. My body went into official overload, and my symptoms went from every so often to daily. Over a period of about a month, I repeatedly went to the emergency room, begging for help. They told me I was too young to have any problems. Maybe it was all my stomach. Maybe I was just a paranoid woman with an anxiety disorder. They couldn't explain it, so it must just be in my head, right?

Finally, they caught it. There on the EKG. It wasn't in my head. I had a heart problem. This wandering nemesis had a name. It started out with Supra Ventricular Tachycardia, a fast heart rate that is annoying and causes problems, but it's not uncommon or fatal. Medication worked for awhile. I was a new woman. Then, the medication stopped being as effective. I also developed Atrial Fibrillation, a nastier arrhythmia that can cause blood clots. I bounced from doctor to doctor and medicine to medicine trying to stabilize. Sometimes I would be successful for a few months, maybe even a year. But it always fell apart again. Chaos always returned.

So, I started having Catheter Ablations. During an ablation, catheters are inserted in the groin and jugular vein and passed along into the heart. A computer maps out the electrical system of the heart, finding the origin of the impulses that are causing the arrhythmia. The spots are literally burned away. I started having ablations in 1999 when they were still new, but they're now quite common and usually successful. Lots of people have great outcomes.

After two ablations and two more attempts, I decided to take a break. My condition was complicated, and the doctors told me the technology was not at a place to help me at that time. I needed to wait for technology to catch up. While I hadn't been cured, I was stable. I could get by on medication, even though the side effects were unpleasant. Shortly thereafter, I discovered that during the course of one of the ablations, they had given me a Heart Block. The electrical signal telling my heart to beat was blocked from traveling from the upper chambers to the lower chambers. In 2001, I had a pacemaker implanted.

Still, I pushed on. Heart Block is a known risk. I knew there was a small chance, and you never think those things will happen to you. Besides, they painted the pacemaker picture with pretty colors. The doctors made it sound like no big deal. Well, it's not the worst thing in the world to have by a long shot, but it definitely isn't so pretty. :)

Several years passed. I was so stable I decided to have another child. After that pregnancy, my body went into a tailspin. The arrhythmias refused to be controlled by medication. It looked like science might have caught up with me, though. I was willing to try a procedure again.

I had my third catheter ablation for atrial fibrillation in 2006. The good news was, it finally cured my atrial fibrillation. I still have other arrhythmias, but they are reasonably controlled and I can put up with them.

Another one of those known, small risks from ablation is a condition called Pulmonary Vein Stenosis. During the procedure, they burn in the area of the heart where the pulmonary veins are. Those are the four veins leading from the lungs to the heart. Wacky electrical signals often go up in those veins causing arrhythmia. Blocking those signals is what stopped my atrial fibrillation. That's a good thing. In the process, though, my pulmonary veins were damaged. Now, two of them have severe stenosis. They narrowed almost completely shut. In the fall of 2006, I went in for angioplasty of those veins. They successfully ballooned them open. It didn't last long, though. They narrowed again several months later.

Which brings us to the other problem that was lurking in the background. This whole time, my Tricuspid Valve had a small leak. Barely noticeable. In fact, no one would have known about it if I wasn't having other heart tests. I had no symptoms. For reasons unknown, the leak suddenly became much worse. By the time of the angioplasty, I was in Congestive Heart Failure, and the leak was the greatest it can be. The valve had to be fixed.

Remember those pulmonary veins? Yes, as I mentioned, they had narrowed again. Didn't help matters any. I had angioplasty again in February 2007. Four days later, I had open heart surgery to repair my valve. Three days after that, I had my pacemaker replaced with a model more suited to heart failure. It was a long week... And a long recovery.

In July 2007, surprise, surprise, my pulmonary veins narrowed yet again. This time, I had two stents placed in the veins. The storm calmed. I healed. I adjusted to life. I continued my conversion to Orthodoxy. Such a valuable learning time that was!

I made it over a year the next time. In September 2008, I had my fourth angioplasty, reopening one of my stents.

So, here I sit in January 2009, looking back at the roller coaster. A few months up, a few months down. I guess I'm due.

I hate watching the pattern. It's so annoying in its predictability. The shortness of breath is back. The cough is back. The irregular heartbeat is back. The bone-weary fatigue is back. The knife pain in my lungs is back. Sigh...it all came back.

Now, I play the guessing game. Which problem is it? Did the veins narrow again? Did my valve repair fail? Did my mitral valve, which also has a leak by the way, escalate just like the other one did? Will it be my 10th catheterization or my 2nd open heart? Frankly, I'm not in the mood for either right now.

So, that's my history. The short version that is still rather long. I haven't talked about any of the feelings or all the truly wonderful things I've gained from these experiences. But that's where I stand. Just so you know.

I was just thinking about all this today on Theopany. The feast where we remember Christ's baptism, where the Trinity was revealed. I love Theophany. All the water. The Old Testament readings from Royal Hours yesterday. Story after story of water. How God uses water to make new life. To bring order out of chaos. Christ the conqueror. Christ the servant. We read about water. We sang about water. Then, we were covered in water, my three year old giggling with glee, as the priest blessed us by sprinkling the water all over the church and the people. Lastly, we stood in line with our bottles, filling them with the holy water to bring home and cherish for the next year. Water, water everywhere.

Before Liturgy today, I lit a candle with a prayer that I would be renewed again in the waters this day. In body? Nah. My sights are a little higher than that. In this new year, I want to be renewed much deeper than that. My body doesn't cooperate most of the time, but I can't control it. If there's one thing I've learned beyond a doubt, it is that. I can't decide when my body will fail or succeed. I can't determine the number of my days. But I can offer this chaos to Christ. I can use the pain of my body to feed my spirit. I can let it push me into the snake-filled pit of myself, or I can push myself toward the still waters of God. Today...today I'm back in the dreaded time of uncertainty, but I'm certain of one thing. I know I want the water.

1 comment:

  1. What a wonderful and honest post! Thank you for sharing. I will keep you in my prayers.

    Suffering has a way of drawing us closer to Christ, doesn't it?