This week has been a pretty good one, overall. I had time to really look over a great IST website/support group and was very enlightened. It is so nice to find a group of people who are going through the same thing I am. While I was perusing the site, I kept reading about people going to a cardiac electrophysiologist, which I've never heard of before. After doing a little more research, I discovered that a cardiac EP is like an electrician for the heart. Well, since inappropriate sinus tachycardia is an electrical problem, I think maybe I ought to see one just to get his/her take on the situation. I was fortunate enough to find one in town AND in our insurance network! Praise God! I figured I would have to go out of town, but I will only need to travel to the south side of town. I called and was scheduled for Sept 16, but the nurse called Friday with an opening on Sept 9, hooray! If you want to learn more about IST, here is that fabulous website and support group: http://www.geocities.com/inappropriatesinustachy/main.html
I also got the unofficial word from FWCS that I am not going to be allowed to return to school half-days. I'm not really surprised, and am just trusting that God has a plan for all of this. The good news is, my job is secure for two years, which is a relief for us. Scott is debating on working two days a week, as he doesn't have class on Tuesdays or Thursdays. Please pray for wisdom about this. I don't want him to spread himself too thin, but I know he is worried about the next few months financially. Enjoy the sunny weekend!
Saturday, August 29, 2009
Friday, August 28, 2009
Scott and I met in high school, dated off and on through college, and married in March of 2001. We had our little girl, Katie, two years later and Ryan twenty months after that. Over the years, we’ve had our share of ups and downs like everyone does and are learning to trust God no matter the circumstance.
I could write an entire book about my experiences over the last 6 months, but I will try to shorten it as best as I can:
At the end of February 2009, I started having trouble breathing at school and was absolutely exhausted. I was fortunate enough to have a great student teacher, Roberta, whom I relied upon heavily. I went to a doctor in my family practice, who diagnosed me with bronchitis and an upper respiratory infection. After two rounds of antibiotics and several days at home, I went in to the Saturday clinic at the same practice. He did an EKG, which came back normal, and a breathing treatment, which made my symptoms worse. He then decided to admit me to the hospital.
My time in the hospital was less than ideal, to say the least. Scott was in school full-time and also in charge of shuttling our kids to school and pre-school, plus trying to visit me at the hospital (the one the doctor made me go to was about a half-hour away from our house). None of the doctors there knew what was wrong with me. I would see a cardiologist who would declare there was nothing wrong with my heart, so they’d send in a pulmonologist who would say my lungs were fine. Then we’d repeat the process. On the fifth day, a new cardiologist came in, spent two minutes with me and decided it was anxiety and I was having a month long panic attack. He prescribed a beta-blocker, prednisone for my lungs and an anti-anxiety pill. No follow-up needed with him, just go see your regular doctor in a month. Ugh! How frustrating! I knew this was more than anxiety, but I was ready to be done with that hospital and they way they dealt with me. I called the Heart Center and made an appointment with Dr. Rich the following Monday. He spent a lot of time with me during my appointment and really tried to analyze the situation. Unfortunately, he was also unable to diagnose me, but I appreciated his honesty in the situation (instead of just making something up!). He and my GP decided it was time to go to the IU Medical Center in Indianapolis, and they made an appointment for me to see a pulmologist, Dr. Sheski, on my 30th birthday, April 14. Needless to say, I left the office in tears. For the last year, I’ve been so excited about turning 30. I couldn’t wait! Most of my friends were dreading this milestone, but I was so thrilled at all that would come in this new decade! I was also disappointed to wait so long to see the new doctor. Three weeks is not unusual to see a specialist, but keep in mind that I could barely function. Most days, I couldn’t even go down the stairs because I had absolutely no energy and it was all I could do to breathe. Some days it was so bad, I couldn’t go to sleep because I was afraid my body wouldn’t breathe on its own. In fact, I can remember a couple of nights where I just knew that was the end for me. I was so certain my body would not continue to breathe on its own that I was actually surprised when I woke up in the morning. Those nights truly were the scariest times I’ve experienced so far. I mean, I know I will be going to heaven when I die, but when you really aren’t sure if you are going to be alive in the morning, you start thinking of all the things you’d miss if you didn’t: Katie going to prom, Ryan playing sports in high school, high school and college graduations, seeing my little girl’s wedding, watching Ryan find the love of his life, grandkids, growing old with my sweet husband, etc. Like I said, those were some rough, tear-filled nights.
Fortunately, God heard my cries and had mercy: Dr. Sheski decided to squeeze me in between appointments. It was spring break for my mom, so she and I headed to Indy the next day, laden with books, IPods and snacks (we were told to expect a long wait, since I didn’t have an official appointment). Mom wheeled me around the hospital, since I couldn’t walk that far, and eventually we found his office. Imagine our surprise when we saw Dr. Sheski in less than 10 minutes! He examined me, took my papers from the hospital and told me he would call me after he’d had a chance to read over everything and make a plan. The next week, his nurse called and said he ordered an exercise bike test that would check my heart and lungs both, as well as an asthma test.
On April 13, Scott and I headed back to Indy for the tests. First up was the asthma test, which I passed with flying colors. Next came the exercise bike test. Oh, my! I had about a dozen wires stuck under my shirt which connected to five or six different machines and two computers! It was so funny looking, that I had Scott take a picture of me. Hey, the Bible tells us to rejoice at all times, so we might as well have a little fun with the situation, right? They wanted me to ride the bike in two-minute intervals, with the resistance getting harder each time. The goal was to go as long as you possibly could. I was only able to make it 8 minutes (sad, considering I was up to 4 miles on the elliptical before all of this began!)
A few days later, Dr. Sheski personally called to give me the results (never a good sign). I will never forget that moment, as he told me, “Karin, your lungs look good, but there is something wrong with your heart. I don’t know what it is, but something’s wrong with it. Your heart rate went much much higher than it should. You need to see a really good cardiologist.” Yikes! He told me I could either find one at home, or he could recommend one in Indy. Since I’d already had three cardiologists from home tell me my heart was fine, I opted to go with one he knew.
At the end of April, Dr. Elisabeth von der Lohe “happened” to have a cancellation, hooray! I went to see her at the Krannert Institute of Cardiology. She did an EKG and lipid profile, and told me we could either do a 48-hour Holter test or a cardiac catheterization first. We opted for the Holter test, since probing my heart is about the last thing on my “fun things to do” list. So her nurse stuck electrodes on me and told me to do as much as I could to replicate the symptoms. Any time I had symptoms, push the purple button. I remember thinking to myself, “No problem, I have trouble breathing just walking across the room!” Needless to say, that purple button got pushed a whole bunch! I mailed in the monitor, and again we waited.
A week or so later, we FINALLY had a diagnosis! Inappropriate sinus tachycardia, she said. “Huh?” was my reply. IST is a rare heart condition in which the sinus node in my heart causes my heart to beat much faster than it is supposed to. My Holter readings showed that my heart rate was 160 walking across the room! I asked her what it would be for most people and it is around 70. Wowsers! Big difference. Dr. von der Lohe also told me that diagnosing IST was the easy part, treating it would be the hard part. At the time, I didn’t believe her because it seemed awfully hard to get a diagnosis (she was the 10th doctor I saw, mind you). Boy, was I wrong! It is now the end of August 2009, and we are still trying to find a way to treat this thing. I am still at home, waiting to get better. And here is where our blog begins...
I could write an entire book about my experiences over the last 6 months, but I will try to shorten it as best as I can:
At the end of February 2009, I started having trouble breathing at school and was absolutely exhausted. I was fortunate enough to have a great student teacher, Roberta, whom I relied upon heavily. I went to a doctor in my family practice, who diagnosed me with bronchitis and an upper respiratory infection. After two rounds of antibiotics and several days at home, I went in to the Saturday clinic at the same practice. He did an EKG, which came back normal, and a breathing treatment, which made my symptoms worse. He then decided to admit me to the hospital.
My time in the hospital was less than ideal, to say the least. Scott was in school full-time and also in charge of shuttling our kids to school and pre-school, plus trying to visit me at the hospital (the one the doctor made me go to was about a half-hour away from our house). None of the doctors there knew what was wrong with me. I would see a cardiologist who would declare there was nothing wrong with my heart, so they’d send in a pulmonologist who would say my lungs were fine. Then we’d repeat the process. On the fifth day, a new cardiologist came in, spent two minutes with me and decided it was anxiety and I was having a month long panic attack. He prescribed a beta-blocker, prednisone for my lungs and an anti-anxiety pill. No follow-up needed with him, just go see your regular doctor in a month. Ugh! How frustrating! I knew this was more than anxiety, but I was ready to be done with that hospital and they way they dealt with me. I called the Heart Center and made an appointment with Dr. Rich the following Monday. He spent a lot of time with me during my appointment and really tried to analyze the situation. Unfortunately, he was also unable to diagnose me, but I appreciated his honesty in the situation (instead of just making something up!). He and my GP decided it was time to go to the IU Medical Center in Indianapolis, and they made an appointment for me to see a pulmologist, Dr. Sheski, on my 30th birthday, April 14. Needless to say, I left the office in tears. For the last year, I’ve been so excited about turning 30. I couldn’t wait! Most of my friends were dreading this milestone, but I was so thrilled at all that would come in this new decade! I was also disappointed to wait so long to see the new doctor. Three weeks is not unusual to see a specialist, but keep in mind that I could barely function. Most days, I couldn’t even go down the stairs because I had absolutely no energy and it was all I could do to breathe. Some days it was so bad, I couldn’t go to sleep because I was afraid my body wouldn’t breathe on its own. In fact, I can remember a couple of nights where I just knew that was the end for me. I was so certain my body would not continue to breathe on its own that I was actually surprised when I woke up in the morning. Those nights truly were the scariest times I’ve experienced so far. I mean, I know I will be going to heaven when I die, but when you really aren’t sure if you are going to be alive in the morning, you start thinking of all the things you’d miss if you didn’t: Katie going to prom, Ryan playing sports in high school, high school and college graduations, seeing my little girl’s wedding, watching Ryan find the love of his life, grandkids, growing old with my sweet husband, etc. Like I said, those were some rough, tear-filled nights.
Fortunately, God heard my cries and had mercy: Dr. Sheski decided to squeeze me in between appointments. It was spring break for my mom, so she and I headed to Indy the next day, laden with books, IPods and snacks (we were told to expect a long wait, since I didn’t have an official appointment). Mom wheeled me around the hospital, since I couldn’t walk that far, and eventually we found his office. Imagine our surprise when we saw Dr. Sheski in less than 10 minutes! He examined me, took my papers from the hospital and told me he would call me after he’d had a chance to read over everything and make a plan. The next week, his nurse called and said he ordered an exercise bike test that would check my heart and lungs both, as well as an asthma test.
On April 13, Scott and I headed back to Indy for the tests. First up was the asthma test, which I passed with flying colors. Next came the exercise bike test. Oh, my! I had about a dozen wires stuck under my shirt which connected to five or six different machines and two computers! It was so funny looking, that I had Scott take a picture of me. Hey, the Bible tells us to rejoice at all times, so we might as well have a little fun with the situation, right? They wanted me to ride the bike in two-minute intervals, with the resistance getting harder each time. The goal was to go as long as you possibly could. I was only able to make it 8 minutes (sad, considering I was up to 4 miles on the elliptical before all of this began!)
A few days later, Dr. Sheski personally called to give me the results (never a good sign). I will never forget that moment, as he told me, “Karin, your lungs look good, but there is something wrong with your heart. I don’t know what it is, but something’s wrong with it. Your heart rate went much much higher than it should. You need to see a really good cardiologist.” Yikes! He told me I could either find one at home, or he could recommend one in Indy. Since I’d already had three cardiologists from home tell me my heart was fine, I opted to go with one he knew.
At the end of April, Dr. Elisabeth von der Lohe “happened” to have a cancellation, hooray! I went to see her at the Krannert Institute of Cardiology. She did an EKG and lipid profile, and told me we could either do a 48-hour Holter test or a cardiac catheterization first. We opted for the Holter test, since probing my heart is about the last thing on my “fun things to do” list. So her nurse stuck electrodes on me and told me to do as much as I could to replicate the symptoms. Any time I had symptoms, push the purple button. I remember thinking to myself, “No problem, I have trouble breathing just walking across the room!” Needless to say, that purple button got pushed a whole bunch! I mailed in the monitor, and again we waited.
A week or so later, we FINALLY had a diagnosis! Inappropriate sinus tachycardia, she said. “Huh?” was my reply. IST is a rare heart condition in which the sinus node in my heart causes my heart to beat much faster than it is supposed to. My Holter readings showed that my heart rate was 160 walking across the room! I asked her what it would be for most people and it is around 70. Wowsers! Big difference. Dr. von der Lohe also told me that diagnosing IST was the easy part, treating it would be the hard part. At the time, I didn’t believe her because it seemed awfully hard to get a diagnosis (she was the 10th doctor I saw, mind you). Boy, was I wrong! It is now the end of August 2009, and we are still trying to find a way to treat this thing. I am still at home, waiting to get better. And here is where our blog begins...
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