It's been quite a while since I've written anything in these forums. I'm in the end stage HCM now and definitely feeling it. On Monday I go in for my right cath and a slew of other tests, phych evaluation, etc. I don't really know where to begin.
Things really dropped off a cliff three weeks ago when I dropped into some really bad rhythms (v-tach then v-fib - implanted defib needed to shock my heart 9 times before a good rhythm was restored) and took an ambulance ride to a hospital where my lungs filled 3/4 with fluid. I came through that and was placed on Amiodorone. Dr. said that this was one of the most (perhaps the most) powerful anti-arrhythmic drug available (Q1 - is this true? What are people's experiences with Amiodorone?)
A week and a half later I went into another bad rhythm and took another ambulance ride. So, that evening I felt so on edge, like jittery, on the edge of a cliff so to speak, like I could drop into another bad rhythm at any moment (Q2 - has anyone else ever felt like this? Like the slightest movement would send you into a bad rhythm?) The nurse wanted me to walk from my bed in the ER to a gourney to be transported to my inpatient bed. I told her I didn't want to but she persisted and I did so. After taking about 5 steps my heart rate accelerated from 60bpm (paced base rate) to 104bpm. She tried to play it off as "anyone who does activity will raise their heart rate". But I know my heart and it doesn't respond like this normally, especially with all the meds I'm on. That night was pretty rough for me, but I got through it.
A couple days later they did a stress test to see how well my body burnt oxygen. I didn't do very well on this test. And after that we began to talk about getting a transplant. My blood type is AB, which I hear makes me the universal recipient. They said that after the evaluation I would be placed on the transplant list as a Level 2. (Q3 - has anyone on this forum been a level 2 and gotten a transplant? If so, how long did you have to wait? What was your experience like?)
I live in central PA and I am registering with my home hospital, Hershey Medical Center. (Q4 - Has anyone here had a transplant done at this hospital? Who did it? How did it go? Q5 - Do you consider this a good transplant hospital? Q6 - Should I register at multiple locations? Which locations, considering where I live?)
I live in a two story home and every night I make my way upstairs by going one step at a time, resting a lot along the way. Sometimes I get very cold feet and hands and the tips of my fingers, toes, and tongue feel numb. (Q7 - Anyone else experience this?) It's during these times that my heart seems to be more on edge and minimal physical activity accelerates my heart rate quickly, but not into a bad rhythm, because I have learned that if I completely freeze and wait for the moment to pass I can sometimes prevent these rhythms.
I'm sure that I have many more questions, but this is all I can think of right now. If anyone feels like sharing their experiences with me to help give me a better understanding of my situation, I would be greatly thankful.
Aaron
Things really dropped off a cliff three weeks ago when I dropped into some really bad rhythms (v-tach then v-fib - implanted defib needed to shock my heart 9 times before a good rhythm was restored) and took an ambulance ride to a hospital where my lungs filled 3/4 with fluid. I came through that and was placed on Amiodorone. Dr. said that this was one of the most (perhaps the most) powerful anti-arrhythmic drug available (Q1 - is this true? What are people's experiences with Amiodorone?)
A week and a half later I went into another bad rhythm and took another ambulance ride. So, that evening I felt so on edge, like jittery, on the edge of a cliff so to speak, like I could drop into another bad rhythm at any moment (Q2 - has anyone else ever felt like this? Like the slightest movement would send you into a bad rhythm?) The nurse wanted me to walk from my bed in the ER to a gourney to be transported to my inpatient bed. I told her I didn't want to but she persisted and I did so. After taking about 5 steps my heart rate accelerated from 60bpm (paced base rate) to 104bpm. She tried to play it off as "anyone who does activity will raise their heart rate". But I know my heart and it doesn't respond like this normally, especially with all the meds I'm on. That night was pretty rough for me, but I got through it.
A couple days later they did a stress test to see how well my body burnt oxygen. I didn't do very well on this test. And after that we began to talk about getting a transplant. My blood type is AB, which I hear makes me the universal recipient. They said that after the evaluation I would be placed on the transplant list as a Level 2. (Q3 - has anyone on this forum been a level 2 and gotten a transplant? If so, how long did you have to wait? What was your experience like?)
I live in central PA and I am registering with my home hospital, Hershey Medical Center. (Q4 - Has anyone here had a transplant done at this hospital? Who did it? How did it go? Q5 - Do you consider this a good transplant hospital? Q6 - Should I register at multiple locations? Which locations, considering where I live?)
I live in a two story home and every night I make my way upstairs by going one step at a time, resting a lot along the way. Sometimes I get very cold feet and hands and the tips of my fingers, toes, and tongue feel numb. (Q7 - Anyone else experience this?) It's during these times that my heart seems to be more on edge and minimal physical activity accelerates my heart rate quickly, but not into a bad rhythm, because I have learned that if I completely freeze and wait for the moment to pass I can sometimes prevent these rhythms.
I'm sure that I have many more questions, but this is all I can think of right now. If anyone feels like sharing their experiences with me to help give me a better understanding of my situation, I would be greatly thankful.
Aaron
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