Quick Update

Just a quick note to report a few things:

* I went into the ER Sunday morning again for Afib and was cardioverted (shocked) out of it again. Since this seems to be turning into a chronic thing, Dr. Link, my electrophysiologist at Tufts that I started seeing two weeks ago, started me on an anti-arrhythmic med called Amioderone. I'm taking a huge dose of it this week to get it built up in my system, then I'll take 1/6th of that next week and from now on. It initially caused some blood pressure problems, but we have that sorted out now.

*This Afib is certainly a symptom of my HCM/heart failure, but even without HCM, many people struggle with Afib and take medications for it. In the case of HCM patients ("hypertrophs"), Amioderone is really the only drug option. Afib is extremely hard to tolerate because of our limited oxygen reserves. It feels like having the wind knocked out of you and causes weakness and nausea. Hypertrophs have to be cardioverted out of it pretty quickly, not because it's necessarily dangerous, but because it's extremely uncomfortable. It's something that most hypertrophs deal with their whole lives, but is new for me, and to be expected because of my deteriorated heart muscle.

*Eventually, the Amioderone will not be able to control the Afib. At that point most hypertrophs either have an ablation procedure to "burn away" the area of the heart muscle where the Atrial Fibriliation originates. Some have pacemakers or other IDE devices implanted to help the heart stay in a steady sinus rhythm. These have never been options for me to help with the HCM, but if the Afib persists or comes back, that may be a solution as well. Obviously if I have a heart transplant before I reach that point, it's a non-issue.

*I cannot say enough good things about Tufts Cardiology department. I am working with three different doctors and a transplant coordinator to deal with these issues that come up, as well as the upcoming evaluation for transplant. I will meet with the transplant doctor to discuss testing on February 23rd. This team is part of a huge hospital staff, yet I am amazed at how well they communicate with one another. They always know what's going on, even if it isn't their department or job - I hardly ever tell them anything they don't already know from conferring with one another. That is a huge relief, and it gives us a great sense of security to know they are so diligent to keep up with even small changes (like the Afib). Details matter, and they really, really get that.

*Despite getting off to a rough start, I'm still very mobile and productive. I'm doing schoolwork with the boys, cooking, and even took them to a homeschool group field trip today. It's not too cold here yet, so I'm also able to go outside with them pretty often to let them sled or work on their igloo. I'm really tired sometimes, but otherwise I don't think my HCM has changed much since last year. My water weight/edema is the lowest it's been since this time last year. I'm eating well, sleeping pretty well, and generally enjoying life.  We have a long road ahead, but being nearer to my doctors has taken so much stress off of us, I don't even know how to express it. The support of family and friends is very uplifting, and I appreciate everyone's thoughts, prayers, and various expressions of concern. For those of you trying to inflict me with voodoo curses, I say again, voodoo is FAKE (you know who you are).

Thanks for reading.