It’s been a rare occasion that I didn’t prepare a post unless it was a travel or tour day. When we first started posting, we only posted about three times a week, especially before officially beginning our travels on October 31, 2012. But after the first year passed in a blur of delightful activity, we decided to write daily to stay on top of things, with many events, photos, and stories to share.
This past nine months, after my heart problems escalated in Ecuador in October 2023, we’ve been in the US since December 2023, figuring out our next move and eventually awaiting appointments at Cleveland Clinic, assuming I’d need open heart surgery. Three different cardiologists in three different countries misdiagnosed me with severe valve regurgitation requiring imminent surgery.
Once we arrived at Cleveland Clinic, after many months of waiting for appointments with one of the top valve surgeons in the world, it took no time at all to determine, after a comprehensive echocardiogram and numerous tests, that the problem with my heart wasn’t my valves. My heart’s plumbing (arteries) and electrical system (signals in the heart) have been causing the almost constant irregular heart rhythm.
It’s not a simple fix. I’ve already tried five drugs to control the situation while awaiting a more long-term plan, all of which have caused me unbearable side effects, most of which center around difficulty breathing and inability to walk.
This more recent drug, Multag, which I’ve been on for three weeks and was started while I spent three days in the hospital earlier in the month, has me “down for the count,” so they say. I can barely breathe, off and on, but especially when I move around, I can no longer make the bed, walk the corridors, and have difficulty typing when my arms are weak, and it takes everything I have to type.
This is the worst response I have had from any of the five drugs, and it worsens daily instead of diminishing as many side effects may do over time. It’s even worse than the last drug, Flecainide, which I’d be taking for many months. This drug, Multaq, causes my hands to shake and my arms to be painful and weak, making it challenging to type, cut vegetables, get dressed, let alone walk across the room.
I left a message for the doctor about these symptoms, but he left a message in My Chart to stay on this drug until my appointment tomorrow morning when we come up with an alternate plan. Without any such drug, my blood pressure spikes to a dangerous level, requiring a hospital stay, two of which I’ve had in the past two months.
Excuse me for reiterating this scenario once again. Many of our readers have written to ask for more details on how I’m doing. We greatly appreciate your concerns. However, it made more sense to write the response here rather than reply to each of your many queries individually. Thank you so much for your concern.
How is this impacting our state of mind? Based on the fact these symptoms are drug-induced, we are both very hopeful that tomorrow’s appointment will provide a comprehensive plan to enable us to continue with our lives. Our hotel here is booked until December 2, so we have plenty of time to implement a manageable strategy.
After all, we’ve only been here one month as of today, and we’d anticipated I’d be recovering from surgery for three months. Thus, if we can leave a month or more earlier than initially planned, it will be a bonus.
To sum this up, I didn’t write yesterday due to the above reasons, but I plan to continue to post, especially when I’m on a more manageable drug with fewer side effects.
Please keep in mind that many people are taking this drug without such horrible side effects and experiencing relief from heart rhythm problems. Please see the following, although I couldn’t find any current stats for usage of this drug:
“According to an FDA review, between July 2009 and October 2011, approximately 278,000 patients in the United States received prescriptions for Multaq (dronedarone) from outpatient retail pharmacies.”
That’s it for today, folks.
Be well.
Photo from ten years ago today, September 26, 2014:
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| Tom was happy as a clam on the ship, even in rough seas. For more photos, please click here. |