I don’t know where to begin. It’s been an interesting and rough past several days since we went to the ER at Cleveland Clinic on Wednesday when I had another concerning spike in blood pressure. 220/122, which felt like “birds flying around in my chest,” while I was breathless and could barely walk.
It has been six days since I stopped taking the dangerous drug Flecainide, and the symptoms the drug supposedly covered returned with a vengeance. Since no alternative drug was to be prescribed until after I had the angiogram on Friday and after I was required to stop taking Eliquis, the vital blood thinner to prevent strokes, the ER cardiologist felt I needed to be closely monitored in the hospital until the test was conducted. I was returned to Eliquis and some form of heart rhythm drug that would be safer.
A few days earlier, the electrophysiology cardiologist, Dr Keogh, insisted that l immediately stop taking the drug Flecainide, which can be deadly for heart surgery patients such as me. Below, I will list the discoveries made this past week since my appointments began at the Cleveland Clinic, many shocking to us after all we’ve been through with my health issues over the past few years.
- I do not have severe mitral and tricuspid valve regurgitation, which three cardiologists diagnosed in three different countries after three echocardiograms. Thus, I do not need valve surgery at this time based on the comprehensive echocardiogram I had at the Cleveland Clinic. My valves are moderate, but that could change to severe in months or…if I’m lucky, not at all. Of course, we’re thrilled I don’t need the surgery now. But we’re highly frustrated to have been misdiagnosed by three doctors, resulting in considerable worry and concern. At the same time, we’ve waited for my appointments at Cleveland Clinic since making the appointments last March.
- The drug Flecainide was prescribed without hesitation by the three cardiologists, as mentioned earlier, with no consideration for the fact that this drug is toxic for patients, let alone anyone who had previous CABG surgery (cardiac bypass surgery). This toxicity caused me to be unable to walk and be out of breath from walking a short distance. Why didn’t they know this?
- After the angiogram on Friday, it was discovered that one of my bypassed arteries had failed, and my arteries are too small to add a stent. Instead, when and if I have bad symptoms, I’ll have to have another bypass surgery. Time will tell.
I was started on a new drug on Friday night, Multaq, which also has serious side effects but is safer than Flecainide for my situation. The bad part of this drug is that in the US, the drug costs as follows:
$850 for a 30-day supply
- Multaq 400 mg oral tablet costs around US $850 for a supply of 60 tablets, depending on the pharmacy you visit. Quoted prices are for cash-paying customers and are not valid with insurance plans. The recommended dose is 60 tablets a month, 400 mg., taken with breakfast and again with dinner since it is necessary to take it with food to avoid severe stomach upset.
- Fortunately, I found the drug at PharmStore.com, where I can buy 180 tablets for US $648.99. At this point, I am taking only one tablet a day, cut in half, which the doctors said was fine as long as I take only as much as I need to reduce the side effects and work for me. Currently, I am having harsh side effects, but they should improve in months to come. I’ll be thrilled if I can avoid doubling the dose to prevent more side effects.
4. The doctors (I have four cardiologists) suggested we stay here for the next six to eight weeks while I become accustomed to the drug to control my heart rate, blood pressure, Afib, and PVC symptoms. If it doesn’t work, they’ll have to switch me to an alternative with only a few remaining that I can take. In the past, I’ve already tried five drugs, resulting in intolerable, life-changing side effects. Quality of life is crucial. I am not willing to be sleepy all day or be unable to breathe or walk. Nor do I want to be going to ERs with outrageously high blood pressure, heart rate, and arrhythmias.
It’s a convoluted series of issues, none of which I can avoid over the long haul. But, to be able to avoid surgery and a long recovery right now is a huge relief, and I chose not to worry about what’s to come in the future. We are both excited to return to our world travels in the next few months. We’re contemplating several options, including our next journey to South Africa when it cools down.
Again, thank you for all of your concern and warm wishes. It has meant so much to both of us over these many months and kept me busy on my phone while I was lying in a hospital bed for the past three days and nights.
Be well.
Photo from ten years ago today, September 8, 2014:
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| The Videyjarstofa house, where a restaurant is now located, was built in 1755 and is thus the first construction made of stone and cement in the country. The church was consecrated in 1774 and is still the second oldest one. The island became the seat of the first Icelandic treasurer and later the first Icelandic sub-governor. At the beginning of the 20th century, the country’s first harbor for ocean-going vessels was built on the eastern part of the island, from which a hamlet developed.For more photos, please click here. |