Moving Right Along...another check-in!
Life on life‘s terms. Well, the preceding sentence appropriately describes the current situation. You’ll notice I didn’t say “my” situation but “the” situation. That’s because I ain’t claiming it, however, I am working through it. This is one of my go-to solutions for dealing with situations these days rather than getting loaded. The situation or situations revolve around living with Cardiac Amyloidosis. I continue to search and adjust to living a new normal which includes taking medication for congestive heart failure, medication to suppress cardiac amyloid build up, learning to live with medication side effects and disease symptoms. The symptoms remain unpredictable and the side effects maintain their unwanted predictability. The symptoms include occasional/intense full body and joint pain (every joint imaginable), fluid retention in my abdomen, bilateral hand and wrist pain with numbness and tingling, dizziness with fainting, blurred vision, bilateral foot numbness, poor standing balance, shortness of breath, pounding in my chest, chest pain, fatigue and difficulty swallowing. Granted, a few of the symptoms may be residual effects of the TIA that Cleveland Clinic offered me without my request. The symptoms pop in and out at will so that everyday is a new adventure. I just realized that my previous description of symptoms sounds more like the assessment part of a progress note I would have written for a patient when I was working as a Licensed Physical Therapist Assistant. The medication side effects overlap some of the symptoms. Dizziness, tiredness, orthostatic hypotension, plus urinating every 20 minutes. I obviously have to time my outings outside of home. I try not to be out and about that much anyway. I always mask when out and that restricts my already labored breathing. I don’t go into any place of business without it though! More and more I have to stand for a bit before walking to prevent myself from passing out. I’ve almost fainted in a few parking lots already. One of the reasons is due to the drastic irregularity of my heart beating. Which brings me to the most recent update.
About a month ago I was prescribed to wear a 14 day halter monitor. It was enabled to detect inconsistency in heart rhythm. At the end of 14 days I mailed it in to be read and interpreted. I made an appointment to see a Cardiologist I had never seen before. He told me that my halter reported that it had ended transmission early. It had only registered for 10 hours out of 14 days. As a result, he told me that there were a few discrepancies but nothing major to worry about. Two weeks later I saw my original Electrophysiologist and we discussed the results of the halter monitor again. He said that within the 10 hour period it had been working it detected 12 episodes of ventricular tachycardia. He stated that if this action sustained itself it could lead to heart attack or sudden death. He told me that he suggests his patients receive an implantable defibrillator with just one occurrence of ventricular tachycardia! I then spoke with my Amyloid Cardiologist. He said he would meet with the aforementioned Dr.’s and give me an answer. I saw him on a Wednesday and got an answer six days later. Today is August 10, 2020. I am scheduled to receive an implantable ICD on August 21, 2020. They wanted to do it on the 17th but I was too freaked out..lol! An ICD is basically like a built-in set of jumper cables. If my heart goes into a dangerous pattern of tachycardia the ICD sends an electric jolt to shock my heart back into a safe rhythm. It sends minor shocks when it detects any other abnormal beat as well. Honestly, I don’t want any man made box in my chest that may interfere with my heart chakra. I also want to stick around a little bit longer for some personal reasons. People keep telling me my purpose on earth has not completed yet. If nothing else, I hope to show someone what it’s like to go through this crap somewhat surrendered, at peace and without picking up a drink or a drug. I‘m blessed to have friends and family making sure that I’m eating healthy food, I’m loved and for the time being I can still play music. Am I grateful? Yes, extremely!! One final thought. Please Be Kind. Even when others are not. They may not have the ability to be kind but we do. ☮️ ❤️🙏🏽❤️