O.K., So, here’s the deal..
I’ve had difficulty swallowing certain foods since the Clinic accidentally caused the TIA in March 2020. I‘m not going to blame the Cleveland Clinic entirely because there’s a chance that amyloid build up in my esophagus could also be the cause. We’ll see. Recently, I’ve started to aspirate fluid into my lungs while drinking liquids. I had an esophageal manometry performed on Monday.
“Esophageal manometry is a test that is used to measure the function of the lower esophageal sphincter (the valve that prevents reflux, or backward flow, of gastric acid into the esophagus) and the muscles of the esophagus. This test will tell your doctor if your esophagus is able to move food to your stomach normally.”
They greased up a long tube and inserted through my left nostril until the tube reached my stomach. I was then rolled onto my left side to sip water through a plastic syringe for 30 minutes. The bedside manner of the person administering the test embodied the personality and compassion of a doorknob. Just an observation, no judgement. It was a most uncomfortable situation! I should have the results in a couple of weeks. Meanwhile, no guzzling or gorging! The next day, Tuesday, I returned to the Clinic to be screened for a Phase 3, Randomized, Double-blind, Placebo-controlled Multicenter Study to Evaluate the Efficacy and Safety of Patisiran in Patients with Transthyretin Amyloidosis with Cardiomyopathy (ATTR Amyloidosis with Cardiomyopathy). I was screened for the “Apollo B” research study about a month ago and probably would have been starting the study had I not been admitted to the hospital shortly after testing. That caused a setback. There’s a certain amount of time that had to pass after discharge until I could try to qualify again. So, I’m trying again. 300 people are taking part in the program which is close to being full. Fortunately, they were able to hold my original space in case I returned to qualify. The initial screening and baseline period consists of bloodwork, an Echocardiograhm, EKG, and a six minute walk. I go back in January 2021 for more of the same and then it will be decided if I qualify for the study trial. Some have questioned my willingness to have an experimental drug infused in me every 3 weeks. The answer is “What do I have to lose?”. There is no cure for Cardiac Amyloidosis but they are making advancements in treatment. I figure I’d prefer to chance growing another appendage than continue to experience the progression of symptoms I’m currently having. So, that’s the deal (for now). As always, I appreciate your continued love and support. What a long strange trip it’s been. No need to pick up a drink or a drug and I am extremely grateful for that, and, to experience all of this with eyes wide open!
Love to All,