Placebo effect

This is day two of wash out. A couple weeks ago I was enrolled in a stage 3 drug test for an experimental drug to help with cardiomyopathy. The first two weeks I was given the actual drug, and then there is two weeks of wash-out which is when I take the placebo. After that the random double blind part of the study begins. Only I am pretty confident in knowing which of the two I will receive.

The effect from the real drug was dramatic. I experienced a 10% reduction in my resting heart rate, my blood pressure stabilized through the day and the one that is most interesting was the improvement on the golf course. From the reduced sense of effort needed to walk to the radically better balance. Gone was the dizziness I experienced every time I bent over to place a ball on the tee or pull it from the cup. The balance changed my results on the tee. The past year, tee shots have been a crap shoot. Short Irons on par threes less so but the driver, fairway woods or rescue clubs were definitely hit and miss, that is hit the ball, miss the fairway.

I managed to get three rounds in while taking the actual drug. The first round was a bit of a challenge given it was a feels like temperature of 110. Regardless, I had balance on the tee box and was actually hitting good tee shots. The next two rounds though really showed the difference though as I was able to swing fully off the tee and hit the ball down the middle. I am playing in a tournament today so we will see how it goes. My expectation is to not be as comfortable again off the tee. Time will tell.

What I can tell you about this is that there is a sense of foreboding that when the actual blind study begins I while receive the placebo. There was a very great sense of hope when taking the actual drug. Hope do to feeling better. Hope that I can survive long enough to receive a transplant. And that the time until then will be that of abilities, not one of lying in a hospital bed tied to tubes and machines.

There is no denial of what the potential future has in store for me. But the hope that the drug provided was welcome to my psyche.

The other aspect of the efficacy of the drug is the wonder it raises as to what I will feel like post transplant. This was a conversation I had the other day with my cardiologist. The primary goal of this process is to be able to extend my own hearts usefulness as long as possible because as the Doctor said, once I receive the transplant the clock really starts ticking. The average expectancy post transplant is 15 years. More often than not, transplant recipients like me are much older and carry on for significant periods. But of course, that’s a concern for down the road.

A quick google search of life expectancy with dilated cardiomyopathy brings up 5 years as the 50% mark of patients. I am in year 19 so far and still have not developed significant symptoms. Occasional water retention and fatigue are the only signs so far. And of course the aforementioned golf issues. Lethargy is one that has become prevalent the past six month, and I guess the Arterial Fibrillation iOS a development due to the issues I have.

I asked about the uniqueness of my symptomology . I am not totally unique but certainly one of very few people who experience what I have in the way I do. Is this due to my physiology or is there something else at play here. This is where I start not knowing but suspecting there are greater forces at play in my life. Be it God or whatever you choose to call it, the possibility that I have outside help beyond our understanding cannot be discounted.

I will simply continue to live this life today, and be grateful for whatever I am able to accomplish. And then try and not fall over later today on the tee box!