This dispatch comes to you from the skies somewhere between Boston and Tampa. I’m still amazed we can be online from planes and usually prefer to read, but who am I to sit on largely good news? So here it is.
We flew up to Boston on Wednesday for an appointment with Dr. Desai on Thursday afternoon. Not that I expected to, but wow…I really don’t tolerate cold weather well now. Sans regular heart-power moving the blood around, it really is mighty uncomfortable. But enough bitching about that.
To recap, my ejection fraction back in October was 15%. Or more accurately, it was 10-15%. Dr. Desai explained that even though patients are often given just one number, the range is accurate, because the echocardiogram is “a two-dimensional image of a football-shaped object.”
Now, it is 20-25%. That it has increased is great news. Certainly much better than the alternative. It’s still dangerously low (normal EF is 60-70), but I’ll take improvement over not any day. Dr. Desai explained that unless it gets to 35 (so basically, half of normal), I should seriously consider an implanted defribillator. He doesn’t think it will improve much more, but I’d like to give it a shot, so we’re putting off the defribillator decision until April.
Given that the only insurance I could get only pays half for anything I have done in states other than Florida, should I end up getting the defribillator, I’ll do so at Tampa General Hospital. We spoke at some length with Dr. Desai about locating and his working in tandem with a doctor there. It’s going to take some research to find the right doc at the center at TGH, but I’m confident we can work it out.
We also talked quite a bit about the pros and cons of the defribillator. The pro is easy: it’s insurance. The chances of my dropping dead suddenly are small but measurable, 2-3%, to be exact.
The cons are more complicated and basically revolve around the discomfort of having electric shocks delivered to your heart when it misfires, which apparently mine does with some degree of regularity. Some people don’t tolerate this well; Dr. Desai said there are recorded cases of people developing PTSD from it. He described it as graphically as someone who hasn’t experienced it could, and I think I’d be OK with it.
So it’s likely going to come down to whether I want to take the (admittedly small) risk. Ever since I was born, if anything could go wrong with my health, it has. So as much as I would prefer not to get the defribillator, I probably will. And I’ll be glad I did when it saves my life.
The discs that I got from the place in St. Petersburg that did my echocardiogram didn’t play correctly on the computers are BWH, so Dr. Desai wasn’t able to give us much more info. What we got was plenty, of course, but I was mega-miffed that the discs seem to have some issue, especially since getting them at all required quite a bit of hoop-jumping. So I have to get on to them on Monday and see about getting that sorted out.
In the spirit of saving the best for last, my favorite moment in this trip was when Dr. Desai looked me straight in the face and said, “you’re not going to need a transplant in the foreseeable future.”
That’s not never (“foreseeable” in this case is more like a year or so), and I understand that things can change, but frankly, I needed some really good news, and this fits the bill.
Dr. Desai does want to increase the dosages of the meds I’m on, and the first up is the carvedilol (Coreg). He’s increased my evening dose, and if I tolerate that ok, he’ll bump up the morning dose in a couple of weeks.
I also promised to continue to be the most compliant patient ever, even when that’s difficult and frustrating. I couldn’t have made that promise without all your support.
Thank you for reading. Thank you for accompanying me on this journey. Thank you for cheering me on and wanting me to be ok, and for helping me get there in very real ways.
Here’s to February being a better month for us all.