More Hurry Up and Wait…
Posted October 11, 2013on:
It’s been an interesting week. I saw the cardiologist on Wednesday, and we discussed where to go next.
It seems there has been a shift in the field away from doing the surgery I need, which is called a septal myectomy, towards doing alcohol ablations. Unfortunately, while ablation is certainly the less invasive of the two procedures, it won’t allow for dealing with some of the issues that have arisen as side problems, such as the now enlarged heart compressing something affecting my vocal cords and breathing.
My cardiologist is trying to find a surgeon who does the septal myectiomy in enough numbers that he can be confident enough to set up a consult for me. He is not getting the answers he wants at his hospital, so he is going to be taking the next month to look for surgeons in various other places. The downside is that this may mean I need to travel to another city to get the procedure done.
While he does that research, however, I will be reading up more on both procedures, and will also be trying to lose a bit of weight. We are not going for any spectacular drops here – my mobility is pretty limited. However, Medicaid has provided me with a rolling walker (rollator) with a seat, so I should be able to start getting around locally, at least. I am not happy with the idea of trying to get something as wide as I am on and off public transit yet, but I have no problem with walking around the neighborhood with it to get used to it.
The rollator arrived yesterday, and I got the arms and backrest set. I would have taken it out for a spin today, but the weather has been threatening to be very nasty. Also, before I go running around with it, I want to acquire a coupe of short bungee cords, so that when I need to collapse it, it will stay collapsed – something that will be important if I want to go to restaurants, or on busses with it. Still, the rollator will allow me to start getting a bit of mild exercise, which will help with the weight loss.
One reason, we want to try a little weight loss is that I was discussing my experience with weight loss with the cardiologist, and the results that occurred the last time I was able to lose a large portion of my weight. If we can cut out some of the medications that had to be increased when I gained the weight back, maybe we can lower the severity of some of the symptoms. Certainly, whatever weight I do lose will make it easier to get around.
Unfortunately, my sister does not seem to understand that all open heart surgery is not the same. She keeps insisting that if he called a particular hospital near her, they would do the surgery in a few days. I have tried to explain to her that the open heart surgery that is most commonly done, the bypass and or stents, is not the open heart surgery I need to have done, but she keeps insisting that the problem the cardiologist is having is finding a surgeon who will do it while I am on Medicaid. She refuses to get that there has been a shift in what the field considers to be the right way to treat my particular issue.
My cardiologist knows that I have not written off the idea of ablation, but that I agree with him that the septal myectomy would allow for a more complete treatment of the issues at hand, including repair of the malfunctioning heart valve.
Fortunately for me, my sister doesn’t get to make the decision as to what course I will pursue. However well meaning she is, she does not understand that just because a hospital does a lot of open heart surgery, it doesn’t mean they do the particular surgery in the numbers that would make my cardiologist feel confident.
So, for now, I get to sit and wait.