Back from today’s nephrologist visit, with a slight detour from yesterday’s plans.
I spent a somewhat sleepless night pondering the following: if I repeat the AVS and it successfully shows that the RIGHT adrenal, the one WITHOUT the tumor, is bad, but the LEFT adrenal – the one with the tumor – is okay for now, would I really go through with surgery that would leave me with one adrenal gland and a tumor still in my body?
Tough question, isn’t it. I’ve said it before and I’ve said it again – I’ve had a sort of 6th-sense feeling from the start that my disease was bilateral. Even with the not-quite-successful AVS, at present I know that the RIGHT adrenal was very likely successfully cannulated, and that it is bad. I also know that the left has a tumor. And I also know that up to 50% of PA cases are bilateral.
I’m not so sure that I want to go through the AVS procedure again only to be told “Sorry kid, there’s nothing we can do for you but prescribe meds,” when I can be told that, RIGHT HERE, RIGHT NOW, without another set of hospital bills coming my way.
So here’s what I’m doing. I’m taking the meds. I’m doing this in a very systematic way. Today I started on spironolactone, which I have taken once before and I consider it the devil. I know that if I don’t do this and prove that I can’t take it, my insurance company will not pay for eplerenone, the only other medical option. So I’m getting this out of the way first.
Why do I consider it the devil? It has a pretty ugly set of side effects. It affects estrogen reception. For some people, this means it causes breast enlargement, breast pain, and menstrual disturbances. When I took it, I was one of those people, and it was pretty awful, and I fully expect to be one of those people again. But I’m willing to give it a try because you know, I’m older and maybe my body chemistry has changed somehow and it won’t be so bad. Yeah, I know, I’m crazy. What can I say.
Essentially I am proceeding as if I knew, with full certainty, that my disease is bilateral. I don’t know this. But I do know that there is a 50% chance that it is, and I do know that I have a malfunctioning right adrenal gland. Knowing those things, I feel as if doing the AVS over again would just give me false hope once again, and the outcome would be exactly the same: Sorry kid, there’s nothing we can do for you but prescribe meds.
And so my next adventure begins: finding out how awful, really, living with this for the rest of my life is going to be.