It’s been three weeks since my AVS and I still don’t have results back. Can I just say that this waiting thing is a whole heck of a lot harder than the procedure itself was??? I’m a pretty patient person to begin with, but this? Is getting ridiculous.
I might have spoken too soon. My specialist called last night to tell me that he did not have the complete AVS results set in yet, and based on his prior experience it might take another week. He also emphasized that it is impossible to interpret partial results, and what I got from my primary care doc does not show the whole picture.
So, with that in mind, it’s back to waiting for me. Not to say that I’m not formulating a Plan B. If my Plan A was “get that sucker out of me, now!!!” but that ceases to be an option, my Plan B is “try everything else before accepting a lifetime of popping pills as my fate.”
The first of my AVS results came in. I haven’t spoken with my specialist yet, but my GP thinks either they made a mistake, or the results are consistent with bilateral aldosteronism. In other words, the inoperable kind.
I’m hoping to know more tomorrow.
Went to my first yoga class since the AVS last night, and I think it’s safe to say that it’s back to normal life for me. Yesterday marked one week since I had the procedure done, which means the results should be in any day now. And so begins the hardest part: the waiting.
As for any lingering after-effects of the procedure – I am still having low potassium issues, but it’s being monitored carefully and it’s not in the danger zone. And I did have something odd happen that was a little disturbing. At work the other day I noticed an odd feeling in the back of my right leg – hard to describe, a tingling sensation that felt like something to do with a nerve. But since my discharge instructions specified to call if I experience a list of symptom, one of which was tingling – well, of course I called.
After an unpleasant exchange with the UCLA page operator – why is their clerical staff so unpleasant, while everyone else I’ve dealt with at UCLA is so fabulous?? – I was able to reach the on-call interventional radiologist, who asked me if I ever had lower back problems. (Um, never – upper back, yes, but I’ve always been lower-back-pain free.) He assured me that anything to do with the AVS would be in the front of the leg, where the vein is, and that what I was feeling was probably a nerve that got irritated during the hours I spent lying flat on the hard little hospital bed. Or, even more likely, sleeping on my couch.
Of course, there’s also the very likely possibility that it’s yet another annoying effect of low potassium, but for now I’ll blame the couch. A couple more yoga classes should probably fix me up just fine.
I’d say I was a little over-ambitious when I went to work yesterday. Sitting was not the most comfortable thing for me to do – I lasted all of two and a half hours, and then all I wanted to do was lie down. Which I proceeded to do for four hours once I got home. A nurse from UCLA called me to check up on how I was doing, and when I told her I had gone to work she was pretty surprised.
Today was a different story – I was fine sitting at my desk most of the day. Walking is still kinda tricky – I’m not in any pain, at all, until I try to take a normal step or walk at a normal speed, then something just freezes up and doesn’t want to go. Then it stays painful for a while, then I’m fine again. There are no signs of bruising or bleeding, so whatever it is, I doubt it’s any reason to worry.
So all in all – I’d give this procedure a three-day recovery time, rather than the 24 hours that the medical folks will quote. I’m still laying off any activity that puts pressure on the femoral vein area – dear yoga, I miss you but will see you soon! – but I’m not even sure that that is necessary.
The general sentiment at the Yahoo Hyperaldosteronism support board is that one should opt for meds and dietary changes to treat PA, rather than surgery, and that surgery should be done only as a last resort. This is in direct contrast with my medical team’s advice – for me, the consensus was that my symptoms were so clear-cut that I could have skipped the AVS and gone straight to surgery. Due to my age and the length of time that I’ve known I’ve had this condition – at least 15 years, possibly longer – I didn’t think that was wise. But I still want that surgery, if I am qualified for it.
There are a few of us at the Yahoo group who are bucking the general sentiment. I am one of them, and am extremely vocal about it. Another member of the group feels the same, and since she is a bit younger than I am, she is planning to proceed directly to surgery. Here are some of the concerns she brought up in a post today.
- I have found absolutely no evidence that a lifetime of meds and diet control is advantageous over the surgical procedure in my specific situation. However well the meds and diet work in reducing my blood pressure, it’s not addressing the fundamental issue which is that my hormones are way out of whack.
- What else is all that excess aldosterone doing? I get the impression that nobody seems to really know what else these hormones actually do.
- While I can eat healthily at home, I can’t control all my food for the rest of my life – no holidays, no eating out – it just ain’t going to happen.
- Yes, there’s a risk – I could be left with only one adrenal gland that is not working as it should. But the probability of that happening is low. And yes, in a few years I could have high bp again. But then I’d be on drugs for life – which is where I am now. What’s to lose?
I’ve already been on spironolactone, which is the first-line drug of choice in PA. It’s a horrible drug. It has anti-androgenic and pro-estrogenic effects. If you are male, this means, frankly, it will make you grow man-boobs. If, like myself, you are a woman with fibrocystic breast tissue, it means this tissue will grow even more abnormally, causing excruciating pain. And if, like myself, you are a woman of a certain age and are already estrogen-dominant, it means it will further push your sex hormone levels out of whack, resulting in menstrual irregularities.
The other drug that works in PA is eplerenone. It is expensive, and many insurance companies will not cover it. I haven’t tried it yet, and am hoping that I never will need to. I’ve heard from a few people who have taken it with no side effects, but the known side effects do not sound like a walk in the park. Not to mention I have heard considerable anecdotal evidence of it causing depression.
Another drug sometimes prescribed for PA is amiloride, which I’ve been told rarely works well.
Regardless of the drug, my concerns are with the issue of quality of life. Most medical studies – as well as many doctors – rarely address this. Here’s one study that touches on it briefly: both surgery and (again to a possibly lesser degree) spironolactone and/or amiloride treatment are associated with improved quality of life. If surgery = greater quality of life, then hey, let’s try it.
As for dietary measures, eliminating sodium from the diet can help reduce symptoms. While I know this works, I know that it’s not sustainable. Since the beginning of my diagnosis last December, I’ve tried to do this whenever possible. It means I can’t go out to restaurants, ever, since they can’t be trusted to eliminate all added sodium from my foods. It means I have to make everything myself, which is no big deal outside of the social aspects of not eating anybody else’s cooking. And it means that food becomes incredibly, intolerably boring – it’s not that I like salty food, I don’t and never have – but eliminating salt means eliminating most of my favorite cuisines, which use shoyu or fish sauce rather than salt for flavoring. If there was a way to come up with sodium-free Thai or Hawaiian or Japanese that still tasted like the real deal, this would be doable for me.
As for what else all that excess aldosterone is doing – nobody knows, and we are all different. Same goes for the lack of renin. For me, the end result of all of this is poor blood sugar control, the world’s most unpredictable menstrual cycle, way too many headaches, and vision difficulties. Covering all of this up with drugs doesn’t seem wise to me if removing the cause of it in the first place is an option.
And last, as for what’s to lose – my main concern here is the risks of surgery itself. But if my recent AVS experience is any indication of the quality of care I will receive, I’m hardly worried at all.
Today is the first day after the AVS that I didn’t immediately reach for my prescription-strength ibuprofen. This may or may not be a mistake. I’m about to attempt to put in a half-day at work, which also may or may not be a mistake.
Yesterday afternoon I drove the short distance to the shop where I play music weekly. Driving was no big deal; getting in and out of the car, on the other hand, was, as was not finding a nearby parking space once I reached my destination. I parked a block away, and had to walk so slowly that it felt like it took me an hour to walk that block. Once there, I was fine, but after an hour and a half of sitting in a chair I was exhausted and headed home to my couch.
These are minor things. I am still amazed at how easy this recovery has been, especially when compared to others I have read about. I’m not sure if I’m just incredibly resilient, if my medical team is far superior to others, or if the collective good thoughts of those around me are working – or a combination of all three.
Now that (I think) I’m past the point where I need to worry about post-AVS complications – I have had none – I think I can safely say that the hardest part of all of this was the trepidation leading up to the procedure. Between the anti-AVS sentiments of the doctor who moderates the Yahoo Hyperaldosterone support board, my hypertension specialist’s emphasis of the risks of the procedure, and the stories I have heard from others who have had negative experiences, I was probably more terrified of this procedure than of anything I’ve experienced in my life. It wasn’t necessary.
This is not to downplay the risks of the procedure. They are very real, especially when done by those with less experience than the medical team I am working with. But in the end, worrying about all of this doesn’t really benefit anybody – it’s something that needs to be done if surgery is the desired treatment for PA. I’ve known from the start that that is the outcome that I am hoping for. And what I will continue to hope for during this week or so that I will be awaiting the AVS results.
Note to self: hope for, not worry about.