One week post-AVS.

I’m not going to lie here – it hasn’t been an easy week. Much like my first AVS, I don’t think I’ve had a particularly bad time of things, but this time around has been a little different. For one thing, I’ve been really, really tired. I mean, stupid ridiculous tired. Ordinarily this damned disease does not have a lot of impact on my day to day life – after hearing the stories of how some people are completely disabled by it, I consider myself one of the lucky ones. I get through the workday just fine and have time left over each day to do the things that are important to me. But this week, not so much. I’ve had everything checked out and nothing is wrong, at least not on paper. There’s no explanation for why I want to do nothing more than sleep, other than “you’ve been through a lot and your body is still recovering.” Okay, fine, I’ll accept that excuse for a couple-three more days. Maybe.

The other thing that’s different this time around is that there’s a bit of bruising at the site on the left where the cannulation was done. Yeah, that left – the one they didn’t quite get right the last time. Plenty of jokes have been made about the bruising being a sign that they got it right this time, and while joking is (in my opinion) the healthy thing to do, I’m a little annoyed. My first day back at yoga did not go nearly as well as the last time – I think I might have felt actual pain a couple of times. And rather than feeling energized afterward, like I usually do, instead all I could do was crash on the sofa. A perfectly good beach afternoon ruined – but I will give myself credit for having the common sense to listen to my body rather than heading up the coast regardless.

So, okay, I’m tired and a bit uncomfortable. Minor complaints. I’m also really really glad I had the chance to repeat the AVS, and – hey how did that happen? – I’m already a week closer to getting some answers. Sleeping a lot may be utterly boring and not what I would like to spend my free time doing, but on the bright side, it certainly makes the time pass quickly.

PA and anxiety.

I get a lot of incoming searches with terms having to do with anxiety: “eplerenone + anxiety,” “aldosterone + anxiety” to name two. While I can’t address the issue of eplerenone, as I have not yet taken it (and hope to not have to), I can definitely share my experience with the misdiagnosis of “anxiety.”

I know that for many, many PA patients, a throwaway diagnosis of “anxiety” and a prescription for an SSRI is often the first mis-step on the long winding road to a true diagnosis. Over at the Yahoo hyperaldo group, this same story is shared time and time again. A number of folks in that group continue, even after diagnosis, to take SSRIs and to believe they have anxiety (or its counterpart, depression) – while I’m sure some truly do, I’m also certain that others probably do not and are likely doing more harm than good to their bodies by ingesting SSRIs, which have been linked to metabolic disturbances. We already have metabolic disturbances; we don’t need drugs that exacerbate them!

~ ~ ~

In the autumn of 1997, I had my first “panic attack.” I was driving home from school one night, on the interchange from the eastbound 10 to the northbound 110 – a hairy traffic situation in the best of circumstances, but one I did almost daily and had been doing without incident for some time. Suddenly I felt like I was going to lose control of the wheel. I could feel my heart pounding, I felt like I couldn’t breathe, my vision got blurry, and I thought I was going to die. I didn’t die; instead I recovered, made it home, and asked my roommate to take me to the ER.

At the ER, I was EKG’d and poked and prodded and asked a bunch of questions that I recall seemed intrusive and irrelevant. I was hooked up to an IV that burned like hell – in retrospect and in all likelihood, my first ever potassium infusion – and given Ativan. I was kept there for hours but given very little information; I only know they kept checking my electrolytes. After one of these checks, I was told I was free to go. I called my roommate for a ride home, went to work, and proceeded to get on with my life as normal. Looking back, it’s pretty clear that this was probably the very first sign of my adrenal gland going haywire.

Several weeks later, a bill came from the hospital for an astronomical amount of money. My then-lousy health insurance company denied payment, as my diagnosis in the ER was “anxiety” and the health plan I had at the time did not cover mental health care.

Not long after that, one night I was enjoying a pleasant evening at home reading when it happened again: the pounding heart, the trouble breathing, the blurry vision. This time I also had chest pain. By this time I had changed jobs and had a health care plan that was a bit more comprehensive, so again I asked a friend to take me to the ER. I’m not sure what the workup involved but the end result was a referral to a psychiatrist and, yes, a diagnosis of “anxiety.”

~ ~ ~

It took a few years, but eventually I figured out that the “anxiety” diagnosis was, in my case, a lot of bunk. I’m not exactly a Type-A personality – granted, in the early years of this wrong diagnosis I was living a pretty hectic life (fulltime job at a Holocaust history archive, part time school) but I was pretty good at making sure I had plenty of decompression time. Looking back, I wish I had had this perspective then, because that initial wrong diagnosis led to many years of wrong medications, and many reasons for my doctors to not really look any closer at what turned out to be a relatively rare condition. After all, writing it off as “anxiety” and prescribing the top-selling drugs in the nation is a much easier, and more profitable, approach. Yeah, I’m a bit bitter. And a bit cynical.

I’m not saying that for PA patients, anxiety doesn’t exist. On the contrary, it does, and can be very real and very frightening. What I am saying, though, is that the problem is in the adrenal gland(s) and not in the brain chemistry, so I would be very, very wary of taking any medical advice that involves drugs that alter said chemistry.

Second verse, same as the first.

Well – it happened. My second AVS took place yesterday and aside from a change of time (6am!) and doctors (the main IR in the practice, rather than her associate), it was pretty much exactly like the first, right down to the potassium crash.

I did find out that I was slightly misinformed (or perhaps just confused) about the sedation used the first time around (and this time as well). Typically the method used is conscious sedation, administered by a nurse rather than an anesthesiologist. I’m not sure what led to this the first time around, but after my files were reviewed before the procedure yesterday I found out that the first time, I was under general anesthesia rather than conscious sedation. All involved decided that it was in my best interest to use this same method again, which led to a last minute scramble to find an anesthesiologist (and led to me being unnecessarily worried that the whole thing would be called off!). The one they found was fabulous – she had one of the best bedside manner of any doctor I’ve ever encountered.

I’ve heard a few stories lately from others who have had AVS done and have had to deal with pain and discomfort during the procedure, and it makes me wonder why it’s not just routine to always use general anesthesia. If I understood correctly, at the hospital where I had it done, they use general in patients who have hiatal hernias (which I was born with) as a rule. For my procedure a combination of propofol, fentanyl, and versed was used. The first time I didn’t experience any side effects at all; this time around I had nausea that lasted for a good 12 hours after the procedure but nothing too terrible.

The only pain I experienced was from the potassium IV – I learned something, do not ever let them put this into the vein in the back of the hand! Only do this through the – whatever the bendy part opposite the elbow is called. It’s still uncomfortable, but tolerable. I’m not a screamer, but when that IV was in my hand I came about as close to screaming as I ever will.

Like the last time, there is no pain or bruising at the cannulation sites.  Getting around is much easier than it was the first time – if it wasn’t for the 48 hour driving restriction, I could probably be out and about today, albeit a bit slowly.

Rather than the six weeks it took last time, my doctors expect to get results back in two weeks or so. Here’s hoping that the second time is a charm!

Or maybe just hurry up.

I’m almost afraid to say anything, but – apparently I *am* scheduled for AVS this coming Friday, 8/19, at the crack of dawn. I’m supposed to get pre-op bloodwork done Monday morning so I *think* this means it’s really happening.

But you know, until I’m getting fitted for my VIP wristband and making bad jokes about whether or not I get a plus-one, I’m not going to believe that it is actually going to take place. Because if there’s one thing that this damned disease has taught me, it’s that expectations are just disappointments waiting to happen.

Hurry up and wait.

For a couple of days there, it looked like my repeat AVS was going to happen on August 19. It’s not, and is now being delayed until “sometime in September” but exactly when remains unknown.

While a part of me just wants to SCREAM at people for how ineptly my whole case has been handled, there’s still a part of me that believes that everything happens for a reason, and that the reason for this is that I want to be good and certain that the spiro is out of my system completely. As of today, I don’t believe it is. I’m still having HELLA estrogen-related side effects. I’ll spare you the details, but let me assure you that it’s not fun.

Which brings me to how I am doing. Quite frankly, not well at all. I know that part of it is what I’ve been put through, part of it is the biochemical disturbance caused by the spiro, and that either one of those things on its own is probably enough to do anybody in, but in combination it’s just too fucking much. The low potassium causes a lot of pain (and a lot of worry about knowing when it’s bad enough to warrant a hospital trip) and the aforementioned side effects are pretty painful too. My head is completely fuzzy all of the time, although I’m happy to report that I haven’t lost anything this week – so far, anyway – so maybe that’s getting better. And then there’s the whole “how long is too long?” question of going through life with a disease that causes uncontrollable hypertension.

There’s not really any point to worrying about what you can’t control. I know this. But I’m convinced that in the last few months this thing has gotten a lot worse – one very real possibility is that the tumor has grown quickly and is producing more aldosterone – but that my medical team is so clueless about it that nobody is acting with any real urgency. I don’t mean this to criticize; I think they are all doing what they think is right to the best of their knowledge. But I’m starting to feel that maybe the best thing to do is to actually go to the NIH under their clinical study and get this thing taken care of.

Trouble is, the only way that could happen is by cashing out my 401K. Don’t think I’m not considering it, because I most certainly am.

Halfway there.

Tomorrow marks my third week off of spironolactone, which means any time after three weeks from tomorrow, I can proceed with the repeat AVS. That would be August 25 – not that anybody is counting 🙂 I don’t have a date set yet, but all insurance hurdles have been cleared and I am making a bit of a pest of myself with the interventional radiologist’s office to ensure that this thing is done SOON.

I have to say that the post-spironolactone weeks have been hell. My doctors don’t believe that there is an actual withdrawal syndrome associated with it, but I’m not so certain. On the physical side, there are the estrogen disruptions that it causes – which for me has meant the worst acne I’ve seen in years, and an exacerbation of my already problematic menstrual issues. Those two things alone could likely be enough to cause psychological issues, but I think there might be more to it: for the past three weeks I’ve just felt like my brain has basically turned to mush. I keep losing things: my car (in a 2-story parking garage), my keys, random articles of clothing that turn up in places that make no sense. A lot of people with PA talk about “brain fog” – I never had this before I took the spiro, at least not that I know of, but going off of the spiro seems to have given me a double dose of it.

And then my potassium crashed last week, causing the usual trapezius muscle spasm but also affecting my entire left side. My doctor was out of town, but I saw him today and he diagnosed piriformis syndrome: essentially the same thing that happens to my upper body when my trapezius goes into spasm, but this time it happened in my lower body too. It’s better now but for about a week it was incredibly painful. I couldn’t walk quickly, I had to use a wall for balance at yoga, and I generally felt like I was about a hundred years old. So my potassium dose was increased yet again, and I really hope that will put an end to the crashes. I think that’s the scariest part about this whole damned illness: it could stop my heart. That, or the possibility that the muscle spasms will cause temporary paralysis. It happens. Hopefully not to me.