Drugs, one week later.

As of today I’ve been on 12.5 mg spironolactone per day for a week. And… paradoxically, the biggest change seems to be that my blood pressure is higher than ever. Saw the nephrologist this morning and he thinks this is okay. I’m not so sure.

The nephrologist ordered some bloodwork, and based on my potassium, he thinks the spiro is doing it’s thing, but not enough. My potassium came back at 3.9. Considering that he had me cut back the supplements, and I know that missing even one of those can drop me into the low 2’s, I’ll take this as evidence that he’s correct in saying the spiro is working, as it is supposed to normalize potassium nearly immediately.

That’s the good news. The bad news? Starting tomorrow I have to up the dose to 25 mg/day. That was the dose that I was taking long ago, that gave me the terrible side effects. I’m still willing to believe that being 10 years older might make a difference – even without an endocrine disease, I think the hormones of a 46 year old woman are probably quite different than that of a 36 year old. Still, I’m not happy about the higher dose. And I’m a bit worried about the path that I am on in general.

There’s a woman around my age, with nearly identical symptoms, at the Yahoo Hyperaldosteronism support board who has opted for meds instead of surgery, for reasons I can’t recall. While she appears to be doing everything right – taking the drugs, watching the sodium intake, upping the potassium intake – she ended up in the ER last week. Her endocrinologist has “given up” on her and pretty much done the same thing my nephrologist wanted to do – referred her to a specialist away from home.It sounds like she has the resources to deal with this, but like me, is concerned about little things like, oh, you know, losing her job.

This brings up a medical issue that nobody ever talks about, but it seems like it’s not all that uncommon: what happens to those of us who have all of our local experts absolutely stumped? Particularly those of us who do not have bottomless resources and wide-open time for travel? Our healthcare is tied to our job, our job is tied to our ability to be there… But then something like this happens. What next?

It will be interesting to see how this turns out for both of us.

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Because I don’t do denial.

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.

Sorting it out.

I have a plan. Thanks to some wonderful friends, both in real life and in the online support forum space, and liberal amounts of coffee, I think I’ve sorted out what needs to happen.

  • Repeat the AVS at UCLA.
  • If bilateral, end of story: I try the meds. I already know that in that case, that is my only option.
  • If inconclusive again, end of story: I try the meds. I will at least know that I have done my best to get myself treated locally.
  • If I can’t tolerate the meds (but AVS was again inconclusive), I will find a way to get myself to the Mayo Clinic in Rochester, MN.

It’s not all that complicated, really. It’s just a matter of getting the AVS ordered again, and getting the insurance to cover it. My mission today: to get my primary care doctor on board with this plan so that he can fight the fight for me. Because really, I think that should be part of the reason I’m paying him.

Two choices.

My nephrologist called me this afternoon.

The AVS was done incorrectly. Based on the lab values listed for my left adrenal – the one with the tumor – he is convinced that the interventional radiologist was in my hepatic vein, rather than my adrenal vein.

His recommendation? Travel to Mayo Clinic or NIH to have it re-done.

I explained to him that travel was not an option for me, and asked why I can’t just have it re-done at UCLA. His response was that they messed it up the first time, so why would I want that?

Going into it, I knew there was only a 65% success rate on the first try. I was fully prepared to have to do it again, and still am.

The conversation took a turn toward drugs at that point. I’m pretty against the whole idea.

Assuming that the lab didn’t get right and left samples mixed up – not likely, but possible – since my right adrenal put out so much aldo during the test, chances are my left (the one with the tumor) did too and it’s bilateral, which leaves only meds as an option anyway. So he’s advocating that I cut to the chase and be done with it.

But he admitted that it’s possible that the left *could* have a tumor just sitting there, doing nothing, and be perfectly fine.

The only way to find this out is to repeat the AVS.

I need to know, so I’ll be spending my upcoming days fighting for my insurance company to cover that.

Because really, I only have two choices to work with here: accept a lifetime of medication without question, or get the AVS done again locally. That second option is worth fighting for.

Stay tuned.

Iyengar yoga and hypertension.

About 6 weeks ago, I began adding 2 to 3 Iyengar yoga classes to my regular yoga routine. I had heard that Iyengar yoga has been prescribed for hypertension by a leading local hospital, and a teacher at my studio had been highly recommended, so I decided, why not?

The last couple of weeks my BP readings at home have run around 135/90. That is almost – almost! – like not having hypertension at all, depending on who you believe. For years, 140/90 was the standard in this country; some time ago the “experts” dropped this down to 120/80. (I remain skeptical of this revised standard – I strongly believe this was done in order to promote pharmaceutical sales.) My BP readings in doctors’ offices continue to run ridiculously high – 160/100 at times – but since the minute I walk into a doctor’s office, I find myself in fight-or-flight mode, I don’t consider these results valid.

If I didn’t have a tumor growing in my body, I would be seriously reconsidering my intentions of surgery at this point. Regardless of whether or not the surgery happens, I plan to keep up the Iyengar classes.

And for those who need more than anecdotal evidence, an NIH-funded study:

Iyengar Yoga versus Enhanced Usual Care on Blood Pressure in Patients with Prehypertension to Stage I Hypertension: a Randomized Controlled Trial

Aldosterone suppression test – the aftermath.

I thought I’d escaped from the aldosterone suppression test entirely unscathed, but I may have spoken too soon. Still, this is no big deal, but I thought I’d put this out there in the interest of fully documenting everything.

A couple days ago I woke up with a bright red spot in my left eye. Apparently it’s a subconjunctival hemorrhage, likely caused by the elevated blood pressure during last week’s testing. If it doesn’t go away, or if another one shows up in the other eye – well, then I get to worry. For now, it’s “wait and see.”

Perhaps more annoying is the 4 pounds I gained as a result of the sodium ingestion that are just not going away. When you’re as vertically challenged as I am, that’s practically an entire clothing size.

Needless to say, I’m more uncomfortable now that I was during the three days of sodium loading. But hey, it could have been worse, so I can’t complain. At least not too much.

Subconjunctival hemorrhage

AVS – a successful account.

I’ve been reading accounts of AVS over at the Yahoo Hyperaldosteronism message board (member-only, but easy to join). There has been a bit of debate as to whether or not AVS is necessary – lots of talk of skipping it and going straight to surgery. There have also been accounts of people whose PA turned out to be bilateral, something that can only be found via AVS. The following is from one of those people.

I had my AVS done at the University of Michigan by Dr. Cho, an interventional radiologist. Different hospitals have different protocols, some want you to go off all medications before AVS but the UM does not. I was very glad to hear this since I feel very, very bad when not taking spiro. Dr. Cho spoke to me in the pre-op area and told me that he had done over 600 AVS and explained the test to me in detail. He also explained potential complications, including rupture of a vein, infarction of an adrenal gland and adrenal hemorrhage – all which would require admission to the hospital. He was pleasant and answered all my questions in an unhurried manner.

I signed my permit and the nurse started an IV and took my vital signs and a brief history of my problems. When I was taken to the procedure room I was given 1 mg of Versed and 50 mcg of Fentanyl, which made me feel quite mellow. I was not asleep during the procedure but felt no pain. A local anesthetic was injected into my right groin and I felt only slight pressure when the catheter was inserted. I could see the catheter being manipulated on the fluoro screen and it was interesting to watch. They took blood samples from the various areas and had no problem cannulating both of my adrenal veins. After the catheter was removed a tech held pressure on the area for about 10 minutes, then applied a bandaid to the site.

In the recovery area I had to lie flat for one hour and keep my right leg straight, but that did not keep me
from scarfing down a sandwich and juice. My vital signs were monitored for one hour and then I was discharged. I was told that I might have some minor pain in the groin site but Tylenol should take care of it. I had no pain at all and the next day could barely see the insertion site when I removed the bandaid.

My AVS was a piece of cake but I realize others have not been as fortunate. My advice to anyone having an AVS is to ask the radiologist before hand how many AVS he has performed. Then ask him how many were SUCESSFULLY performed and what his complication rate is. Also, get a price first or have very good insurance. These puppies ain’t cheap and the price varies tremendously. One member here got a bill for $27,000 for his AVS.

That’s basically the best I can hope for. Doesn’t sound *too* scary, except for that bit at the end about insurance.