My Adrenal Vein Sampling Experience

I recently underwent my Adrenal Vein Sampling and was grateful, in the run-up to that experience, to find a first-hand patient's account written by hyper-aldosteronism blogger Flower Spy at [link: Flower Spy's Adrenal Vein Sampling].  There is precious little written on the web about this test from the patient's perspective and Flower Spy's account was very helpful in setting my expectations.

Flower Spy's experience sounds most unpleasant and I was happily surprised at the significant differences in my own personal experience.  The general steps in preparation, procedure, and follow-up were similar for me but the subjective elements were far more positive in my case.  Our procedures were only a couple of years apart (and hundreds of miles distant) but show several differences in operational decisions.

Adrenal vein sampling is becoming more routine in metropolitan American hospitals but it is still an unusually demanding test that requires significant procedure-specific experience from the radiologist who performs it.  There is always an elevated risk compared to more routine intravenous procedures.  If the catheter is not manipulated with utmost caution and finesse, or if too much contrast agent is injected or it is injected too quickly or it is injected too close to healthy adrenal tissue, or if the blood samples are drawn too quickly, a vein may rupture or an adrenal gland itself may be irrecoverably damaged.  The normal result of such an accident is emergency surgery and the loss of the affected adrenal -- which may or may not be the gland that was defective to begin with.  Even worse is when the damage is not noticed during the procedure but emerges only after the patient has been sent home.

But both Flower Spy's test and my own test avoided such emergent outcome.  And so it strikes me as helpful to place the two experiences side by side -- as bookends, so to speak, on potential experiences.  If the test concludes safely, one can expect the experience to be at worst like Flower Spy's or at best like my own.

My meds and status before the test

A week before my AVS, I was taking 200 mg of the aldosterone blocker eplerenone daily (split morning/evening), 25 mg of the simple diuretic HCTZ (morning) and 4-8 mg of the alpha blocker doxazosin (evening).  That had been my standard and stable regimen for several months and it prevented the most overt symptoms of hyperaldosteronism.  With very few exceptions, my BP stayed in the range of 130's-140's over 80's-90's.  Often it was lower if I was exercising, working outdoors, or otherwise exerting myself.  I did see occasional 150's and even a rare reading in the 160's.  We had not aimed for a lower baseline because of the history of wide swings in my blood pressure.  Several doctors in the past had medicated me too aggressively, causing me to faint and incur acute kidney damage, from which I have slowly been recovering.

The eplerenone has been a huge improvement over spironolactone but expensive. I was able to make the switch from spiro at 1:1 compared to my previous 200 mg daily of that drug.  I probably need 300-400 mg of eplerenone daily based on the years I was on spiro -- in the aldosteronism community it is a given that 200 mg eplerenone = 100 mg spironolactone.  The switch from spironolactone to eplerenone gave me increased energy, improved kidney function, and gradual remission of the breast pain, breast growth, and suppressed libido that males typically experience from such doses of spironolactone.  At the time of switching, we added the diuretic because spironolactone is both a hormone blocker and a diuretic, while eplerenone lacks the direct diuretic effect.  That was apparent in my response to the new drug.  And although doxazosin is generally considered inferior to diuretics for treating garden-variety hypertension, we found that it was beneficial to me in a couple of ways: first, it prevented my BP from rising too much when I was on my feet; and second, it counteracted some of the residual irritable-bladder symptomatology resulting from the hormonal and mineral imbalance.  So the baseline BP management was the eplerenone plus HCTZ, and we used the doxazosin for fine tuning postural effects and maintaining bladder comfort.  In the past I have had brief experiments with beta blockers, but they prevent suppressed renin levels from rising toward normal as they ought to do with an aldosterone blocker like eplerenone; and by that and possibly other mechanisms, they increase the irritable bladder so common with hyperaldosteronism.

Preparing for the test

My endocrinologist ordered new labs about two weeks before my adrenal vein sampling.  He called a week before the procedure and told me the kidney function looked good, the renin was coming back up (a good sign), and the aldosterone was five times normal.  He advised me to do the following:  For 3 days before the procedure, eliminate the HCTZ.  For 2 days before the procedure, halve the dosage of eplerenone.  He was fine-tuning my hormone levels to get the best possible values for comparison of one adrenal to the other and to blood from elsewhere in the body.

Some doctors require that AVS be conducted in the absence of any medications that suppress aldosterone.  In a case like mine, that is simply an unreasonable or even impossible demand.  Nobody has ever been successful at stabilizing my blood pressure without an aldosterone blocker.  Each time I've gone from being off an aldosterone blocker to taking one, there has been a dramatic fall in my blood pressure in under 12 hours.  On the most recent occasion, it went from 180 to 100 in about 6 hours, much of that in the course of an even shorter time.  Sustaining such results requires increasing the dosage, but the response unambiguously demonstrates that aldosterone is the key to my hypertension.  The primary point of adrenal vein sampling is to find or to rule out a difference between one gland and the other.  The absolute amounts of aldosterone secreted are not nearly as important as the difference in secretion between the two adrenal glands.

Test day dawns

I had been instructed to appear at Atlanta's XXXXXXX Hospital Admissions at 5:30 AM in preparation for the test and that I would probably go home by mid-afternoon.  This required my wife and me to rise at 4 AM, so at 7 PM the night before, I ate a good meal with plenty of water and took part of a Benadryl.  I was in bed by 8 PM.

The morning of the procedure, I made a point of not waking up too much.  I would normally have one of my two daily diet sodas upon rising, but of course I was on a total fast and did not do so.  That helped me to stay somewhat less than fully roused, as did the fact that our normal sleeping hours are 12-8, 1-9, or 2-10.

We walked into XXXXXXXX admissions at 5:29 and filled out some minimal paperwork.  About half an hour later we were escorted to my room in the Clinical Support Unit and I changed into a hospital gown.

Four or five vials of blood were drawn for last-minute labs.  At that point I lay down, put a towel over my eyes, and went back to sleep.  I believe my wife dozed in her chair as well.  At some point in the next hour, a nurse made three (or was it four) attempts to get an IV line inserted.  Honestly, this was the most unpleasant part of the entire day for me, but it was still small potatoes.  I was dehydrated and the people who do these things often have trouble doing it to me.  I'm not particularly sensitive about sticks, especially after all the ones I've gone through this year and considering that I wasn't fully awake.  So the nurse put in a call for an IV specialist and I went back to my half-sleep.  A while later the specialist came, inserted the line, and started a Ringer's drip.  Again I went back to half-sleep.

No urinary catheter

In significant contrast to the group that did Flower Spy's sampling, the radiology group at XXXXXXX does not normally order a urinary catheter during adrenal vein sampling.  I had verified this ahead of time and was certainly grateful to be spared the unnecessary discomfort and potential trauma.  Those who routinely insert catheters may consider that word to be hyperbolic, but I know of specific people who describe their urinary catheterization at this specific hospital as traumatic.  It just goes to show how out-of-touch with the patient experience some healthcare professionals can become over time.  I'm happy to report, however, that no aspect of this entire day was anything close to traumatic.  Indeed nothing felt any worse than a routine blood test.

ACTH or Cosyntropin

At about 9:30 AM, I believe I received a quick briefing from a Physician's Assistant.  She said they'd be coming for me around 11.  I was surprised to notice she didn't really understand the procedure I was going to have and mis-described it, but I just nodded and thanked her before going back to sleep.

That was around the time when someone started a drip of Cosyntropin, a synthetic analogue of Adrenal Corticotropic Hormone (ACTH).  This is another controversial aspect of adrenal vein sampling as performed in the US.  My endocrinologist had mentioned the team would be following the "Mayo protocol".  I have read elsewhere from some of the most experienced AVS specialists -- more experienced than the Mayo's specialists, it appears -- that using ACTH to stimulate adrenal output does (in those specialists' experience) more to hinder than to help in securing good and easily comparable measurements.  By boosting output from both adrenals, it can reduce a gap in secretion to fractional insignificance.  Thus (according to this interpretation) ACTH is more likely to lead to a false conclusion that there is INsignificant difference between the two adrenals' output when there IS in fact a significant difference reflecting an aldosterone-producing adenoma.  The validity of this quibble obviously depends on whether the effect of ACTH analogues is additive or multiplicative on each gland's adrenal output.  For the anti-ACTH specialists, the conclusion arises from empirical experience.  But these are the battles that specialists wage.  I can't really form an opinion on that.

Let's roll

By 10:50, when the radiology nurse came to fetch my bed, I was quite wakeful.  It wasn't that I was particularly apprehensive about the procedure.  I was probably less apprehensive than in some of the days of earlier anticipation.  My endocrinologist had diligently researched the available radiologists and chosen the one who was most experienced with this procedure.  But the synthetic ACTH was having its effect.  My adrenals were actively secreting wake-up cortisol.  It wasn't an unpleasant feeling.  I'd rather have been drowsy but I was still uncaffeinated and mellow.  I was simply awake, a feeling that on some mornings is difficult to achieve by more natural means.

The nurse told my wife I'd be gone at most an hour and my wife said she'd go have brunch in the meantime.

In the radiology room, everything was low-key.  I should have anticipated that these days, everything would be digital.  After all, even my dentist takes digital X-rays.  The suspended 4x3 or 5x3 array of high-resolution digital monitors was vaguely reassuring in its own way because I knew that the doses of radiation required are an order of magnitude lower with digital fluoroscopy.

There was a whole lotta preparation goin' on, people off in their little corners fussing like raccoons over unseen objects in their hands.  The radio or CD or MP3 player played an isolated movement of a Mozart piano concerto, followed by a movement of Carmina Burana, followed by the alla turca movement of a well-known Mozart piano sonata.  Then came some country classic.

Dr Who?

And then came Dr XXXXXXXX to introduce himself.  I was quite surprised to see a different doctor from the one my endocrinologist had painstakingly researched and selected.  Dr. XXXXXXX looked a little crestfallen when I asked about the other doctor.  Indeed he appeared surprised that I even knew about the other doctor and he was probably reacting to a crestfallen look of my own.  But he assured me that that "all of us do it"  -- that is, he was experienced because all the radiologists in the department do this procedure routinely.  I briefly weighed the risk of a potentially less experienced adrenal vein sampler than I had expected versus starting over on a different day.  After all, if the Other Doctor was the most experienced with the procedure, wasn't everyone else less experienced?  And didn't all the experts I had read say that experience was the most important variable?  But I concluded I didn't really have the knowledge to make an informed choice and I decided to leave myself in the hands of the system.  Subsequently I have not regretted that decision in any respect.  [UPDATE: Well, see my later articles...]

I asked if I'd be on Versed and Fentanyl and he said yes, certainly the Versed and maybe some Fentanyl.  I asked if I'd be nauseated later and he asked if I'd had such a reaction to Fentanyl in the past.  I said no, that I've heard of other people vomiting after it, and he said some people do but many don't.  I reminded him that at least my surface vasculature is exceptionally narrow and thus I was concerned he take extra caution with my potentially narrower-than-usual adrenal vasculature --something my endocrinologist had already discussed with the Other Doctor.  Dr. XXXXXXXXX said everything would be OK.

One of the nurses came and used something a lot like my home beard trimmer to quickly buzz maybe a 3x3 area in the corner of the bikini triangle.  I hadn't realized (but was oddly relieved) that the puncture would be on what I would call the torso.  It was easier to understand how they could access the femoral vein, which seems to be a deep vein at most points.  He said the next part would feel cold and wet and he spread a pungent alcohol gel all around the shaved area.  (No Betadine for me on that day.)  I was reassured that they were concerned to mitigate or at least forewarn about even such minor elements of discomfort.  If there was going to be something later that really hurt, then surely they would do right by me.  At some point, he spread the taped-on surgical drape.

The calm before the procedure

Then I lay there for quite a while as preparations continued elsewhere.  I pondered the unknowables -- calmly, I think.  In 45 minutes I might be all done and back in my CSU room or I might be undergoing emergency surgery.  There was that large a difference in the potential outcomes yet nothing to differentiate these preceding moments between one outcome or the other.

Are we getting started yet?

Whether by design or otherwise, the activity in the room continued to feel low-key.  At some point the first nurse I had met started the Versed.  I don't think she told me but I asked.  I could just barely detect a change in consciousness and reported the beginning of loopiness.  At least at that point, the dose must have been smaller than I've had for a few past procedures.

As in the past, I have a few vague point-in-time memories.  I remember when they said they'd be numbing up my groin for the puncture but I have no memory of any sticks occurring in that room.  At some time they used ultrasound to locate the exact spot to enter the femoral vein, but I've lost that specific memory.  I know that I talked to them some during the procedure.  Even before receiving the Versed, I was continuing my strategy of floating through the day unengaged and semi-aware, which I had suspended only long enough to express to the doctor my preconsidered reminders about narrow veins and my previously anomalous reactions to certain antihypertensive meds they'd be likely to use if my blood pressure became unstable.

When they were about halfway through the main event, I asked "Are we going to get started soon?" -- or so the nurse later recounted to my wife.  I don't remember losing or regaining awareness of time.  I know that I was conscious but there's no record in my brain of those minutes.  That's the whole point of Versed, after all.  You're there, you're lucid, but you just can't file anything for future reference.

At this point some days later, I remember that an hour after the procedure, I could recall more details than I can recall now.  Yet already then, there was perceptible loss of time.

They say they had trouble accessing the right adrenal vein.  Well, yeah.  It's like the guys talking on Monday about yesterday's football game:  it's always a new game and yet always the same game, isn't it?

Phew!

They wheeled me back into my room around 12:40 PM.  My wife's first indication of my approach was when she heard me talking to the nurse as my bed came rolling down the hallway.  The procedure was all done, everything had turned out well.  From the little detail we were told, it sounds like a textbook procedure, right down to the tedium of cozying up to that right adrenal vein.

Like nearly everything related to my battle with this condition and the mild cerebral hemorrhage it caused some months back, this was all much harder for my wife.  As much as she has supported me, I've always realized that the strain was greater on her and have tried to support her just as much back.  Hardest of anything for either of us was this hour-and-a-half for her.  She didn't start worrying until I was overdue to return.  She said she was literally pacing the room during those last minutes, even as her rational mind told her there were all sorts of benign explanations and that they were the most probable ones.  But once it was over, it was over.  We were both relieved and happy, thrilled even, to have it behind us.

First I took my full morning dose of eplerenone and HCTZ, then I lay the prescribed two hours in bed, munching down ice chips without the slightest hint of nausea.  Had I even gotten any Fentanyl?  I forgot to ask.  The main point of the two hours of horizontal bed rest was to let the puncture wound close up.  When a different Physician's Assistant came to check on me, I asked if I would be feeling pain later, because I wasn't feeling any at the moment.  She said that I might but that any analgesic I had received was already out of my system.  She reiterated my discharge instructions: not to drive for the rest of the day, to stay mostly in bed, not to lift more than 15 pounds for two days, etc.  These were simple instructions, of course, but to me she felt somehow very much on-the-ball, a welcome contrast to the earlier PA.  Maybe someday she will be an MD and a good one.

My wife drove me home and I have continued to lose some memories of the rest of that day.

Of this I am certain: at no point after getting the IV inserted do I have any recollection of pain.  I left the bandage in place for more than two days before rolling an edge of the super-thin film enough to be able to grab it and peel it away.  I've had ordinary band-aids that hurt more than removing this adhesive surgical film.  Of course people vary widely in the sensitivity of their skin, just as in their ability to recognize or discriminate musical pitch or shades of color.  And anyway, one of the effects I've experienced from blockade of aldosterone is a significant reduction -- probably a normalization to what average people experience -- of sensitivity to physical pain. The days seem to be gone when a hard bump on the shin or a metal splinter would send chills racing circles up and down my spine and around my extremities. Where the puncture took place there remains, three days later, a 1/8-inch pink dot but it doesn't seem to have a scab or to be at risk of opening.

 I was really surprised to discover that the area was not bruised or swollen.  Indeed the only bruises I have are at the unsuccessful IV-insertion points.  Even the point that was ultimately used for my successful IV is nearly undetectable.  And as I mentioned above, the unsuccessful insertions are nothing new.  If I had been more awake, I probably would have advised the nurse to call the specialist without even trying to insert it herself.

The outcome

It'll still be another week or two before I know the results.  There are three possibilities: insufficient sample quality, one adrenal over-secreting, or both adrenals over-secreting.  (There might be some gray areas between those alternatives.)  Once we know, it will be time for more decisions.  While I don't look forward to surgery, I'll certainly do it if I'm a candidate.  I don't like thinking of several more days in the hospital, the post-op pain, the initial struggle to restabilize my blood pressure, the months-long adjustment period for one adrenal to pick up the slack, the potential fatigue and depression, etc.  But in some ways it was the adrenal vein sampling that I dreaded more, simply because it is less routine.  Going into the procedure, I felt that the likelihood of error/accident was higher for the sampling than it would be for something as routine as surgery.  Perhaps that's a naive misperception, I don't know.  But I'm glad the whole sampling procedure is safely behind me.

I hope that anyone who is considering adrenal vein sampling is encouraged by my account.  Your own might be just as easy.  Then again it might not, but I do believe that as long as it is performed with sufficient care and without accident, it will lie somewhere on the continuum between Flower Spy's endurable experience and my pain-free experience.  It is also helpful to know of differences in different radiology groups' standard practice.  For instance, if urinary catheterization or going off aldosterone-blocking medication is an issue, there would seem to be room for negotiation or for selection between different groups with different operational procedures.  Often such details are not absolutes, though they may sometimes be presented as such.

Best of luck!