Rescheduled.

The universe has a really, really sick sense of humor, it seems. Just got a call to reschedule the AVS for next Friday.

You mean I have to live with another week with this torture of apprehension?

Great.

Conscious sedation.

Since I’ve never been sedated before, one of the things that has me a little nervous about the AVS is the “conscious sedation” part. It’s one of those “everyone is different” things, where nobody can tell me for certain how I will react to the meds. I’ve been trying to find out specifics about best and worst case scenarios, and this link (PDF) provided me with a pretty good overview.

The meds they will be using are Versed, Fentanyl, and morphine. Adverse reactions include:

  • Versed: Respiratory and cardiovascular depression may occur. May also cause ataxia, dizziness, hypotension, bradycardia, blurred vision, and paradoxical agitation.
  • Fentanyl: Hypotension, bradycardia, respiratory depression, nausea, vomiting, constipation, biliary spasm, and skin rash.
  • Morphine: Hypotension, bradycardia, respiratory depression, nausea, vomiting, constipation, biliary spasm, and skin rash.

It’s gonna be a long day…

ETA: Found another link that describes conscious sedation in detail.

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

Risks of AVS.

With my AVS scheduled for this Friday, I’ve been immersed in finding out everything I can – the good, the bad, and the ugly. I already know what my doctor has told me to expect; I’ve read the first-hand patient accounts on the web; I’ve looked for statistics that show just how many of those notorious complications – adrenal hemorrhage or ruptured vein, mainly – actually occur.

Not surprisingly, as with every other aspect of PA, the information just is not out there.

I did find one article from the Mayo Clinic that gave an actual statistic: 2.5% or less complication rate when done by an experienced practitioner. Supposedly mine is being done by the most experienced interventional radiologist in my area, so, there’s that.

Still, I’m pretty sure I’m not going to be able to relax until this is behind me.

A day in the life.

I’m still waiting for my insurance to authorize the AVS procedure, so no news on that front. But I thought I’d talk about what it’s like to live with PA. Everybody is different, which is why I think it’s important that all of us document our symptoms and make sure our doctors are aware of everything. So, here’s what I’m likely to experience in a typical day.

I wake up with a headache and a frozen trapezius muscle almost every morning. I take .5 mg of cyclobenzaprine and a hot shower for the trapezius problem, and usually a large cup of very strong coffee makes the headache go away. Sometimes I have to chase that with 800mg of ibuprofen, which I hate doing so I save it for desperation time. The exact cause of the headaches is not known, but the working theory is that at some point early in the morning I have blood pressure spikes caused by the excess aldosterone.

My diet is extremely limited. Unrelated to the PA, I am lactose- and fructose-intolerant, which, long story short, means I can’t eat fruit, processed or packaged foods, and many grains, so even if PA wasn’t in the equation, eating would be a pain. But thanks to the PA, I’m also insulin-resistant, which means I gain weight very, very easily. So I have to restrict what carbs I can technically eat – rice, beans, legumes – unless I want to gain weight, which is physically uncomfortable for me, and more significantly, very quickly makes the blood pressure go up. Also thanks to the PA, I can’t add salt to anything or eat anything already prepared with salt. And then add to that my own personal choice to not eat red meat, as I am wary of the hormones used in raising it – there’ s not a lot left. Let’s just say that I view eating as a chore and would really welcome the day when they invent the “food pill” 🙂

I retain water very, very easily. The last time I ate in a restaurant, even though I requested my food to be prepared without salt, I gained four pounds. This was right after the aldosterone suppression test, so that may have contributed to the water retention, but – it took me a month to drop those 4 pounds. It was a very uncomfortable month.

I don’t sweat. At all. I don’t fully understand why this happens, and it doesn’t happen to everyone with PA, but I’ve been told that the excess aldosterone makes you retain both salt and water. And, well, that’s sweat. I actually don’t mind this at all, and kind of dread what will happen once the PA is corrected. I know that the hypertension meds that I have taken in the past have all made me a hot sweaty mess, but then, they weren’t the right meds in the first place, so who knows what will happen.

I don’t like the cold. Most PA patients are intolerant to heat; I’m a bit of an anomaly here I guess, but when I’m cold my trapezius muscle freezes up. Again, nobody knows for certain what is causing this to happen; the current working theory is when my potassium drops below 4.2, muscle spasms happen. But being cold can trigger it too.

I get heart palpitations. This is also from the potassium dropping. It also happens when I take Vitamin D – my Vitamin D level is extremely low, but I can’t take supplements without triggering palpitations.  None of my doctors seem to know what the connection is.

I’m tired a lot of the time. Not sleepy tired, just plain worn out tired. Dealing with all of the above can be, quite frankly, a royal pain in the ass. I know I’ve got it better than many PA patients – I don’t really let it get in the way of my life, except when it comes to food (and that is exhausting in itself!). But sometimes I don’t know what my limits are, and I’m learning that I need to set limits, because when I don’t, the symptoms start to multiply.

I get… confused sometimes. In the PA community this is referred to as “brain fog.” For me it’s not constant, but every now and then I just find myself checking out for a spell. I’m still not convinced this is PA-related so much as it is just general exhaustion-related. I also have a very hard time remembering dates, times, appointments, things like that, but again, I’m not sure whether to blame the PA or my own general spaciness when it comes to all things number-related.

Description of the AVS procedure.

There are a couple of accounts of AVS out there on the web – here and here – and once mine is in the past, I’ll be adding mine too. Meanwhile, here is what the interventional radiologist told me to expect.

Preparation for the procedure begins the night before, with the usual no food or water after midnight. The next morning I’ll arrive at the hospital and will be sedated. The drugs used will likely be versed, morphine, and fentanyl. After the sedation, they will insert a Foley catheter (warning, NSFW link!) – I’m told that for women this is far less of a big deal than it is for men, but still, it doesn’t sound any too pleasant.

I will be given a local anesthetic and a catheter will be inserted into both the left and right femoral veins, and the procedure begins. General anesthesia is not an option, as they need to ask the patient to do things (hold your breath, etc.) throughout the procedure.

After the procedure, they will keep me in a hospital room for about two hours, where I will be expected to lie still while they monitor a bunch of things. Once everything is satisfactory, I’ll be able to leave, but will not be able to drive. Theoretically I should be able to drive and go back to work the next day, but I’m planning to take a couple of days off, because I don’t think sitting at a desk will be very comfortable!

Because of a number of complicated things, it takes about 7-10 days for the results to come back – apparently samples get sent out to various labs for different reasons.

~ ~ ~

I’ve only had one surgery in my life, and I was still a kid so I don’t remember much. It’s the only time I’ve ever had any kind of anesthesia except for the dental variety. Because I’m allergic to penicillin (and a ton of other antibiotics, but nothing else that I know of) I’m at higher risk for having an allergic reaction to one of the drugs or contrast media during the AVS, but they routinely take precautions for this and have someone standing by to deal with it if it happens. This, the IR thinks, is the biggest risk of the procedure for my particular case.

The other routine risks associated with AVS are bruising, and inability to access the right adrenal. There is discussion elsewhere on the web and in the medical literature of risk of the adrenal vein rupturing. My interventional radiologist tells me she has never seen this happen, and if it does happen the cause is usually administering the contrast media too quickly, which usually comes from inexperience.

The interventional radiology consultation.

The visit was pretty routine, she explained the AVS procedure to me and told me what to expect. I did learn that at UCLA, they *always* use ACTH for AVS, and they *always* do AVS before adrenalectomy in all PA cases, even those who are under 40 years old. These are two areas of controversy within the greater PA community, and I was reassured to hear this. Even if I was under 40, I would want the AVS, as it is the only way to determine if the disease is unilateral or bilateral. I really wouldn’t want to undergo surgery only to be told, “Whoops, sorry, you still have to take meds for the rest of your life.”

The interventional radiologist commented that based on my CT scan images alone, she seconds my nephrologist’s opinion that the appearance of my left adrenal looks like textbook unilateral PA. Apparently the entire adrenal gland is enlarged, whereas my right one is normal sized.

She claims to have done dozens of AVS procedures, one as recently as two weeks ago. The main complication she has encountered is the inability to access the right adrenal and get a good blood sample. In most cases, this means the procedure has to be repeated, but in some cases it’s impossible to access the right adrenal. If If turn out to be one of those, if the levels they get on my left are off-the-charts high as they have been so far, her recommendation would be to proceed directly to surgery.

I think I’m in good hands. This might sound silly, but the fact that I really liked her makes me feel a lot more comfortable about going through with this. She made a couple jokes and laughed at my own wisecracks, and something about that really helped. It’s hard for me not to trust someone who has a good sense of humor 🙂

PA and hidden dietary sodium.

I’ve written before about the importance of watching sodium intake when one has PA. Lately I’ve learned that in some parts of the U.S., this is not so easy, because the sodium content is often undisclosed.

There have been a couple of discussion points on the online support forums frequented by PA patients about meat that has been injected with sodium. Since the beginning of my diagnosis, I’ve chosen to limit my meat-eating solely to chicken and fish; this decision was originally based on the hormones that other meats are treated with (mainly estrogens) that are not legal to use in poultry and seafood. I’ve never been a big buyer of red meat to begin with, and I haven’t shopped in a grocery store that was not either Trader Joe’s or Whole Foods in years, so I was pretty clueless about this sodium-injected meat that people were talking about.

Turns out the industry term for it is enhanced meat, and it’s commonly sold in supermarkets that do not have butcher counters. Allegedly it must be labeled as such, but this is pretty unenforceable. Additionally, in restaurants there is no requirement to disclose that this type of meat is being used.

At Whole Foods, I can buy chicken and seafood with no salt added. I’ll gladly pay more for this privilege, and I do this most days. But every now and then I find myself with no choice but to eat in a restaurant, and I always regret it. The next day, I wake up with a headache, elevated blood pressure, and sometimes digestive issues which make me think that since my body is not capable of eliminating the excess salt through normal means, it’s trying to do so by any means necessary. I’ve decided that until I get this thing resolved, I’m opting out of restaurant eating entirely unless I can ensure that it’s at a natural-foods place that discloses all ingredients.

But not everybody with PA has the options that I do, and I find this truly disturbing. I’m not sure what the solution is other than to read every label and refuse to buy this so-called enhanced meat, but for some people, that leaves few options.