Two months (and a couple days) post-adrenalectomy.

Hard to believe it, but my surgery was October 13 – that was over two months ago! And even though I’ve hit a bit of a bump in the road, I can still say with absolute certainty that it was the right decision. Not that I ever really had any doubts.

The good: The blood pressure remains in the normal range, so much so that I don’t really bother to obsessively track it as I once did. Next month I’ll be getting some bloodwork done to check the other stuff, mainly potassium, more in the name of science and documentation than to check for anything that may be amiss. Because really, the best test of potassium levels for me is headaches and muscle spasms – if I don’t have those (and I don’t, not a single one of either since the surgery) then I know everything is fine.

The bad: I’m still dealing with lingering pain at the incision sites. It ranges from dull-and-mostly-annoying to occasionally bringing a tear to my eye; when my doctor asked me to describe it on a scale of 1 to 10, I gave it 3 for actual pain and 6 for the annoyance factor. I’ve been getting it acupunctured, which seems to help. I was also given the option of an injection into the muscle for pain management – eep! You know, I’m fine with the acupuncture needles, but that… just sounds like a last resort to me, so I’m  not going there. Yet, anyway.

The… interesting: Very little is known about living with one adrenal gland, so I’m sort of keeping track of things that have changed since the surgery that don’t have a direct correlation to the renin-angiotensin-aldosterone system. Here are a few:

  • Weight loss. I’ve heard from others that they lost about 15 pounds almost immediately after adrenalectomy; mostly due to the elimination of salt and water retention. But most of them were overweight to begin with; I wasn’t. I’ve lost close to 10 pounds; to do the math, this is 1/12 of my pre-surgery body weight. I’ve also lost half a shoe size; again, I’m guessing this was from edema of some sort. But the oddest thing? My belly is nearly flat for the first time in my life. Even at my thinnest – 89 pounds back in 1997 when I was first sick and nobody knew why – I had a pot belly. Even as a scrawny little kid, I had one. Now I don’t. Of course this makes me wonder if I’ve had PA for much longer than originally suspected.
  • Eating. After a very long time of eating next to nothing at all because the sodium content made me so sick, I’ve been slowly introducing more… normal food back into my diet. It’s been hit-and-miss. I’ve eaten salty Indian restaurant food a couple times and been just fine. I’ve eaten salty Japanese restaurant food a couple of times and gotten really sick afterward. I think I know the culprit, and facing this kinda makes me want to cry: soy sauce. Specifically, soy sauce made with wheat, which is what is most commonly used in this country. While my tests for celiac were negative and I’ve always operated on the principle that I am gluten-intolerant but not true celiac, those tests were never accurate since I was already gluten-free when my biopsy was done. But my Japanese restaurant encounters have each resulted in full-blown celiac-like symptoms, so I think that kind of says it all. The other possibility is that I’ve developed a soy intolerance. Either way – good times! Only, not.
  • Caffeine, carbohydrates, alcohol: Another post-adrenalectomy patient has written of issues with hypoglycemia as well as caffeine and alcohol. I’ve dealt with hypoglycemia since childhood and have been able to manage it pretty well since I don’t eat sugar and wheat to begin with – simple carbs are the worst thing for hypoglycemia. Since the surgery, I’ve eaten rice and potatoes in small quantities and had no problems, whereas before the surgery eating either would have put me into a food coma even at small amounts. My response to caffeine has been unpredictable – sometimes when I really need it to pick me up, I can have a cup of coffee and still feel like I could take a long nap directly afterwards. Other times I’ll have a half-cup and feel like I’m bouncing off the walls. Green tea seems to agree with me far better, so I’m drinking more of that and less coffee. As for alcohol – I’ve been scared to go near the stuff ever since I had a bad reaction to it last summer during my brief experiment with spironolactone. But I’d like to join in the holiday festivities of the next couple of weeks, so perhaps I’ll have more to say on the subject soon.
  • Acne: My adult-onset acne issues seem to have relocated from my face and back, to just my back. While I was hoping for this to vanish completely, hey, I can live with this. I still think there is lingering hormonal stuff going on and am hopeful that time will take care of this.

So… all of that to say that the good still continues to outweigh the bad. The biggest challenge is navigating the unknown, which I suspect I’ll be doing for quite some time.

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Two steps forward…

…and better make that not one, but two, steps back.

Around the middle of last week I began complaining a bit of pain at the surgery site. With the holiday coming up I tried to not think about it too much; I knew that my doctors would be impossible to reach and I didn’t want to have to explain my whole medical story to somebody knew. I went about my business – busy-ness? – driving, walking, yoga-ing, and lifting (been in the midst of a downsizing-my-stuff frenzy).

By Saturday morning the “bit of pain” had become constant. I continued to ignore it, continued the driving, walking, yoga-ing, and lifting.

By Tuesday morning I was worried. Laughing hurt. Coughing hurt. Getting up, sitting down… yep, that too. Breathing hurt. So I finally made an appointment with my doctor, who I saw this morning. And not a moment too soon – I had been up, on and off, since 2am debating whether or not a trip to the ER was in order. I figured no fever, no emergency, right?

I was right. My doctor thinks I pulled a muscle, irritated some scar tissue, or ripped the internal stitches. Or all of the above, considering my pain level. It happens; its not uncommon, even this long after surgery. You can see it – the incision sites are looking a bit red and angry, and my left side is visibly swollen. So it’s ibuprofen and a heating pad for the rest of the day.

And orders to slow down a bit.

Who, me??

Six weeks post-adrenalectomy. And, thankful.

Happy Thanksgiving! Appropriately enough, I’ve posted a note of thanks, and a condensed version of my story, on my adrenal surgeon’s blog, here.

My adrenalectomy was six weeks ago today. I still have occasional pain on the left side near the largest incision, but aside from that, I just keep feeling better. I blame the pain on the long hours of sitting hunched over a computer in order to earn a paycheck, and am hoping to remedy this by getting a standing desk soon. After all the walking that I did during my time off right after surgery, I am more convinced than ever that sitting all day – what has become the norm in our post-industrial society – is really, really not good for you. The days that I don’t get a long walk in, my blood pressure runs higher – 120s/80s instead of 110s/70s – and that, in and of itself, is proof enough for me: we are meant to get up and MOVE!

The most notable recent change for me has been the sensation of cold. Yes, it’s practically winter in many parts of the world, but here in Southern California it’s not exactly freezing, and I have not been accustomed to feeling especially cold in previous years. But this year? Brrrrrrr. I’ve had to buy a few things like corduroy pants, instead of the dresses and skirts that I prefer to wear, and a “real” coat (instead of a lightweight jacket) because I can’t seem to stay warm when the temps drop even a little. And I’ve become very, very enamored of fleece. When I had the tumor I was always, always running warm, and often running an inexplicable low-grade fever, so this is quite a change and is taking some getting-used-to.

The other post-surgical change that seems to have become a permanent fixture is that my sleep patterns have completely reversed. Prior to the surgery, I had always had night-owl tendencies and rarely went to sleep before 1am. On weekends, if I didn’t have a compelling reason to get up, I would sleep until noon. Maybe later. While I quite enjoy the night-owl part of the equation, I wasn’t thrilled that I was sleeping half my weekend away, but any time I would try to get up earlier I would end up feeling really sleep-deprived. In the days immediately after the surgery, though, my sleep cycle was completely out of control – two hours of sleep followed by three hours awake, with an overwhelming need to nap at 2pm every day. Now that I’m back to work and on a schedule, this has evened out a bit and now looks like this: by 11pm I can hardly stay awake, so I turn in “early” (hey, that’s early for a night-owl!); I sleep through the night and find myself wide awake at 7am, completely without the grumpy, out-of-sorts feeling that the 7am hour brought prior to the surgery. I’m not sure how I feel about this, but on paper it certainly looks normal – hey, isn’t that that eight hours of sleep everyone is always telling us we should have?? I’m enjoying being up and out and about early in the morning on weekends, before everyone else is doing the same thing, but I miss those post-midnight hours and the clear focus and creativity that would come to me at that time. If I could only channel those things into the spare morning hours… Perhaps more coffee would help…

Still. Minor complaints. Not really complaints at all; observations. I remain confident that my decision to have surgery, six weeks ago today, was the right one. For me.

So. Yes, thankful.

Farewell, my file folder.

Today was my last follow-up with my nephrologist, which was the last of all of my post-adrenalectomy follow-ups. I entered his office a recovering adrenalectomy patient; I left as a healthy individual with no known health issues, free to get on with my life in whatever way I desire.

Potassium remains 4.5, with no further need for frequent testing. Blood pressure home average was 117/78, 120/80 in the doctor’s office. Resting heart rate average is 79.

In January, I will follow up with my primary care doctor to get potassium checked again, as well as cholesterol and blood sugar, both of which have had really odd patterns that the hyperaldosteronism *probably* caused. Time will tell. Assuming those issues resolve, the only testing I will need will be annually. Just like any other healthy person.

For the past ten months, I have had somewhere between one and three appointments nearly every week. A small forest has likely been destroyed due to the paperwork my case has generated. Every weekday, I have carried this file folder with me, full of lab results and letters and recommendations and PubMed articles. Pictured above is the last month’s worth of paperwork; elsewhere I have an entire file drawer filled with everything from most of the past year.

It’s strange, kind of, the knowledge that no matter where my days will take me in the future, nobody is going to be asking for lab results or CT scan discs. And it’s a little odd knowing that I really only need to remember to be two places: at work, or not at work.

I have no idea what, if anything, all of this will change for me. But I do know that there are many, many more possibilities open to me than there would have been had I not had the surgery.

Final report from the endocrine surgeon.

This morning was my follow-up with the endocrine surgeon. I got some post-op aldosterone and renin numbers which are normal:

Aldo 1.3 (reference range <31) – before the surgery I think mine was 44
Renin 1.1 (reference range 0.2-1.6) – before the surgery mine was undetectable

And I got a copy of the pathology report:

FINAL DIAGNOSIS:
Adrenal gland with a cortical tumor, 0.7cm

A microscopic exam has been performed. The specimen… consists of a 10-gram,
7.0 x 4.5 x 0.5cm adrenal gland with attached adipose tissue. The adrenal gland
is 5 grams, 4.0 x 2.0 x 0.5cm. On cut surface, there is a 0.7 x 0.7 x 0.7cm
well-circumscribed, golden-yellow nodule, which grossly appears to come from the
cortex of the specimen. No areas of hemorrhage or necrosis are identified within
the nodule. The remainder of the gland has a golden-yellow and dark red cut
surface.

All that to say what we (hoped we) knew all along – it wasn’t cancer. Yeah we knew that, but still – whew.

My surgeon, to echo my primary care doctor and my nephrologist, pronounced me “cured.”

I burst out into tears and gave her a hug.

Random good things.

As I near the three-week mark after my surgery, I’m happy to report that things continue to just keep getting better.

I started back at work yesterday and almost made it through a full day. Sitting, after about 4 hours, starts to compress my side where the incisions are a bit; I’m going to have to remember to break up my day with a couple of walks now and then. The biggest things I’ve noticed that are different while at work:

  • I am so much more clear-headed. SO much more! I’m not sure if it was the sedative effects of the cyclobenzaprine I took for my muscle spasms, or the screwed-up hormones from the tumor itself, or the stress of dealing with getting the illness resolved, or – all of the above maybe? But I had no idea how scattered and unfocused I was before the surgery. It’s amazing to be able to actually pay attention to the task at hand.
  • I’ll just come out and say it – I don’t have to get up to pee constantly. This is a huge thing with PA patients; many people can’t sleep well because of waking up many times per night to pee. I was lucky in that I didn’t have that problem, but in the office, with the dry artificial climate and the dehydration that occurs with PA, I was constantly drinking gallons of water, and therefore constantly making the trek to the restroom. And I got pretty self-conscious about it after a while. It’s nice to be able to spend more time actually working and less time, well, peeing.
  • Food. Work-related because we get lunch catered in my office a couple of times a week. Often it’s junk food that I couldn’t/wouldn’t eat anyway, like pizza or pasta, but once in a while it’s something really good. Like Mexican or Indian. After eating the same thing for lunch EVERY. SINGLE. DAY. SINCE. FEBRUARY – some form of salad with grilled chicken with no salt – having something with actual flavor is quite a novelty. Hello, salsa!

And some other improvements in general:

  • Seeing BP readings drop down into the 110s/70s, particularly after taking a nice long walk. Which makes me think nice long walks should be a mandatory part of everybody’s day, and I’m going to start including one in the workday when I don’t have enough time or daylight for one after work.
  • No cystic acne since before the surgery. My skin and hair are still far oilier than they should be for a Woman of a Certain Age, but there’s a definite improvement.
  • Not a single headache since before the surgery. Three weeks without a headache? That’s a record for me.
  • My weight has not fluctuated one bit since a few days after the surgery, when the excess weight from the fluids they pumped me up with finally left. I’ve lost about seven pounds since my pre-surgery weight and no matter what I eat, I don’t seem to be affected by salt content. Before the surgery, a single salt-containing meal would make me retain between three and seven pounds of water; that no longer seems to be an issue.
  • The weird metallic taste that I had from the potassium depletion is completely gone. A minor thing maybe, but this drove me absolutely bonkers because it was a constant reminder that I was sick.
  • No more SUPER LOUD POUNDING HEARTBEAT. I used to get this primarily at night; it actually was one of my very first symptoms that something was wrong 10 years ago – one night it wasn’t there, and the next night it was, and it never left. It’s been gone for three weeks, so I think it’s safe to say it’s left the building.
  • Warning, girl talk alert: My calendar shows just about 28 days exactly between menstrual cycles. I know surgery in and of itself can skew things like that, so this could just be a fluke, but that’s the first time it’s been more than 18 days (and usually closer to 11-14 days) in between in almost 2 years. So, hey, I’ll take it, even if it’s only temporary.

My follow-up with my primary care doc is this afternoon; my follow-up with the endocrine surgeon is Friday. I don’t expect to hear anything remarkable from either one since I seem to be doing just fine. I’m finally driving again, planning to be back at yoga this Friday, and hoping to have time for a hike this weekend. My left side with the incisions still feels a little weird – it doesn’t hurt exactly, it’s more like a cross between an itch and a burning feeling – but most of the time I don’t think about it much, and the need for pain meds of any kind seems to be a thing of the past.

What remains.

Today marks two weeks since my adrenalectomy! Last month I posted my Wish List of things that I hoped the surgery would resolve. Here I’m reposting it, and have crossed off the issues that seem to be gone – many for the first time in 10 years.

  • heart palpitations or irregular heart beat
  • poorly controlled blood pressure despite multiple meds
  • brain fog or feeling of confusion
  • muscle cramps, tremors or twitches
  • headaches
  • numbness or tingling of extremeties
  • episodes of unexplained sweating/flushing/feeling hot
  • muscle weakness
  • unexplained thirst
  • metallic taste in mouth
  • unexplained feeling of anxiety
  • water retention after eating salt (up to 7 pounds (!) from a single restaurant meal)
    – okay, truth be told I haven’t eaten in a restaurant yet since I’m still eating child-size portions of food, but I have eaten takeout from Whole Foods just about every day since I’ve been home and have not had any problems

Too soon to tell:

  • insulin resistance
  • reactive hypoglycemia
  • severe, life-disrupting menstrual irregularities
  • adult-onset cystic acne
  • vision disturbances
  • hair loss ( I leave DNA evidence everywhere!)
  • dark hair growth on chin and upper lip

In addition, I still have a hepatic hemangioma. This is what happens once one starts getting scanned and poked and prodded – stuff that shouldn’t be growing inside of us gets found. There’s a bit of a link between estrogen and hepatic hemangiomas, which has me a little worried – I’ve already got a history of benign breast cysts that are also thought to be estrogen-driven. And before the surgery, my labs showed abnormally high estrogen and abnormally low progesterone – whether or not this was triggered by the hyperaldosteronism, or is just a normal part of pushing fifty, will sort itself oout in time I suppose. My OBGYN presumes it’s the former; I’ll probably have all this re-tested early next year. My hepatic hemangioma appears to be doing nothing much at all, and I certainly hope it stays that way. Its presence is not quite as disturbing to me as the adrenal tumor was – in the case of the HH, they know it’s benign based on how it looks, and the likelihood of it doing anything that could kill me is pretty small. However, I do wonder if it’s responsible for my inability to process fructose, which is, after all, metabolized in the liver.

Which brings me to my next point – I still can’t eat sugar. Or wheat. Nor, quite frankly, do I want to. But – and this is cause for rejoicing! – I can eat salt! And I can eat in restaurants again! It’s funny, so many of those close to me have reacted with “Now you can eat whatever you want, right?” and then seemed so disappointed when I explained that the salt/restaurants issue was related to the bad adrenal, but the sugar/gluten issues are not. I will always have fructose intolerance, and I will always have gluten intolerance – these are genetic. And lactose will always be questionable (but not damaging in the way that fructose and gluten are) as most people with fructose and/or gluten intolerances are sensitive to it, and I’m no exception. So, nooooooo – I still won’t get excited over cupcakes, or ice cream, or sandwiches. But that’s okay with me! Because I can eat Indian food again! And Thai food! And things that weren’t made in my own kitchen! All of which, really, is way more exciting to me than, say, a cookie. A piece of pie, on the other hand… now that I still pine for from time to time. Or a loaf of challah. Or a big bowl of raspberries. We won’t talk about that.