Well hello again, surgery.

Due to a combination of my own stubbornness, idiocy, independence, and plain old bad luck, I’m facing surgery again. This is the one complication of the adrenalectomy (or really any abdominal surgery) that they didn’t tell me about, since I don’t fit the profile for those who usually develop them (obese, sedentary, otherwise un-health-conscious) – I lifted something too heavy last week and next thing I knew, I had an incisional hernia. How did I know? Because I did a seated forward bend in yoga class, felt a searing pain in my belly, and looked down and saw a big bulge poking out. I did what any good yogi would do – took a deep breath, popped it back in, and finished my class. Aum, shanti, shanti. shanti.

I really had no idea that it was any big deal – I thought it was just my weird stomach being weird. But the pain didn’t go away and through the magic of Google, I diagnosed myself and realized it wasn’t something to mess around with. A visit with my primary care doctor this morning confirmed my diagnosis, and I’m scheduled to see a general surgeon on August 6 July 25.

I’m on complete and total restricted everything until the surgery – no lifting over 10 pounds, no yoga, no hiking, no bike riding. I can, however, walk, go to the beach, and play ukulele… as long as I lift no more than 10 pounds’ worth of ukulele at one time, of course. Put in those terms, it’s not entirely awful. Just a bit suckworthy, because I really like yoga, hiking, and bike riding.

According to my primary care doc, the hernia surgery will likely be laparoscopic, and will be a similar experience to my adrenalectomy except for the removing-an-organ-and-tumor bit. While it’s no picnic in the park, I know what I’m in for and outside of that horrible co2 gas they inflate one’s torso with, I know it’s nothing unbearable. Same routine, two weeks off work, the aforementioned restrictions in place for 4 weeks after surgery, yadda yadda. A bit of deja vu, perhaps.

Statistics claim that incisional hernias happen in 10 to 15% of all abdominal surgery patients. If you Google “10-15%”, interestingly you’ll find lots of depressing statistics for when bad things happen to good people, but few that reflect good things happening to good people. Or to bad people, for that matter. So I’m just going to file this one under sh*t happens.

Namaste.

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One year (er, and then some) post-adrenalectomy.

Hello, happy 2013, and apologies for my lack of follow-through here. My one-year anniversary of my adrenalectomy came and went, and – life got in the way. Sick cat, crazy job, the usual stuff.

But, I’m fine, really really fine, one year and three months after having my offending adrenal 86’ed. Blood pressure jumps around a bit but stays in the 118/70-130/85ish range; the higher days are generally thanks to the copious amounts of Sudafed that I have to consume due to a deviated septum. I’ve known I’ve had it since I was about 13 and I’ve been ignoring it in hopes it will go away; we all know that never works out. This year, I may have to give it some attention. But I digress… As for other bloodwork, I haven’t had any done. None. With my doctor’s approval, I’m proceeding based on symptoms – if my potassium was wonky, I’d have muscle problems, I’d have an irregular heartbeat. I know how those feel and I’m happy to say I’ve had none.

It seems a lot of people had a lousy year in 2012, but I have to say – it was the first year in at least 13 years that I didn’t have a mysterious illness (AKA a teeny little tumor that was hell-bent on killing me), so no matter how bad things got, I was constantly grateful that I had my health. And things got bad – job uncertainty and the death of my feline companion of 15 years – but I handled it far better than I could have when that tumor was still with me. Gone was the anxiety, the insulin resistance, the headaches, and for the most part, the inability to eat without getting really sick afterward. When you have all of that going on, keeping things together both mentally and emotionally certainly becomes difficult – I surprised myself at how level-headed I was able to remain since I no longer had the tumor doing my thinking for me!

Physically I’ve bounced back from the surgery quite well over the past year. My left side still has some visible scarring, and probably some internal scar tissue from when I ripped my stitches – most of the time I’m fine, but every now and then I get pain if I move in certain ways. This is usually in yoga; while I am in no way competitive about it, I’ve been practicing for a long time and have been… a bit aggressive in trying to get my strength back. My left side is still much weaker than my right, but I’ve gone from barely being able to stand without the support of a wall, to being called front and center by my instructor to demonstrate asanas. I’d call that progress!

All of that to say – no, still no regrets about having gone the surgical route. Time will tell, of course, but my first year of living tumor-free has been an amazing gift; more than I ever could have imagined.

ETA: one more point I failed to address originally – weight. Before the surgery, I struggled to keep my weight at a somewhat-healthy 125 pounds (remember, I’m only 5’2″). At one point, it was as high as 173 pounds; after that I stopped counting. Before I was sick, I had never weighed over 112. The day of my surgery, I weighed 122; within a week of coming home I was down to 107, which was really a little *too* low. Once I started eating a bit more, I hit 110, and have stayed in the 110-115 range ever since. For the record, that is the longest I have maintained the same weight since my earliest onset of PA symptoms 14 years ago; prior to surgery, I fluctuated within the 120-140 range. Today’s weigh-in: 112, same as in my twenties. And I’m almost fifty.

Three months (and a few days) post-adrenalectomy.

A few notes:

  • As of the first of the year, my doctor released me from the no yoga/no lifting/etc. directive and told me to get back to normal life. My pain from whatever I did to the incision site is, once again, almost completely gone. Here’s hoping it stays that way!
  • Blood pressure remains textbook normal. 114/73 today. I’m having labs done on the 25th to check potassium and the other stuff that was really wonky before the surgery – cholesterol, HBA1c, CRP, and C-peptide.
  • I had a haircut appointment yesterday for the first time since the surgery. My hair texture has completely changed and I’ve lost quite a lot of hair (as was evidenced by the previous week’s need to call the plumber to hydrojet my shower – never had to do that before!). I know that hair loss after surgery is really common, but of course this worries me. Mine all seems to have happened in the last month.
  • I’m continuing to lose weight without trying. Down to 111, a low I haven’t seen since the late 1990s. So if someone asked me if PA effects weight – heck, someone did ask me last night – my answer is yes, absolutely. (ETA: a brief dialog with the doc over at the Yahoo hyperaldo board led to my understanding that this is how it works: low potassium causes insulin resistance; once the low potassium is corrected, the insulin resistance goes away. Apparently correcting low potassium via oral supplements, as I did pre-surgery, isn’t always going to achieve the same effect for a number of reasons; mainly, the levels that are monitored – plasma potassium – are not the most accurate reflection of true potassium levels in the body.)
  • Had my first bit of bad news since the surgery. Last week I went to my optometrist for a routine prescription update. He dilated my eyes and noted that I have visible vascular damage. We discussed PA extensively and he understands what I’ve been through, but can’t really comment as to whether or not the damage he noted is reversible, or what, exactly, it means for me long-term. He also saw early signs of macular degeneration, which runs in my family (but usually doesn’t hit until age 70 or so – I’m only 46!). My mother has this, so I’ve always known that there was a good change I would eventually too. But from what I’ve read, uncontrolled hypertension – you know, that thing I had for 10 years while I was waiting for someone to diagnose my tumor – can also be a cause. I’m currently waiting for a referral to the chief of retinal disorders at UCLA to get to the bottom of this, and trying not to freak out. Or get too pissed off at the series of doctors who were unable to diagnose me all those years!

ETA: yeah, it was getting to me so I did a bit of Googling about the hair-loss-after-surgery thing. Apparently I’m right on schedule – the two-to-four month mark seems to be when it happens. A little disappointing since shedding was an annoying affect of the hyperaldo for me, and the surgery seemed to have stopped it. Oh well. It’s hair; it grows. I hope.

http://www.ehow.com/about_5390925_losing-hair-after-surgery.html

http://www.surviving-hairloss.com/post-surgery-sudden-hair-loss.html

http://ask.metafilter.com/137548/Help-save-my-hair

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.

Things they don’t tell you.

A week ago today I had my surgery! I’m amazed at how the time has flown by.

Not good, but better.

I’m also really amazed at how slow-going the recovery process is. While my surgeon told me to plan to take two weeks off work, my GP scoffed at that idea and told me he thought I’d be up and about within a few days. While I’ve had moments of “up and about,” I’m nowhere near ready to return to work, drive, or even be expected to think clearly at all times. The truth of the matter is this: nobody knows. We all are different. So I’m going to address a few things I wasn’t told – this is not to say “this will happen to everybody who has an adrenalectomy,” but only to recount what has happened to me.

Swelling/puffing: Not one of the nurses or doctors who I spoke to pre-op told me that I would emerge from the hospital swollen, puffy, and with several extra pounds of fluids in my body. Even while in the hospital, it was never addressed; as I was getting dressed to leave my friend pointed out that my ankles were swollen, and this was the first awareness of it that I had. Thanks to a heads-up from another adrenalectomy patient, I had anticipated this somewhat and worn my largest, softest rayon drawstring pants, the waistband of which is a good three inches too big. As I was getting dressed to leave, I could not even fasten the button at the top by about two inches, so I would estimate that my midsection was 5″ wider than usual. The first day home I weighed myself and was three pounds higher than the day I went in for surgery, and my waist was 2″ larger than usual. The first time I got dressed in “real clothes” instead of pajamas, I tried to put on a bra and found the band was a couple inches too small. So, hey, I’ve been a liberated woman ever since.

Driving: The discharge instructions will, vaguely, say you can drive as soon as you stop narcotics, making it sound like no big deal. I spoke with a couple other adrenalectomy patients who said they could drive three or four days out of surgery. OnĀ  Day Five post-op, I had to move my car to the other side of the street. I could barely get in the driver side (the passenger side is far less difficult), I could not fasten my seat belt at all, and turning to check for traffic or to back up was absolutely excruciating. So, I’m remaining on foot, which I am lucky to be able to do.

Pain: The best way I can describe the pain is that it feels like I did about a thousand sit-ups, then got in a knife fight. While in reality I have never done either of these, I’ve done enough yoga to know what strained abs feel like and this is very similar, only constant and much stronger. And the incisions really do feel like cuts in a way – when you move they tug and feel like they are being torn. There will be times when it is really, really bad. There will also be times when it is not, and you can forget about it for long periods. The worst pain for me has been during coughing, laughing, or attempting to blow my nose.

Pain management: You will be dismissed from the hospital with some variant of narcotics: Vicodin, Hydrocodone, Tylenol with Codeine. It will be a small amount – 24 seems to be the standard count – and you will realize very soon that, if you continue to take them every 4-6 hours as directed, they will only last a couple days. Trust me on this – the pain will last far, far longer. Your doctor will probably tell you to avoid blood thinners, including aspirin and ibuprofen, for a specified amount of time – in my case, it was three days after discharge. Take my advice and switch from the narcotics to ibuprofen (or naproxen, if you can take it – I can’t) the first chance you are able. I went from one Vicodin every four hours, to one 800mg prescription ibuprofen twice a day, and feel so much better.

Movement/range of motion: Before my surgery, someone warned me that the things she found hardest afterward were actions that involved reaching up – washing her hair, getting something off of a shelf – and another person had difficulty with lifting, even small things like a kettle of water for tea. I agree completely with the lifting; they send you home with a restriction of “don’t lift more than 10 pounds for two weeks” and you should follow it. But reaching up has proved to be no problem at all. It’s bending forward that I’m having trouble with. For the first four or five days after surgery, I could not bend or kneel. Even slight movement forward – such as brushing teeth over a sink – was really, really hard. The other movement that is troubling me is shifting from standing to sitting, or vice-versa. I’m camped out on my sofa for the duration, and somehow had the brilliant idea to park a dining chair next to the sofa. I use it to help me get up or to lower myself down. A second dining chair is parked by my closet, to help me keep my balance when I’m getting dressed.

Fatigue/sleepiness: Again via anecdotal evidence from other patients, I had been warned that once my BP began to drop, I would get really, really tired and want to sleep a lot. The past two days, this has been very true – I think I’ve been asleep more than I have been awake. My blood pressure and heart rate are dropping, slowly but steadily – I’ve gone from seeing 170s/110s to 140s/90s. Still nowhere near “normal” but very close to my pre-surgical normal, and it should come down even more. But as all this magic is going on inside my body, it’s wearing me out. Also worth noting: I’ve had a couple of really funny dreams these past few days. Prior to surgery, I rarely (if ever) had dreams, or if I did, I never remembered my dreams. But these have been hilarious and I remember them and I hope there are more to come!

I will probably add to this list as I think of other things, but those are my main observations, now that I’m one week past the worst of it.