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.


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.




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. On  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.

The whole story.

Apologies as it’s long and rambling and completely stream-of-consciousness, but I wanted to get everything I remembered out there before my usual forgetfulness kicks in.

~ ~ ~

The day before my adrenalectomy, I got a call from the hospital telling me I had to be there at 4:45 the next morning. 4:45! My surgery was scheduled for 7:30. While a part of me was grateful that things would be happening sooner than later, as a late riser and decidedly not a morning person, I spent the night stressing out that I’d sleep through the three alarms that I set. Turned out I barely slept at all.

My friend C picked me up and we got to UCLA and checked in, a formality that I’ve become a pro at after having two AVS procedures done there. For the next hour or so there was a lot of waiting, then bloodwork, a visit from the surgeon (who marked my left side), and a consultation with the anesthesiologist, who periodically reappeared to tell me he would soon be giving me a “cocktail” to relax me.

I don’t remember ever getting that cocktail – my memory jumps from trying to stuff my mass of unruly hair into the little blue cap, directly to waking up in the recovery area. As I was becoming more and more conscious, I noticed two things: the sore throat from the intubation, which I had been warned about (and which was not as bad as I had feared), and the pain at the incision site, which felt exactly like a runner’s cramp (or “stitch” which I just learned it is also called – appropriately enough since I have sutures there!). At some point  my friend C appeared and I learned that I was going to be taken to an observation suite, where I would spend the night, and would be allowed to have visitors.

I have a vague recollection of arriving in the observation suite, where I began to notice that I was hooked up to a saline IV, a BP and oxygen monitor, and leg pumps to prevent blood clots. The pain was still not that strong, so I assumed I was pretty heavily drugged. Nurses came in and out regularly to check my BP, and I was getting readings of 130s/80s, something I had not seen in over ten years – but I had to remind myself to not get too excited since I knew the drugs were still in my system. Every 6 hours a nurse came to check my potassium, which was 3.2 immediately after surgery. I was given 400 MEQ of potassium orally, which brought it up to 3.6, where it remained for the rest of my hospital stay.

My afternoon and evening was filled with visitors, and I felt pretty good overall except when I laughed or coughed. A nurse brought a morphine injection every 2 hours but after the third one, I asked if I could hold off for a while since I didn’t think the pain was that bad. They also wanted to give me Vicodin, which I really hate, and I refused that too.

After my last visitor left around 10pm, I started to get really restless. Opiates tend to make me really alert and unable to sleep, and I asked if I could get up and walk around. At this point it was a bit of an ordeal since I was still hooked up to a Foley catheter, but one of the nurses unhooked me from the leg pumps, rigged the Foley to the IV pole, and helped me out of bed. Standing up felt great and I was able to make two rounds of the hospital floor. Unfortunately, this is when the pain from the residual CO2 gas started up.

A couple friends who had had cholecystectomies had warned me about the pain from the CO2: they told me that the pain wasn’t in the abdominal area, but in the shoulders. They were right – as I was walking, I could feel the pain travel from my diaphragm area straight up my chest and into my left shoulder, where it stayed, forcing me to walk bent forward. I didn’t care; I had been told that walking was the best thing to relieve the pain, so I kept going until the nurse made me stop.

When I got back to my room I still wasn’t tired but tried to rest anyway. My rest kept getting interrupted by hospital staff trying to bring me food – apparently despite requests through my doctor, the hospital scheduling department, and the nurse at intake, they never got my sugar-free/gluten free request and kept trying to talk me into eating junk like Jell-O and artifically flavored “grape drink.” Why they serve this stuff in hospitals I’ll never understand, but that’s a rant for another day… Not that I could have eaten anyway. The leftover CO2 had my stomach feeling as if I had just eaten several large Thanksgiving dinners!

Around 2am my nurse came in and asked if I wanted “something to help me sleep.” Instinctively I told him no, and explained that in addition to not feeling sleepy, as a stomach sleeper I knew I’d have trouble sleeping after surgery since sleeping on my stomach would not be an option. He asked if I wanted him to help me shift to my right side to see if that helped, and I said sure, it was worth a try.

Once on my side I felt a lot more comfortable – for about a minute. Then I felt the CO2 in my abdomen start rushing upward, pressing on my diaphragm. Interesting, I thought, maybe it will all come out at once… Only it didn’t. The pressure became overwhelming and suddenly I stopped breathing because of the pain! I was able to press the call button for the nurse but I couldn’t talk or tell them what was happening. I sensed that if I could stand up, it would be better, only I couldn’t push myself up. Somehow I found my voice and started screaming I CAN’T BREATHE – by this time I had a doctor and about a half-dozen nurses attending to me. They put me on oxygen and eventually someone helped me out of bed, and immediately the CO2 pressure started to alleviate. The doctor checked me out for subcutaneous CO2 something-or-other, which he said was negative. The nurse commented that it was a good thing I had refused the sleep aid, because who knows what would have happened then! Scary thought.

At this point all I wanted to do was remain standing up, or walk. They wouldn’t let me walk until my oxygen level came up a bit, and once it did I kept those nurses busy for the rest of the night making rounds of the hospital floor. One of them noticed that my Foley hadn’t been removed and went ahead and finally took it out.

My surgeon stopped by around 6am to check in with me. She explained that the pain would probably be very profuse at one of the incision sites, which was larger than the others and had sutures through the muscle. My adrenal was surrounded by fatty tissue, something she found really surprising since it’s usually only seen in overweight patients. Since the whole gland has to come out in one piece, she had to take the fatty tissue out at the same time, hence the larger incision. This was the source of the “runner’s cramp” pain, which she told me I really should be taking pain meds for even if I felt I didn’t need them. So, it was back on the morphine at that point. She also went on to describe my tumor and adrenal as “beautiful” – she said the tumor looked like a yellow pearl, and the adrenal was an interesting gradation of yellows and oranges, and that she had meant to take a picture to show me but then forgot to. I wish she had, as I’m pretty fascinated by all of this!

The surgeon told me that she wanted to discharge me that afternoon, but first they had to make sure I could pee on my own. If not, I would be put back on the Foley and kept another night. This turned out to be more challenging than it sounds – I put the nurses through many false alarms, helping me rush to the restroom only to spend a half hour in there with no results. Just when things were starting to look really bleak – at one point, 6 residents stopped by to talk to me about how I’d have to go back on the Foley if I couldn’t do it! – I figured out that if I stood up, I could make things work! And for the next two days this is what I had to do.

Once past that obstacle, it was decided that I would be returning home late that afternoon. My friend C came to hang out for the day and to drive me home and we spent much of the afternoon walking, walking, walking. The CO2 pain was becoming more and more profuse, and one of the doctors encouraged me to take the Vicodin. But first, I had to eat something, which with a belly-full of CO2 was an incredibly daunting task. My surgeon straightened out the dietary issues problem and I was able to get a bit of basmati rice, which felt like a brick in my stomach but seemed to make everyone happy. I took the Vicodin, which didn’t do much for the pain.

Mid-afternoon, my surgeon’s nurse practitioner stopped by. She ordered an injection of Toradol, which she explained sometimes worked better in people for who opiates don’t do much (which I am learning would be me). Shortly after that injection, I was absolutely pain-free for the next couple of hours! C and I set out on another round of circling the hospital floor, and during this journey we ran into the interventional radiologist who did my second (and successful) AVS. I announced my newly mono-adrenal status to her (and probably freaked her out a little bit with my morphine-induced enthusiasm!).

I was released early that evening, and as someone who lives alone, this is when things got a little scary. While being escorted to the parking garage in a wheelchair, every bump of the brick-inlaid sidewalk caused something or other to move around inside, and it was pretty painful – possibly the most pain I had been in the whole time. At the entrance to the parking garage, there are no ramps, so from that point on I had to walk. I went down my first stairs – not nearly as hard as I had expected – and began the long walk to the car. When we arrived, my heart began fluttering super-fast and hard. I sat down and debated going back, wondering if my potassium had dropped again, but I felt it slowing down and soon felt fine. So, we headed home.

Once I was home I started to panic a little. I knew the main thing I needed was some rest, as I had been either standing or walking since that 2am breathing episode. My house is too small for another person to stay with me, and it takes a few days for me to get comfortable in other peoples’ houses, so I didn’t want to stay with any of my friends – I just wanted to sleep in my own house. This proved to be trickier than it sounds – ordinarily I sleep in a loft, but climbing the ladder to get up there is out of the question for a week. So, I was stuck with the sofa, which is very low and very cushy, and the cushiness was causing a lot of pressure on the incision sites. I couldn’t lie down without major discomfort, so I got creative and with a stack of pillows and a dining chair, managed to rig a way to sleep sitting up. I slept that first night in stretches of 4 hours – exactly the time between Vicodin doses, which made me believe that I was being awakened by the pain.

The next morning I felt a whole lot better after finally getting some sleep. The CO2 was still causing a lot of pressure, I still couldn’t eat, and even my morning coffee held no appeal, so I just stuck with drinking lots of water. I went for two walks that afternoon, one over an hour long, and came back exhausted but feeling pretty good and managed to get even more sleep.

The second day home was the hardest of all. The CO2 was really starting to move around and this pain is untouched by the Vicodin. I decided to try to get moving anyway, and took my first shower since before the surgery, which was harder than I expected. Things that I thought would be hard – reaching up to wash my hair, for example – were not a problem; bending forward was, as was trying to keep the water flow from directly contacting the incisions. After my shower, I tried to go for another walk, which was far less successful than the day before – it took me over 20 minutes just to go around my block, and as slow and hunched-over as I was from the CO2, I figured that was enough. By the end of the day I began to feel like the CO2 pain had finally diminished quite a bit.

Today is my third day home and even though it’s still early, I’m noticing a lot of improvement. Transitioning from sitting to standing no longer is painful; I’m still relying on using anything and everything around me to pull myself up but it feels like I’ll be able to do it without props by tomorrow. Coughing and laughing is no longer excruciating. I still can’t eat much, but the bloated feeling is going away. The three pounds of fluids that were in my body seem to have finally passed, and in addition I’m three pounds lighter than I was before surgery. I think my water retention is finally going away – my double-chin is gone and my face looks totally different, and I’ve lost an inch off the circumference of my upper arms.

My blood pressure, which started to climb my second day in the hospital, is still higher than it was pre-surgery – my last reading was 186/111! My surgeon thinks this may persist for a couple weeks and is not too concerned. My heart rate has dropped significantly – pre-surgery, my average was 112; now it’s 87, getting closer to the “normal” of 70 that my doctor hopes to see soon. Tomorrow morning I’ll get my potassium checked. Right now I’m still taking 20 MEQ daily; I’m hoping to be able to stop this.

So, it’s too soon to tell if the surgery was a “cure.” I’m remaining hopeful and feeling pretty good. Having that tumor out of me is a huge relief – I just was not comfortable with knowing it was there and that it could potentially grow and make my symptoms worse over time.

Now with one less adrenal gland.

And one less tumor! Can you tell I’m very excited that it’s out of me? 🙂

On Thursday, I arrived at the hospital at the cruel and unusual hour of 4:45am. Surgery was scheduled for 7:30, and though not a morning person I was pretty happy to be the first procedure of the day. Still, I spent the night before stressing out about whether or not I’d hear my alarm and get up on time, and probably slept less than two hours.

Between lack of sleep and mixed feelings of excitement and absolute terror, the morning of the surgery is a bit of a blur. I have vague memories of meeting with the surgeon, the anesthesiologist, and enthusiastic young med students. I remember the anesthesiologist promising a “cocktail” for relaxation several times, but I don’t remember ever getting it – the next thing I know I was waking up in a recovery room and the surgery was already behind me!

Around 2pm I was moved to an observation area, where I could have visitors, and spent the remainder of my hospital stay. At first the pain felt like a cramp in my side much like one gets from running – persistent and annoying, but on a scale of 1 to 10 maybe no more than a 5. My afternoon was spent entertaining visitors – a big THANK YOU to all who stopped by! I hope I didn’t say anything too embarrassing (or flash my scars inappropriately!). I remember babbling away a mile a minute thanks to the morphine, which I stopped after three doses because I really didn’t think I needed it. Looking back, this might have been a mistake, but I was really hoping to get some rest and I know that opiates make sleep near-impossible for me. I also refused the Vicodin pills for the first day for the same reason.

But even after a sleepless night pre-surgery, I was not sleepy and became more and more uncomfortable just lying there. I kept the nurses busy in the wee hours of the night, helping me walk up and down the corridors. Standing was the most comfortable position for me, and walking is supposed to help the carbon dioxide from the surgery dissipate, so this was encouraged.

For most of that first night, the pain from the CO2 was far worse than the pain at the incision sites. The pain from the incisions feels like a really persistent cramp like one would get from running or swimming – it doesn’t really hurt all that much, it’s just constant and uncomfortable. The pressure from the CO2 is far worse – it presses on the diaphragm and causes referred nerve pain up the chest and into the shoulders. It comes and goes, and every time I think it’s gone for good it sneaks back for another visit. This is expected to last anywhere from a couple of days to a week.

I had one really frightening moment around 4am when I tried to lay on my right side and I felt the CO2 rush up toward my diaphragm, making breathing impossible. Screaming, however, I managed just fine and within seconds I had a half-dozen people tending to me! Once I was standing up and on oxygen, I could breathe again and was fine, but this was the most disturbing moment of the whole experience and I really didn’t have any desire to lie down again after that.

Around 7am the day after surgery, my surgeon stopped by. She told me that I should be taking the pain meds even if I didn’t think I needed them, because unlike most laparoscopic surgeries, I have sutures instead of just glue or steri-strips. Apparently my left adrenal was surrounded by fatty deposits, which she said really surprised her as they are usually not found in people who are not overweight. Since the whole gland has to come out in one piece, she had to make a larger incision to accommodate this. She then went on to describe the tumor and gland as “beautiful” and told me she meant to take a photo of it to show me but forgot! I wish she had, I’m pretty fascinated by this stuff. She will have the pathology report to go over with me on November 4, and my adrenal is going to be placed in a tissue bank to be part of a research study.

After my visit with the surgeon, I took her advice and went back on the pain meds – first morphine, then Vicodin, neither of which really did all that much. Another doctor from the surgical team stopped by and ordered some Toradol, which worked beautifully – trouble is it’s injection only, so only available in the hospital. Late in the afternoon I was released, with more Vicodin (that I swore I wouldn’t take, but that changed pretty quickly).

Coming home was difficult. While overall I’ve been really pleased with everything about the hospital at UCLA, the journey from the hospital to the parking garage is not very patient-friendly. The sidewalk is inlaid with brick and the wheelchair ride was BUMPY and really shook things up. Once at the entrance to the garage, there are no ramps – I’m not sure what patients who can’t walk do about this, but I just began a long, slow walk with my friend to her waiting car. This led to my second most frightening moment – the moment we got to the car my heart began fluttering really quickly and inconsistently and wouldn’t settle back down for quite a while. I waited it out and it seemed to slow down, so rather than going back to the hospital, I decided it was time to try going home.

Throughout this whole crazy trip, this is always the hardest moment for me: the doctors can’t tell me “you HAVE to have someone stay with you,” and they can’t keep me in the hospital any longer. I live alone, in a tiny place that doesn’t have room for another person to sleep. I don’t sleep well in other people’s homes, so even though staying with friends is an option, I’m not willing to do it. I know that after any procedure, rest is one of the most important things I can do, which means I really just want to be in my own home. And being left alone, in pain and with a head fuzzy from drugs, feels pretty vulnerable even though I’ve got good people looking out for me and a phonecall away on speed dial.

The upside to living in such a tiny place is that it’s easy to get around – there’s always something to hold on to, even if it’s not exactly up to hospital standards. Going from sitting to standing, or the other way around, has been amazingly difficult – I’m very puffy from the CO2 and fluids that they filled me with (three pounds’ worth!) and my stomach muscles feel like I’ve done about a thousand sit-ups. In addition, my leg muscles have been working overtime and feel like I just finished an 18 mile hike.

One thing I hadn’t expected was how uncomfortable sleeping would be. Ordinarily I sleep in a loft, which requires climbing a vertical ladder. Obviously this is out of the question, so I’m stuck with the sofa. Which, while comfy for hanging out or taking a nap under ordinary circumstances, is low and squishy and not at all easy to get in or out of with all that muscle pain. I managed to come up with a way to sleep sitting up, involving a bizarre combination of pillows, the sofa, and a dining chair, that actually worked out really well, so there is where I will be spending the next few days. And after two sleepless nights, I got in a good twelve hours of rest last night, interrupted like clockwork every four hours for more pain meds. And this morning I felt well enough to begin my day with my customary cup of high-octane coffee – which I’m taking as a good sign that I’m feeling better. Even if my stomach muscles don’t quite believe it yet 🙂

~ ~ ~

Now for the on-paper stuff.

Blood pressure: The first night, I was seeing blood pressure readings down in the 140s/80s – I haven’t seen any that low in almost 10 years. But yesterday fluctuations started, and began to stay on the high side – I’m seeing 170s/100s, which I’ve only seen that high back when I did the salt loading test, alternating with 150s/90s, still higher than my usual high-normal average of 144/92. My surgeon emphasized that it will take some time for things to normalize; the conventional wisdom is that once the offending adrenal is removed things should stabilize right away, but this is not true of everyone, especially not those of us who have been sick for so long.

Potassium: Coming out of surgery my potassium dropped to 3.2. My surgeon waited until the next day before giving me any supplements, she had it checked every 6 hours and it stayed at 3.2 the entire time. Yesterday morning I was given 40MEQ of potassium, which brought it up to 3.6, which is not optimal but “normal” enough to release me. I’m still on 20MEQ a day of supplements through Tuesday, when I’m getting it checked again.

So, I’m taking the fact that my potassium did not completely tank as a sign that positive change is going on. I am, of course, a little worried that this may not be the complete solution – that medication will still be in my future – but it’s too soon to know so I’m not going to dwell on that. As one of the doctors explained to me, just because the gland has been removed doesn’t mean the excess hormones are completely out of my system yet. Add to that the stress of surgery and pain, and it may take some time to see those numbers come down.

What to expect.

Just a quick little collection of links that detail the laparoscopic adrenalectomy that I am scheduled for this coming Thursday. For those who are stronger than me, feel free to Google for videos – there are many. Personally, I prefer words.

Each facility does things a little bit differently and each has varying levels of restrictions after the procedure. I’m told that if all goes well, I will never actually even be admitted to the hospital – I’ll be in surgery, then in a recovery room overnight, and then discharged the next day.

My only restriction on driving is “don’t do it while on narcotics.” Uh, duly noted! I asked how long before I could do yoga, climb a ladder, or climb stairs, and the answer I got was “whenever you feel up to it.” The only real restriction seems to be on lifting things – nothing over 10 pounds for 2 weeks. Guess I’ll need a smaller purse…

I’ll know Wednesday afternoon what time I’m going in, but as of now it looks like I’ll probably have to be there bright and early at 6am, with a surgery start time of 8, meaning there’s the possibility it will all be behind me by noon.

I still need to confirm this on Wednesday, but I’ve been told visitors are allowed 24 hours. And I’m not shy about these things – if that’s really true, then vistors are welcome!