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.

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Progress report.

Blood pressure at the nephrologist’s office today: 130/80. That’s dead-on normal, people! I haven’t seen numbers that low since 2001. He even checked and double-checked. Heart rate was 80, down from an average of 112. Waiting on labs for potassium but I’m sure it’s going to be just fine since I have no symptoms to tell me otherwise. Potassium is up to 4.5, which is the highest I have on record (with records going back to 2003).

I’m going from weekly monitoring to bi-weekly, and that will likely end soon. In about three months I’ll have bloodwork done for aldosterone and renin, more to satisfy my curiosity than anything else.

My nephrologist considers me “cured.” Me, I’m still proceeding with caution before making any such proclamations – I think I’ve done a bit more reading than he has on the topic and I know that time will tell. If my numbers look as good as they did this morning five years from now, then yes, I am “cured.”

~ ~ ~

Regardless, it’s a very strange feeling. The pain from the surgery still hasn’t gone away – I still can’t drive, and sitting for more than a couple hours is pretty uncomfortable – but if I didn’t have that pain to remind me, it would be as if I had never been sick in the first place.

I’ve spent 9 of the last 10 years of my life misdiagnosed with something that I did not have (essential hypertension), and being treated accordingly. Two years ago, I was on seven (seven!) different medications, none of which did a damned thing to help me (and some of which, paradoxically, increased my blood pressure) and was fighting the medical establishment, trying to find someone who would believe what I already knew – that I had something else wrong with me and that the hypertension was secondary. I don’t know how I knew it at first; sometimes we just get a sense of these things.

By mid-2010, it was clear that I was losing the fight. Between the palpitations, arrhythmia, sudden potassium crashes, and headaches, I was pretty certain that I was going to die before I could get anybody to listen to me. And just like that – just when I was about to give up – I found my primary care doctor, who, like myself, had no idea what was wrong with me but knew with absolute certainty that it was *not* essential hypertension.

That was last December. Within the month, I had been referred to my nephrologist, who diagnosed me – again, instinctively – within five minutes (then spent the next three months doing every test possible to be absolutely certain he was right, which he was).

In less than a year, medically speaking, I’ve changed identities three times: for the first 8 years after my onset of illness, I was the difficult and noncompliant patient, the one who refused drugs and complained of side effects and demanded tests. The one with really strange lab results that made no sense. The one for whom conventional treatments did not work.

Once I was diagnosed, I became a medical curiosity – the patient with an illness so rare* that in med school, future doctors were told they would never likely see in their entire lifetime of practice. While this was interesting and the attention was welcomed after being dismissed for so long, it felt like forever before any action was actually taken with regard to treatment. And so much of this past year has been spent waiting, on hold.

And then before I knew it, I was scheduled for surgery. That was less than two weeks ago, but now? Theoretically I don’t have an illness any more. Whether or not all the wacky abnormalities that have been attributed to my illness will clear up still remains to be seen, but the big ones – the ones that could have killed me – seem to be a thing of the past.

* I remain convinced that hyperaldosteronism is not rare at all; it’s just underdiagnosed. I think I have enough to say on the subject that I could write a whole post on it – and I probably will! – but for now I’ll keep it simple: a $300 blood test that rarely gets ordered could probably save a lot of lives. Until the aldosterone-renin ratio screening becomes a standard part of the workup in EVERY patient with hypertension, we will never know just how common this “rare” disease is.

Happy dance.

If my left side didn’t hurt so darned much, I would be doing a big HAPPY DANCE right now. My doctor called me to tell me that I can discontinue my potassium supplements.

This is huge, people. For the past three years, I have steadily gone from needing one a day, to needing one every 4 hours, with the consequences of missing a dose including such things as heart arrhythmia, dizziness, muscle spasms, and numbness in my hands. I’ve had at times up to three different reminders on my smartphone for each dose, combined with a reminder to both my personal and my work emails – yes, I admit am that ditzy that I can’t remember to take a pill that essentially was keeping me alive. Blame it on the brain fog. These things have kept me alive, but they’ve also kept me kind of stressed out. The constant need to increase the dose, along with the lack of explanation as to what exactly was causing it, had me worried.

In other developments… my blood pressure is steadily coming down – still slowly, but consistently, and no longer jumping all over the place. I had a bit more energy yesterday than I have since the day of the surgery, so I forced myself to stay awake all day in hopes that I would get a real night’s sleep last night. Major fail – I still slept in little two-hour naps, which is becoming kind of frustrating but what can one do? I miss sleeping in my bed (which requires climbing a ladder, which is out of the question right now) and I miss sleeping on my side (which is downright painful right now, forcing me to sleep on my back).

The puffiness from the surgery is still there – even though I’m almost 10 pounds lighter, I’m still two inches wider around the midsection, making getting dressed a bit challenging. I’ve gone from wearing pajamas in public to wearing overalls or giant vintage dresses (the latter is nothing new, the former is an old habit I’m revisiting). In my well-heeled neighborhood, the overalls have gotten me some strange looks, but I’m quite enjoying them and will probably keep them in rotation in my wardrobe after all this sorts itself out.

Eating is still a challenge – my stomach is pretty angry at me right now. The CO2 from the surgery seems to have finally departed, thankfully, but I haven’t figured out what, and how much, I can eat yet. I had a couple of really good days, and a couple not so good. Perhaps the havoc wreaked on my stomach by the opiates has not yet passed… I’m hoping this is temporary and not a result of the surgery. I’ve heard from others who had stomach issues develop after surgery, but it seems to be the exception and not the rule.

But I’m taking the good with the not-so-good. Because, really? No more potassium pills?? Words I never thought I would hear.

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.

Food.

I have not been able to eat much since the surgery – in addition to the hiatal hernia I was born with, it feels as if the residual CO2 has filled every possible space in my abdominal area, and I have felt uncomfortably full all the time since Thursday. But I also know that I have to eat something, just a little even, so on Monday my dear friend C accompanied me on a little shopping trip to Whole Foods.

Making the right dietary choices has been critical to managing this disease from the very start. Because of the insulin resistance (IR) it causes, I am extremely sensitive to carbohydrates; as I often jokingly say, I look at a potato and I gain five pounds. Because sodium exacerbates water retention and increases blood pressure, I avoid restaurants, prepared foods, and any situation in which I can’t know with full certainty that my food has been prepared without any added salt.

Except – now I don’t have to watch sodium. Before I left the hospital, my surgeon told me not to worry about that any more. In fact, some doctors actually encourage patients to eat high sodium at all meals for a short time post-adrenalectomy, in order to get the remaining adrenal to “wake up.”

As for insulin resistance, some studies, such as this one, posit that IR in PA patients will reverse within 6 months of treatment, whether surgical or medical. This is a little less cut-and-dried than the sodium bit; no one can really advise me as to when/if I can be more lenient about carbohydrates.

So, it’s back to a routine I’m already all to familiar with: my body, my science experiment.

I’ve already lost seven pounds since the surgery, so I’m not all that worried about weight gain (and its undesired dangerous side effects of increased fasting blood sugar and elevated BP) in the short term. In addition, when I’m not feeling 100%, my favorite food to eat is rice. So, I’m allowing that. In addition, since my digestive system seems to have gone to sleep, I’m giving myself a rest from all animal proteins for the time being – no chicken, no fish, no eggs until I feel a little more normal. Nothing against these foods; they just feel a little heavy for me at the moment.

My first day out of surgery, my total food intake was a half-cup of basmati rice. The next day, a half avocado. The day after, another half avocado. Which brings me to Monday, my day of shopping.

I began my day with 1/4 cup of plain, whole-milk Greek yogurt. Around noon I actually started craving “real” food for the first time since the surgery – specifically, Indian food. I pondered this a bit and while it was definitely curry that was on my mind, it was also salt that I was craving. So, when we got to Whole Foods, I decided to do something I rarely do – check out the prepared food offerings. And when I saw Curry Garbanzo Tofu soup, I got brave and took home a small container. More a stew than a soup, it went over a bit of jasmine rice and was absolutely the most delicious thing I had tasted in many months.

I half expected my usual symptoms from sodium intake to come on overnight – headache, irregular heartbeat, weight gain. I also expected to feel like I was going to crash from the carb intake within 40 minutes of eating, even though I only had a small portion. But – nothing. In fact, I was down another pound in the morning.

Tuesday I had my first post-op follow-up with my nephrologist. I told him what the surgeon had said, to not worry about sodium, and that I felt that it was still unwise. I also told him what I had done, to no ill effect. His advice was that this was entirely appropriate – don’t go out and eat a bag of potato chips, but don’t stress out about every bite. I can do that.

I’m not entirely certain where all of this will take me – as mentioned before, I have hopes of being able to cut back on the animal protein as much as possible since I hate cooking it and don’t enjoy eating it. If the insulin resistance truly does go away, and Every Single Carbohydrate doesn’t go straight to my belly, perhaps this can be done. I know that my dietary intolerances to lactose, fructose, and gluten are an entirely separate issue and will not likely be influenced by my lack of a bad adrenal; this I don’t mind, as I very strongly believe that sugar and gluten are not “good” for anybody, and would never go back to eating them. So, as I continue to decline your offers of cookies or bread, please don’t take offense.

Right now, I’m just excited at the possibilities that have opened up just knowing that I can eat something that somebody else made. And thrilled at the prospect of Indian and Thai and Japanese food being a part of my life again.

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.