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.
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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.