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.

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