Two months (and a couple days) post-adrenalectomy.

Hard to believe it, but my surgery was October 13 – that was over two months ago! And even though I’ve hit a bit of a bump in the road, I can still say with absolute certainty that it was the right decision. Not that I ever really had any doubts.

The good: The blood pressure remains in the normal range, so much so that I don’t really bother to obsessively track it as I once did. Next month I’ll be getting some bloodwork done to check the other stuff, mainly potassium, more in the name of science and documentation than to check for anything that may be amiss. Because really, the best test of potassium levels for me is headaches and muscle spasms – if I don’t have those (and I don’t, not a single one of either since the surgery) then I know everything is fine.

The bad: I’m still dealing with lingering pain at the incision sites. It ranges from dull-and-mostly-annoying to occasionally bringing a tear to my eye; when my doctor asked me to describe it on a scale of 1 to 10, I gave it 3 for actual pain and 6 for the annoyance factor. I’ve been getting it acupunctured, which seems to help. I was also given the option of an injection into the muscle for pain management – eep! You know, I’m fine with the acupuncture needles, but that… just sounds like a last resort to me, so I’m  not going there. Yet, anyway.

The… interesting: Very little is known about living with one adrenal gland, so I’m sort of keeping track of things that have changed since the surgery that don’t have a direct correlation to the renin-angiotensin-aldosterone system. Here are a few:

  • Weight loss. I’ve heard from others that they lost about 15 pounds almost immediately after adrenalectomy; mostly due to the elimination of salt and water retention. But most of them were overweight to begin with; I wasn’t. I’ve lost close to 10 pounds; to do the math, this is 1/12 of my pre-surgery body weight. I’ve also lost half a shoe size; again, I’m guessing this was from edema of some sort. But the oddest thing? My belly is nearly flat for the first time in my life. Even at my thinnest – 89 pounds back in 1997 when I was first sick and nobody knew why – I had a pot belly. Even as a scrawny little kid, I had one. Now I don’t. Of course this makes me wonder if I’ve had PA for much longer than originally suspected.
  • Eating. After a very long time of eating next to nothing at all because the sodium content made me so sick, I’ve been slowly introducing more… normal food back into my diet. It’s been hit-and-miss. I’ve eaten salty Indian restaurant food a couple times and been just fine. I’ve eaten salty Japanese restaurant food a couple of times and gotten really sick afterward. I think I know the culprit, and facing this kinda makes me want to cry: soy sauce. Specifically, soy sauce made with wheat, which is what is most commonly used in this country. While my tests for celiac were negative and I’ve always operated on the principle that I am gluten-intolerant but not true celiac, those tests were never accurate since I was already gluten-free when my biopsy was done. But my Japanese restaurant encounters have each resulted in full-blown celiac-like symptoms, so I think that kind of says it all. The other possibility is that I’ve developed a soy intolerance. Either way – good times! Only, not.
  • Caffeine, carbohydrates, alcohol: Another post-adrenalectomy patient has written of issues with hypoglycemia as well as caffeine and alcohol. I’ve dealt with hypoglycemia since childhood and have been able to manage it pretty well since I don’t eat sugar and wheat to begin with – simple carbs are the worst thing for hypoglycemia. Since the surgery, I’ve eaten rice and potatoes in small quantities and had no problems, whereas before the surgery eating either would have put me into a food coma even at small amounts. My response to caffeine has been unpredictable – sometimes when I really need it to pick me up, I can have a cup of coffee and still feel like I could take a long nap directly afterwards. Other times I’ll have a half-cup and feel like I’m bouncing off the walls. Green tea seems to agree with me far better, so I’m drinking more of that and less coffee. As for alcohol – I’ve been scared to go near the stuff ever since I had a bad reaction to it last summer during my brief experiment with spironolactone. But I’d like to join in the holiday festivities of the next couple of weeks, so perhaps I’ll have more to say on the subject soon.
  • Acne: My adult-onset acne issues seem to have relocated from my face and back, to just my back. While I was hoping for this to vanish completely, hey, I can live with this. I still think there is lingering hormonal stuff going on and am hopeful that time will take care of this.

So… all of that to say that the good still continues to outweigh the bad. The biggest challenge is navigating the unknown, which I suspect I’ll be doing for quite some time.

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