Eight months after surgery

It's been eight months since my adrenalectomy. Many people in my NORD Rare Diseases support group have contacted me for status updates. I figured I'd post more here so others not in the group could benefit.

As I mentioned in my last blog, I noticed some effects immediately after surgery. As exhausted as I was in ICU- I still noticed the "brain fog" was gone, and this made me ecstatic. While I was on some heavy duty drugs, I felt I was clear in my thinking and actions, and pretty alert considering I just had major surgery. My blood pressure was all over the place until 2 days later when it dropped lower that it had been in seven years. I was released from the hospital at that point.

Other changes were gradual, for example the polyuria was gone practically immediately. I started having quick bursts of energy within two weeks and got out of the house for a day trip. I fatigued easily though, so I would suggest limiting your physical activities for at least three weeks. As far as steps, do so but slowly. Don't think you will jump back into normal for at least a month.

I felt stronger within a month when I gradually resumed my work out routine at the gym. I no longer felt "confused" or whacked out, a side effect I suffered with a lot for the past two years. I also noticed the migraines had disappeared, as did the dehydration and muscle spasms at night.

Eight months later, there are some concerns that I plan to discuss with my doctor. Mainly- there is still some fatigue. As well, I have a difficult time with coffee (this stinks because I love it so...); I don't process sugar well, I crash immediately on it just as I do with wine or alcohol. My other adrenal seems to still be in recalibration mode, but certain stimulants do not take well. The fatigue is a major concern however. If I am physical and use a lot of stamina for work or other, I'll be ok, but usually have to rest a lot the next day.

Unfortunately, there is little to no information on living with one adrenal gland which frustrates me. There are many of us that have only one, and although we can live normal lives, there are things we should know, for example how long does it take for the remaining gland to recalibrate and assume the functions of the missing gland.

I plan on asking more of these types of questions at my doctors appointment next week and will report back what she says. As far as my surgeon, he told me in September that I was "clinically" cured.

Regardless of my lingering side-effects, when people ask if the adrenalectomy was worth it, I still say- absolutely. Everything about my demeanor has changed for the better, and I almost feel like my old self again, something I haven't felt in over 7 years. Having your electrolytes in balance can seem like the difference between day and night.