Friday 19 March 2010

One year after the surgery

March 16 marked my one year anniversary for surgery for Conn's (adrenalectomy). I tried to update my progress every few months, although I fell short of doing it quarterly as I had hoped to do. But life happened, which is a good thing, because for too long, it didn't.

The strangest part of my year anniversary was the euphoria I felt. Sure, I am thrilled to be a year out and cured of hyperaldosteronism, but honestly I didn't feel so completely healed up to this exact date. The weather where I live broke, always a help, and the sun replaced the dismal gray I had been battling during the winter. I had been dealing with fatigue here and there, but on March 16, I realized it was pretty much gone. Maybe those doctors knew what they were talking about after all when they told me recovery could take up to a year, (or so).

In all, the major symptoms never came back--the high blood pressure is gone, as is the lowered potassium. The flank pain or kidney pain is also gone as is the dehydration, migraines, confusion (brain fog) and paresthesia. I have more energy than I can remember in a long time and forget this sometimes when I go all day without taking a break. Just typing those words makes me smile :-)

The only thing I still struggle with is my late night schedule (as I write this at midnite). Due to the arrhythmia and cortisol rush I used to get around this time, my sleep schedule was disrupted and I became even more nocturnal than I already am. I am working to try and get my circadian rhythm back to normal, but this is hard. I am artistic by nature and have always loved the night. Now I am trying to love the early morning, without coffee, which is not the easiest.

In terms of living with one adrenal gland, my endo and surgeon both say there are no big problems to worry about. That may be so, however, I have noticed that my energy level can get maxed out quicker. Before and even early on with Conn's, I really pushed myself in my work, which is often very physical. I own a floral design studio that specializes in large events, and after several big functions last September, I passed out on site in a hotel. In my opinion, it seems plausible that it was related to having only one adrenal that was over-taxed. I also had a very hard time shoveling snow this winter. I am in good physical shape and should have been able to keep up with my 50-60 something neighbors!

In terms of the hormones, my God, they are thankfully regulated after 8 years of hell. I no longer feel like I am being attacked or defensive. This was compounded early on when I was involved in a relationship with a bi-polar man (a huge error on my part), which made my already compromised immunity system shatter. I am much calmer these days and feel like my old (new) self. Also, I didn't sweat for at least two years, which was the strangest thing. Now I really perspire and I love it.

A few more observations deal with caffeine and sugar. I can no longer regularly drink coffee. I have become extremely nauseous on several occasions and thrown up--which is a very rare thing for me to do. I have cut back to only 3 cups a week. Sugar is another thing that can affect me very quickly. I've always had sugar cravings, but I can't eat things like I used to. This is probably for the better in the long run. That goes with alcohol too, one drink feels like 3 sometimes, so I cut back to very little on the weekends.

In all, one year can seems like an eternity, but this one flew by. I remain steadfast in my opinion that having the adrenalectomy was the best thing I have ever done for my body. Not taking the 6-7 meds daily is a god-send, but mainly, knowing high blood pressure is a thing of the past is truly a great feeling.

If anyone out there reading my rantings ever has any questions about surgery or just wants to vent, I can be reached here. I started this site for that reason... I only wish I had a site like this to discuss the emotional side-effects I went through. There's so much more to Conn's than meets the eye.

Now, if we can only get Dr. Oz or some medical show to do a story on it. If I was mis-diagnosed for 7 years, I can only imagine how many other people are in the same boat. Our stories need to be heard!

Thanks for the read. I wish anyone with Conn's the very best and hope your journey ends quickly.

Peace~ Carole