Although I am clinically "cured" of Conn's syndrome, I still have so many questions. I'm sure a lot of you that have taken this unexpected journey do too. It would be easy for me to walk away from the support sites and blogs in an effort to close that difficult chapter, but I don't think that would be the right thing to do. So, I will continue to write updates and post anything relevant to this disease I come across in hopes of helping others who deal with Conn's.
One question I have is fatigue-- I still have it here and there, and am wondering if it's authentic or depression related. I've had a lot on my plate with caring for an aged parent and the typical work/life issues, and so I wonder if it's simply stress related or due to having only one adrenal gland. The problem becomes convoluted in that for so long, fatigue was a part of my life, and I wonder if it is here to stay or just a lingering side-effect.
I seem to get more fatigued when it rains or the barometric temperature drops. Weird. If I do strenuous activity, I require much down time to recoup. I had anesthesia twice within four months which is also a concern. If anyone else has experienced this complaint after surgery, I'd love to hear about it.
A few other post-surgical observations are food/alcohol related. Sugar is a major problem--I can't process it well, same goes with alcohol. If I have a drink or two socially, it feels like three. This makes me wonder what role my mono-adrenal gland plays in this, if at all. Same with coffee, it can effect me badly with nausea and crazy jitters. As a coffee first thing in the morning girl, this one is the toughest, so I have limited it weekly to four cups down from seven.
As far as eating in general, this is weird, but I find I have to eat every 3 hours or I feel jittery or like I may pass out. These seem like good questions for my G.P. next week as I no longer have an endocrinologist.
To some, these concerns may seem mundane in comparison to the big pay-off that erased the larger, more life threatening symptoms. Before I was diagnosed, I could handle all of the above mentioned things far better, now I am expected to be super-woman according to my surgeon. But I'm not even close. I realize these are my personal, physical symptoms, I know not everyone who has been through surgery will relate. But, if you are reading this and can
relate, please, please, please... let's talk.
As far as living with one adrenal gland, all I hear from doctors is it's ok, don't worry, your other one will take over. But no where can I find long-term outlooks with living with one adrenal. What will happen when we age? I would really like to be educated now and know what could be around the corner.
Lastly, I wonder what it's going to take to get this rare little disease more attention
. In my heart and my head...there are thousands more Conn's sufferers who are being misdiagnosed daily (as most of us were initially). A friend who works at a hospital gave me a recent report on Conn's as an epidemic. And as usual, the final word is many doctors are unsure if it is or not. While there is a severe increase of sudden on-set hypertension in younger adults (ding, ding ding), doctors who are supposed
to suspect and check for hyperaldosteronism are not. And since it's such a tricky disease that takes prolonged testing, many (read: most) doctors disregard this and just don't--like mine. So where does that leave all of the Conn's suffers in the world? To the internet to self-diagnose, and if they are lucky like me, they may find a doctor who will listen to them. It's unfathomable to me that it has to be this way.
In the meantime, Dr. Oz may be receiving a letter from this ex-Conn's sufferer. I find it unlikely he will do a segment on Conn's because it's so rare, and he seems to focus on popular illnesses and conditions (like obesity). Again it's the catch 22--we need exposure to get more people checked, but who will take the first step? Well, you have to have hope, and maybe just maybe, if more people start coming forward to openly talk about Conn's, perhaps the major players will finally listen. And do more research.
As always, I appreciate your comments and well-wishes. For all of you out there living with Conn's, please know the positive has vastly outweighed the negative regarding surgery. I feel tons better and no more high blood pressure-which is huge. These little annoyances are small things compared to the endless gratification I feel daily. Please know there is life after this insidious illness.