Newbie

[Guest guest]

Hello All,

I'm brand new to the group but I've been reading a lot of your stories and I'm sure you know how awesome it is to find out you are not alone!

I'm 40 years old and have been dealing with Hyperaldosteronism for the last 9 years. It all started with an ER visit 9 years ago for right lower quadrant pain. Lab was done, antibiotics were given and I was sent home. It was 3 weeks later that I went to my OBGYN for my yearly exam. When I told him I'd been in the ER w/RLQ pain he called and got the labs from the hospital. He seemed startled and said they never should have let me out of the hospital b/c my potassium was 2.6 (critical). This started the ball rolling for the next 9 years of changing doctors, med dosages, lab test after lab test after lab test with some MRIs and CTs thrown in for good measure...all to no avail.

In 2003 I was referred to a well respected Nephrologist/Infectious disease specialist (Dr. Tarek Naguib). Short version is for one year I ran a low grade fever, swelling got worse, caught every illness/infection/virus etc that went around and had no energy at all. I contracted some respiratory gunk and disjointed two ribs and broke another from coughing so violently for 3 months (poss Whooping Cough in retrospect). I also contracted viral meningitis that year and ended up in the hospital. The Endo I was referred to after Dr. Naguib moved said that Dr. Naguib had run tests on me that he had only read about in books. He never was able to figure out the cause...after a year the fever simply went away.

Despite some stable periods (maintaining my potassium level) with the help of 100 MEQ Potassium/day (effervescent...it isn't too bad after a while) in addition to Spiro/HCTZ 25/25 twice a day and Spiro 75 mg per day, my life revolved around my symptoms: severe/chronic fatigue, muscle weakness & cramps, headaches, confusion/lack of focus, mild hypertension, worsening vision, mood changes, insomnia, racing heart, palpitations, periodic low grade fever, flushed face, anxiety attacks and adrenaline rushes for no reason, and so many more. I got tired of so many doctors simply telling me "medically, you just aren't normal" that I just stuck with my primary physician until my potassium went haywire again and she referred me to a new nephrologist, Dr. Rashmi Vijay. Dr. Vijay immediately suspected an adenoma but the MRI came back with no evidence of one so she did what she could just trying to maintain my levels and managing

the symptoms. It hit me then that I would be dealing with this for the rest of my life....when I say "hit me" I mean like a Mack truck that hit me and backed up over me and did it again.

Oh and a sidenote, when my potassium went haywire again and I had that MRI done, all they found were gallstones. I had worsening gallbladder attacks for the next several months then finally broke down and had it removed March of this year. The surgeon said most people have "pebbles" for gallstones...I had a golfball, literally. What did the surgeon say? "That's just not normal". I wanted to say DUH!!!

Finally, light at the end of the tunnel and some hope came this year. I was sick again with a low grade fever, swollen lymph nodes, etc. and since my doc was on maternity leave I went to my husband's doctor. He ordered a battery of tests including a CT scan of pelvis, abdomen and chest. Lo and behold...THERE IT WAS! The adenoma that Dr. Vijay knew had to be there. A tiny 12 mm mass on my right adrenal gland! Hallelujah! Dr. Vijay referred me to an Endo in Oklahoma City, he did all the lab work necessary for pre-op then referred me to a surgeon (urologist) that does Da Vinci Robotic procedures. My appt with him is December 2, 2010.

It's hard to grasp the thought of feeling good again. What will life be like when I don't have to get up 3-5 times a night to pee, when I will be able to go outside in the summer and mow the lawn without taking two days to recover? Life holds so many new possibilities....God is good!

Juli Pack