Sorry I’ve been out of touch (my adrenal adenoma is to blame)

by Stephen Cobb on June 4, 2013

Just a quick post to let folks know that I came through my recent medical procedure unscathed (apart from a small hole below the belt line that is healing nicely). For the sake of other folks out there who may need to undergo adrenal venous sampling I am writing up the procedure, the reason for it, and the possible long term prognosis, which is very good.

I also wanted to extend a broad apology to those friends and family with whom my communications in recent years have been less than stellar. I have been beating myself up for some time over this, but recent medical adventures have led me to see things differently:

  • I have been feeling seriously fatigued for several years now, leaving me with little energy at the end of the workday/week to reach out and communicate.
  • I assumed that this lack of energy was due to the demands of a stressful life (dealing with Chey’s disabilities, the aftermath of the 2008 financial disaster, the demands of a new job–on which I’ve been working many evenings and weekends, the stresses of moving 3,000 miles to a new city, and so on).
  • I also thought to myself: “this must be what getting old is like”
  • In fact, it appears that I have been suffering the effects of something called primary aldosteronism due to an adrenal adenoma, of which there will be more blogging later.

The good news is that primary aldosteronism–talk about a disease that needs a catchier name–can be treated and, in some cases, cured. That could mean I get back to 100%! Staying in touch will no longer be such a challenge.

I got the diagnosis in April, however it has taken me a fair amount of time to put the implications into perspective. At first I was hung up on the fact that this should have been diagnosed years ago. Right now I am focusing on the positive, the fact that it was finally diagnosed, and I have good access to some good doctors who can treat it.

Yesterday I took a big step toward treatment by undergoing AVS, which will determine if one of my two adrenal glands is responsible for pumping out excessive amounts of the hormone called aldosterone. Thanks to a CT scan I already know that there is a lump, called an adenoma, on one of those glands. That lump could be the culprit. Oddly enough, that condition, an aldosteroneĀ  producing lump on an adrenal gland, is called Conn syndrome.

I plan to write up more of what I have learned about primary aldosteronism. Readers and Googlers may benefit from this because, from what I can tell, this is an under-diagnosed condition. For now, please accept my apologies for sub-par performance in the friend and correspondent department. I hope to be able to do better.

I leave you with a list of primary aldosteronism symptoms that I have been experiencing, some for many years:

  • High blood pressure not well controlled despite multiple medications
  • Chronic low potassium or hypokalemia
  • Abnormal heart rhythm and atrial fibrillation (my heart sounds like my dog’s)
  • Sodium retention, increasing blood pressure, causing swollen ankles, legs
  • Muscle cramps and muscle weakness
  • Decreased cardiac output associated with elevated renin levels

If I am lucky, my AVS results will indicate than an adrenalectomy can eliminate these symptoms. Stay tuned!

 

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