#34 - My Best Advocate

It's weird, after having Addison's for nearly ten years, I still had such high hopes that a miraculous reversal would one day take place. It seems that most people who are battling a medical condition have hopes, either deep down or close to the surface, that their condition will somehow disappear. For my situation, I have other medical conditions that I will try writing about very soon, but everything is extremely complicated by the Addison's.

But, this month I went for an updated MRI of the abdominal area. Oddly, I felt greatly surprised to see in black and white the print on the radiology report stating that my adrenals were completely shrunk from atrophy. My little adrenal glands are completely shriveled. My beautiful grapes are now raisins. Seeing those words about complete atrophy made me truly confront that there is not any chance that my adrenals will suddenly start functioning again, like an old factory that is brought back to roaring life. The factory has shriveled into nothingness.

Actually, I've had conditions much more serious than my Addison's disease, but the Addison's is like a blanket of glass shards...one wrong move and you're in trouble. I've battled other medical issues and adrenal insufficiency is always, always, always a concerning issue.

Even though I did not get the miracle of adrenals suddenly regenerating and getting back into action, I've encountered numerous miracles in other areas that I would not have had a chance to see if I'd not had Addison's.  My first major surgery after being diagnosed with Addison's was a risky cardio-thoracic surgery to decompress the subclavian artery. The diagnosing vascular surgeon came into my hospital room to give me the news of their finding and to discuss surgery. Of course, I needed immediate surgery as I was in danger of either an aneurysm or a pulmonary embolism because this artery was severely compressed. At my neck line, anyone could see the puddle of blood backing up. I was often gasping for air because of the loss of blood flow to my upper body. It was not a pretty sight.

The surgeon explained a tiny bit of the surgery I needed...I would need to have my first ribs cut out, the anterior and middle scalene muscles removed from my neck, scar tissue scraped off the artery and nerve bundles...it went on and on. High surgical risks were involved for a "normal" individual with this cardio-thoracic surgery. This vascular surgeon came into my hospital room to deliver the bad news to my husband and I, "You will have a difficult time finding someone to perform this surgery because of your Addison's, most surgeons would not want to touch you with a ten-foot pole. This surgery creates more litigious doors than open heart surgery, so your situation with adrenal insufficiency definitely creates additional risk." This vascular surgeon was calm, kind, honest and terrified of my disease causing a smudge on his surgical record. I was discharged and in mourning over being forced to continue suffering with my dangerous vascular condition because the surgeon was too terrified of Addison's to do anything about it.

Thankfully, soon after, I did find a brave, intelligent and talented vascular surgeon in Houston's Medical Center. Before long, I was lying in the Heart and Vascular Institute section of the world-renowned Hermann hospital with my body sliced and diced, then sealed back up with tubes running out of it everywhere, but the invisible strangle-hold that had been griping my neck for so long had been significantly alleviated.

The entire process had been an emotional roller coaster. Immediately before surgery, our pastor showed up to be with my husband and I in the surgical prep room. They let him in because he was our pastor. A cardio-vascular anesthesiologist joined us. I was concerned, as most patients are with a major surgery that involves a rotating saw removing bone, so I asked the CV-Anesthesiologist, "Will I feel anything? Will I truly be knocked out?" The CV Anesthesiologist answered, "Yes, that's not the problem. You will be unconscious and unaware with no pain during surgery, but my main goal with your condition will be to keep you alive through surgery; it is a serious situation." My pastor's eyes widened; he took charge and hastily asked to be alone with my husband and I, then he held our hands and began a powerful prayer. A deep sense of peace came over us as the surgeons and surgical team gathered just outside the door. We all shared a grave sense of serious intent.

God did watch over me. I woke up from the surgery with an eyelid that would not open due to nerve damage during surgery; my diaphragm was paralyzed and this caused my left lung to collapse and even though I had drain tubes in my body, I still had a liter of blood leak into my chest wall. Recovery was certainly not a walk in the park. But, I survived the surgery.

More surgeries would follow, but the point is...I survived a very risky surgery WITH Addison's. Even so, the fact remains that it is more risky for an Addison's patient to undergo surgery than it is for the next person. I did endure more difficulties than mentioned here in the blog because of my surgery and recovery, and Addison's always created an additional battle. After the surgery, while in the hospital, there was a time when the ball was dropped and I didn't receive the proper stress dose which was still supposed to be at high doses and injected into my IV line. I won't lie, I had a full Addisonian Crisis IN THE HOSPITAL, charted as an Addison's patient and it still happened. If you are barely able to talk because of the severity of your surgery and surgical complications, it is not easy for the staff to distinguish the difference between you being a post-op cardiac patient or something weird, like an Addisonian going into crisis. My situation grew dire until the Chief of Endocrinology rushed into the room with his team and administered the proper post-op stress dose to coincide with the level of surgical trauma endured by my body. Yes, I discovered that recovery would be a long, long road.

Little did I know at the time of this surgery, in 2005, that I would be lying on different surgical tables throughout the coming years because of additional serious conditions needing surgical attention. Every time, Addison's added a dangerous dimension on top of an already intense situation.

I'm not a doctor, but I've sure been on the receiving end of all-things-medical for too many years; life has been my teacher. Therefore, I have personal opinions on these matters that come from a deep well of experience. A very deep well that I wished to have avoided, but here I am.

If you are ever put into the hospital for any surgery or illness, be sure to ask immediately for an Endo-consult so that they can do their part to help manage your care of Addison's / Adrenal Insufficiency while an in-patient. It is not advisable to accept an ordinary doctor's insistence that he is sufficient. If you do not insist on Endocrinology being a part of the team, then you might find yourself in a bad spot. Too many doctors do not FULLY understand this disease because they are too busy trying to understand their own specialty. Sometimes, the doctor brushes up on the overall definition of this condition, but it truly takes a specialist to get on the right track. Sometimes, it is a disappointment to discover the specialist is clueless, but it is your life we're talking about. Have your family/friend advocates on watchdog duty as well. My husband was my pitbull.

Still, even after all I've been through, it was rough to see the radiology report this month that verified my adrenals as being kaput. I had really hoped against all odds that those little glands would have perked back up and gotten back in the game. Since the hope of sudden adrenal gland "recovery" is no longer possible, I am thankful for medications that help step into the adrenal's shoes. Even though my adrenal glands have abandoned me, I am thankful to be pro-active and my own best advocate.



My Best Advocate