Managing Loss - Finding a Champion

Little did I know at 65, that the onset of edema in my left ankle, would lead me through a two year journey involving 13 physicians. A diagnosis of acromegaly, (excess  human growth hormone caused by a  small benign tumor on the pituitary gland - affecting 60 per million). And, a couple months ago - successful brain surgery, to remove the tumor.

The brain surgery was, however, the least of it. An hour an a half, a day in the hospital, then back at the office on Friday. The killer part, the absolutely devastating, grinding part - was both the excruciating pain AND the daily emotional slog of dramatically reduced mobility. For a guy who carried a 175 pounds (or more) every day in the mountains in his early 20's, to be forced to go up stairs one step at a time - was equivalent to an emotional load that was simply overwhelming.

Add to that navigating: (A) Was it caused by an earlier back injury NO (2 Neurologists nerves to the leg), (B) Was it impaired kidney function? NO (2 Nephrologists (kidney)  (C) Was it rheumatoid arthritis? NO) (Rhumatologist- but who suggested acromegaly). (D) Was it impaired heart and lung function, YES (2 Cardiologists - but for the wrong reasons) (E)  Was it lung function and sleep apnea YES (Pulmonologist (Lungs) who saw throat constriction and high pulmonary pressure but from the wrong source - and suggested acromegaly. (F) Was it acromegaly YES (2 Endocrinologists and a huge bank of tests) Finally, three Neurosurgeons (Two who did 3 of these surgeries in the last two years, and One who does six of these surgeries a week (guess who I choose?)

One key to both the health care navigation nightmare, AND to managing the emotional devastation of the loss of mobility, was  having an  incredibly supportive wife/partner, a primary care physician who made referral after referral, as the pieces came together.

Finding a Champion Ultimately, a single cardiologist - became a fantastic acromegaly detective, and champion. (we were on the phone together several times a week for months). One thing that drove his inquiry, was reading the research I provided, and realizing that many of the heart, lung, and debilitating side effects of acromegaly are permanently reversible - if you can identify, locate and remove the benign tumor.

This was a real object lesson in patient empowerment: doing massive web research, building a fully informed team (everybody got all of my current and rapidly changing test results, CAT scans, MRI's, and medical records - I felt like a bicycle courier) and finally - building and understanding a highly focused diagnostic, risk managed, surgical plan of care.

Bottom line: It all wouldn't have happened unless several physicians became real patient care management partners & champions. They welcomed my full active participation, research, document management. Ultimately they wouldn't wouldn't take no for an answer.

Have you had some serious slogging to do, with both physical and related emotional baggage that responded to your active participation in the management of your plan of care?

Comments

[Trys]

Jon,

You did an amazing amount of slogging by the look of it - well done. I've just been diagnosed with Acromegaly - so I have the journey ahead of me. Your words are of real encouragement to me, and they will be to others too I'm sure.

I've added this to my acromegaly diary site which lists other acromegaly blogs too.

All the very best,
Trys