Tuesday, August 26, 2008

She was a big boned gal

From Southern Alberta

You just couldn't call her small

K. D. Lang -- "Big Boned Gal"

It is official...I have a diagnosis. I have acromegaly.

What the heck is that, you say? That's what we said, too, when the doctor first started used the term.

Remember Andre the Giant? Robert Wadlow from Ripley's World's Tallest Man? They had acromegaly. This difference is that they developed the disease when they were children, which caused their haywire hormones to tell their bodies to grow without ceasing.

In adults, folks with acromegaly don't get taller, they just get BIGGER. Fat and puffy, bigger hands and feet (here's why you haven't seen in photos of me in quite a while). The copious amounts of steriods I have taken in the last 2 years haven't helped, either, nor has my inability to exercise. Acromegaly also causes enlargement of some facial features, ribcage, other places. And not only is your exterior growing but your organs can continue to enlarge as well, putting great strain on you heart and other organs. There are a myriad other unpleasant symptoms too. In me, it seems to be causing all of the sinus swelling, fatigue and immune system problems that have mystified my ENT and every other doctor I have seen for the last 15 years.

Acromegaly is rare, effecting about 1 in 25,000. It can sometimes be fatal if gone unchecked, and there are some scary things I am more at risk for now. I may have to have pituitary surgery, or may just have to take a very expensive injection every month for the rest of my life. We don't know yet.

Sound pretty terrible, I know, but despite all the frightening aspects of acromegaly I have to admit Tracy and I are so relieved. We were starting to lose hope; we've seen so many specialists and had so many false hopes dashed. To just have a name is a gift in itself, and the thought of a treatment that may alleviate some of my symptoms just sounds too good to be true. Does anyone remember the episode of the Cosby Show when Theo was diagnosed with dyslexia? His whole family celebrated because at last they had an explanation for his poor school performance and it was something he could receive help for. This is precisely how we feel, as odd as that may be. We have hope; something we have been in short supply of lately. And we have a plan, which both of us need.

When I was young my parents had a great book called "Grave Humor". It was filled with true, and hilarious, epitaphs. One of my favorites was "I TOLD you I was sick". We often joked it was the perfect motto for the headstone of a neighborhood hypochondriac. Now, eating my words, I feel like calling several physicians and others who have been both unsupportive and disbelieving and screaming that epitaph into their non-listening ears. Particularly those of us who are women have almost universally experienced being put down and ignored in the doctor's office, and I have sure had more than my share of that. It's nice to have confirmation for what my family and I knew all along...there really IS something wrong.

Another thought that plagues me is how lucky I am to have the resources and education to advocate for myself. The doctor who diagnosed me called me "politely pesky" and stated frankly that was the motivator which kept him on track in helping me. I reminded him that if I weren't "politely pesky" I would have given up years ago when one doctor in particular told me that whatever was wrong with me was in my head. I have had to be my own best advocate, with my very supportive husband by my side. I often wonder about all those people struggling daily with major health concerns because they do not have the ability to constantly push, call, write, and cajole until they receive help. Don't get me on my soapbox about the state of health care in our country...that's a whole other post.

As I type I am waiting to hear about an appointment at UVa with a pituitary specialist; please keep your fingers crossed that we won't have to wait months to get in. The waiting is what kills me...those of you who know me well that patience is not one of my virtues!

If you are interested in hearing more about this crazy disorder this is a great website: Overview.


OldOldLady Of The Hills said...

Well, Congratulations on finally having a diagnosis! I truly understand why you would be celebrating in the sense that as you said..There Is A Name for it!
I have such mixed feelings about doctors and how really dismissive they can be....Finding a doctor who stuck with you and stuck by you too....What a Miracle---ESPECIALLY today. May yoyr appointment with this specialist come through quickly, my dear.

Jennie said...

Glad you came by...I had a friend a while back who was diagnosed with acromegaly as an adult. Circumstances changed and I haven't seen her for a while. I'm glad you finally found out what it was, I felt the same when my doc diagnosed me with hypothyroid. Anything's better than feeling crazy and misunderstood!

Anonymous said...

Congrats! I always knew you were a sicko but I'm glad there is a name for it and that you are going to have a plan of action.

I know these years have been rough and I'm so glad that there is a light at the end of the tunnel for you and for the fam.

love, love, love you!!!!

Deana said...

I did miss this! How, I have no idea. Man. I'm glad they've found a diagnoses and I know you must feel better having someone actually understand what is going on with you but the worry still must be there.

I'll be sending you many many good thoughts and prayers.

Julie S. said...

Dear Amy,

As a fellow Acromegaly, I am truly happy for you and your family. I am 36 yrs old, have a 5 yr old son and a phenomenal husband who was and still is very supportive during my whole Acromegaly pre/post diagnosis. We live in Cornwall, Ontario Canada.
I was diagnosed with Acromegaly in July 2006 and was operated on in September 2006 via my upper lip...lots of nasal packing which was not pleasant. (By the way, I am a great fellower of Alecia's Blog hence where I found your blog)I had a 3cm macroadenoma. Unfortunately, I still have residual tumor. I have my monthly Sandostatin injection (20mg) that I have to take for life to control my GH levels. I had many episodes of weakness, nausea, fatigue post surgery. I was exhausted and frustrated as certain doctors could not explain my symptoms but I know that my body was adjusting. You know those hormones!!! It has been 2 yrs and I am on my way feeling better.
I am sending you lots of hope on your journey. From one "polite pesky" to another - Julie St-Jean

Anonymous said...

I am also an Acromegaly sufferer, diagnosed in May 2007 and had transphenoidal surgery in Sept 08, awaiting date for 2nd surgery as I had remaining tumour. Feeling good though. Good luck with your tests. Im a 41 year old lady with 3 young daughters.