Pages

Friday, April 29, 2011

I love my liver

One of the many complications I've learned regarding this disorder is that is can cause your liver to swell, develop cirrhosis and possibly cancer. Yay. There is a liver ultrasound in my very near future, as recommended by my doctor and I'm more than likely just fine.

But here's a little catch. Since I was about fifteen, I've had a mysterious recurring abdominal pain. It's always in the same place and it's always brutally painful. I go to an emergency room every time it occurs as it's usually accompanied by cold sweats, lightheadedness and nausea...in other words 'shock'. It happens to me about every 2 years and there are sometimes 'twinges' in between the events. They normally last about 3-8 hours though on one or two occasions, the pain only subsided after twelve hours.

I was fifteen the first time it happened and my family rushed me to the military hospital at the post we were stationed at. I laid down in the waiting room, curled up into a ball with searing pain so bad that I could not stand up. Indeed my father had had to practically carry me to the car. After hours, a near appendectomy, a pelvic exam and an ultrasound, the doctor raised his shoulders and said to my parents 'female problems'?

It was suggested I follow up with a battery of tests to rule out more serious issues like ulcers or cancer. I took an Upper GI test and a 'barium enema' and that was not so much fun at all. Finally, the gynecologist told my parents he thought it was possibly an ovarian cyst that hurt more than normal because as he put it, 'she doesn't have much room down there'.  He promptly subscribed birth control pills.

Over the years, despite being on 'the pill' the pains recurred. I saw a gastro doctor and he told me that he thought I had a 'colicky bowel' and that if it happened again, I should go to the emergency room which I had already been doing. A mere five years ago, in Malibu at the ER, I was given 'belladonna' to 'relax my intestines'. It didn't help.

So, now, I sit here reading about the liver complications of this disorder. And, frankly, all my episodes of 'abdominal pain' or 'colicky bowels' are textbook for liver swelling and cirrhosis. Which is a frightening thought. But at the end of the day, I don't know if those pains can be attributed to my liver. I don't even know that they mean that there's anything wrong with my liver at all.

Maybe, just maybe, my liver was just trying to warn me, like a little Paul Revere bearing a sole torch, warning of what could be coming. And I do believe Paul Revere lived to ride another day.  In fact, he even went on after the war to manufacture metal and iron bolts.

http://en.wikipedia.org/wiki/Paul_Revere#Later_years

So I'll leave you with that little bit of 'iron-y' ;) and give you a break from my puns and metaphors...for another day at least.

Thursday, April 28, 2011

Looking for others in San Francisco with Hemochromatosis

I have posted in the Hemochromatosis online support group on Daily Strength (.org) and scoured the web but have not found a support group or any activist group promoting awareness of this disease. I have found the Iron Disorders group but that covers a lot of territory and they don't seem to organize groups.

So, I have posted on craigslist to find some information.

http://sfbay.craigslist.org/sfc/grp/2351576057.html

Please forward this link or this website to anyone you know with this genetic disorder.

Wednesday, April 27, 2011

Diagnosed a week ago


Today, I started my first phlebotomy. But, wait, hold up...let's back the train up a bit and I'll give you some context around why I'm participating in a strange, medieval-like blood letting ritual.

For years now, I've been feeling ill. Really ill. The kind of ill that gives one pause to examine a life and recommit to pushing new boundaries. And also the kind of ill that just standing up can feel really painful, and enough to drive one back to bed or the sofa curled up in a ball.

My story is just like many people with hemochromatosis, with the mysterious ailments mixed in with others that are fairly common. Except that, it's one thing to develop one mysterious or premature illness. It's quite another to experience a 'cluster' of them. And so my story involves overwhelmed doctors who were beside themselves with concern but unable to solve the mystery. My story also involves specialists who provided pieces of the puzzle. And even one or two arrogant doctors who lectured me on hypochondria. (Yes I'm very tempted to call them up and chew them out but not sure what good that would do, better to put my energy to positive things like learning about my condition).

I can't really describe how this feels...validating, upsetting, shocking, reassuring, a relief? It's all these things mixed into a ball right now until I have time to really digest this. And in reality, I'm not done yet. I have to get the ultrasound for my liver to check for cirrhosis. And maybe an EKG for my heart.

But assuming my ferritin levels have been low enough not to cause that kind of damage or that the entire length of my life so far, 40 years, hasn't been long term enough to cause it either, then I will be fine.

But others are not. To be honest, a diagnosis of this at 40 is very positive. Most women don't even get diagnosed until their 50s or 60s, so I've read, at that point maybe too late to do something about the myriad of complications high iron causes.

I have found very little literature or awareness campaigns about Hemochromatosis in the USA. Most of it is in Canada or Europe. I wonder why since it's very common - like 1 in 200 people. It seems like we talk a lot about heart ailments and diabetes in this country as a leading cause of death, and as a consequence of poor eating habits.

Yet, if this disease is so common, and no doctors seem to do any routine blood work for high ferritin levels, then how many of those 'leading causes of death' are attributed to Hemochromatosis and I add *preventable*?