Monday, February 25, 2013

Relaxin' in the Amyloid Oasis

As many of you know, I've been dealing with some really weird health issues since October.  Just a collection of odd symptoms including an enlarged liver.  For 2 months my internist told me that there was nothing wrong with me..."You're a tall woman and tall people can have larger organs."  I called it big lady, big liver syndrome.  When I went to her about problems with edema I'd been having, she told me that I should watch my salt intake.."There's a lot of hidden salt in things like Lean Cuisine."  Of course, she never ASKED if I actually ate stuff like that.  Anyway....

Thankfully, I got an appointment on New Years Eve with an angel named Connie Coburn, a nurse practitioner at OSU who actually believed me when I said something was wrong.

Well, after 33 blood tests since the start of the year, a liver MRI and an upper endoscopy, it turns out I have a rare blood disorder called Primary Amyloidosis.  Only about 3,000 new cases are diagnosed in the US every year. Basically, from what I understand, my bone marrow is soooo incredibly awesome that its producing antibodies that my body cannot break down.  Sounds great, right???  Super-duper, everlasting antibodies ready to protect me at a moment's notice???  Yeah, not so much.  Since my body can't break them down, they collect in my tissues potentially causing damage to heart, kidneys, liver, spleen, nerves, intestines, skin, tongue and blood vessels.  No mention of lions and tigers and bears but plenty of "oh my!"

My doctor, Dr. Edward Levin, who is equal parts saint and scientist, says the next steps are to have biopsies of my liver and kidneys...not to look for cancer but to take tissue samples to see how much damage there may be...and to complete an echocardiogram to see if there is any heart damage.  According to the amyloidosis website, the next step after that is to undergo treatment to stop the production of the antibodies, perhaps through chemo and stem cell transplantation.  The link shows a sample calendar of how the 5-week process will go calling out activities like "catheter placement" and "psychiatrist visit".  It says the process takes 5 weeks but can take up to 8 depending on how well the patient tolerates the treatment.  I told Al, "My goal is to be done in 4!"  :)

When I first typed amyloidosis into my iPhone, it autocorrected it to "amyloid oasis".  I kinda like that image better.  Here I am, relaxin'  in the amyloid oasis.  Bless you autocorrect.


Cathy said...

WOW-well I'm glad they finally figured it out and on the plus side-you're not crazy! Let me now if there is anything we can do-we will be thinking of you and wishing you the best! Love ya,

Anonymous said...

Yup, I can relate to the crazy comments by doctors. I am a Cardiac AL Amyloidosis survivior of nearly 8 years. Unfortunately, I was only 35 at diagnosis and the 2 years prior I was searching for answers. Doctors looked at me like I was Planters. Luckily, because of my age and health, other than the heart damage due to Amy, I breezed through my SCT and then another a year later. I did great for about 4 years before Amy reared her angry head from the abyss. Luckily, there are many drugs on the horizon and I am in a clinical trial for one. Hopefully my fight will not only help me but the thousands of others that will be diagnosed and those that are fighting this disease. I too attribute my healing to our Lord and Saviour, my optimism that He will stand with me, and as my faith has only increased. Best wishes and God Bless! Wendy Merk

kat4gators said...

Thanks for your comment. I will keep you in my thoughts and prayers. Keep me posted on how you're doing.