Friday, July 30, 2010

I know you don't read my blog to hear about boring medical conditions...

It's been a little slow-going around here with furniture projects, as I've been in and out of doctors offices for the past month. As a nurse, I can't not mention this if it helps even one person.

It still feels like a dream, but after a 10-15 year battle, I've learned that I have hemochromatosis, a condition where the body doesn't know when to stop absorbing iron. Excess iron oxidizes and damages the organs, unless you know you have it, and then it is treatable.
 
Hemochromatosis is most common in people of Northern European decent. Obvious symptoms don't usually occur until it's too late; when the skin turns bronze and the heart and liver damage are extensive. But, there are early symptoms, which include fatique, depression, joint and abdominal pain. I had every one of them for the past 10+ years, but they were vague. Feeling generally icky became my new normal, and I pushed myself harder to prove it was all in my head. I'm also a happy go-getter inside an iron-overloaded body, so that prolonged my denial and my diagnosis. But, every year my inner voice would nudge me to try a new doctor, and I was easily convinced with each one that it was highly unlikely I had it, because that's what I wanted to hear. So, I stuck my head back in the sand until the symptoms begged me to try a new one the next year. And the next.

My symptoms were the ones they heard day in and day out. The same tests were run over and over and over. Insanity. The only possibility they could come up with was hypothyroidism and anemia. Everything was normal, especially my impressive iron level. "You're definitely not anemic!" is what I  heard when they called to give me the 'good' news. I now look back and wonder where these docs went to medical school. I looked healthy. Everything was normal, except for what they weren't checking for; what I ASKED them to check, but they didn't. Finally, I gave up.

I owe my diagnosis to my sweet friend, Karen, whom I shared all this with one evening. She urged me to try one more time. I was done trying, but she sent me texts until I made an appointment with her doc, who humored me, and ordered the tests I asked for. I cannot express how grateful I am for her. She is an angel to me.

Hemochromatosis is the most common genetic disorder, yet the most under-diagnosed. It shouldn't be this way. I am petitioning health care providers to routinely screen for these simple lab tests that would help so many people - ferritin, total iron binding capacity, and transferrin saturation.

I hope to put this genetic condition on the map. And to encourage everyone that if your body is telling you something, there is a reason. And to keep at it until you find out what it is. I start treatment in a few days, which is to routinely take off a unit of blood. I can't wait to be anemic.

I do not know the extent of the damage for me, since I have further testing to do, but a preliminary liver ultrasound came back abnormal. I trust the Lord with the outcome and with my life that He has perfectly planned. All I know is that I have a lot of reasons I need to get healthy and stick around...The Little Women, and of course, Romeo.

9 comments:

Sparks Family said...

You are in my prayers! I too have had an inner voice but in regards to my son. he was recently diagnosed ADHD. While it is not a life threatening disease, it was slowly beating down on him. Also my daughter and her ears. She finally had tubes put in her ears at age 4, when I finally found a doctor who would listen to me. Wow has her speech improved! Not to compare these with your struggle, I only wanted to mention that inner voice (light of Christ) that gives us the wisdom to know when something truly is wrong. Thank you for not giving up!

Kacey said...

Oh, Christa - I am so sorry you had to go through this! What a battle! I'm glad you have an answer now and at least know what you're dealing with. Despite the negatives, that must be such a relief. You'll be in my thoughts!

Karen Jeffries said...

I'm proud of you for bringing this disease to the attention of others. And I'll be praying everyday for your health and that you feel better day by day.

Love, Mom

Suzanne@Meridian Road said...

Now you know, and you can treat it. It stinks that it took so long to get a diagnosis., but now you can move forward from here on out. I'm so glad you listened to your friend.

I have very little respect for most doctors. So many of them seem to think that they can fill in the gaping holes of their knowledge with ego. Why not just listen to people, and BELIEVE them? I know they aren't all like that, but I used to hear stories like yours on an almost weekly basis. It really disgusts me.

Erica said...

Oh. My. God. I am literally in shock - have just googled this like crazy and I am going to print out the pages and take them to my doctor.

I have been taking medication for depression for two years now with no improvement - I tell any doctor that will listen that I am not sad, i'm tired. EXHAUSTED. My fingers are swollen from arthritis, my energy levels are zero, but blood tests always come back normal. grrr!

I have never heard of this disease before but I am going to kick and scream until I get tested for it - I want my life back! And my littlies want their mum back!

Thank you so much for sharing your story, I am sad that you have this diagnosis, but glad that you have this diagnosis and i bet you know exactly what I mean.

xx

Cassie @ Primitive & Proper said...

christa- i am so sorry that you have had to go through all of this. i am, however, grateful that there is finally a diagnosis and steps can be taken to get you feeling back to normal and not icky all the time. i keep you in my thoughts and prayers.

Anne and Whitney: Up, Down and All Around said...

oh christa - i am so sorry to read about your struggles with your health! i am relieved, however, that your friend pushed you to try just one more doctor, and that this doctor listened to you (and your inner voice) and performed the necessary tests. i hope the treatment is as easy as you stated (having a unit of blood drawn off routinely) and that there is no damage that cannot be reversed!!! so happy you have a diagnosis, but sorry for all you have gone through! thinking of you!

Lori @ Projects Plenty said...

I am sorry you have suffered so much. It has to be some relief that at least now you have an answer and treatment options. Thank goodness you are such an intelligent and informed person... you most certainly helped save your own life. I have every confidence that you are going to be just fine. My thoughts are with you.

shelly @ the familyblt said...

I will say a prayer for ya sister! I'm so glad you have a diagnosis! I pray you feel much improved soon!

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