HES/Heart valve issues

Dear friends,
I don't even know where to begin other than to say that I'm requesting prayer. You all have graciously accompanied me in my journey and I'm thankful for that. Your friendship and prayer support mean more to me than you guys know. I'm not one that hides what's going on with me, so I'm writing a detailed note so that you understand the "why" behind my disease and prayer request.

Today I found out that one of my heart valves is leaking. I had an echo cardiogram in February and it was mostly "normal" so this has progressed since then. I've not been feeling well for around 1 month and have had several symptoms, so honestly I'm not at all surprised by this finding...however, I won't lie...I do feel a bit numb today with this news and am desperately clinging to Jesus as I sort through this. I'm being referred to a cardiologist and will update you as necessary.

My disorder, Hypereosinophilic Syndrome (HES), is known to attack organs. So far, only my gastrointestinal tract was affected up until about 14 months ago (8/09). It was then that I started wheezing for the first time ever in my life so that leads us to believe that my lungs have been affected. Then in February of this year a heart murmur was detected for the first time. Like I said, about 1 month ago I started having problems wheezing again and had a weird heart beat. Brian would listen to my heart and could hear the murmur and knew that it was louder. I could also feel it and sometimes I can hear it in my head...even today.

The concern with this is that HES is known to cause heart damage and almost always starts with the heart valves. My doctor's are doing everything they know to do, but the reality is that HES is so rare (as of now there are only about 250 reported cases of HES world wide!) and poorly understood so there are a lot of unknowns. What we do know is that heart problems are the leading cause of fatalities with this disorder. Sorry to bear such ugly news, but I'm a realist at heart.

Eosinophils are white blood cells that react to infections and allergies in the body. They are released and fight off those invaders and then they go away. Up until now I've been tested several times and have no known allergies or infections that are causing my over abundance eosinophils. Therefore, it is assumed that I have an autoimmune disorder...meaning that my body is fighting itself for no known reason. Eosinophils release granules in the body and it's those granules that damage the organs. They harbor in the tissues and they stay there a long time and cause inflammation of those tissues. This is why I have stomach ulcers all the time, it's also why I wheeze and now (I'm assuming because it's not yet confirmed) that they've caused the damage to my heart.

There are meds that help to decrease the eosinophils and that's why I'm currently on a certain chemotherapy. However, my chemo has now caused problems with my blood. My red and white cells are pretty much bottomed out. My doctor lowered my dose of chemo and put me on iron since I'm now anemic hoping to increase my blood counts a little bit.
I'm kind of in a catch 22 in that we don't want the count too high as it will allow my disease to progress faster, but we don't want them too low either!

Okay, so now you all see why I need prayer. I'm bummed today, but I will jump over that hurdle and get over it. I know that the Lord is in control, that He has ordained my steps and that He has my best interest at heart. I admit that the enemy would really like to take hold of my thoughts, so please pray that I can take those captive and live for today. Please pray for healing, wisdom for my doctors and pray for our marriage as this is sometimes very difficult on it. I also need prayer for energy and physical strength as this has made me really tired and weak. As of right now we haven't told the kids anything so pray that they have understanding and little or no fear and that we have wisdom in what to say...if anything...

Thanks for your love & prayers and for reading my very long note! :)

In Him,

~Heather


***It's been awhile since I've written an update on here. First let me say sorry about my book review. It's obviously not going along like I had hoped....but, I will finish it! I'm determined! However, it will be at least another 2 weeks before I start on it. In the meantime, I'm attending the True Women Conference in Ft. Worth next week and hoping that I'll have even more to share when I get back!