Friday, November 21, 2008

Antiphospholipid Syndrome

Ever heard of this syndrome? Yeah, me neither until I found out I probably have it. I wanted to wait and post this until I was 100% sure I had this syndrome but in talking with my wonderful doctor in Abilene the past few weeks and two doctors here, they are pretty sure that no matter what the results are in two weeks, I still have the syndrome.

Let me explain: After Levi died we were suppose to go get a battery of test run around 4 weeks after the miscarriage. Well as much as I enjoyed going to the hospital here and getting my blood drawn I put it off until 3 weeks ago. My tests came back two days later and as I sat across from the doctor, I had the same feeling I did right before we went in for Levi's sonogram that told us he was gone. I felt nervous and a little sick to my stomach. He told us everything looked good except for two things. My thyroid was WAY off (I've had thyroid disease for 6 years so I wasn't too alarmed by this) and that I showed signs of a disorder called antiphospholipid syndrome. Because I'm not the best at medical jargon I just copied the definition straight from the web.

Here it is:

Antiphospholipid syndrome
(APS or APLS) or antiphospholipid antibody syndrome is a disorder of coagulation, which causes blood clots (thrombosis) in both arteries and veins, as well as pregnancy-related complications such as miscarriage, preterm delivery, or severe preeclampsia. The syndrome occurs due to the autoimmune production of antibodies against phospholipid (aPL), a cell membrane substance. In particular, the disease is characterised by antibodies against cardiolipin (anti-cardiolipin antibodies) and β2 glycoprotein I.

As I started reading about this syndrome, I realized there were a few other side effects like early strokes and heart attacks before the age of 50. I was thinking to myself "you have got to be kidding me!" I called my doctor yesterday and he told me not to ever worry about that and that I should quit reading the info on the internet, I think I will take his advice.

As of this week my thyroid is back to normal with some adjustments to my meds (that was just FYI, in case you were interested.) The main problem here is that this syndrome causes me to miscarry babies. When we get pregnant again I will have to inject myself with Heparin everyday throughout my pregnancy and take baby aspirin. My chances then to carry a baby are still not 100% (which I guess they never are.) That's really all I know right now but this has definitely placed a burden on my heart.

Yesterday I had a pretty hard day with all of this. I left school early and today I "skipped" school to have some "me" time. I just got home from my outing and decided I should probably share what is going on. My heart has been so heavy for a lot of reasons. I decided to read all of the cards we had received after Levi and read the precious book that my sister-in-law made for my birthday with all of the emails we received after Levi. It was so encouraging to read some of the scriptures that people had written

"The eternal God is thy refuge, and underneath are the everlasting arms..." Deut. 33:27
"In all things God works for the good of those who love Him." Rom.8:28
"'For I know the plans I have for you,' declares the Lord,, 'plans to prosper you and not to harm you, plans to give you hope and a future.'" Jeremiah 29:11

There were so many more but I read over them and just clung to those words of hope. I thought about the fact that even though we had lost a son in Costa Rica we had gained faith, love from complete strangers, new friendships with other students that will last a lifetime, new perspective on how short life can really be, a deeper love and appreciation for our team, family, friends back home, our supporting churches and individual supporters and lastly a deeper sense of complete and utter dependence on God. All that in three months here in Costa Rica.

It's nice to know that on days like today when my heart seems worn, my eyes burn from tears, my body is tired and my faith seems weak that God is right there reminding me of what I've gained and that he will carry me as long as I need him too.

Thanks for reading. My hope is that this will explain more to some of you that might be wondering what happened (I was wondering myself) and to know what is going on in my heart at this moment. Blessings...

15 comments:

Kim, Aaron, Jake and Jack said...

Steph...

I have meant to write you an email for forever now...and I still need to do that. I have enjoyed keeping up with your sweet family via your blog. What a tremendous work yall are doing!

Since I haven't written yet, I do want you to know I am so sorry for your loss of Levi. We actually miscarried just a few days before yall lost Levi, and so my heart was very heavy for yall at the same time. I hope that yall are continuing to gain strength each day, and that you will be blessed in great ways in 2009.

Yall are doing such a good thing. Many blessings on you!

Love,
Kim, Aaron, Jake and Jack Watson

joyofcooking said...

You don't know me---but I know the Davidsons through our mutual friend, Rachel Henderson (we went to the same church in Nashville before my husband and I moved to Los Angeles). I feel like I was led to your blog today! Last week I was hospitalized with pulmonary embolisms. I am 25-years-old and have no risk factors aside from being on birth control. I am currently taking Coumadin and Lovenox injections and have blood tests pending to see if there is an underlying condition (such as the antiphospholipid syndrome). But I am facing the same situation as you. The minimum amount of therapy will be 6 months, but they are preparing me for a lifetime of anticoagulation therapy. And because the Coumadin is a known teratogen (causes birth defects), I will have to be very careful in not getting pregnancy until it can be planned. It is definitely a shock and I am still processing a lot of it!

I wanted to thank you for your encouraging words/verses. I needed it today. I hope you continue to find peace in this diagnosis. Continue the amazing work you all are doing down in Costa Rica and into Peru. I can't wait to see all that God has in store for your awesome team.

~Emily Van Voorhis
Los Angeles, CA

Candace J Banks said...

hey steph...i think i can be classified as the worst friend in the entire world...i don't know that there's enough grace to forgive such a friend as me who has 1. buried and unborn child, and 2.not contacted you to tell you how sad i am for you...to tell you the truth, i've "written" a thousand letters to you in my head...and nothing seems good enough...i pray for yall a lot, but i just haven't been able to write...i don't know what's wrong with me b/c i know the importance of reaching out to others who are going through a loss of this kind...so i ask for your forgiveness, my friend, my sister...

i want you to know that i love you dearly...i'm sorry to hear that you probably have apa...it's one of the many things that they've tested me for...the blessing is that having a diagnosis helps you to know what to look for, but it's also a curse (so to speak) b/c then you know what to look for...they never have figured out why i lost so many babies and so they didn't know what to do with me but wait & see (which is horribly hard)...so while i hate that yall lost levi, i am thankful that they have caught this now and will know how to proceed.

one of the things i have struggled with over the years is feeling like my body is "broken"...i mean, seriously, people have babies left & right with no problems, but my body likes to starve them and kill them off (wow, that was graphic--sorry)...anywho, what i have to remind myself is that i am beautifully and wonderfully made...GOD created me this way--in HIS image--HE calls me beautiful and that's what i am...so to believe any different would be to submit to satan & his lies. i hope you find this comforting and encouraging...

i miss yall and am so proud of what yall are doing...

love, hugs, kisses & blessings,
candace & boys

Vanessa said...

I think I am just going to have to come there so I can give you a HUG!!!!!!!! OH MY!
Jonathan and I have been praying for you guys.....we will continue to do so. You are doing good things in Costa Rica and God is watching over you. Since you mentioned Jer 29:11 I wont post it again here.....but know that it is true. We love you BUNCHES!

Bex said...

Just before I checked your blog the story from John 9 crossed my mind - almost out of no where. I was thinking of this bit particularly:

...but this happened so that the work of God might be displayed in his life. (john 9:3)

then i read your blog and felt so convicted that those verses were planted in my brain today for you.

i'm sorry about your diagnosis. that must be really tough to face. it seems unfair bc you are such an awesome mom and want to have an entire brood.

your blog is great. you are a beautiful and transparent writer. i've known you all these years and didn't know that about you! love you...

Becky said...

I was touched by your candidness. So glad you know when to take some time "off" to reflect and be blessed by the love of Jesus shared by so many. A verse I read this morning spoke to my heart. It is from Joshua 1:9, "Be strong and courageous. Do not be terrified; do not be discouraged, for the LORD your God will be with you wherever you go." His love never fails. May his richest blessings continue to flow to you and your family. Love you!

Olivia said...

Steph,

I have antiphospholipid syndrome as well. But I nearly forget it in view of having Lupus too...it is almost like I don't remember but for the fact that I take coumadin for it. It is actually not as bad as you would think at all. They can regulate it with oral medications (coumadin, warafin) that will help thin or thicken your blood. Pregnancy can be aided with shots (I would go with LOVENOX NOT HEPARIN!!!!!!) that will protect and help the baby. It stinks, but there is nothing a mom wouldn't do for their baby...it is worth it. You're not going to die if you take care of yourself and take the medicines regularly. In fact I am sure within a year you wont even remember you have it at all. It is not going to affect how good of a mom you are or anything like that. They just have to get your PTT/INR at the appropriate level and then you are good to go! Unfortunately, there are a lot of women who have this syndrome. Be encouraged that they found this and get the medicines immediately. Love you!

Mary Beth said...

We are continuing to pray for ya'll!!

Mary Beth said...

We are continuing to pray for ya'll!!

Anonymous said...

We continue to pray and think of you daily. Karla

Aleesa said...

Hey Steph

I think you could use some cheering up so why don't you ask Sue to round up some junior high drum majors and twirlers for you to judge. I'll even do it with you. It makes me smile just thinking about it :)

Seriously, Rich and I will continue to lift you guys up in prayer; let me know anything we can do.

Please don't be discouraged. He loves you and has wonderful plans for your amazing life and family!

Aleesa

hannah said...

I love your candidness too and will remember you in my prayers this week especially!! Blessings to you this Thanksgiving week ~ love you, Hannah Stevens

Aunt Nat Nat said...

I love you Stephanie, and I love that you share your heart. You teach me so much and I'm forever thankful for you.

Anonymous said...

Regarding Aleesa's comment: COunt me in on the judging, but could you come and pretend to be some foreign conductor???
Karla

Summer said...

Steph,
I just now read this (even thought you posted several days ago) and I cannot believe that you have yet another thing to deal with. I am SO sorry. Still I am encouraged by your faithfulness through all of these trials. God is and will continue to use your family to bless so many others. I have full faith that you will be able to have another healthy baby in His timing. I know that you will continue to mourn Levi for a long time. We are praying for you for peace and joy in the work you are doing in Costa Rica.