I had about 2500 decisions to make about various things. every single day since we decided to plan our conception.
Everything seemed to fall into place one day at a time, just to crumble and reconfigure the next.
I made my mind up and even if i was going to change it, again, for me it's a big deal.
From day to day these decisions that I mull over, accept and come to change. Over and over. At least it was movement, even if it was in circles.
I went into the doctor today.
Was greeted by a rude receptionist, waited in the waiting room for 50 mins.
Then was rushed back with a nurse who raced through my check in.
They were making it too easy on me. I had already made another decision! To never come back to this crappy doctor's office again.
After waiting another 40 mins in the quiet and creepily dated exam room, he walked in.
You could tell it was the first time he had looked at my chart since he closed it last time I was there.
He fumbled through the test results and there it was...
a positive.
Not the results that i had expected. How haven't i learned yet to expect the unexpected?
Bummer.
Major bummer.
I had my mind all made up! I was planning on going home and getting to baby making business. and then I'd go back to the doctor who helped me with Truman, come hell or high water! We were going to make it work, it would be okay.
Not so fast, the world bent back and laughed.
I don't get it. I do what I can do to make things better....I honestly feel cursed... but i try anyways....
...... but can i fight genetics?
The positive test is for a confusing and complex disease called "Antiphospholipid Syndrome".
I have it.
The paper marked "IGG- POSITIVE- >30".
The crappy doctor shifted uncomfortably. I was reaching the out limits of his experience.
I could tell when I asked "So should i start LDA at 12 weeks or at conception?"
.... and he gave an apathetic shrug.
then went on to say in so many words "whatever you want... i mean one way, you risk clots/stroke/death... the other birth defects.... so whatever you want to do, good luck."
I left the office with his only piece of advice that may actually be helpful- take one baby aspirin a day, for the rest of your life so you don't have a stroke/heart attack/ brain aneurism/blot clot.
and a diagnosed auto-immune disease.
I am 29 years old and have to take an aspirin a day to ward off heart attacks like i'm some 70 year old chain smoker who eats only red meat? This can not be a good sign for my life expectancy.
I cried the whole way home.
I don't even know what the hell to do.
I got home and have been reading non-stop since. Trying to figure it all out.
It not only says all the scary stuff that i have mentioned already but also reoccurring Pregnancy loss, miscarriage, still birth, infant loss. I almost threw up.
I am sentenced to a multiple loss life?
But blood thinners can help possibly. Heparin and Warafin.
Does that mean that if i would have known about this before Truman, that i could have tried blood thinners and he could maybe possibly be alive right now????
I'm sad. I'm scared. I don't want any more bad news.
I'm reaching out to the perinatologists at UCSF for more help and information on what this diagnosis means.
Back to the beginning of the loop. No idea, confused, scared and clutching on to hope of good news.
Please hope for simple and effective solutions.
Oh Laura. I am so sorry, this sounds complicated and I hope that perinatologists as UCSF will be able to offer you a care plan and a solution. I know that sometimes I would speak to the more 'generalist' doctors about my pregnancy, they'd hum and hah and make me panic. Then I would speak to the consultant and she'd be able to sort it all out and actually tell what the problem was all about. I'm hoping that the more specialist team as UCSF will be able to do the same for you. Hang on in there and I'm so sorry that you've received this news and that it was delivered so unsympathetically.
ReplyDeleteI am so sorry to hear that you got such devastating new in such a horrible manner. I hope you find a great medical staff to support you.
ReplyDeleteI'd recommend looking up the blog "The Spohrs are multiplying". The blog is written by a woman who is somewhere in CA, who also has antiphospholipid syndrome. She may or may not have MD recommendations for you. At the very least she has some personal knowledge about going through the treatment for it.
I'm so sorry that you have been dealt another huge blow, with lasting implications for your health and your future babies'. I'm hoping the specialist doctors can give you more of a game plan.
ReplyDeleteYou know that's what I thought when I got pregnant with Harlow and I was supposed to take 1 baby aspirin a day... I thought "are you kidding, this tiny pill I can buy a bottle of for $2.50 could have saved my daughters life? This magic bullet?" I mean why not just stick every pregnant mom on it. For me it was a hertero zygote Leiden factor5 or some such clotting disorder but fucking he'll my daughter is dead and this could have made a difference.
ReplyDeleteI'm sorry you got bad news. I remember
My perinatologist Saying not to think of test results as being negative but to think of them as information that allows you to better care for yourself. At least you know what your dealing with and how to try and battle it etc. That's his philosophy.
I'm sorry that you have some fucking genetic disorder that could have caused your baby to die (insert more major guilt).
Laura it's all just very hard. I know people who have your disorder still have babies but your doctor doesn't sound likethe best dude to be Helping you on your path.
Sending a giant hug and hoping you have some (happy-positive) results soon
Oh, Laura, as if infant loss isn't just the most horrible experience in the world, now compounded and complicated by this. When I found out about Nathaniel's genetic disorder, I had my DNA tested and found out that I am a "carrier," and that Nathaniel would not survive because of the DNA I passed onto him. That, and really ugly statistics about possible infertility and miscarriage because of my genetic abnormality. This news, after decades of menstrual cycles and avoiding pregnancy, is like a big kick in the teeth.
ReplyDeleteSo I can understand. I like Renel's doctor's point of view - that this is just a piece of information that can give you guidance about how to take better care of yourself.
And maybe you can find some comfort in knowing that there are many women out there who face this issue and who come away with healthy babies in their arms. The universe might smile on you and make a living baby next to effortless. I'm hoping for an easier path forward for you <3
I'm so sorry Laura. I hope that perinatologists at UCSF can offer more solutions than this awful doctor. I'm thinking of you, and hoping you get some more encouraging news soon. Much love x
ReplyDeleteThank you for the support and encouragement, loves. Keeping my fingers crossed and trying to see the bright sides. <3 xoxo
ReplyDeleteOh, I hope the specialists can help! xoxo
ReplyDeleteOh, crap. You and I are once again in similar circumstances--I received bad news on one of my recent tests as well.
ReplyDeleteI imagine that getting a positive result on something was perhaps initially validating because now you know what's going on....But then it's like, Oh shit! That sucks. Because it really does, and I'm sorry you have to deal with that additional worry.
I hope, hope, hope you find a doc you really like, and that things go as smoothly as possible.
I also understand about the "what ifs," and I'm so, so sorry. Much love to you, Jeff, and Truman. xoxo
Hi Laura - I came to this so late I already read the next post and am relieved that you no longer need to worry about this rubbish. Phew!
ReplyDelete