5 Vials

It is a record. Today they drew 5 vials of blood. I went to a new testing facility (new OB=new facility). The girl was very good, and she let me lay down, or else I pass out. I didn't pass out! And she only had to stick me one time. We got the blood relatively quickly, but throughout this whole process, we have never drawn five vials before. Not even for the genetic screening! (That was 3 vials, and that was also a challenge.) 

Anyways, the blood draw went fine, but I thought I'd share with you what they are testing for in those five vials. 

1. Cardiolipin AB Screen
http://www.hopkinslupus.org/lupus-tests/antiphospholipid-antibodies/ 
Testing may also be ordered when a woman has had recurrent miscarriages and/or ordered along with lupus anticoagulant testing as a follow-up to a prolonged PTT test. When cardiolipin antibody is detected, then the test may be repeated several weeks later to determine whether the antibody is temporary or persistent. Moderate to high levels of cardiolipin antibodies that persist when tested again 6 weeks later indicate the likely continued presence of that specific antibody, which may be associated with excessive clotting or recurrent miscarriages. (https://labtestsonline.org/understanding/analytes/cardiolipin/tab/test/) 

2. Lupus Anticogulation 

Lupus anticoagulants are antibodies against substances in the lining of cells. These substances prevent blood clotting in a test tube. They are called phospholipids.

Persons with these antibodies may have an abnormally high risk of blood clotting.https://www.nlm.nih.gov/medlineplus/ency/article/000547.htm 

https://labtestsonline.org/understanding/analytes/lupus-anticoagulant/tab/test/ 

3. Anti-B2 Clycoprotein Antibodies
https://labtestsonline.org/understanding/analytes/beta-2-glycoprotein-1-antibodies/tab/test/


So, after a brief scan, these are all related, and all  clotting issues that cause recurrent miscarriages. This is a good thing, because I do know I don't have the Factor V Leiden clotting disorder, but these seem to be more common. 


I still stand by my initial response that these will all turn up negative, but I am glad we will know for sure. I'm pretty anxious about hearing back from the specialist. He should have results by next Monday, and I should hear from him mid-to-late next week. (Since it took me 4 days to get the balls and energy to go get tested.) 

Once I know more, I will share on here. I just met (through a Baby Board) a girl who was diagnosed with this stuff, and she was told to wait to try to conceive for 12 weeks, when they would do another round of testing. Hearing that would be ... heartbreaking. But maybe good. I don't know. I don't know how I'm feeling. After having a little more sleep, and some time to collect myself, I am feeling slightly better. Still exhausted - mentally and physically - but better. I feel like every time I start climbing out of the dark, though, my husband jumps back into the abyss. Will these roller coaster days ever level out? 

I don't know, just going to keep blogging and doing things to make life better.

-Emily

Most of pregnancy is waiting

It is Tuesday, and we are 11 days away from 'that night'. The bleeding and cramping has officially stopped. However, my ultrasound on Saturday showed that my lining was still thick, and there were still... 'stuff' left in there. Whether its' blood or tissue, we aren't 100% sure.

Since my doctor is on the fence about a D&C, I had to have blood drawn again yesterday to test my hCG levels. If they have not gone down, that will be indicative of a problem. My OB mentioned that we might do a medicine that causes cramping/bleeding to try to get the remaining tissue out. But honestly, I would rather just do the surgery at this point. Medicine will put me another week away from "normal" and it might result in a surgery anyways. So.. I don't know. I don't WANT surgery, but I'd rather just know I'm cleaned out and ready to go. 

I feel like it'd be a fresh start my uterus.... is that weird? 

Also, it'd give the doctor a chance to look in there and see if there are any abnormalities. I know there probably aren't, but someone like me who worries, it would certainly be a relief of sorts. 

Something interesting happened to me at the blood draw place yesterday. I mentioned to the hematologist that the E.R. had told me I had "really high blood counts". Which, I guess, means high platelets. The very first thing out of the hematologist's mouth was "that is what causes clotting". Alarm bells went off in my head. Someone totally alien to the situation said a key word based on knowledge I learned from our first big bleed. 

I will definitely want to be tested again for any clotting issues. I am going to see if my OB wants to do that herself before we see the perinatologist. Fingers crossed she calls for those tests, because I'd really rather just work with her at first. But, we'll see. I'll do literally whatever it takes to try to prevent a hematoma ever happening again. 

Something else interesting is happening. In my marriage. I am feeling so broken. Everything hurts. Everything is damaged. My womb is empty, and I was unable to carry a baby to term. I have this feeling of worthlessness. And I spent the whole night last night trying to convince my husband he needs a new wife. And I meant it. I feel like a dusty old uterus who can't perform her female duties. I am so angry at my body for failing me. And it's potential to do it again. I wish I could go back in time and start trying to get pregnant at age 22 with my husband. Instead of 27. So far, I'm seeing no advantage of waiting. More issues, more question marks, we still aren't financially wealthy. I just want my body to work, and the failure is causing so many issues for me.

I think that's another reason the surgery would help. A clean slate. Start over, and a pinpointed beginning when I can take back 'control' of my life (I realize we are not in control at all, but it makes me feel better to pretend right now). 

So that's where we are at. I will post more once I hear back about surgery today. 

-Emily

Levels Decreasing: hCG, Estrogen, Blood Count, Emotions

I had my blood tested yesterday for hCG levels and anemia. Dr. W called today to let me know my hCG levels are at 266, and the blood platelets are fine, no fear of anemia.

Tomorrow is a scheduled ultrasound to see if there is any tissue left in my uterus. If so, we will schedule a D&C for Thursday. If not, then we are good to go on to our next cycle. 

Doc suggested she wants me on birth control if we do the D&C to help regulate my cycles and build up my estrogen. When we talk Monday after she's had a chance to review the ultrasound, I will find out if she wants me on it even if we don't do the surgery. I think my estrogen levels might be low, but I have no reason to think that except a hunch. 

So, I will have more for this blog on Monday with another update about what is going to happen post miscarriage.  I think I will take this weekend off from ruminating over this. It was my first morning with no tears. Slowly but surely, we are getting back to a somewhat normal level of life. 

-Emily
"I will face everything and rise
Never gonna quit until I die
Angels keep falling from the sky
I'll take the broken wings and learn to fly
I will face everything and rise." 
- "F.E.A.R." Papa Roach

Genetics

I am not a nurse. Or a doctor. Or a medical practitioner of any sort. My expertise is in marketing, entertainment, and writing.

However, since starting this journey to understand why my body failed, I have realized that I am for quite a bit of testing before we try again. On BabyCenter, there is currently a poll questioning if anyone women have any common health issues that might link us all together with these hematomas. 

So far, the only confirmed correlation I've found is a blood clotting disease. But what I keep hearing is a sense that autoimmune diseases can also cause the hematoma. Also, if there are any ... i don't want to to say abruptions, but abnormalities in the uterus. (Either from a prior pregnancy, fibroids, cysts, etc.) 


So, when we had our first big bleed on July 10th, the ultrasound technician saw a fibroid in my uterus by the baby. He did not seem concerned, but checkmark on one commonality. 

Wondering about my genetics, I have asked my mother to compile a list of her 'issues' she had (she also lost a baby in her 9th month....) Here is a list of complications she's had: 

1979 College – erythema nodosum 

1983 TMJ surgery – repaired cartilage in jaw

1985 Miscarriage – blighted ovum 12 weeks followed by D&C; followed by pulmonary embolism [hospitalization, several months on blood thinner]

1988 Healthy baby (ME!) born

1989 Baby boy stillborn ‘cord compression’ / cord damage or clotting?? in 3rd trimester @ 9 months

1991, 1995 Superficial thrombophlebitis left leg, right leg

1993 Deep vein thrombosis left leg

2001 Human parvovirus – was tested for lupus, Lyme, and probably some other things

2008 Dislocated /frozen shoulder – rotator cuff repair

2010 Deep vein thrombosis left leg, hospitalization and finally, diagnosis of Leiden Factor V

2013 Type 2 Diabetes

I may be missing something but I think this covers the relevant oddball things.   

So. Now we have some more evidence of things to look for. She was also tested multiple times for Lupus, which I have seen mentioned on BabyCenter. 

Prepare the gallons of water, because this October I am going to need lots of vials of blood drawn! 

-Emily