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

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

High Risk OB / Periantologist

In the fight to control some of my surroundings (since I am losing control of my emotions on  an hourly basis--which results in listening to the recorded baby heartbeat and sobbing uncontrollably) I decided to take control of my situation and book an appointment with a specialist/high risk ob/periantologist. 

Our appointment is in October once my hormones settle down from this pregnancy. I am going to be compiling a list of tests that need to be done. It is is also important to know that my mother has Factor V Leiden. I was tested for Factor V 5 years ago, and tested negative. However, they did not test for any other clotting disorders. Apparently, my mother also had parvovirus. So if she had that before/during pregnancy with me, that is another possibility for SCH. 

Current lists of tests I want done: 

- Clotting disease
- Bleeding disease
- Parvovirus
- Lupus Anticoagulant
- Thyroid (was tested for this once, so I do not think I need it again, but it's on the list) 
- Phospholipid
- Progesterone insufficiency
- HCG insufficiency 
- Fibroids


Until then, I am planning on losing as much  weight as possible (before this baby I was at 280 lbs... I know I know...) By 14 weeks I was holding steady at 296. By end of October, I need to be down to 275. That is the current goal. So my plan: 

- Cross Fit
- Running (love running, had to stop with SCH)
- Yoga 
- Aerobics 
- Healthy diet 
- Daily green shakes 
- Vitamins: C, E, K
- Cinnamon
- Cayenne Pepper
- Wheat Grass
- PreNatals
- 1 tbls. Apple Cider Vinegar / day 


I have downloaded the app "Habits" that helps me keep track of when to take things and when I planned on exercising. It will remind me when I forgot something or skipped something. Of course, I can not start exercising until cleared at the next ultrasound by my current doctor, but once I am done bleeding and feeling better, back to the gym. 

-Emily

"Many are the plans in the mind of a man, but it is the purpose of the Lord that will stand."
-Proverbs 19:21