Thursday, March 21, 2013

Wow...Overwhelmed...

I have so much to say....Its all just reeling in my head over and over,  but not really sinking in...Not sure of it was the HELLISH trip out of the city, or the darn GPS that was being stupid, or the cranky whiny kids, crying in the back, or the fact that I have not eaten all day, and my stomach is doing flip flops...But holy moly, I am zapped of energy, patience, and mental clarity...I will try to do the best I can to explain things..bare with me...

First, he does not believe I have MS, but that the immune issues I have been facing from the losses is just manifesting it self a bit different. Basically the inflammation and activation in my body due to the losses etc, can really wreak havoc on the body. I will still go for the scan, with the other DR, but was glad to hear he didn't think it was it..still I have to see the Nero to rule that out.


But, anyway...

Then he went over all my losses, and the duration of each pregnancy etc...One thing he said , I thought was interesting I never heard before, was that the 19 week loss I had in 2008 ( the first baby conceived after my son) could and most likely was from PCOS having never been treated properly. I had symptoms and labs indicating PCOS at a younger age, but because I ovulated well, they never did anything...he said, a certain protein and antibody is released in the blood when PCOS is out of control that can cause nasty issues, and late term losses, much like gestational diabetes can do the same thing...But no one had ever connected those two dots before...still, it is only speculation since we are dealing with it, after the fact, BUT I thought it was interesting....
soooo.....


 Along with the PCOS, hashi's, High NK cells, DQ/HLA matches-( I have the triad HLA's too- specifically the DBR3- which can contribute to RPL and some other issues I guess)  Dr B also is like100% confident we have HYrHLA alleles-and anti body issues. Basically, we wont ever carry to term without meds.


Here is a clip from his website that explains a little about it-


At Braverman IVF & Reproductive Immunology we have long recognized the important contributions made by HLA genes to unexplained infertility and recurrent miscarriage. A recent publication by a group of scientists from the Netherlands has now further advanced our understanding of this important area of reproductive immunology. This publication demonstrated that females carrying certain copies (called alleles) of an HLA gene called HLA-G are predisposed to both primary (no history of a live birth) and secondary (prior live birth) recurrent miscarriage.
This same study also found that females with a history of a firstborn boy ( our son was OUR first TOGETHER) are susceptible to secondary recurrent miscarriage and to giving birth to boys with a low birth weight when they have certain other HLA alleles known as HY-restricting HLA (HYrHLA) alleles. These HYrHLA alleles can specifically alert the mother's immune system to the presence of male-specific proteins (HY antigens) encoded by genes on the Y chromosome of a male fetus. In some women this can lead to the development of a dangerous immune reaction to the fetus mediated through T cells and HY antibodies produced by B cells.(which  Braverman believes is our issue, along with the other allo and auto immune contributors. there still could be even more issues after the review of the new labs...)


He went off for a good half hour about the above issues- And all the new things they are learning and new tests they are developing....All of which I am hoping to get in more detail in a overview of what we talked about..LOL...I Just could NOT comprehend it all! Even with my research, he just had my head spinning! My hubby was LOST LOL...One thing that was cool was, he said if we can manage to get a Take home baby with the use of the meds for the first 12 weeks, there is a excellent chance it will reset my system, and antibodies from the placenta will wipe away a lot of the above antibodies, and I should be OK, so long as we dont get pregnant with another baby without meds and have another loss after the baby is born, I should be in great shape, and have much less manifested auto immune issues to deal with later on...

He also did a ultrasound, and I have low blood flow to the uterus as well, due to the high inflammation...more so on the left side. I could see the difference in the blood flow doppler thingy- so crazy!

Then they, took me back, and drew 14 more vials of blood to do the high resolution HLA  and a bunch of new labs they just created for the immune panels, in the last month or so!

By the time all was said and done, we were in there 3 and a half HOURS!..He said when he first sat down with us, and started looking at my labs, that  he wished he had set aside a whole day for me....yikes!

So the quick version of the game plan as it sits right now, of course always subject to change, when the new labs come back:

We will NEED Neupogen,(freaking EXPENSIVE!! like 1500 bucks!) Lovenox (to help the blood flow thing), prednisone (to supress more) and possibly IVIG (with neupogen- which would cost like 6 grand JUST for the meds) if pred does not work...This all ON TOP of the 2 grand  I have to pay for blood work (due to the changed in our insurance carrier- my husbands work no longer offers the plan we had, now we get stuck with crappy HRA junk. that wont cover the repro panels when and if we cycle with Braverman to monitor how the meds are doing)- AND on TOP of the 1200 for ONE cycle of management from Braverman. (does not include meds, just the review and management of my case) Or 3000 for 3 cycles....

I felt a bit overwhelmed at the sound of all those NUMBERS! Money we do NOT have...We do not have good credit to get loans, they do NOT have payment options...

I am trying to be optimistic here...Praying for a miracle to get the funds for this...I just wanted a take home baby....The easy way...Good grief!

3 comments:

  1. Oh Megz- it all sounds sooooo overwhelming!!! Praying God sends you a miracle!!!!!((hugs))- TRU xoxox

    ReplyDelete
  2. Sounds like a lot to take in. Hope you can defrag a bit this weekend and catch your breath. If only we were all millionaires, this journey would be so much easier! I feel your pain sister!

    ReplyDelete
  3. My goodness, sounds like you have soooo much to think about, but sounds like a great appointment and you are on the right track!!!

    ReplyDelete

Thanks for any and all comments, I don't always have time to respond, but I appreciate each and every one of them....I also thank you for being respectful while commenting on my blog-