New and Confusing Information

Yesterday was my follow-up with Dr. Br.averman. Of course the office was running behind so we waited for over an hour past our appointment before they called. 

At first Dr. B said everything was essentially normal. But I could hear him flipping through pages and pages of paperwork. Then he got to the HLA (Human Leukocyte Antigen) matching portion of the testing.

Here is information I found on HLA matching from Dr. B's website in order to explain it and be more clear:

"A fundamental part of HLA function is the presence of MHC molecules on all cells in the body. While there must be great similarity between these HLA genes with the donor and recipient during a transplant, this does not hold true when considering an embryo. There are reasons an embryo must have significant differences than the mother in order for a pregnancy to be successful and not result in miscarriage. Evolution has resulted in significant variation in the shape and sizes of MHC molecules (It is the MHC molecules that pick up virus and bacteria and present it to the immune system for eradication). The variation of the MCH molecules prevents a virus or bacteria from mutating and then evading the immune system in every person they infect, preventing an entire population form getting wiped out during an outbreak. Nature has a reason therefore to try and reject an embryo in couples with similar HLA genes as this would eliminate the ability to diversify.

Other HLA molecules on the embryo's surface, however, play an important role in beginning the process of immune tolerance. One theory is that a difference between the HLA genes of the mother and the embryo is important as it draws the immune system to the site of implantation due to the detection of something foreign. From here, the embryo begins to interact with the maternal immune system to turn off its attacking aspects and use it to its own advantage. Advantages include mild inflammation that can assist with implantation as well as the production of antibodies to protect the fetus."

 So, apparently W and I have a lot of matches. He said anything over 5 was considered significant. We have 6 that we know of for now. The test wasn't complete and the DQ Alpha portion of it was missing. This means there are another possible 2 matches that we will find out about once we complete the testing.

The HLA system is located on chromosome 6. As Dr. B said, this is the chromosome that "polices the immune system". If things are too similar, then the immune system attacks the embryo. He thought this was a possible reason for the way things have turned out in the past.

He also said that I had a PAI 1 4G gene mutation which is consistent with PCOS. I also have 1 copy of Factor V and 1 copy of MTHFR. All of these create a cumulative effect relating to blood clotting. He said this can be easily remedied with the use of Lovenox.

As far as the HLA matching goes, I guess his plan of action is to use Neupogen. This is a drug that is administered as a shot like anything else in a IVF cycle. The way that it works is it puts the immune system to rest in order to shield the embryo from the immune system. It's a drug commonly used during chemotherapy and is experimental for use in IVF cycles. Dr. B said he's had a lot of success using it for this type of problem. 

He said we don't need IVF and that IUI's would be an option. For now we will do IVF since we already have a cycle paid for. In the future, we could have him manage the immune portion and do IUI's. They are covered by my insurance so it's definitely something to consider if need be. It's that whole missing a tube thing that deters me. 

We talked about this upcoming IVF cycle. At first I could tell he didn't want to manage it due to the logistics. He was trying to back out of it but I put more pressure on him and he said he would keep to his word. I know its complicated and difficult, but I can't keep doing the same exact thing that my clinic has me doing. It's not working!

We talked about a the protocol again and meds. We will start on Gonal-F at a higher dose and then step it down shortly after. The reason to do this is that the higher dose recruits more eggs to begin with and then once they start growing they don't need as high of a dose. We may or may not add LH depending on my levels and his preference was Menopur over Luveris. After a few days we will add in Ganirelix and will trigger with Lupron. The plan for now is to freeze all embryos. It is likely my estrogen will get super high again and it's not a favorable environment for embryos. Also, the hormone management is extremely difficult with a Lupron trigger and I guess it would be easier to wait. I'm not thrilled about this option, but it's OK. I'm happy to try something different. 

So the plan for now is I need to get doctor's orders to my current office to get a sono before coming off birth control pills. I'm waiting for them to send this over so I can schedule my appointment. Then I will get a scan. As long as everything looks good I will stop bcp's and we will start this cycle. I should get a protocol written out from Dr. B and get assigned to a nurse soon.

So the biggest question is, how am I feeling about all of this information? I'm SO HAPPY I trusted my gut and pursued another opinion. I'm glad I found Dr. B and that we went through with all of the immune testing. I definitely had my doubts about whether it would all be worth it. I now 100% believe it was! Just doing what CNY told me "keep trying, it's a numbers game" was not going to work for me. There is something bigger going on. 

I'm kinda sad to find out to the hubs and I are apparently just too compatible. At least we know that if we ever need an organ transplant we don't need to go far. I'm hopeful for changes and armed with a whole bunch of new knowledge, ready to move forward and get this show on the road!