"Now and then it's good to pause in our pursuit of happiness and just be happy. "

12 February 2011

R.I.F.

Recurrent.
Implantation.
Failure.

That's me... nothing but a big failure...

4 fresh transfers and 1 frozen transfer, of mostly beautiful embryos. We've tried day 5, day 3 and day 2 (age of the embryos)... And all of those transfers have resulting in only 3 chemical pregnancies. (Yes, this last one, was indeed another chemical pregnancy, says my RE)

Over the last 36 hours or so, after receiving the news that my beta was only a 1.0, I have felt very panicky. We're at the end of the line here with our genetics. We've agreed to be done spending 10s of thousands of dollars per year on this basically doing the same thing while still not having any more clear of a path. We still don't have a solid reason.

By that I mean, no one can really agree on why RIF occurs. Or maybe what I mean is that there are too many unproven explanations for RIF. Or MAYBE what I REALLY mean is that the medical community has no "for certain" diagnostic tests and resulting methods of overcoming possible abnormalities in those tests to solve the RIF issue. Come on medical community... GET IT TOGETHER!!!

Aside: This is precisely why infertility needs to be voiced more so that funding can occur to solve these issues, and those of us without insurance coverage can hope to someday have help in paying for this madness.

So where does this leave us? With 3 possible explanations:
  1. Poor Egg Quality - My eggs are poor quality, chromosomally abnormal, and therefore our embryos stop developing after a few days in-utero because the pregnancy is not viable. 
    • Factors supporting this:
      • IVF #3 showed "spongy and grainy eggs" which I guess are a sign of poor quality
      • IVF #2 embryos kind of 'pooped' out around day 5
      • Premature Lutenization in 3 of my 4 IVF stim cycles is correlated with poorer egg quality
    • Treatment: 
      • Donor Eggs or Embryo Adoption or Adoption
  2. Immune System Malfunction - My eggs are fine but my body won't let the little embryos implant for too long. The process starts, but my immune system is messed up just enough that it attacks the implanting embryo and says, "Stop trying to burrow in!" 
    • Factors supporting this: 
      • Mild endometriosis found in my laparoscopy last year, which is correlated with implantation failure in some literature
      • The immune testing I had done showed that I have some borderline signs of this potential issue. (High NK cells, CD56+, APAs.... I touched on this a bit in this post)
      • The feverish feeling I got during my 2ww of the first 3 transfers, before I started taking the prednisone during the 2ww.
      • Treatment:
        • Use some fairly non proven and potentially unsafe infusions in the blood during our FET that aim to suppress the immune system more so than what I've already been doing with the steroids (I used prednisone with my last two transfers)
        • Use a proven gestational surrogate to transfer our embryos to instead of me and hope that at least one sticks in there.
      • Both 1& 2
        • Treatment:
          • Bang head into wall and hope that when I come to, there's a baby in my lap.

        The reason that I lay this out there is that I really need some help in deciding our next steps. I just don't know what to do. We have 3 beautiful grade A day 2 embryos in the freezer and I want to make sure that when I look back on this all, I can say that I left no stone unturned AND we weren't stupid in throwing away this last chance at our genetics. I'm open to everything right now. Really... I just want this to end. I'm tired and weary of this journey and I want to get on with my life. Do we transfer all 3 back to me? Do we find a gestational surrogate? Do we try both? If this doesn't work, is donor eggs the right step? Or am I kidding myself into thinking my body can hold a pregnancy?

        Any advice is appreciated.

        18 comments:

        1. Oh Kat... I wish I had the answers!! I wish I had an extra $20,000 to toss your direction, I wish I had an egg or womb to spare. This shit sucks!!!

          What's the likelihood of finding and funding a surrogate? Crap - I'd do it in a heartbeat if I could!!

          I am here with you and for you....

          ReplyDelete
        2. So much to take in here, Kathleen. I can sure see why you are feeling frustrated, weary, and and confused. The really shitty thing is that they can't nail down a good reason why you haven't been able to get pregnant, so that makes it so much more difficult to figure out what your next step is. My advice would be to take some time to really figure out where you want to go from here. We'll all be supporting you 100%!

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        3. This sucks! I hate that you don't have the answers you want and need. It is so overwhelming and there is no clear next step. I wish there was something that I could do or say that would make things better! I am thinking about you and wishing you clarity!!!

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        4. I certainly hope that the road becomes clearer soon. For me, it comes down to Time, Money, and Pain Tolerance. Number 2 and 3 are starting to take a heavy toll, so I know I will be asking the same questions after my next (last!) cycle with my eggs and my body. I wish I knew the answer.

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        5. No real advice...we went through five fresh cycles and one frozen cycle and all they could agree on was it seemed that my eggs weren't great (one time they looked dark and grainy too) and our embryos weren't exactly stellar. We skipped over donor eggs because I ran out of steam for any more medical treatment--I had a supreme distrust of my body. We moved into international adoption and at the risk of sounding cliche, it feels like the path we were meant to take.
          Trying to figure out options and routes to take is exhausting--I hope you get a clearer sense of things and mostly find peace with whatever road you take.

          ReplyDelete
        6. I am so sorry that you are experiencing this pain. I am in the exact same position as you. I have done 5 FET and had one chemical pregnancy and one took that I lost at 7 weeks.

          I have now moved onto seeing a reproductive immuniologist. I too have high NK cells and tested positive of APA. I will be under her care along with a reproductive immuniologist for my next fresh IVF cycle. Is this an option for you to look into?

          Take care of you and try to hang in there. This road is very difficult and very unfair.

          Kim

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        7. I am thinking about the EXACT same issues. My mom and sister have volunteered to be gestational carriers...although neither is ideal. My mom is 58 and my sister has diabetes and herpes...

          Wanna talk? Email me: dcrunningmamablog at gmail dot com. We can be miserable together.

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        8. Well you know for us we had 4 recurrent miscarriages and prior to that went through fertility tx for 4yrs...Then I met Dr.Kwak Kim in Vernon Hills, IL...who is a Reproductive Immuniologist's....I was also dx with mild NK cell issues after our third loss but was told by my old RE in Indy that it wasnt a big deal...Well he was def wrong....With each loss immune issues became worse and worse...After my first visit with Dr.Kwak I had more answers than I ever have had in my life....She used to be partners with Dr. Alan Beer who wrote is you body baby friendly...I would def read this book might give you new insight that Immune tx are not Hokey but in fact are the answer for some....I would not be 38wks prego today without Dr.Kwaks tx's...no way no how because I was like you I tried everything before seeing her...So that would be my advice to you...I know most insurance plans she does except so I would set up a consultation and see what you find out...I think you might be surprised:) Wishing you nothing but the best!!!

          ReplyDelete
        9. I wish I had all the answers....and endless funds. Prior to the MAJOR emotional upheaval these last couple of days, you and B decided that this was THE last time you'd try with your body. My suggestion would be to find a GS, because your embryos look stellar. And the baby would be your genetic baby (potential blonde hair and long legs)....no donor anything. Just my thoughts. ;-) Love you, babe. xo

          ReplyDelete
        10. I think part of the question now becomes -- do you want to be pregnant or do you want to be a mom? Part of what makes this process extra painful is that each time it doesn't work, not only are you disappointed by the lack of an impending child, you're also increasingly frustrated with your own body. Taking your body out of the equation doesn't make you feel any better about the slow road to parenthood, but it does help to take your focus off of feeling like a "failure". Ultimately, only you and B can make the best decision for your future and although it would be nice if we could just peek into the future and see the path that will eventually work for us, it's the traveling of that path that makes the end of the infertlity journey so powerful and so sweet. What does your gut say? (oh, and don't try to make a final decision this week. You're still too close and the "just one more time" temptation will override everything else.). :)

          ReplyDelete
        11. I am so sorry you are having to make these tough, heart wrenching decisions. I have endo and high NKa cells and actually are planing on doing the infusion with our upcoming cycle. The IVIG that once was used, yes was/is/can be risky given it is a blood product, however the intralipids used now are a synthetic version and are quite safe. The 'risks' are actually less than that of the follistem/lupron used in the cycles. It obviously is not a garauntee but if you aren't ready to give up on the pregnancy aspect I think it is a viable option. SIRM institutes are the biggest supporters I have found and will give a free phone consult if you want more info on it. Also if you visit their website they have a blog that answers MANY questions related to the immune aspect of infertility.
          Like i said, I am not completely sold on it (some think it's hocus pocus) but I have read many a blogs that had immune issues and after multiple failures, used intralipids and held a pregnancy. I am at the point where we are going to do everything we can to up our chances this time bc we don't have an endless pot of money or the finances for surrogate :(
          This is a touch decision and your gut is going to have to lead you....sooo sorry and here if you need anything! xo

          ReplyDelete
        12. I love you Kathleen. You always say just the right thing. I think we operate the same way!!!

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        13. When we started down the IVF road I wanted to leave no stone unturned. And being the researcher that I am, I did so much reading about endo and the immune system. I made a lot of sense to me and led me to Dr. Sher at SIRM. I also have endo and tested positive for one particular APA. While ultimately unsuccessful, I wanted to be able to look back and know that we did everything we could. Perhaps it's worth a consult with them or you could do a FET with lovenox, steroids and intralipids if you choose not to go the surrogate route.

          Best wishes to you. It's such a tough road we walk.

          ReplyDelete
        14. There is so much to digest and you laid it out so clearly. This is so incredibly hard because they can't tell you WHY it's not working. If you knew WHY, you could make much more informed decisions. Is there more "digging" you can do on the autoimmune front? I also think you have to ask yourself how you will feel if various scenarios played out and see which you feel you can live with and which you just can't. I know things are so hard right now and you just want clarity about next steps. You and B have done such a great job gaining clarity in the past and I have no doubt that you guys will think through everything and make a great decision.

          ReplyDelete
        15. There are so many factors...It sucks that you have to make such a hard decision. What does your RE think?

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        16. That is a lot to process.

          I'm curious - does your RE have any insight into why, if your eggs actually *were* poor quality, you would have such high quality embryos?

          If you did want to go ahead with this FET cycle and, if you needed to, later move on to a GC, does your RE have a recommendation on how many to transfer?

          Like many things, I don't think there is a right or wrong answer in this. What does your gut say?

          Love you.

          ReplyDelete
        17. First of all, I don't agree with the "big failure" label. :) Second, I am frustrated for you in that after all this time and all the tests, there doesn't seem to be a clear answer as to WHY this hasn't happened for you guys yet. Thirdly, I agree with M. Hold off on the donor eggs and try two with a surrogate and one with you using intralipids. Now, I know nothing about that process, but Kristi's experience is certainly encouraging! I feel for you K, I wish I could wave a magic wand and have your baby drop into your lap (w/o a headache :)) and make all this IF pain go away....xo

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        18. I'm the midst of trying to figure things out too, and I don't know what to do or say. I just want you to know that I'm thinking of you. HUGS

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