Thursday, October 23, 2014

We (FINALLY!!!) Have a Diagnosis! And... Egg Retrieval #6

Two big things happened in the two months:

  1. I finally have a diagnosis - immunology factors including natural killer cells which is why we have had trouble getting and staying pregnant
  2. We moved to RMA in NJ for an egg retrieval and genetic testing because it seems like their lab may have a leg up on genetics.
Immunology:
Finding this out was incredible. I didn't know much about immunology and had asked our doctor in DC about it and he said he looked into it some but that nothing came up to make him concerned. We also asked our NJ doctor and he said the same thing.

I owe so much to one of my dearest support group friends. She kept bringing up immunology to me and I kept saying 'they've looked into it' but something wasn't sitting right with her... so she introduced me to someone she knew who had a similar story to mine. 

This person had 5 early on miscarriages (I've had 7) and finally got checked out for immunology and turns out she had a whole host of issues including natural killer cells and clotting. She got treated for this and now has a 6 month old.

She told me very few doctors really look into this stuff, so I went to her doctor (luckily in DC!) and within two weeks got results from our immunology bloodwork that shows:
  • My CD56CD16 is 18.3. Normal range is 7-16. These are the natural killer cells that basically attacks anything foreign like embryos. It's not too high but high enough.
  • My T cell is 9.6 and B cell 10.3. Normal range is 50-100. The way I understand this is that these are the suppressants to the natural killer cells. Because this is so low, the issue is mostly getting this much closer to/within normal range so that the killer cells are suppressed during a transfer. 
The great news is that my doctor thinks that by just elevating the suppressants, that should be enough for us to keep a pregnancy. 

Treatment for this:
  • Treatment for this is controversial. Part of it is not approved in the US by the FDA so we have to look elsewhere. Many people have gone to a doctor in Mexico which scared us a bit. Luckily, the Mark.ham Fertility Cen.tre near Toronto offers treatment called LIT (leuko.cyte infusion therapy) which includes 2 treatments that are 3 weeks apart and would be me getting an infusion of my husband's blood as a way for my body to recognize and be ok with foreign material in my body.
  • The next treatment would usually include IVIg which is approved in the US and is an infusion of pooled blood donors. The cost of this is a lot. Because my natural killer cell count isn't too high, my doctor is recommending something less costly called intralipid therapy.
I'm still looking into a lot of this and don't fully understand it all.

If any of you have any knowledge, advice, etc, I'd love to hear it!

Retrieval #6:
In the meantime, we've moved to a clinic in NJ (RMA) to do a retrieval and genetic testing on our embryos. It seems like their genetic testing may be a bit better than what we've been using through our DC clinic, so we wanted to give this a try.

Retrieval is scheduled for tomorrow!

Wish us luck! :)

6 comments:

  1. http://manyadventuresofalex.blogspot.com/

    Congrats on your diagnosis.

    The blog link above is from a former blogger who had the same issues as you. She is now parenting a single girl and a set of twin boys.

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  2. Wow! This could be the breakthrough moment, wishing you all the best.

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  3. I just did intralipids this week and my transfer is on Tuesday. I hope it will be helpful, since I have had a few chemical pregnancies/ failed implantations. I did find that it made me feel flu-like for the day following the treatment, but if it works, I will be thrilled. I didn't do the blood thing, however I have heard of it and my friend in Toronto did do that exact treatment after several failed IVFs, it finally worked. She was with Dr. Vi.rro She has 2 kids now. Good luck! I hope it works for you too! It's nice to at least get a diagnosis and know what plan to follow.

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  4. Amazing, good luck. I am hopeful that this may be the key. ((hugs))

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  5. That's great that you got some answers. Hope the retrieval went well!

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