Thanks to everyone for their wonderful comments. You have successfully talked me off the ledge. I'm feeling much better today than I did Friday when I first got the news about my activated NK cells. I don't know if you guys have picked up on this yet, but I really hate it when plans change. I am a freak with my calendar. And especially with infertility, I've become so obsessed with knowing when everything is going to happen, and understanding all the steps. Partially because going through all the details and THE PLAN (yes, it always is capitalized in my head) helps me feel more in control of something, even when I am definitely not! And when I receive such huge reminders that there are things out there that can totally derail THE PLAN, or at least push it over to a different track, I don't take this very well.
So the current plan is: call my local doc first thing tomorrow morning. If the following things happen, we will go forward with the current IVF: (a) he can see me tomorrow (he's never been able to see me without about two weeks notice, but I'm not sure how much begging one of the nurses will work), (b) he has treated patients for NK cells with intralipids and steroids before, (c) he is willing to treat me with this treatment etc. as soon as possible, and (d) he orders the DQ alpha test ASAP. If all this can be done - tomorrow - then I think we're willing to try our chances with the DQ alpha thing, as most of the treatments are similar to the NK cell thing, except they continue while pregnancy - I think. I'm not that familiar with this, and I'm having a hard time finding information. Hopefully local doc will know something about this. If he doesn't know much about it, and is not willing to work directly with Sher, and all the above things don't happen - tomorrow - then we'll cancel our IVF that's supposed to happen in a few days... We need to get everything done on Monday, as we need to order all the meds from pharmacies and get them through insurance, and I leave town on Wednesday! I think the chance of us starting IVF this week is about 5%...
I haven't been able to convince the hubs that if all things don't go well with local doc this week, that I want to move on to do the IVF with Sher in Vegas in either January or March, depending on whether I can convince my boss that I can be away for two weeks during a super busy time in January. The hubs keeps saying, "let's talk to local doc first." And so I'm trying to be patient with him, and let him come to those conclusions in his own time... So hard!
Although I'm very upset with the change in timing, I think it's very good that we now know this information about NK cells. I am a firm believer in the immunology aspect of reproductive medicine, and I'm not willing to move forward with IVF without these additional treatments. It's not worth it - both with the money, and the emotions involved in losing a baby vs. waiting to start IVF. Once I started thinking about it like that, I became a lot calmer. And all of you really helped me - so much! It helps to have infertile friends like you, always in my corner. Whether it's virtual hugs, advice or real information, I can definitely count on all of you - thank you!!!
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I am new to your blog, just wondering why you want to do IVF in Vegas (do they have leading technology? Will you be doing it with a friend?)
ReplyDeleteI hate changes too and I am glad you were able to bounce back quickly and move forward. I look forward to following you.
Awww, lovely lady! I am rooting for you big time! I think your docs are awesome and I can't wait to read more about all this. My doc once told me "I have to remove your fallopian tube to reduce your chances of getting pregnant, to avoid another ectopic to increase your chances of getting pregnant". Makes sense when you take a step back but I think at the time I just stared at her and made a face. Oh yeah Vegas!
ReplyDeleteWell if you do have NK cells and they think that's why the m/c happened, I think Sher is the place to go unless your local doc is willing to work with Sher. And no not everyone gets tested for these! But, I hope this is the answer for you!
ReplyDeleteI agree with everything that you said. Your new plan sounds like a great plan. :)
ReplyDeleteIt sounds like you have a great plan and have things under control. Major kudos for pulling that off!
ReplyDeleteSounds like a great plan! Good luck with getting in to see local doc tomorrow.
ReplyDeleteThe new plan is a great plan. Good luck talking to your local doc. I'm sure the Hubs will come round - he sounds like a "one step at a time" guy, like mine.
ReplyDeleteThe hardest part is always waiting patiently for the man to see things your way via coming up with his own brilliant plan. Sigh. Marriage is tough work - and by that I mean tough work because I'm impatient and want him to see I'm right - right now. :-) He'll come around. I look forward to hearing out how the plan works.
ReplyDeleteSounds like a good plan!
ReplyDeleteHi Girlie....I wanted to send this to you to explain what DQ-Alpha match can mean:) This was an email of Dr.Scher Responding to my questions about DQ-Alpha.....I also want to note that this is from our most recent IVF....in the beginning there was a few beta's when they werent increasing properly and SIRM thought I was miscarrying but my little bean made a come back so I am guessing that because my RE put 2 in (she thought there was no way it would take because I had increased Progesterone on Egg Ret but I wanted to go ahead and x-fer anyways because I figured worst case is it wouldnt work and then we had 4 frozen to fall back on and guess what I was right it didnt matter) Ok beyond that Dr. Scher said I should have never put 2 in because of our DQ-Alpha match but because my RE thought it wouldnt work she went ahead and didnt follow that rule:( Anyhow I think when my beta wasnt rising it was because I lost the other embryo and that the one left really had to fight because my NK cells were so elevated...Im guessing the one that didnt make it was the one with the DQ-Alpha match....and my understanding is that if you have a 100% match with your husband that there is no way possible to have children together...would have to either have donor sperm or donor egg....or use a surrogate with your embryo....and then of course with embryo's that you and your husband create there is no wasy of knowing the embryos DQ-alpha match....so that stinks because the ones that are a match to you and your hubs wont make it no matter what:( Anyway sorry to so long of a comment but below is his letter to me:)
ReplyDeleteHi Kristi,
Thank you for the posts on the Discussion board.
I think I know what is happening here. You have NK cell activation due to a partial DQa (4.1) match with hubby. This means that 50% o embryos reaching your uterus will clash with you. In such cases, this further activates NK cells, damaging the trophoblast (root system of the embryo) allowing it to limp along till it runs out of steam and you miscarry.
IVIG and/or IL with steroids down regulates NK cell activation and will thus allow a NON-clashing embryo to survive (one that does not carry a DQa 4.1 from hubby). However, no IL or IVIG will save an embryo that has a DQa clash in the face of NKa+. It can only protect the survival of a non-clashing embryo.
You never ever addressed NKa+ before. That would have necessitated IL or IVIG administration). Thus any/all embryos (even those non-matching) would have (and did) succumb. This was the first time you addressed NKa+ through IL. The IL tried to down-regulate NKa+ but because almost certainly this embryo clashed (shared DQa 4.1 with you); it had no hope of surviving. The reason the pregnancy went on for longer than before was because of the IL you took but it could not survive with the 4.1 clash. Even if you had uses IVIG the outcome would have been the same.
When a viable, non DQa matching embryo is transferred with IL or IVIG therapy + steroids (it would probably not matter) you will successfully down regulate the NKa+ and have a baby. BUT be sure to transfer only one (1) blastocyst at a time because if you transfer >1 and one of the transferred embryos clashes (DQa 4.1) with you, it will "muddy the waters" for the other embryo that does not clash and you will lose the pregnancy. Thus be sure to only transfer 1 blastocyst at a time.
Best of luck!
Geoff Sher
I'm glad you are feeling more confident about all the information that just got thrown at you--I'm impressed at your planning and adaptability! I hope the hubs can come to terms with all of this, too. It seems common for male partners to have a 'let's just wait and see' kind of attitude. I heard recently, I think it was on an episode of "Creating A Family" that male partners are typically about a year behind in processing the couple's infertility! Good luck with your local RE, I hope everything works out exactly how you need it to!
ReplyDeleteWell, first of all, I think your point of view is very rational. If there be issues, there seems no point in going ahead just yet.
ReplyDeleteI hope your local doc can accomodate you. And that there be fruition at the end of the cycle!
Good Luck, Alex!
Wow Alex, I missed your last post and needed to catch up. I am glad you stepped off the ledge. Learning new information and diagnosis can be quite scary. It sounds like you have a great PLAN in place. I hope local doc can accomodate you but if you need to wait just a little bit longer it will most likely be for the best.
ReplyDelete((hugs))
Sounds like a solid plan. Fx that local doc is willing to work with Dr. Sher if it is necessary... and that if not, hubs will get on board with Dr. Sher in January... thinking of you Alex.
ReplyDeleteHaving a plan in place is essential when dealing with unexpected situations. Sounds like you have a clear one in mind. Hope DH gets on board with it. Sometimes, DHs tend to be a little one-day-at-a-time. Mine certainly was. Drove me crazy b/c I always liked to anticipate worst case scenarios.
ReplyDeleteDr. Sher is willing to work with your RE. I hope your local RE will be as flexible. Keep us posted. Thinking of you.
Glad you are more at peace with the situation. I hope everything works out just how you want it - whether that's IVF now or in a few months.
ReplyDeleteJust catching up on your posts, and I am so glad that you are feeling better about this. It sounds like you have a great plan in place for moving forward. I hope that everything falls into place for you and goes smoothly. You are in my thoughts. Fingers crossed and LOTS of luck headed your way!
ReplyDeleteI think this all sounds very wise. I am still sorry about the disappointment of (potentially) not being able to move ahead NOW (the wait is agonizing). But you definitely sound like you made the right choice.
ReplyDeleteUgh, I am so sorry for the shuffling of dates, but it sounds like you've got a great plan and it is VERY good that you know about the NK cells now rather than after have gone through IVF.
ReplyDeleteI hope everything works out in the best way possible. xo!
Sounds like a great new plan...good luck!
ReplyDeleteI hope you get things sorted out today. That's a lot of stress for one day! Hopefully your local doc is willig to work with SIRM.
ReplyDeleteHang in there. I totally get the plan thing. It's why I'm having such a hard time right now...
Alex, I'm catching up on posts and so have just read the news about the activated NK cells:( Not much to add, or to suggest. Just sorry that there is one more wrench being thrown (though, you're exactly right about it being good that you know more now).
ReplyDeleteGlad you're doing better. I completely empathize with the frustration at plans changing -- it's one of those extra, unanticipated loss of control things in a process that's largely out of our control. So schedules and plans are very reassuring since they give us something to hang on to.
ReplyDeleteGood luck!