Friday, November 19, 2010

"I Don't Think You Have a Good Shot at Having a Baby"

This is what Dr. Sher said - if I don't get intralipid treatment. He went over the results of the NK cell testing. Here are the results, for those of you who know anything about this stuff (believe me, it's gobblygook to me):
Native state: 1:50 8.1% killed; 1:25 4.9% killed; 1:12.5 3.9% killed
IL-2 stim: 1:50 10.3% killed; 1:25 6.8% killed; 1:12.5 6.3% killed
IVIg 12.5: 1:50 9.2% killed; 1:25 4.6% killed; 1:12.5 4.0% killed
IVIg 6.5: 1.50 10.4% killed; 1:25 8.6% killed; 1:12.5 6.4% killed

He said anything over 10% is concerning. If I only had the one (IL-2 stim) over 10%, then it would be ok, but I have two, including the IVIg, over 10%. So what that means is that 90% of the time, I have autoimmune issues, and this would need to be treated with steroids and intralipids. Without this, "I don't think you have a good shot at having a baby." But first we need to get tested for the 10% likely issue - DQ Alpha problem - both the hubs and I need to be tested, and if we have certain genetic similarities, then it's a worse problem, and there's more intralipids, and more steroids. The DQ Alpha problem takes at least 2-3 weeks to get the results.

I explained to Sher our current plans to have IVF, with stimulation starting on Thursday, with a local doc. He didn't like that. He said we could talk to the local doc about this, but "I doubt it if your doctor understands this problem. He can certainly call me, and I can explain it to him, but I doubt he would do that. If you don't get treated for this issue, I don't think it is likely that this IVF will be successful, in that it would result in a baby." I asked if he could order the DQ Alpha test, and he said no, not if I was under the care of another doctor.

I don't know what to do now. I was so ready to do IVF - starting next week! I trust this guy's opinion - he's one of the best in the world, but not everyone gets these tests done before IVF, right? I got off the phone, and now I can't stop crying. I just don't know what to do. I just want to get to the end of the TTC battle - I'm sick of this!

25 comments:

  1. I feel your pain and I understand why you're sick of this, especially since you were ready for IVF.

    You have to remember that there are many doctors who strongly believe in the NK cells stuff and many doctors who don't at all. There are studies that back both sides up, too, which makes it even more frustrating.

    I know that you're ready for IVF, but if you are hesitant and your gut is telling you that you believe in what Dr. Sher is saying, then perhaps (as much as I have to say this) it makes sense to wait to do IVF...until you get the DQ alpha testing back and you can decide if you want to do the intralipids.

    (((HUGS))) to you. I'm so sorry you have to deal with all of this.

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  2. I'm sure that's disheartening. *hugs*

    Maybe try to think about this as a positive step, despite the delay. Knowing about a problem that's likely been contributing to your infertility means you can do something about it. And the steps to manage immunology issues are straightforward and the results are measurable. For me, when I switched doctors to start my IVFs at the beginning if the year, having a plan to attack my immunology problems was very reassuring. And taking the Humira and seeing my numbers go down to normal was awesome.

    We seem to have pretty similar medical/TTC histories - email me if you want to talk directly.

    *hugs*

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  3. Oh no, not a setback! I totally understand why this is making you so upset. I don't know what you should do-- you only have a $25K lifetime limit for IVF though, right? If that's the case, I'd wait. If you have unlimited IVF benefits, then I don't know... if you did (God fucking forbid) have another miscarriage, it would be awfully hard not to blame yourself for not listening to Dr. Sher- even if he is wrong. And who knows-- I don't even know what NK cells ARE!!

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  4. (((HUGS)))!!!

    I am so sorry you are having to deal with more new information, just when you were ready to start this IVF cycle. It can be so hard to deal with news like that. Even though it's helpful in the long run to know what all your issues are, facing them head on is really hard.

    As other people said, try to listen to your gut and consider all your options. More (((Hugs))).

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  5. This is terrible for you, to have your plans change so suddenly when hope was just around the corner. I really don't know what to say to make this better for you, but it sounds like you got a really good diagnosis from one of the best docs in the world. Sounds like he is someone you can trust. I have had a few clients do 5, 6, 7 IVF's before finding out this problem, and soon as they did the next IVF worked. If your money is limited it might be worth the wait. Why don't you ask your current doc about the Natural KC and see what he says, if he thinks its something not worth exploring, he may not know enough about what you need moving forward. Nothing is worse then waiting, except having to wait some more!!!

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  6. Oh, honey. What a huge pain in the ass! I mean, I guess it's good to have more information, but when a baby magician says he doesn't think it's likely as things stand? That has to be tremendously disheartening. I'm so, so sorry you're having to deal with this, and I hope you and DH are able to come to a decision that you can deal with. Sending hugs and love.

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  7. Ugh I'm sorry :( I wish I could give advice but I totally can't. Sending you happy thoughts and strength to figure out what's best for you and hubby.

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  8. this is so difficult. I agree that there is a lot of conflicting info about NK cells. I know this is a big thing at Sherr. There is no right decision, go with your gut that usually leads you in the right direction.
    hang in there alex

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  9. Ick. I wish I knew what to do! I know this would scare me, too. It sucks that there is so much conflicting research about all of this. I'm so sorry that you're having to figure this out.

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  10. Hey Alex,
    I'm so devastated there's been another setback just when things looked so promising. I would have to agree with Dr Sher though and have all the testing first before proceeding. I am so sorry this is happening I was SO excited for you! Please keep us posted no matter what you decide. (((HUGS)))

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  11. Oh my girlie....I feel so dumb right now...his test from reprosource is so foreign to me since Dr. Kwak uses a her own test to measure Nk cells but oh man I didnt think we were this far off in anazlying the results:(

    On a positive note you now know what your problem is...which is good and its fixable...double bonus but you have to have the right Dr's who know what they are doing in order to manage such major issues as immune related...and even though it is throwing a wrench in your plans for you right now....in the long run it will save you money and pain if you suffer another loss to just wait and do what is medically needed....

    We along with elevated Nk cells have a 50% DQ-Alpha match so dont be surprised if you also have this....it just means that you would need to be on a certain steriod prednisone and that you would get IL tx every 4wks up until 25wks of pregnancy...and that if you do have a 50% match your NK cells will become more active and stronger once pregnancy occurs....he has a great article on his blog Ivf Authority that explains DQ-Alpah matches....

    Man I know its hard to be patient and have plans changed but honestly I think you should listen to Dr. Sher and follow his advice he really knows what he's doing and I know some Dr's think immune issues is a bunch of bull but Im living proof that it is not and I was in your position and things would have never worked for me without all this immune tx I have had....as proof that all my last cycles worked but failed because of miscarriage....

    Anyways take care and sent me an email if you need to...Even though now you probably are second guessing my expertise after not interpreting his test results right:(

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  12. Nothing's ever easy, is it? I dumped my local re in favor of SIRM because I believed in his research. I didn't want to wast my time wondering if something went wrong because I didn't do everything I could. From what I understand a DQ match is pretty rare. And while dr. Sher tests for them routinely, I don't think his partner dr Fisch does. It's a tough call, but I'd probably stick to SIRM. Isn't there a SIRM center in Dallas? Would that make things easier, since it's closer to home?

    Thinking of you as you try to figure this all out. Hang in there.

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  13. Oh girl, you sound like you're in a similar situation as me, but just in different stages of this journey. The advice I kept getting was get a second opinion! It sucks that you are just learning of this obstacle so close to your IVF, but at least you know and can research it to find the best option for you. I feel your frustration...I hope you get the answers soon!

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  14. Oh man, That is so confusing. Second opinions are good but CONFUSING. Good luck navigating through this and figuring out what to do. Hang in there.

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  15. I cannot offer any sage advice, but please know I am following your journey and cheering you on, regardless of what choices you make.

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  16. Wow, I'm looking at the other side of this coin which is amazing. Look at all this information you now know about yourself. All these little steps combined together when the time is right is going to make for the most amazing IVF cycle this blog sphere has ever seen. I can't wait. Hang in there lovely lady. There is a silver lining.

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  17. Okay, firstly a big hug for the setback. Undoubtedly that is tough.

    Secondly, those results mean nothing to me without reference ranges to compare them to, but if Dr S says over 10% is a problem then I would believe him.

    If I were in your shoes right now I would be getting the DQ Alpha done and postponing your cycle. You could consult with your current doc,and see what he says in any case.

    No, not all docs test for these as standard, especially things like DQ Alpha, but I do believe it is worth having these done before IVF, especially if you have known immune issues. I think by taking the cautious route you will save yourself a lot of heartbreak as well as money. I really do understand how frustrating this is - big hugs to you.

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  18. I'm so sorry for the setback! Have you called your current doc to see what his thoughts on the results are? Best of luck with the decision!!

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  19. I'm so sorry!!! This has to be so upsetting and frustrating. So not fair! I'm so sorry and I hope you guys can decide what's best for you right now. Wish I had some advise or was able to help. ((hugs))

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  20. I am so sorry you are going through this...I wish I had some insight, but definitely don't. Sending hugs your way!

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  21. alex - this is a toughie and i wish you lived near me so i could come give you a great big hug. i know you have your heart set on this ivf cycle starting, but a slight delay, while very upsetting in the shortrun, might pay back with huge dividends. you don't want to go into ivf with ANY DOUBTS. AT ALL. in your doctor, or in your protocol. there's too much on the line. not just the money, but the mental aspect of it as well. you don't want to come out of a failed cycle and wonder "what if", bc that is the worst thing in the world. with that said, there are docs who 200% believe that nk cells play a role. and there are docs who don't think so. i'm personally one of those ppl who think they do play a huge role. and i've seen enough girls fail at ivf cycles, only to succeed after getting treatment for the nk cells.

    i know this is a sucky position bc you had your heart set on starting. there's no right or wrong answer. just what your gut tells you to do. i hope your gut tells you loud and clear one way or the other, so you're not going back and forth and making yourself crazee, as i'm sure many of us would do. sending you love, xoxo.

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  22. Oh Alex, that must have been a horrible phone call to process. It sounds like it left you feeling completely helpless. And infertility already leaves us feeling helpless so often. I wish I knew even one answer to all the questions you have to process and agonize over. I just want to say that I remember when you were making the decision to do (hopefully the only) round of IVF locally or go to Dr. Sher first. There were many reasons why you chose to first give it a try locally and I think those reasons still apply. Dr. Sher's recent words stung and struck a fear deep inside you. I hope you can talk some of this over with your current RE and find some peace and reassurance with the treatment you have already started, whatever you decide. Sending lots of love and support!

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  23. omg Alex I am so sorry to hear about this setback! Ugh, I am going to read your new post... I hope you are feeling beter and have a new plan. xoxo.

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  24. Alex, I'm so sorry about the confusion and seeming setback! Like several others said, the whole NK cells thing seems controversial among REs. Since you have good IF insurance, it seems like you could choose to go ahead and do one cycle with the local doctor since you're all geared up for it. That said, I would probably be hesitant about that after hearing the advice from Dr. Sher, as well. He is, obviously, one of the best in the field. And if you're going to do IVF, it seems worth it to feel completely confident that you're doing everything you can do make it a success. But I can imagine the frustration of having to change all the plans and push things back again--that's always difficult, no matter how good the reasons are.

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