Wednesday, May 25, 2011

Unexplained no more.

Last night I had my follow-up appointment with Dr. Sher. It was short and to the point, which is ok with me.

My Natural Killer cells are activated. Is that even the right way to say that? Also, my blood work was positive for antiphospholipid antibodies, including, but not limited to, the “bad ones”, a-PS, aPE, and aPC.

Dr. Sher says this is why I haven't gotten pregnant. His protocol for me would be Intralipid+Heparin+IVF.
After we hung up the phone, I cried. I cried tears of relief, tears of scared-shitlessness, tears of realizing that I will probably never be able to conceive the "normal way". The way that most people do it. The way crackheads and teenagers do. It's a tough pill to swallow, to be honest.

But it's not like I wasn't expecting it. I figured there would be *something*, ya know? And I've never been one for following the crowd. My body just decided to follow suit with how I live my life. That's what I'm telling myself, at least.

So having the night to think on my diagnosis and options, I came up with a list of questions for Dr. Sher and his office. He had mentioned to me that I am eligible for their Micro-IVF program, which is $6250 + meds. There is no difference between this and normal IVF, other than I won't require as much tender loving care. Couples who have severe male factor or ovulation disorders do not qualify for Micro-IVF, and neither do women over a certain age.

I called Dr. Sher's office when they opened to ask my questions. The only one I was able to get answered on the phone was the cost of the Intralipid treatment. It's usually around $300 per infusion, and I would require two, most likely. One prior to my IVF, and one after a positive beta.

The receptionist gave me Dr. Sher's email, and I emailed him the rest of my questions. She recommended making them short, otherwise he may want me to call back in for another consult instead of responding directly to email. Luckily, he responded to my email! And in less than an hour. How's that for service? I love this man more and more each time we communicate!

Here is the Q&A that transpired earlier through email:

Me: What level of NKa do I have? I have read there is low, borderline, normal, high, etc. 
Geoffrey Sher MD: Anything above 10% killing is abnormal. The range of abnormality is usually between 10% and 12%...so in your case, given that a reading was at 10.7% puts you firmly in a distinctly abnormal category.
Me: Are my NK cells activated because of the APA?  
Geoffrey Sher MD: Almost certainly, yes.
Me: Which type of APA did I test positive for? (I read there are 21 types, including Lupus)
 Geoffrey Sher MD: A wide range were abnormal, including (but not limited to the “bad ones”, a-PS, aPE, and aPC. The APA results were thus strongly +ve!
Me: This is an autoimmune disorder, correct? As opposed to Alloimmune?
 Geoffrey Sher MD: Almost certainly…yes! But to rule out alloimmune implantation dysfunction completely, we would need to test both you and your husband for DQalpha and HLA similarities.
Me: What about low-dose aspirin + Heparin to treat the APA? Or is the Intralipids for the NKa enough? 
Geoffrey Sher MD: We would add low molecular weight heparin (Lovenox or Clexane) but no aspirin should be used.
Me: Is it possible to do Intralipids + IUI prior to IVF?
Geoffrey Sher MD: Yes, but: a) the success rate is low (about 12-15%) b) with such a low success you would have to take steroids and IL each time and c) (most importantly) your prior poor response to stimulation suggests that your ovarian reserve could be diminishing and as such you simply cannot adfford to waste time on a lesser procedure such as IUI. 1 attempt at ET (with blastocysts) would improve success potential about 3-4 fold. 

Me: Any insight you could give me would be great! I didn't want to take up your time in a phone call, so if these could be answered via email, I would really appreciate it. 
Geoffrey Sher MD: If you want to talk again, call and set up another phone consultation. 


_______

I then sent a couple follow up emails with more questions. Here they are:

Me: Wow, thank you so much for your quick response! I really appreciate it. I'm doing my best to try to learn everything I can about this. I like being informed. Thank you again, and hope to meet you in person soon! 
Geoffrey Sher MD: Excellent!

However please be aware that out of “ignorance”, “arrogance” or both, many RE’s shun the concept of immunotherapy for IVF. Unfortunately this makes patients such as you potential victims. The truth is that the field of reproductive immunology is far more complex than IVF itself and most simply are not informed adequately. Even though the number of “believers” is growing by the day (simply go to Google to see) “Immunology in IVF” unfortunately has become a political football.

GS

P.S. Please read my 2 very recent blogs at www.IVFauthority.com on immune issues.

________

Me: How many embryos would you transfer for my IVF? 
Geoffrey Sher MD: I would suggest two!


Me: So because my blood work was + for Antiphospholipid Antibodies, does this mean I have Antiphospholipid Antibody Syndrome?
 
Geoffrey Sher MD: No! 

 ________


So that's that! I have been pricing out hotels and plane tickets. Buster is officially ON BOARD for Vegas IVF!! He loves Dr. Sher as much as I do. I think it's because Dr. Sher called him a stud when I asked about the sperm DNA testing we had done.

I've found pretty affordable flights and hotels, so my only real issue is getting the time off from work. I've googled "FMLA for IVF" and found that many people were able to use FMLA. I think I would just need Dr. Sher to write something saying that I would be unable to work for 3 days. I will not have any vacation or sick leave to use, so my choices are:
  • FMLA (unpaid time off)
  • Regular unpaid time off, if they would grant it
  • I could plead my case for working from the hotel. I have a powerful laptop that would allow me to do the work I need to do.
  • Don't go to the beach in July with my family, and use that time for Vegas. I know, this seems like it would make the most sense, right? But I just can't agree to this option right now. I am sooooo looking forward to the beach. We didn't go last year, and I need it. But, if this was my only choice, I'd do it.
_______
Any advice/info/opinions on what you've read up there would be BEYOND appreciated, especially if you have had a similar diagnosis.

20 comments:

  1. I'm so sorry Kara. I don't have the same diagnosis but it looks like our only option is IVF with ICSI so I can understand where you are right now. Please email me if you need someone to talk to, I'm sure I would benefit also. HUGS!!!

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  2. go to http://fmlaonline.com/ and you can print the forms to fax to Dr. Sher before your trip and get them turned in pronto. Your company CANNOT turn it down. That would be violating your rights. Basically with FMLA, what the doctor says goes and you can't get fired. Ducks in a row is the way to go! I say beach it up and use FMLA as opposed to just unpaid time off (yes its still unpaid but it does protect your job)

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  3. It is definitely a hard pill to swallow when you realize you will never be able to "do it the old fashioned way" and get pregnant but in time hopefully you will take on the "at least there are options out there that can help us" feelings. I know it was very hard for us to swallow but now I drive by our fertility clinic and smile.

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  4. Haven't been through that, but I realise the bittersweet pill of a diagnosis - good to finally know WHY, but disheartening to know you can't do it the way the teenagers and crackheads do.

    Opinion? Go to the beach and have something 'nice' to do this year. Do the ivf however else you can, but don't compromise your holiday or anything you are hugely looking forward to. Good luck, hon, I will be following how you get on

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  5. I am soooo happy that you have been diagnosed. The worst feeling is being unexplained adn just shooting in the dark.
    Don't not go on vaca with your family, you will need some R&R after this crazy year and this journey.
    Figure out how much pay 3 days would cost you and the amount of time between now and your time off and do your best to save that amount between now and then.
    Good luck, I love Dr. Sher too, (he sounds amazing)!!

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  6. Kara- I am so glad you have answers. That has to be a bit of a relief and scary too!! Dr Sher sounds AMAZING!! We have a Sher Institute here. If we ever do treatments again i would go there!! Gl with getting the time off. How soon are you wanting to do ivf?

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  7. Wow I'm so impressed with what so many of you have said about Dr Sher. I think I'm going to check him out. I can't wait for you to book your trip to Vegas!

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  8. Hi. Stopping by from ICLW. I'm glad you found Dr. Sher. I had a phone consult with a colleague of his and will most likely tranfer to them when we try again. I say ask for the time off unpaid first, then FMLA if they won't grant it. Keep the vacation at the beach, it is needed while going through all this and you deserve it. Good luck!

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  9. My first reaction is AWESOME!!! I AM, however, so sorry that it has to be this way - that natual conception can't work for you - but after all this time to have an answer and a solution is so exciting! I can't wait until you get the ball rolling on this. :) Best of luck! Dr Sherr sounds wonderful!

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  10. Wonderful, wonderful news! Having a plan, one that will WORK, is great news! Of course it sucks that you're not like the rest that can have sex and pop out babies, but who cares. The end result is the same! I firmly believe that following Dr. Sher's protocol with intralipids to help my activated NK cells caused me to get pregnant - and stay pregnant. Good luck, I'm so happy for you!!!

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  11. Wow, this is pretty exciting (well, you know what I mean...) - to have a definitive reason, and to be able to take action (in Vegas, no less!). Sounds like you can use FMLA, which would be pretty awesome - one huge weight off. And, if not, unpaid time off - you need that vaca! Excited to hear what comes next for you.

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  12. I'm not much help because I dont understand half the words and acronyms that he used in your conversation and emails, but I gotta say I LOVE HIM TOO!! I love that he is giving you honest, quick answers, that he has given you an official dx, and that he has a plan for you. I love this for you Kara!!! What a great idea it was for you to contact him! Now go get ready for Vegas!!

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  13. Wow. Just wow! At least you're not in limbo anymore, but I'm sorry that it seems IVF is your only option. Answers are such a double-edged sword, aren't they? Do you think you'll try to get a second opinion? I like what anonymous said - use the FMLA and go to the beach! IVF might be intimidating, but just think how much closer you are to finally getting your baby! :)

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  14. So glad that you finally have some answers! It's is tough to hear, for sure. In fact, I think the title of my blog post after having the famous immune testing was "Devastated", or something like that.

    I've done heparin and intralipids for both IVF #2 and FET #2. Our second IVF was successful. There is not a doubt in my mind that we would have failed again if not for the immune protocol.

    I have quite a bit of information on my blog (both personal journey/ history and professional info).

    ((HUGS))

    http://catswithpassports.blogspot.com

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  15. So glad you have some answers! That's great. I've seen a lot of women have success with Lovenox and the intralipids. I think it's a great plan, and I hope that this all ends up being your magic combination!

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  16. It is bittersweet that you now have moved to 'explained'. Im just sorry its not a simple fix. Must feel some relief though, to know you have a plan and an obvious great Dr.

    If you can afford to take time off without pay, then do that. You need your relaxation at the beach, and you dont need to be doing work whilst in a hotel in Vegas. Despite the purpose of the trip, sounds like fun...

    Best wishes...xo

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  17. That is pretty damn amazing!!! At least you're not unexplained any longer. You don't have that frustration of not knowing which is excellent, but then the diagnosis is still tough.
    Sounds like there's a fantastic plan ahead of you.
    I have nothing to say other than good luck and I will be cheering for you!!!

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  18. Here from LFCA--so glad to hear you're having a great experience with Dr Sher. I do have a word of caution though--when I was going to Sh.er Institute in LA, they diagnosed me with elevated NKCs too and did the intralipid transfusions. The cycle failed and I switched to a different clinic because I was unhappy with my doctor there. At that point I was seeing an acupuncturist who specializes in IF and is very tapped into the IF treatment community, and he told me that it had become policy at Sh.er to diagnose everyone with NKC issues and treat with intrlipids, which he said can do permanent harm (he'd had patients who all their hair, permanently, from this treatment!). Not to scare you and who knows if everything my acupuncturist said was accurate, but I can tell you he is one of the people I've found to be most trustworthy and knowledgable in my long (4+ years) TTC journey. Also, at the two clinics I went to after Sh.er, I was told NKCs were not an issue for me. I am now 21 weeks pregnant (via donor eggs, as DOR has been my issue since age 26 and I went into POF at 30 last year). No treatment for NKCs needed, and baby and I are doing great. Obviously everyone's situation is different, and I hope this works for you. But if you can get a second opinion, especially before having to travel, it might be worthwhile. I know there's a lot of controversy about this treatment and I just wanted to share my experience in case it helps. Good luck to you!

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  19. Stopping by from LFCA too. I have endo and went to SIRM LV a couple of years ago and cycled with dr. Sher. (He was our second opinion.) I don't have elevated nKa, but I did test positive for APAs (IgG PE). while we ultimately weren't successful, we loved the clinic and can't say enough good things about them. Six months after our last failed cycle we got a surprise BFP, so you just never know.

    Best wishes!

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  20. Elevated NK cells is why I think we're having trouble conceiving. I've done so much research the past couple months and it tends to go hand in hand with endo which I also have. Drinking liquid chlorophyll can "help" but it's nothing compared to steroids... I haven't been tested for any autoimmune issues, but that's the next step. I think more doctors need to start testing for it, especially for unexplained infertility.

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