Infertility, Our Infertility story

Two consults, two very different opinions

April 14, 2011

I kept the phone lines hot to the west coast tonight.  First up was Dr. S and then Dr. X.

Consult with Dr. S

I just had my second follow-up consultation with Dr. S to review the results of my immune testing.  He told me that while I do not have the alloimmune problem that he suspected, I do have another immune problem.

I’m so frustrated.  The nurse told me that all of my immune tests came back negative. I almost skipped this consult with the doctor because of it, because there would have been nothing to discuss.  I’m glad I did it anyway.  I did, of course, request copies of my records, so I would have found out eventually. I was so depressed all for nothing.

My immunophenotype tests show that I have activated “T” cells.  This basically means that I have an overactive immune system where cells attack everything, including the embryo. My balance of Th1 cells (the agressors) to Th2 cells (the pacifiers) is messed up and I’m Th1 heavy.  My Th1 cells become overly aggressive and go after the wrong targets.  So, basically I have a bunch of crazy, blood-thirsty warrior cells running through my veins. I suppose the opposite would be worse though because then I would have a weakened immune system leaving me vulnerable to infection and tumors.

Dr. Sher thinks that this is easily treatable using intralipid and prednisone, but of course he wants to treat me in Vegas.  I just don’t know what to do now.  I told him that I was very concerned about having abnormal embryos in addition to everything else and he said I should not be worried about that at my age and with my history.  He said most of the problem embryos are weeded out by the blast stage and once they make it to blast stage, one out of every two is normal.  So, if you transfer two, in theory you should be good.  He also said that they invented Comprehensive Genetic Screening, but he just didn’t think it is necessary for me and would be a waste of my money.

Consult with Dr. X

Later this evening, I had my consult with Dr. X.  He thinks that I have an embryo problem and suggests that I do CGS (Comprehensive Genetic Screening) to biopsy and test the embryos.  I asked about PGD vs. CGS and he says that PGD is proven to not help at all and even to be detrimental.  That jives with everything I have read and makes total sense.  I told him about my newly diagnosed (as in one hour ago) T-cells.  He thinks that is a bunch of “hocus-pocus.”  He thinks we have good chances.

Conundrum

I could not possibly get two more differing opinions than these two.  However, I knew this before I ever set up the consults.  I knew which camp each doctor firmly stood in, but wanted to talk to both.  I believe both of them. I believe the immune issues could be causing my problems.  I also believe I could have the additional problem of genetically abnormal embryos.

What to do

Well, the decision absolutely comes down to money, unfortunately. If I had Oprah bankrolling me, I would go to get the immune treatment that Dr. S recommends and the CGS that Dr. X recommends. But, that’s not happening.


We are in a shared risk program at our local clinic.  The deal is four fresh IVFs and after that if there’s no live baby, you get your $20,000 back.  Frozen cycles don’t count and are included and you have to use all frozen embryos before proceeding to another fresh cycle. Even though we have done this so many times (five), we have done only two fresh cycles and the rest were frozen.  So, right now we have two frozen embryos from our last fresh cycle.  We can eject ourselves from the program at any time and get half of our money back.

The Dr. X CGS option is absolutely out because our clinic doesn’t do CGS and it would cost me $30,000 for one IVF cycle with CGS at the new clinic.

Next, I can try treating the immune issue.  Dr. S wants me to go there, but I’d like to stay here but use his recommended treatment (if both doctors will go for that).  We have the two frozen embryos that we should use anyway and the specific immune treatment would only cost about $200-400 extra.  Then, if that doesn’t work, we can decide whether to:

  • Try again here with a fresh cycle and same immune treatment (IVF count #3 of 4 in the program)
  • Or, go to Dr. S.  He said I could do the micro IVF, which costs $6400 + meds + travel = $10,000.  We could get our $10,000 back locally and do this, but then all of our money would be gone and if it didn’t work, that would be it.  No more IVF money and no adoption money.
  • Or, we can get our $10,000 back and have about half of what we would need for adoption.  I’m thinking fundraising and loans for the rest.  But, this would be guaranteed.  No adoption, no money.

Pretty bad when I need to flowchart to figure this out.

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  • C

    I do not envy you this decision. It’s a tough one. Not that any of these decisions are easy, but coming to the end-of-the-road decision SUCKS. I hope you guys are able to come to a decision that you feel at peace with. ((hugs))

  • Phew… so much information, and really big decisions to be made. Good luck, whatever you do. I’m partial to Dr.S in CO b/c I just cycled with CC.RM with success (albeit IUI, not IVF, but I follow a lot of bloggers who are/have IVF cycled there with success).

    That being said, you’re right – VERY different opinions, and since it sadly always comes down to money, do what will stress you out the least. If that means Vegas, best of luck to you!!!

    If you want more info on CO, check out this blog: http://ccrmjourney.wordpress.com/
    She has tons of great info!

  • Wow – you couldn’t have a more complicated decision! I completely understand why you did a flowchart – which I LOVE, by the way… This is such a tough decision. I’m partial to the try the FET with Sher’s protocol option – it’s the easiest and cheapest. Beyond that, I don’t know. Maybe you won’t have to go beyond that… Give it some time, and maybe your gut will help you get to a decision you can be comfortable with…

  • Jess

    This was the exact decision it came down to for me. (I was fortunate enough to have CGH done at my clinic.) It’s not an easy decision and yes, finances DID play a role. As well as mental exhaustion. Best wishes on making sense of what will work for you.

    BTW- I have not completely given up on ART. I have just decided to do adoption first and if we can do something else in the future, we will.

    For me, I needed the guarantee to keep on going, but I respect whatever it is you choose.

    Deciding this is HELL. I will say that.

  • Jess

    Another thing I realized when deciding to move to adoption. No RE is ever going to tell you when it’s time to give up. They will keep going and going and going. True, the next IVF may be the answer, but it also might be the 3rd, 4th, or 5th.

    Just some advice from the other side, but like I said, if you choose to take the plunge and try IVF again, I do understand. I really do. It’s only in stepping away that I realized, I think continuing to see my RE would have prohibited me from realizing it…

  • I heard about your blog from the fertility blogs. Congrats on being featured!
    Wow what a dilemma. I read it earlier this morning and kept coming back to it, and looked at your flow chart. Looks like you really have a good way of figuring things out. So trust your own gut.
    If I were you I would prob stay with your current place and do Dr Sher’s protocols. Hope you can do that. I noticed you said Dr Schoolcraft THINKS you have this embryo problem, ie there is no proof at this point.
    I am also trying to decide between staying with my gynae or trying a fertility clinic. Also into the mix is my maid’s neglected granddaughter who she is hinting we should adopt (she asked us 6 mo ago and we said no) – but bringing this up again is tough, makes me question the track we are on… Here in South Africa adopting a black child would be huge deal, and also the kid would not be able to speak his own language..
    hehe we all have our problems..

  • Vesna

    My dear Whitney,
    I have immune issue and the same dilemma like you.We have phone consultation with dr.Surrey and he doesn’t believe in immune problems,but more then obviously I have them.
    So,now I am with dr.Kim Kwak and I like her very much.She explain everything in details.She prescribed me immunemeds:metanx,prednosone,lovenox,aspirin and two days ago ivig.On April 18 I have ivig,and April 25 transfer of my 3 frozen embryo .
    I have very high cytokine level 47.7 ,so ivig is my only option.I am glad that we found the reason of my two previous failure(two times beat zero),and I believe that this is the reason.
    For CCRM,my opinion is that they are very good,successful but I think that my problem is immune.If we don’t see result we will looking forward thought CCRM,till then,I am staying here in Chicago(we are originaly from europe,living in chicago 3 years) with my clinic and dr.Kim.
    I really understand what you are going through ,your dilemma ,and fears.
    I am feeling your pain
    Thinking of you with all my heart
    Vesna

  • These decisions are so completed, physically, emotionally, and financially. Having a plan at every step in the process was critical for my sanity, and we mapped out so many different flow charts as we got new and different information at every step in the process.

    It is especially hard that there isn’t a standard of treatment yet for many of the situations we encountered. Reproductive medicine is still in its infancy, or at least that is how it felt to us. There were so many times, when I wished that we could advance medicine by 10 years and everything would be okay for us. and the different opinions of experts in the field really left us on our own to make decisions.

    Good luck as you navigate this complex path! I trust that you and your husband will make the best choices for your situation.

  • Elizabeth

    I have different issues, but I’m booked with Dr Sher this summer. He was recommended to me by a lady who did IVF with him 14 years ago at age 43 … and it worked. I like how he sounds on the phone. I’ve found his finance person to be a little unhelpful though – why they can’t just give you an approximate total or a written personal quote, I don’t know! I had to ask about everything to find what extras we might need, and add it up myself. They stopped doing the ‘shared outcome’ plan now too. They do a kind of 2-for-1 deal. There are so many decisions to make with IVF. And friends and family tell me to ‘just relax’ as if that’s the big secret to getting knocked up! It’s cool that you made a flow chart. I should have done that months ago.

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