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Discussion with Dr.B

I didn’t have high hopes going into my discussion with Dr. B. In my heart I knew that we wouldn’t undercover the reason for my recurrent pregnancy loss and I knew that he wouldn’t have any sage advice as to where I should go from here. I had secret hope that I was wrong, but once again I was right.

I hate when I’m right.

Dr.B started this discussion in the exact way he started our last one. A feeling of deja-vu washed over me and I realized that I was about to hear the same exact thing that I’ve heard before….and…. yup…that’s exactly what happened.

Dr. B dove right into the same analogy he used the last time, explaining that our eggs are like encyclopedias made up of thousands and thousands of parts. That the only way to tell if every word is accurate is to go through it page by page and word for word; not missing a single portion in the entire collection of encyclopedias. Our embryos, just like encyclopedias, are made up of thousands of parts and technology hasn’t fully evolved enough to make sure that every little bit of the embryo is flawless. The process of CCS is like if we were to check random words on randoms pages to make sure the encyclopedia is accurate. You wouldn’t get the whole picture and could miss a typo or the wrong spelling and the encyclopedia wouldn’t be accurate; a small part would be inaccurate. Just like CCS or PGS doesn’t really get the entire picture as they can’t test the entire embryo. So, CCS could be mis-leading and tell us that an embryo is fully functional when in fact it’s not.

That folks…is the encyclopedia analogy. It comes with a drawing as well.

It’s frustrating…not that I’ve already heard this analogy last time, but that this is completely different from the spiel I got when deciding if I should go forward with CCS. I know that with unexplained infertility there are no answers and I’m ok with that, but I was told in the beginning that my issues are more than likely because of chromosomes and CCS will solve all my problems. I honestly believed that IVF with CCS would be my magical unicorn and I would ride off into the sunset with my baby…how naive.

It all went downhill from there. I was told that we could try IVF with CCS again or try donor eggs or look into surrogacy. All very different scenarios. All very expensive scenarios. All scenarios would be great if we knew what the issue was, but we don’t. That makes choosing one of these scenarios very difficult.

If we were to use donor eggs that would mean that it’s not my body, but my eggs. We haven’t determined that is the cause of my miscarriages and nothing is really pointing in that direction. My AMH has bounced around little over the past three years and has ranged from +1 -3. From what I can tell and what the doctors have said is that my levels are within the normal range. So how would using donor eggs solve my problem?

Surrogacy…wouldn’t using a surrogate suggest that my eggs are good and it’s just my body? So each scenario contradicts the other, how pleasant. Plus, this is super expensive and I am not to this point in my journey. Unfortunately my hubby is here and this has caused a lot of arguments between us, but more on that another day.

When I brought up meeting with Dr. Kwak-Kim in Chicago Dr. B scoffed at the idea. He doesn’t believe in her processes and thinks the protocols can be dangerous and a waste of money. His reasoning is that only a few clinics do immunology protocols for RPL and it’s not a proven theory. These clinics don’t report to SART and therefore there is no evidence that they work. However, I believe that it can work and I don’t want to look back regretting that I didn’t do everything possible. From what I took from the conversation is that Dr. B wouldn’t be willing to work with whatever protocol Dr. Kwak-Kim may give me, and I’m not ok with that.

Another thing i’m not ok with…when I talked about wanting to do something different for my next FET he didn’t agree. My doctor believes that his job is to get me a positive pregnancy test and he is doing just that. I am getting those two pink lines and that is the goal of IVF. Dr.B wouldn’t change a thing with my FET protocol because I am getting pregnant.Umm, hello i’ve never had an issue getting pregnant… He said if I wanted to try blood thinners we could throw that in the mix, but that should be the only addition. He also mentioned an antihistamine as another patient is trying that, but I’m not sure that has anything to do with my case. But, this is not enough for me, I have seen those two pink lines six times and still don’t have a child. To me, that means something needs to change.

I walked out of our discussion discouraged, heartbroken and not even one step closer to the end of my infertility journey.

My takeaway from the appointment is the realization that IVF doctors are there for women who never see those two pink lines, they are there to help them achieve a pregnancy. Once a pregnancy is determined they are ready to hand you over to your OB. It is not up to them to keep you pregnant. Obviously they want the live birth percentages to be high so they will do what they can, but they won’t go above and beyond to fix the problem. For someone like me with repeated pregnancy loss I need someone to help me fix the problem. I need someone who will help me do whatever it takes and to not make me feel like my body is failing me…..I already know that.

So, where do I go from here.

My first step is to find a new RE and possibly new clinic. Dr. B is one of the best doctors at his clinic, but I don’t feel fully supported or that he is involved enough in my situation. While I do realize that IVF doctors are very busy and see a lot of patients I want to feel important and at the moment I don’t. I am going back and forth between CCRM or finding another doctor at ORM. While I wasn’t as impressed with CCRM as I thought I would be; I did like Dr. K a lot and that has to count for something.

When looking at statistics on the SART webpage CCRM is slightly higher than ORM, but not by much.

IMG_0414

 Not sure what difference the small percentage can make, but for me it’s a check in the CCRM column. Not only am I making a pro & con list as to where to go and who to see. But, I am also listening to what my heart and gut are telling me. Right now they are telling me to find a new clinic. My hubby doesn’t fully agree with that, but he is on board for whatever I decide. ORM may be the cheaper and logistically more sound choice, but I feel that they aren’t giving me what I need. I’m not even sure that CCRM can do that either, but I should at least find out. I don’t want to look back regretting that I didn’t do everything I possibly could.

IMG_0412

The one thing that I do know is I will be meeting with Dr. Kwak-Kim in Chicago to see what she has to say about the situation. While some doctors may not believe in her protocols I believe that it’s worth the money and time.

I am frustrated that it’s three years later and I find myself in the same position with nothing to show for all the money spent, the appointments attended, the pregnancies had, and the injections done. I am frustrated that I don’t feel my doctor is invested in helping me achieve a full term pregnancy and that I am once again on the hunt for a RE and/or clinic. I have come to accept that I will never know what is causing my miscarriages and I’m ok with that as long as I can find a doctor who will work with me and help me do whatever it takes to bring home a baby.

xo

31 thoughts on “Discussion with Dr.B

  1. Have they ever done a thrombophillia panel on you? Clotting disorders are a cause in many cases of RPL. I definitely feel it is time for you to find someone new who is willing to do more investigation before throwing you into another FET. Your appointment sounds so discouraging, and I’m sorry for that. Sending lots of positive thoughts and *hugs* your way.

    Liked by 1 person

    1. I did a thrombophillia panel before and I met with a hematologist before my fet to discuss adding blood thinners to mix, which she advised against. The appointment was discouraging, but at least it lit a fire in me to find a new clinic. Thanks for your virtual hugs, I appreciate it. xo

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  2. Yes, yes, yes! I am so sorry your meeting with your doctor was awful, but I am beyond happy you’re meeting with Dr. K-K! Truly. I’ve been hoping you would go this route. So many doctors don’t “believe” in reproductive immunology, but it works. And maybe the don’t report to SART or whatever, but they certainly do have stats of their success rates that anyone can view. Seeing Doctor Braverman completely changed my life. He and Dr. K-K know their sh*t. I am now 18 weeks pregnant and I know without a doubt I could not have gotten here without reproductive immunology. All that is to say I am really happy and excited for you. I believe you will find your answers going this route. It took me a bit to find an RE in my area that would work with an immune protocol, but I did find one, so I have faith that you will find one, too!

    Liked by 4 people

    1. I knew going into my appointment that I wanted to meet with Dr.K, but I did expect my doctor to be a little more open to the idea. Thanks to him my hubby now things its a waste of time and money, but luckily my hubby is supportive of whatever I decide. You give me all the reassurance I need to go forward with Dr.K!! xo

      Liked by 1 person

  3. WTF appointments can be so discouraging and frustrating- I feel you and I am sorry you are going through this. I 100% agree with you on your choice to look into getting a new RE/clinic- even if for just a 2nd opinion!! I read that you can get a phone consultation with CCRM for $250 where they go over your entire history- but I’m sure you know this? Anyways, just wanted to tell you to hang in there- I have hope you will find some answers soon enough.

    Xo

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    1. Thank you, I have come to the realization that I am not going to ever fully know what is going on, but hoping that a new doctor will help a little more. I flew out to CCRM this summer and met with the doctor, so at least I know I already like her. xo

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  4. Ahhhh. This sounds very similar to my experiences so far (apart from the pregnancies… I can’t get pregnant). I feel like I’m completely up against everyone in pushing for the reproductive immunology stuff, but I feel like if they can’t come up with a valid reason then I want to rule everything out. I have an appointment with someone (one of the few who do it in the UK) next month. At least I feel I can rule it out if it’s nothing, and focus on the other stuff. Your appointment sounds really frustrating. Even though I’ve had only one pregnancy, through IVF, I completely agree- they seemed more bothered about getting a pregnancy and not about sustaining one. I feel like I want to know WHY it didn’t work, and not go through that again. I’m having a second and third opinion, just to be sure! Sending you hugs! X

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  5. I am so glad you are looking into another RE. Your current one obviously has no idea where to go from here, and trying someone new will hopefully be refreshing. Best wishes with wherever your journey takes you (I’ve heard/read great things about Dr. K-K).

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  6. Time for a change!! Go with your gut… You aren’t getting the answers you need and nothing new to try. I hope you find your answers and with a new clinic that will take the best care of your needs.

    Liked by 1 person

  7. Gah I’m sorry you are feeling so frustrated and disappointed and such! I totally get it. And, I agree with the other comments – listen to your intuition. Our gut feelings are there for a reason. I hope the immunologist is able to help. If you aren’t getting the time and attention you deserve then it’s time for a change!

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  8. Im sorry things did not go good with Dr. B. I know what you mean about dreading that WTF appt. I hate that he isnt very open to your ideas, these drs need to start realizing that after all we have been through, we are well educated in this process and that we know our bodies better than they do. I think going with your gut is exactly what I would do (and did do) in your position. This is your life and your future, and like you said, even though you may not find all the answers, I have so much hope you can still bring home your baby with the right help/timing. Thinking of you!

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  9. My heart goes for you Steph!. I can totally imagine your situation!. These WTF appointments always sucks, especially when we already know what the RE is going to say. I am so happy that you are willing to try Dr.KK in Chicago. She found that I have 2 gene mutations/blood clotting disorders which other REs did not test for. We are happy that we went to Chicago!. I really hope that this time it is going to work for both of us! Hugs ❤

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    1. Thank you!! I feel like these WTF appointments are such a waste of time. I wish he would have just said, I have nothing new to offer so don’t bother coming in. 🙂 I am so excited to go meet with Dr.K-K, I have high hopes that she will be a great step in my journey!! xo

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  10. This is so similar to our story. Towards the end I felt so hemmed in by my lack of choice re clinics since we live on an island and like you, I got pregnant, but I never stayed pregnant. So I felt like I had to push to get action. It was at our insistence that we were matched with donated embryos because my hunch was that in addition to low quality sperm, we were dealing with undetectably bad eggs. But I still don’t really know….

    All to say: when you’ve had as many losses and attempts as you guys, just getting pregnant only to lose another pregnancy is really damaging.

    I second you gut instinct to try another clinic and to try an immuno protocol. None of this stuff offers a silver bullet but anecdotally I’ve been seeing more pregnancies stick after immuno protocols and I’m glad we did it.

    I was never big on surrogacy because I wanted to carry my child and there was no evidence of structural issues that req’d a surrogate. But I took to the donor embryo idea because it seems like so many of us with rpl have SOMETHING going on that’s just not detectable yet, so donor eggs make sense. Is that something you’d try if DR k suggested it?

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    1. I am open to anything as long as there is a reason behind it. When I met with Dr.K at CCRM this summer she didn’t think I needed donor eggs and encouraged me to try IVF again if my FET failed. I just still feel that its my body or hormones or something along those lines that are causing my RPL. xo

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  11. Ugh…what a shitty experience to be going through. They definitely should not treat you the same as say, someone like me who has never seen two pink lines. Amazing how some REs think all’s fine if you GET pregnant even if you can’t STAY pregnant. I’m doing donor egg IVF which took a bit to digest but reading more and more about epigenetics and donor egg (http://www.yourivfjourney.com/epigenetics-can-ivf-affect-your-babys-genes/) I became comfortable with it. But of course I’m all outta eggs, so my case for doing it is much different. Like you said, you don’t know what’s what and that’s the bitch of it all 😦

    I agree of course with those who say to go with your gut but I know how complex this all is. One thing that’s actually helped me is I found a counselor who leads a small infertility support group here in Portland, but also sees people one on one in regular therapy sessions, and that’s helped me “center” a lot during this process – as well as my husband who is a stress-ball himself 🙂
    FYI if you do have interest in something more expensive like surrogacy, I’ve heard of a lot of folks doing the Kickstarter/Crowdfunding route to raise money for it, and been very successful!
    I know you’ve gotten lots of suggestions but I will say when I changed REs it was like night and day and finally not only did I feel *heard*, but also for the first time actually trusted what they were saying. I go to http://www.fertilitynw.com/ here in Portland and I *love* them. Dr Stoelk has been doing it for 30+ years and is also like a kind grandpa with a no-nonsense, no -BS attitude who won’t take your money just for giggles like many clinics do. Anyhow they do a free assessment so even if the clinic is not convenient (it sounds like you’re in the midwest?), it might be worth a call just to give him the basics and see what he thinks…

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    1. Thanks for all the info! I did do a consultation with Dr.S at his clinic before I chose my clinic and Doctor. I actually went and met with three different doctors and clinics before deciding if I wanted to do it and where. I just started looking into support groups and may try one out, haven’t done that yet and I’m reaching the point where I think I need it! Xo

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  12. I could have written this myself – have had the same conversation. My doctor is inclined to blame the embryo first too but did look into some implantation dysfunction stuff, which obviously isn’t your problem. One thing I’ll say is that I don’t think you should expect CCRM to be more receptive to conversations about Kwak-Kim’s protocol. I found that their embryo-centric attitude mirrored this convo @ORM. Thing is – I’m beginning to believe it. My 23-week loss was precipitated (we found out after the fact) by a microdeletion on one of his chromosomes, which is below the level of detection offered by CCS. I good friend lost a DE-pregnancy at 5 months from a CCS embryo that turned out to be a mosaic mess. And there’s this blogger: http://lifeandloveinthepetridish.blogspot.com/2015/12/miscarriage-8-genetic-results.html HOWEVER, I work with a girl who got pregnancy easily and miscarried repeatedly, never made it past 10 weeks, did CCS and got A LOT of normal embryos from one cycle, transferred two to a GC after learning that she and her husband had HLA matches (which most doctors dismiss) and now has boy-girl twins from that FET. So, yeah…unexplained IF is a mindfuck.

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    1. Thanks for all the info. It’s disheartening that your experience at CCRM was like that and I will have to have an in-depth talk with DR.K at CCRM to make sure that I can explore other avenues. I think going into my appt with Dr.K-K that I am mostly concerned with my hashimotos and hypothyroidism…I want answers on that more than a long list of protocols as I know she usually hands out. Thanks for the blog reference, I just checked it out and look forward to reading more of her posts. Unexplained is such a mindfuck and that’s what makes it so hard that what works for one person probably doesn’t work for the other. Sorry for you loss. xo

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