Information Overload: A Summary of Appointments

There is a bit of an information dump, so I’m just going to write it in point form. If you are interested, happy reading!  If you are not, I totally understand.

Family Doctor

  • First let me state that my family doctor might just be one of the most amazing doctors on the planet. I adore him and will forever be grateful for his support through the last 2 years.
  • He has agreed to help facilitate our care with Dr. Braverman in any way that he legally can. He will provide the necessary prescriptions and monitor us locally, so long as he is given exact doses, dates, etc. While this sounds amazing, it should be noted that depend on what medications are included in the protocol designed by Dr. B’s team, our family doctor will be limited in what he can prescribe. If things like IL and IVIG are part of our protocol, they require specialized prescribing rights, which our family doctor does not have. But, I’ll take whatever I can get here, because we know it will be much cheaper here than in NYC.

Reproductive Immunologist – Dr. Braverman

  • We had some technological issues with connecting to him via skype and ended up just having a telephone conversation. The problem was on our end – thank you Windows 8 (for the record, I despise Windows 8).
  • We liked him right away. Mind you, our expectations were so low given other’s first impressions of him. So, he really only could exceed our low expectations. And he did, which is good.
  • He liked to talk hockey. Evidently he knows the Canadian stereotypes, and was happy to play up on them. We appreciated this as an effort to relate to us.
  • He’s clearly arrogant, but we have absolutely no problem with that. He’s the expert, he can be as arrogant as he wants.
  • He provided us with a name of a doctor in our city that he has consulted with in the past. He thought the doctor was an OBGYN, but after a bit of research it turns out she is a family doctor. As we love our family doctor we will not look to change our family doctor. However, we really appreciated that he was willing to help us find someone locally.
  • He instantly believes that our septic miscarriage (#3) is a sign of an immunological response that caused cells in the membrane to burst which lead to the infection. According to him, there is substantial literature on this. No-one here has even investigated our septic miscarriage as more than just bad luck! All I can say on this one, is WOW!
  • He believes given our young age (31) and our history, that we will be successful under his care.
  • He promised not to tell me that we have a 50% chance of success in the future and to just keep trying until it works (this is our current medical advice). Honestly, as funny as it might sound, I think I needed to hear that. I needed to hear that this type of a statistic is unacceptable, and he will search to get to the bottom of our problem (of course I will have to pay him to search, but at least I know he will do it)!
  • My immediate feeling is that I am relieved that we made the decision to see him. I feel a sense of excitement and hope that this is our best chance at getting a real answer for our losses. And this is also our best chance at a successful pregnancy! I hope this lasts!

Local Immunologist

  • He has been and continues to be super supportive of our RPL struggle – he does think there is something immunological going on that is causing or at least contributing to our RPL. You can read all about my last appointment when we had a good conversation about RPL and immunology. Have I mentioned before that I love my local immunologist?
  • I should note that my local immunologist does absolutely nothing with reproduction. He is NOT a reproductive immunologist (RE), he focuses on allergies and asthma. My original referral to him, years ago, is a result of my sever allergy to grass which caused asthma symptoms. My entire life I was told I had exercised induced asthma, but in fact it was simply my allergy to grass. I have been asthma free for about 5 years once he found the right treatment for my allergies.
  • He would like to try to get me onto a drug known as xolair. We’ve talked about this in the past, but I am not an ideal candidate because my allergies are under control and I do not have a breathing problems. That said, he thinks it will really help in supporting a future pregnancy. So, I am being sent for a breathing test which will occur sometime in the next few months. The plan is that I am going to try to fail it to help him build a case to get me on the drug. And, if not, he is going to try to get his hands on a few “free” doses from the suppliers. This is a stretch, both in terms of me being approved for the medication an in terms of it having a significant positive impact on a pregnancy. But, it won’t hurt a pregnancy either, so why not try adding it to the mix, if we can. Of course, we will see what Dr. B thinks about all of this.
  • He is incredibly curious to see what Dr. B finds.
  • He has not heard of interlipids. Do these things just not existing in my part of the world?? They seem pretty common as a treatment for RPL in the USA, but definitely not in Western Canada. I continue to be shocked at the complete lack of knowledge about interlipids around here.
  • Since my last appointment he has determined that he cannot get me access to IVIG, so he will not be able to facilitate this locally, should Dr. B. want to pursue it.
  • If nothing else, I continue to take comfort in having another doctor on our side who is doing what he can to try and understand RPL and help us out.

Local RE

  • Progesterone – He agreed that based on the numbers of 4.1 and 6.5 on CD 21 and 23 respectively, I likely ovulated on CD 19. Exactly what my husband and I (and almost the entire blogging world) had already determined. He agreed to monitor me on CD 21 and 26 of this cycle just to see what happens. He is adamant that I clearly do ovulate based on 4 failed pregnancies (he doesn’t count our 5th biochemical pregnancy) and so he doesn’t place a lot of faith in the progesterone testing.  Moving forward, after this cycle, we will be using progesterone after 4 or 5 days after my LH surge and stop if we are not pregnant on cd 28. I also have a requisition to get a beta blood test monthly, so I am officially done with POAS (thankfully – I hate it).
  • We spoke about our desire to go on heparin with our next pregnancy. He is still hesitant because we have shown no reasons to take it, but would be willing to do it once we are pregnant so long as we understand the risks.
  • Ovarian Reserve testing. We confirmed that we have not had the AMH test done! That said, we had a follicle count down, which is more accurate in his opinion. They look for anything over 5 per ovary as being good, and I was at 12 and 13. So, I passed with flying colours and he felt the AMH test was unnecessary, but he agreed to do it on my next CD 3.
  • We spoke our decision to seek an opinion in the USA. In past conversations with him, he has indicated he does not believe the link between RPL and immunology, so our expectations were low going in. He honestly had no interest in it – he didn’t even care to know the name of the doctor we have chosen. He indicated that he believes the doctor will make-up/find some reason, and will prescribe a low dose steroid and heparin. However, he did say he will review the doctors recommendations and help us understand them and to make a decision on our future treatment. Based on his body language alone, it was overtly obvious that he thinks we are wasting our money and time by seeing Dr. B.
  • He has used IVIG with one pregnancy in his career. She ended up with a viral infection, and he would be very hesitant to use it again. Based on our conversation, IVIG will not be something he will give us access to, should Dr. B recommend it.
  • He, and the clinic, do not agree with interlipids. He made it abundantly clear that we will not be able to get that treatment through them should Dr. B recommend it.
  • We left the conversation about the horrible nurse off the table. While it was completely unacceptable, we decided nothing good would come of starting an argument with our local clinic.

So What Does All Of This Mean?

  • First thoughts – Dr. B will oversee our care, and we will rely on our local family doctor to help manage our care locally. But, we cannot completely eliminate our local RE form the equation because I NEED them if we have another miscarriage. They were freaking phenomenal with our fourth loss, so we will continue to tread very carefully when it comes to that clinic.
  • Both my husband and I are feeling like we are in information overload right now! As we have not seen Dr. B and therefore do not have the results of the testing yet, we will wait until we see him next week before we rush to make any concrete decisions. We will take a few days/weeks to sort through everything and decide on the best course of action.
  • The only significant decision we have made, which we actually made a few weeks ago when we decided to seek Dr. B’s advice is that we will actively be trying not to get pregnant this cycle. We want to wait until we know what Dr. B says before we try again. This will be the first cycle in over 2 years that we will either not be trying, pregnant or going through a miscarriage.

 If you like this post, please feel free to share it and please return to myperfectbreakdown.com to follow my journey.

31 Comments on “Information Overload: A Summary of Appointments

    • We really weren’t surprised by our RE’s reaction, so we aren’t really disappointed by it. You are definitely right, it would be nice if were a little more open minded.

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  1. I’m curious to see what Dr. B finds. I’m hoping it’s nothing that requires IL and that you can proceed with Heparin & low-dose steroids.
    The Heparin shots suck & some days I wonder if I *really need it* given that I showed no clotting disorders. Then I think *but what if it’s making the difference*, and I suck it up & continue to give myself two shots a day (along with welts & bruises). It’s totally worth it if it in any way contributes to a healthy baby. I didn’t do steroids this cycle, but my immune system showed no signs of inflammation & pregnancy actually put my disease in complete remission! But I would’ve gladly taken steroids too, and in fact did try them with a couple IUI’s.
    I really believe you’ll have your rainbow baby. XOXO

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    • Thank you so much for sharing your experience with heparin – like you, I figure I can handle twice a day shots if that’s what it takes.
      We are just hoping that he will just recommend Heparin and low-dose steroids, because we can easily afford them. But, if not then we will cross that bridge when we get there.

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  2. I so hope Dr. B is able to help you find some answers! I may be paying him a visit soon so I’m really excited to see him work a miracle on you soon 🙂 I’m glad to see the call with him gave you some much needed hope and optimism!

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  3. I’m on information overload just reading that. I’m glad you are in (a lot of!) good hands and that you are doing everything you can. It’s great to finally maybe get some answers and some hope though!

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  4. I’m so happy to see that you have a plan in place. It’s interesting that your local RE is so against the links between immunology and RPL. Did he give you why he didn’t believe in it?

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    • We are so hopeful that this plan will at least result in an answer.
      As for our RE’s opinion, he always says that the evidence isn’t strong enough, so they do not believe in it. We’ve stopped pushing for a better answer, because he clearly doesn’t want to give us one.

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      • It is absolutely frustrating, but it was also a very good motivator to encourage us to seek a second opinion with one of the very few RPL experts.
        Thank you for your hope! We too are hopeful and excited! And, really, if nothing else, at least we will have a few fun days in NYC. 🙂

        Liked by 1 person

  5. I hope with all my heart that Dr. B can and will help you. I remember my phone consult with him. He was a fast talker and I couldn’t write down fast enough all the things he was telling me. In the end we decided not to pursue the testing and just went ahead with our next IVF cycle. I hope that everything will fall into places for you!

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  6. Information overload? Yes. But there is also something incredibly empowering about it. Though I sorely wish you didn’t have to, I’m so happy to hear that you’re taking some control over this situation!

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    • Thank you so much. It does feel good to have some direction and to at least know what the next few weeks will look like. I truly hope this results in a much needed answer.

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  7. I’m glad it at least sounds like you may be making some progress with everything. Sorry your one Dr seems to be so difficult…hopefully you’ll be able to take your next steps without needing him too much. Crossing my fingers that they figure things out soon so that you can get your happy ending!!!

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  8. I tried several times last night to comment on this and my silly tablet would not let me. Now my brilliant ideas are long gone. 😉 I am so glad you are getting the care you need and have some local docs in your corner. You are so much more forgiving than me with first impressions and ego. I am looking forward to some more good news in your future, delivered with some road bumps but that’s to be expected. Good luck this week!

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    • Thank you! I’m forgiving about the ego, because I don’t need him to be my friend. I need him to get me an answer and a solution, and so long as he provides me with at least an answer, then I don’t care in the least what his personality is like.
      Thanks so much! Best wishes to you in the upcoming week as well!

      Liked by 1 person

      • I don’t know. When I cannot communicate effectively with someone because they don’t hear me because it’s all about their superior intellect and denial of my expertise because I’m “just”t he patient, ego matters. It has nothing to do with liking them for me though I do prefer when I can find some way to relate and like things about my care givers because this is a pretty vulnerable piece of business in which to be immersed with people you hate.

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  9. I’m so confused why most REs don’t give more credit immunology. I’m so happy your GP is willing to work with Dr. B. I really hope Dr. B will have some better answers for you then your RE!

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