And the Results Are In. Finally.
On Mr. MPB’s birthday we woke up much too early to my ringing cell phone. We had great plans for his birthday which consisted of not dwelling on our losses and sleeping in. So, when the phone started ringing and we didn’t know the number we just hung up the phone. The person was clearly determined to speak with us as they called back moments later so we decided it probably wasn’t a telemarketer and answered it.
It was Dr. Braverman! We have not heard from him in a long time, so we were most definitely not expecting a phone call early on a Saturday morning from him. Needless to say we forced ourselves awake pretty quickly so that we could actually engage in the conversation in a meaningful way.
Much to our surprise, my immune system does have some underlying issues, but nothing is particularly bad (or at least as bad as I was expecting). Here is the basic summary (please remember I am not a doctor, and this is simply my understanding of VERY complex medical stuff):
- HLA Analysis indicates that I have a predisposition to a few immunological disorders including Hashimoto’s thyroiditis, rheumatoid arthritis and primary biliary cirrhosis.
- Serum Cytokines Analysis indicated that all tested cytokines and chemokines are within normal limits or low. However, IL-8 and MIP-1β are both borderline elevated.
- Negative for all tested ANAs and APAs and anti-HLA antibodies.
- NK cell cytotoxic activity (NKa) is borderline elevated.
- Inefficient activation of uterine NK (uNK) cells by HLA-C on trophoblasts. This leads to shallow embryo implantation.
- KIR Analysis: KIR AB haplotype with no KIR2DS1 puts me in the slightly increased risk category. However, this is only statistically significant when fetus has more C2 than mother. And there is a 0% chance that any given fetus will contain more C2 than me given Mr. MPB does not carry C2. So, this is a non-issue.
So, what does this all mean??
- From an immunological perspective I have a predisposition to a few things: Hashimoto’s thyroiditis, rheumatoid arthritis, and primary biliary cirrhosis. This does not mean I will ever actually get these ailments, it just means that I have some markers in my body. I have more questions about this for Dr. B regarding my actual chances of developing any of these issues in the future. I’ll get around to asking him, but it just isn’t an urgent consideration right now (Wow, I never thought I would say that the potential of rheumatoid arthritis or primary biliary cirrhosis is not an urgent medical concern….).
- In his opinion, the combination of DRB1*04 / DQB1*03:01, elevated levels of anti-TPO antibodies, borderline elevated NKa, and borderline elevated serum IL-8 are all consistent with a diagnosis of endometriosis.
- The endometriosis finding is directly related to and actually reinforced by the Doppler ultrasound I had back at our appointment in October. We knew based on that ultrasound that I had some of the worst blood flow to my uterus that Dr. B has ever seen, and I he instantly expected that I have extensive endometriosis. In fact, I’ll quote this directly from the repot MPB’s “ovaries were both displaced laterally upon ultrasound examination, and Doppler analysis of blood flow in her uterine and ovarian arteries indicated significant resistance including absent end-diastolic velocity (AEDV)* in both ovarian arteries and AEDV with reverse flow in both uterine arteries. Increased resistance to blood flow in the uterine and ovarian arteries is frequently associated with the presence of pelvic inflammation due to endometriosis. Her ultrasound examination also showed evidence for possible adenomyosis.” From our discussion the day of the ultrasound, we know the low blood flow was critical and we knew this was likely the main cause of our losses. The new learning this week are the additional immunological links to endometriosis; the potential for adenomyosis; and, the confirmation of the even worse condition of AEDV. So, based on all of this, Dr. B and his team are rather confident that the AEDV is the result of endometriosis and adenomyosis. And of course, the only way to know with certainty is through laproscopy and hysteroscopy surgery. (*Note, that reversed blood flow later in pregnancies is often the cause of high risk pregnancy complications that often results in severely premature babies with low birth weights with long term health consequences. Stillbirths are also a common result. Having this occur prior to pregnancy is a significant problem and in our opinion this is a gigantic huge hurdle to overcome for us to even consider trying again.).
- In his opinion we will have a successful pregnancy with treatment. His treatment protocol will include:
- The laproscopy and hysteroscopy surgery is 100% required. We are 100% certain that we cannot get this surgery in our province in Canada. This means it will be 100% out of pocket for us to pursue it in New York. While the surgery itself is within the realm of our financial possibilities, the potential of complications are not. The risks associated with the financial consequences of an unexpected extended hospital stay and possible emergency surgery in New York are simply staggering.
- Interlipids. This is another treatment that we cannot get locally. While it is affordable to get it NYC, the logistics and financial consequences of regular visits to NYC make it a little less desirable and practical.
- Heparin. We can get this here and it will be covered by our medical plan, so it is inconsequential.
- Low Dose Steroid (likely prednisone). We can get this here and it will be covered by our medical plan, so it is inconsequential.
- Prometrium. We can get this here and while it is not covered by our medical plan, the cost is inconsequential. In fact, I have a lot of it sitting around the house from our failed pregnancies.
So now that we understand the science, what does all of this really mean to us from a practical, next step perspective?
Out of all of his findings, our big surprise is that my immune system is in better shape than we had ever expected. So, IVIG is not a requirement for us, and is not even recommended. From a financial perspective, IVIG was an impossibility, so it’s nice to have it removed from the treatment plan.
While IVIG is off the table, the out of country surgery is absolutely required. From a financial perspective, the potential of complications without insurance this is simply not a gamble we can take. For us, to squander our life savings and remortgage our home just for a better chance at a successful pregnancy makes absolutely no sense. We’ve worked very hard to be able to afford children, and to provide them the life we think they deserve, so to gamble that away just doesn’t make sense in our minds. Simply put, it would be irresponsible for us to take the risk when the potential outcome is bankruptcy.
And, since I’m being honest, I have to admit part of me is skeptical of the endometriosis diagnosis. Yes, we paid a small fortune to get this information and now I am doubting it. I have zero traditional endometriosis symptoms and our doctors here have already told us they do not support the findings. So, part of me wonders if Dr. B couldn’t find anything else wrong from an immune perspective, is he just saying this is most likely the problem because he need to say something? In some ways I’m almost disappointed at the lack of findings, and a pretty generic treatment plan that he uses on almost all his patients. I assumed I’d at least have through the roof high NK cells, or something else more typical of RPL patients. Maybe, this doubt actually is just the result of my distrust of medical professionals being able to really help an RPL patient? We’ve had a long history of being told we are healthy and there is no reason, so maybe now I’m just being skeptical? We went to Dr. B because he’s the best, and I do know rationally he would be telling us exactly what the data says. But, it’s has been nagging at me all week.
So, we will continue down the path of international adoption from the USA. From a purely financial perspective, we will probably spend a similar amount of money, but we are virtually guaranteed a child at some point. From an emotional perspective, I cannot face another miscarriage right now so trying again is off the table. Maybe one day we will revisit another attempt, but for now, it’s a non-starter.
So, what does this all mean for us? It means that absolutely nothing changes from last week to this week. It means we will not be able to carry a child successfully to term anytime soon. It means we have peace of mind in our decision to stop trying again. It means we will continue down the path of adoption without any nagging doubts. It means we step off the crazy train and move on with life.
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This is really interesting, thank you for sharing. I’ll be having similar tests in the near future I expect, so it’s great to see how it all works!
I’ll bet it’s a lot to take in, but I’m pleased that you’re getting all the information you can to help your decision making. No one but you and your husband can decide what’s best for you, your sanity, your health and your relationship.
Best of luck with the adoption process, I’ll be following it all with happy thoughts for you both xx
“No one but you and your husband can decide what’s best for you, your sanity, your health and your relationship.” Thank you for sharing this line. You are so right, and we are thankful that we are able to move onto the adoption route together 🙂
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I’m glad you finally got the results and the waiting for that is over. On to the next adventure! xoxo
Thank you friend. You are right – onto the next adventure! 🙂
I’m so glad you got your test results, and that they confirmed for you that you are doing the right thing. It sounds like Dr. Braveman gave you the closure you needed and that you can now concentrate on adoption. I’m so glad you’re able to get off the “crazy train” that has been your life for the past few years. Good luck with adoption. We might seriously be looking into that soon ourselves, so I’ll be reading to find out what your experience is.
You point out a really important thing, Dr. Braverman gave us the closer we needed to move on and fully embrace adoption without any regrets. For us that in itself was worth the trip across the continent! 🙂
So glad you finally got answers- even if they left you a little wanting. If you ever decide to pursue the surgery route- I would be happy to help run an online fundraiser for you to help with the financials. You have been through so much- I think a lot of people would be moved by your story. That being said– I kind of feel like your mother’s heart is meant to care for and love an adopted baby who needs you so much. Xo
Oh thank you so much for the kind offer, you are too kind. But, I think you are right, at this point adoption is the route for us. While adoption is still incredibly expensive, we know it is the right route for us right now. 🙂
As with the others, I am glad you have finally gotten your answers, I wish they would have been something more helpful and definitive. My IF diagnosis was/is endometriosis. It was a HUGE shock to me, as I have no symptoms what-so-ever. No painful periods (in fact, mine are quite pain-free), very regular, no irregular or excessive bleeding, etc. So, it is possible to have endo and not have any signs. Yay me/us?! *hugs*
It sounds like we are two peas in a pod! My cycles and periods are just like yours, so the endo diagnosis is a complete surprise to us too!
I just saw this article, I have no idea how true or helpful it would be: Fish Oil May Curb Endometriosis And Cytokines
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Thanks for sharing! I always appreciate more information. 🙂
Bleh. I was also hoping for something more specific/ clear for you! But glad you still feel at peace with your decisions, that’s a great thingxx
So were we. But, like you said, at least we are at peace with our decisions and we can continue to look forward with hope. 🙂
It’s incredibly perplexing to me that a medical community would dismiss this possible diagnosis when then in almost all literature relating to endometriosis clearly writes that a woman can have stage 1-2 and be completely debilitated or have stage 3-4 and have no signs or traditional symptoms. There’s no ‘normal’ when it comes to endo. (I digress, we both know how I feel about ‘those’ doctors lol). And thankfully the first major study into the world on endo is finally being taken on and I’m looking forward to those results in a few years. But besides that, what I think is more important is going with your gut. The gut usually leads you down the path of least regret. I’m sorry it wasn’t more concrete in the findings. Where’s the damn magic pill already ?!?!! 😉
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Yup, don’t get me started on “those” doctors – I’ll end up writing a giant rant. 🙂
I’m so excited that a major study on endo is underway – I had no idea. Of course, by the time the study comes out it will probably be too late for Mr. MPB and I, but at least it can help other women! This is really exciting to hear.
If you find the magic pill, please send some my way, I could absolutely use it! 🙂
I am so gad you were able to get some answers and still have peace with your decision moving forward. I’m always thinking and praying for you! Love you lots! xo
Thank you so much Elisha. It sure is nice having answers and not having doubts.
The fact that none of this new information has made you hesitate about adoption makes me so happy for you. You’ve come so far since you first started thinking about it, and I’m just really glad to see that you clearly have so much peace with your decision.
You are right, we do have so much peace in our decision, and in many ways it is nice that the final diagnosis didn’t sway us away from the path of adoption. Thank you so much Molly.
I am glad you finally have the results and feel more confident in your plan of adoption. And now you know the recommended options. At least it provides *some* answers, and I am big on answers (even thought it seems like we never get any real answers.)
I couldn’t agree with you more – at least we have some answers, and the answers we have will keep us on the path towards adoption.
I am glad that you have some answers, even though you’re not as confident about them as you would like to be. However, I can tell that you are happy with your decision to pursue adoption, as this diagnosis hasn’t swayed you back to trying again, which is fabulous. You and Mr. MPB deserve a pot of gold at the end of your rainbow. Your experience with RPL was a terrible storm, and I can tell that you are following the rainbow right now, eyes focused on a more hopeful direction.
Thank you so much for your understanding. You are so right that I am not as confident as I’d like to be with the results, but at the same time I really shouldn’t be surprised that the results were not so cut and dry.
I love that analogy, we are following the rainbow now. beautiful. 🙂
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My laproscopic surgery (for an ectopic) would have been over $30,000 out of pocket, so yea, that’s scary. I’m sorry that your province wouldn’t cover this. Seems like maybe it could be covered to diagnose endometriosis? But I guess not.
I’m glad that this has not made you question your choices, and that you feel like you have some answers.
Evidently our province will not do surgery to diagnose endo, instead they just treat it symptomatically for as long as possible until surgery becomes a necessity. It doesn’t make much sense to me, but it is what it is and we don’t feel like spending a few years of our lives trying to fight the system.
Thank you for your thoughts on all of this.
I think doctors try desperately to understand recurrent miscarriage..but they are a long, long way from finding answers. I understand your scepticism…know yourself, know your body. good luck xxxxx
I completely agree with you, thank you for reminding me to trust myself to know. Thank you.
I’m glad that you got the results of your testing. I’m sorry that you don’t feel like you got the answer you were looking for. Have you checked into international health insurance or out of pocket costs for paying cash? Both should drop the cost significantly. Adoption still sounds like a great idea as well and I support you whichever way you decide to go
Thanks for the ideas – we have checked out both ideas. International health insurance does work because anything pregnancy related is excluded as it is now considered a pre-existing condition. And the paying cash option works, so long as there are no complications. The risks of paying our of pocket and having an extended hospital stay is just too big of risk for us to take.
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I was wondering if you had heard anything yet. I’m happy that you finally have some answers, even if you’re finding yourself doubting them. I admit I didn’t understand half of this post, but I did get the overall picture from it lol! At least now you can move forward with the adoption and not wonder any longer. I’m happy that you have some “closure” and can hop off the crazy train for a while. 🙂
Thanks Amy. I too will admit I didn’t understand half the information at first too!! I tried to write it as simply as I could, but its just not easy and straightforward information.
And you are right, at least now we really can move forward with our adoption and have no nagging doubts,
Wow that is a lot of info. I am glad you are getting the answers you have been looking for.
It really is a lot of information to take in! But, thankfully we were actually expecting worse, so we didn’t have to spend too much time digesting it. 🙂
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Why couldn’t you get the surgery in your province? (just curious) Not taking the risk is a completely sane move in my mind. I truly believe adoption will bring you less grief and a definite outcome. I’m seriously looking forward to your adoption journey. You have educated so many women on RPL. I know your adoption experience will be equally as articulate. 🙂
Thank you so much for your kind words of encouragement. 🙂
As for no surgery here, when we spoke to OBGYN with our preliminary results they said without being symptomatic they wont even consider taking the risks of surgery. And even then, they would just try to manage the pain through medication, and it would likely take years before I could get in for surgery. We honestly just don’t have the energy to fight the system for years on the off chance of getting surgery one day.
What a relief to finally have answers. I know how frustrating it is when the answers aren’t as cut and dry as we would like though. Sounds as though you guys have a great plan in progress! Congrats and many prayers to you!
You are right, I am a bit disappointed that the results aren’t more decisive, but at the same time we are relieved that we remain comfortable with our decision to choose adoption. Thank you.
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I’m so glad you finally got the results, even if they were a bit of a let down. It seems crazy to me that it took 2 months for this report. At any rate, I’m relieved for you that nothing really crazy came back and I don’t blame you for being skeptical about the endometriosis diagnosis. I know this doesn’t change your plan moving forward, especially since this didn’t really give you any more answers then you had before, but at least you now know what you can and cannot handle moving forward at this time. Maybe this will change down the road, maybe not, but for now you can focus on the adoption process with no regrets.
Ya, seriously, how did it take 2 months to tell us this? It doesn’t seem like our results were all that complicated, so I don’t understand why it was so slow. But, at the end of the day even though it took so long, I am a relieved that it didn’t change anything.
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How are you feeling about the diagnosis? I’m glad you still feel good about the adoption path. I’m also glad that your immune system is in better shape than you hoped. That can only be a good thing. I am relieved for you that you finally got those results back and they are no longer hanging over your head. Thanks for sharing this with us. I know it wasn’t an easy post to write.
Thanks for your thoughts. Honestly, for the most part I’m happy we spent the money and time getting the testing done so that we have no regrets. And due to the risks associated with the treatment plan we know moving forward with adoption that we have no regrets, and that makes it all worth it!
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I understand your skepticism about the endo diagnosis but even if you’re right (and I admit I am not convinced that you couldn’t have silent endo though I’m not convinced you do either), the exceedingly low or non-existent blood flow in your repro organs alone is enough to jeopardize any pregnancy. If I had that issue and were your age I would eventually find a way to do the lap to assess for/properly excise endo if found but I would most certainly carry on with the adoption plan in the meantime. More certainty, less stress, time to digest and find options for a Plan B should you one day choose to go there. I think you and Mr. MPB are doing the right thing for you now. That’s what counts.
Thank you so much for your thoughts. I kind of feel the same way as you – I’m not feeling particularly convinced either way about the endo, but the reversed blood flow in and of itself is a substantial hurdle to ever having a successful pregnancy.
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Endo is so weird. It’s like a great mystery. You may have it! You may not! We don’t know! (Which is so unhelpful!)
I totally understand your process here. There comes a point where you have to draw a line under something, and move forward. It sounds like this information is interesting and helpful, but that doesn’t mean it has to change your plans.
In summary, I’m validating all your choices right now. In case my unsolicited opinion on your life is helpful. 😉
You said it perfectly about the mystery of endo! Which I think is why I’m a bit disappointed that that’s the best our results show. Yet at the same time I know I should be elated that we don’t have bigger problems, but I’m not.
Anyways at the end of the day you are right, with this information we can draw the line and allow us to move forward with building our family.
And, yes, I do love your unsolicited opinion! I am grateful that you take the time to read and support me through everything.
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Thank you so much for this post! I am trying to decide if getting checked out by Dr. Braverman would be worth the cost when the treatment is probably not within our budget so detailed accounts of other people’s experiences are much appreciated! It’s also nice to hear someone else say they aren’t willing to go bankrupt in order to have a baby. I struggle with feeling guilty, since I am putting financial stability before having a baby when others seem willing to go into debt (and beyond) for it but I just can’t. Part of wanting kids is wanting to provide a good life for them and I won’t be able to do that if we go broke before they’re a year old.