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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