New plans, new hopes, new worries

Since the somewhat disappointing lecture by the local RPL specialist, I was left feeling this path wouldn’t lead me to the answers and results I was looking for. Of course, I’m rational enough to admit that it’s way too early to say if this doctor can help me or not, and these feelings are probably resulting from my general distrust in doctors (caused by recent repeated bad experiences). 

Wouldn’t it all be much easier if I just let go and trust that this doctor has my best interest at heart and he’ll do everything possible to help me? Yes, certainly. Unfortunately, I’ve been through enough to know I must advocate for myself; or maybe I’m just a cynic distrusting person that adds unnecessary angst to my own life. Take your pick.

After feeling miserable for some days, I decided to pursue other options. I’m going to my home country to see another reproductive immunologist (RI) for a second opinion. Yes, it’s crazy to go after a second opinion before even hearing the first opinion, but I just can’t sit on my hands, watching time pass by, hoping for the best, any longer.

Originally, our plan was to visit my family in late May. My father is turning 70 and my mom is organising a huge party. We thought of staying for a couple of weeks and seeing the RI in this time. He offers lymphocyte immune therapy (LIT), which seems to not be available here, and I was hoping I could get at least one dose during those weeks. 

I contacted the doctor before booking my flight, as I wanted to make sure we would stay there for enough time to allow tests and possibly this treatment (if at all necessary). They explained that I could do the tests and have the results in one week, however the LIT treatment usually consists of 3 doses taken 3 weeks apart. Since the “medicine” is essentially my husband’s filtered blood plasma, this meant we both would have to stay for a minimum of 7 or 8 weeks. We obviously don’t have enough vacation days for that. Again, the helpless feeling was taking over. 

I thought about it. Staying away for a couple of months started to look plausible. We would be staying at my parents’, so virtually expenses free, and we have enough savings that taking a 2 months non-paid leave at work wouldn’t be so strenuous financially. As long as we can arrange everything with our bosses in good time, it’s probably not a big issue. If that’s what it takes for us to achieve a healthy pregnancy, it’s certainly a small price, all considered.

Moreover, several weeks of stress free ‘vacation’ might even help me. Turning it around and taking this time to relax and maybe even travel a little with my husband just before we embark on the trying-for-a-baby train once more, might just be what I need. Or at least that’s what my counsellor keeps telling me.

A few days after the new clinic’s info meeting, I had a session with my therapist. Seeing how unwell I was, she again suggested I take a short leave of absence from work in the basis of stress. She’s been trying to convince me for a year now and I keep refusing it. I know how stupid it sounds that I’m literally paying her for her expert advice but refusing to follow it. 

I don’t know why I can’t let go. I tell her it’s because being off work would only be a short term relief and as soon as I would come back, the stress would come back; unless a long-term solution for my problem (a healthy pregnancy or a decision to stop trying) presents itself in the meantime, which is very unlikely in the next few months, as we won’t probably have our FET until June. She tells me, you admit it will help you now and that’s what you should focus on, how you can get better now. We will see how it goes after it when we get there. She’s right, but not convincing enough. It sounds like palliative relief and not a solution.

Another reason for my refusal is fear of failure. Or admitting failure. I already have enough feelings of failure, thanks to RPL and infertility: failing my babies, my husband, my friends and family, etc. My job is, in a way, the only aspect of my life not (completely) falling apart; the only part I can feel (or pretend) to be my old self, before all of this. It’s hard giving that up. Even though, in all honesty, it’s nothing like 3 years ago. My relationships at work are everyday more strained, my motivation is low and although my performance is still remarkably high (or so my boss keeps telling me), it has significantly decreased (or so I notice). 

Well, being ‘forced‘ to stay at my home country for 2 months for medical treatment would allow me to stay away from work for some time guilt free. I might be addressing two issues with one blow.

With this new perspective in mind, we decided it’d be OK to stay so long, but we need some time to prepare for it. So we booked a consultation and our flight to Easter week. We’ll run all the tests and it will give us enough time to compare the recommendation of this RI with the local specialist’s and make a decision, before May, if we should pursue LIT at my home country (in case the test results say we need it).

There’s, however, another source of worrying with this plan (well, more than one, considering my relationship with my parents’ and my sister being somewhat complicated and living at my parents’ for so long not an easy task). My home country, being in South America, is infested with Zika virus. I’m sure by now everyone have heard of the correlation between Zika infection and babies being born with microcephaly, encephalitis, stillborn and miscarriages. Since it’s a new discovery, there are no cures and no vaccines yet and doctors can’t even say for sure for how long after an infection it would still be dangerous to attempt pregnancy. The current advice is to wait 2 months. 

March til May is the raining season in my hometown, which means mosquito season. Right when I expect to be there. Zika is transmitted by the same mosquito that transmits Dengue (a more dangerous disease than Zika, but not especially threatening to unborn babies). When thinking about how widely spread Dengue is, and how virtually everyone I know have had it at one point or another (I’m one of the lucky few to never have gotten it), it scares the hell out of me how easy it probably is to catch Zika. However I can also turn it around and realise we never got Dengue when visiting my family, even though we never used any protection against mosquitos.

We are only staying for a week at first (Easter) and I’ll cover myself top to bottom in repellent. We are also not having a FET in less than two months after we’re back, so we believe it’s a small risk. 

In case we’re unlucky enough to catch Zika and it somehow impact our future child (many may have Zika during pregnancy and still have healthy babies), I’ll probably never forgive myself for taking this seemly unnecessary risk. But is it really fair? Aren’t we risking ourselves to getting hit by a car every time we walk on the streets or dying on a plane crash each time we fly? We can’t control these events any more than I can control the outcome of my pregnancies (with or without Zika), so I’ll bathe in mosquito repellent and hope for the best during that one week. A longer stay poses a higher risk, but we decided to discuss it with the doctor over there before making our final decision.

In case you’re wondering why would I trust this RI any more than I trust the local specialist, I’ll answer you sincerely: I don’t. And because of that, I’ve also booked a free 10 minutes Skype consultation with Dr. Braverman (considered by many the best RI in the world). I want to hear his opinion on my case and what are the opportunities for long-distance treatment. I’ve also started on my US Visa application, in case we decide to go to NY to be examined by him. 

In short, here is where we stand now: plan A is still to pursue treatment with the local specialist, since it’s the best option from a practical and financial point-of-view; plan B is to complement with other treatments in my home country, if necessary; plan C is to go after Dr. Braverman, in case the other treatments fail. 

If I seem desperate, I probably am. 

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29 thoughts on “New plans, new hopes, new worries

  1. I think you’re doing absolutely the right thing. I went to see a specialist in reproductive immunology after three losses, even though I was told to ‘just keep trying’. You have to do what feels right to you and explore all avenues. It also keeps you sane to feel like you’re doing something productive too I’ve found. I really hope that things work out for you and that you get some answers xx

    Liked by 2 people

  2. Blindly trusting a doctor is a good way to waste your time getting bad care. You may call it your attitude (which I share) cynical but I call it being an active participant in your own treatment. Don’t apologize or feel bad for it.

    Liked by 2 people

    • Thank you, I’m really only trying to advocate for myself, but having received so much push back from doctors (one even yelled at me for 10 min while I sat there crying, just because I asked if he could check my progesterone level) that sometimes I wonder if I shouldn’t just trust them more… But your support is really appreciated. Hope everything is going well with you and your baby!

      Liked by 1 person

  3. I think the second and third opinions are such a smart idea. I am also a little wary of doctors, as I feel only I truly have my best interests at heart. The consult with the RI, wherever you go, will either find something or give you the peace of mind that that avenue has been investigated. As for Zika…you’ve gotta do what you gotta do. Does your country of residence have the ability to test you for the virus? If so, you should have them test you before the FET. Good luck!! And I hope the travels are relaxing!

    Liked by 1 person

    • Thank you for the support! I really just want to be sure I tried everything… If no one can give me a reason I’ll probably go ahead with the FET anyways, but I just don’t want to have another miscarriage if there is a way to help avoid it. And I’ll try to get tested for Zika before the FET, that’s was a great reminder!
      I’m looking forward to hearing more on your IVF cycle soon!

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  4. Hmm I don’t think it seems desperate. Believe me, I’ve been researching adoption and donor sperm and and the odds of having a 3rd NTD if we decide on just trying again naturally. I wish I could just focus on one, but when you’re waiting for a healthy baby after losses every day of waiting is too long, and answers are too far and few between. It’s a lot to juggle though.
    As for work, I identify with work being the only thing going “right”, or so it seems. At least when I’m at work I’m distracted from my personal life and losses. The most I ever took out of work was two weeks, but I didn’t have to tell them why. Being at work feels normal, when everything else about my life feels abnormal.
    And for the record, I do not think you are a failure. These are just crappy circumstances that we can’t control. xxx.

    Liked by 1 person

    • Thank you for your kind words! You’re so right when you say every day of waiting is too long… Why can’t science be more advanced and just have the answers we want?
      Work is a good distraction for me too, even though everyone seems to be pregnant or with a newborn now (and there are so few women in my office!). But triggers are everywhere, so we can’t escape them…
      Hope you’re able to make a decision you feel comfortable with soon. Hugs

      Liked by 1 person

  5. I can totally understand your feelings!. We are on same boat as yours. After 4 miscarriages, I switched my RE and clinic in search of answers for my losses. My current RE also did not find any specific answers for my losses. Then I started seeing a reproductive immunologist at Chicago. She found 3 clotting disorders (My other REs did not tested for it) and high NK cells activity after the extensive blood work. We started her protocol last month and I will be on blood thinner daily injections and IVIG infusions from next month. It is always good to get a second opinion!. All the best..

    Liked by 1 person

  6. I’ll echo these supportive comments! You are pursuing every avenue available with thoughtful consideration. Second, third opinions are great. They will give you more information to guide your decisions. You are brave and dedicated, great qualities in a mother!

    Liked by 1 person

  7. Wow. Lots on your mind. I can relate to not wanting to take leave from your job for stress. I had that view too. I said the other day it was foolish of me to have taken the staunch position I did but of course hindsight is 20/20.

    FWIW sometimes Dr. B recommends donor LIT – not from your partner – depending on whether you and he have insufficient HLA mismatches. When is your consult?

    I’m glad you’re exploring options rather than waiting for the next number of miscarriages for Dr. Formulaic to decide you qualify for treatment beyond tender loving care. I sure hope you find a path away from so much misery.

    Liked by 1 person

    • Also. On the Zika issue. That virus has been around since the 1950s. Nobody cared when it was relegated to impoverished African countries. One more example of how poverty and misogyny suck and don’t make for sexy medical research grant approvals.

      Liked by 2 people

    • My consult with Dr B. Is on Feb 19th, so close! I’m a little anxious about it, not sure what to say in only 10 min! Have you done LIT yourself? Did it help you?
      I laughed so hard on the “Dr Formulaic” nickname!! I really needed that, so thanks so much!

      Liked by 1 person

      • We can’t get LIT here. So no.

        Try to ask what you want to know. What he would do differently than in the past. What you could expect. If he’s worked with anyone in any of the places you are or can relatively easily get to. He won’t likely have read your history in the 14-page form you filled out (do it anyway, his researchers read it if you hire him to give a diagnosis and design a protocol and he can pull it up during the call if need be) so don’t expect him to know the first damned thing about you. Annoying yes but I want you to be prepared to take charge not expect him to be up to speed. Don’t be surprised if he suggest possible endometriosis; it comes up for many in their consults.

        Liked by 1 person

      • Sorry for this late reply! Thanks for these suggestions, they’re definitely in my list of questions! I just hope I don’t get too nervous and manage to say everything I want (I’m usually nervous when speaking to a native English speaker as I think my English is not good enough, especially my accent).

        Liked by 1 person

      • Also if you are using Skype you should be able to tell if he’s having trouble understanding. I would start by asking him to let you know if he needs you to repeat anything due to accent or language use.

        He has quite an accent himself! Of course it strikes me as a hybrid Long Island, NY / Brooklyn accent.

        Liked by 1 person

  8. I’m just an internet stranger, and I’m projecting my own hard-fought career onto yours, but I bristle at the idea of taking that much time off of work — especially for a doctor/treatment that you don’t sound 100% on anyway. Unless you plan to quit work once you had the baby, I guess?

    To me, it would be a worst case scenario to have gone through all this loss, spent all this time and resources, and sacrificed your career too. I would think long and hard about the long-term consequences of missing that much work.

    Liked by 1 person

    • My career was hard-fought too, so I totally get what you’re saying and appreciate your input. I intend on keep working after maternity leave is over, I never thought of being a stay-at-home mom.
      I won’t take this decision lightly, but I do believe if I explain the reasons to my boss and HR they will understand. I’m lucky that my company is very understanding of personal issues and 2 months is not such a long time in my business (the development project I’ve just started in will run for at least 3 years).
      It’s still too early to decide anyways, I’ll first have the consult with the doctor and then I’ll have some weeks to think about it.

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  9. You have so much going on at the moment, crazy how life seems to just throw us everything at once. I think that taking some time off for yourself is a great idea and if you get to stay extra time with family that is also a blessing. I have taken the approach of taking time of from work for the past year and haven’t regretted it one second….well, I do miss the paycheck. Everyone is different and every situation is different and I hope that you are able to make a decision that is best for you. xo

    Liked by 2 people

  10. You are the only one who knows what is best for you, which doctor makes you the most comfortable, which approach is best, etc. No one in this community would ever think you are crazy for getting numerous second (third, fourth, etc.) opinions and pursuing your options to the end of the earth. Wishing you luck (and from your other post, sleep).

    Liked by 1 person

    • Thank you so much for your support. This community is the only place I feel safe to discuss these things and not feel crazy and judged, thanks for reminding me. I’m managing to sleep a bit more too! 🙂 Wishing you and your family all the best and a great weekend!

      Like

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