Today’s Dilemma & a Question for Ya’ll

I have it on good authority (online friend and fellow DE IVFer, IF and RPL sufferer) that my blood test results from Reprosouce, the lab used by the Reproductive Immunologist we saw in late July (Dr. Braverman for anyone who just joined the show or has been on vacation – literally or figuratively – during my recent posts), should be “in”.  By “in” I mean that Dr. Braverman’s clinic should have copies of them.   I say this because my friend, who had blood drawn the day before the LP and I did, has her results already (obtained through her IVF clinic at home, who was sent a copy, not through Braverman’s office, although Dr. B did tell her in an email that he’d need “a few days” to review and do the protocol design – she’s chosen the same menu item as we did from his list of offerings).

On July 31st, Dr. Braverman told us to expect to have a further consult with him to review the results and receive his proposed protocol (or his conclusion that the tests revealed nothing particularly problematic and there was no need for a RI-designed protocol – highly unlikely if only because that would cost him instead of me $2,000 USD).  The nurse with whom he works exclusively said 4-6 weeks on the same day.

In other news:  We have a teleconsult (or Skype if we so choose) with an RE closer to home (but still a flight and hotel accommodation away) who is not a reproductive immunologist but does believe in immunological causes of recurrent pregnancy loss/IVF failure/miscarriage and prescribes some immune treatment protocols for patients with such histories.  I’ve got another friend who is successfully pregnant in her 40s with her own eggs after a fresh IVF cycle with him using a prophylactic immune protocol despite having had numerous unsuccessful cycles after a live birth with another reputable clinic (that does not do immune protocols to my knowledge and certainly didn’t with my friend despite her history).

I’ve had extensive communications with this clinic’s lab director and intake coordinator on the premise that we need a clinic and lab that can work with the two frozen DE embryos we’ve got and who will work with Dr. Braverman should we get a protocol design from him to address any immunological issues he may identify in the coming weeks. They’ve got all of my/our records including all testing to date as well as a breakdown of my RPL history.  The consult is scheduled for September 4, 2014.

The Dilemma and Question for Ya’ll:  Do I call or e-mail and find out if I can get a copy of our results or wait patiently for Dr. B to take his sweet time getting to my number in line?

Let’s consider some of the pros and cons of jumping the gun (i.e., asking for results before our next consult with Dr. Braverman).

Pros:

  • If I can get the results I could share them with the RE closer to home at our September 4th consult, even if we haven’t consulted with Dr. B by then (which would be the case if he sticks to his 6 weeks projection);
  • I might have some idea whether there are any results that suggest a bona fide immunological issue to contend with (see point number two under “cons” for the corollary to this);
  • If I asked and Dr. Braverman consented, maybe he would get our protocol design done sooner so maybe we could start the FET process sooner rather than later (i.e, in late August/early September instead of late September/early October seeing as how I am expecting my next natural cycle to start at the end of August);
  • I paid for this stuff, I have a right to a copy on demand, don’t I?; and
  • I’m tired of being in limbo and not having any real answers to why the heck my womb is so welcoming of but so destructive to the little lives we conceive and getting the results, even if I can only understand some of them, could either:
    • if they show abnormal levels, help me feel like there is a reason for all of this madness; or
    • if they reveal nothing out of normal range as most of my results have done to date, allow me to start the process of grieving and accepting that unless we chose to use a gestational carrier – which we cannot afford – then this journey is finally and truly over for me.

Cons:

  • Dr. Braverman’s office will refuse to give me the results on the grounds that they don’t do that until he is ready to discuss them or I’m an established (i.e., vintage) patient of his, in which case I may develop a bitter taste (i.e, contempt) for and latent (or express) hostility toward yet another medical professional who, arrogant or not, I need far more than he needs me;
  • Even if I can get the results, I will have no idea what the results mean without someone far smarter than me in this area interpreting them for me;
  • Sleeping dogs don’t bite.  Translation:  whether we get the results or not and whether I understand some or none of them, I will spend the next several weeks in agony waiting for the follow-up consult to help me figure out what the hell they mean if we get the results and why the hell I blew ~$7,000 travelling to New York to consult with and have testing ordered by Dr. FIGJAM (see postscript at end of this post if you aren’t familiar with that abbreviation) if I ask but am refused a copy of the results before the follow-up consult;
  • If I asked and Dr. Braverman consented, maybe he would get our protocol design done sooner so maybe we could start the FET process circa September instead of October; and
  • If I didn’t ask or if he refused to give me results before our follow-up consult, I would be guaranteed to wait until at least late September or early October to start any FET cycle we may decide to do with Dr. Braverman (if we go with the clinic closer to home, I have no idea when they could have us start, so this may be meaningless if the protocol design was not super aggressive and I felt comfortable going with the closer RE and his lab can accept our embryos).

When I review my cons, I see that I am essentially afraid of rejection and it sending me off the deep end should it occur.  Initially this made me bristle and think I should demand the results now, darn it.  On reflection, I am not so sure about that.

When I review the pros, I see that I am scared and impatient.  Ugh.  I do not like those characteristics about myself, though I know them well.

August was supposed to be our “month off”.  Except I’m on these liver pills from the TCM doctor/acupuncturist and while they do seem to correlate with a decrease in some of my immune/allergic responses (my eyes are feeling better in particular but I am just entering my luteal phase so that could change in a few days), they also seem to correlate with an increase in the depression symptoms I was experiencing before I went on them (though that could be coincidental, I’m less inclined to believe that the other correlation is coincidental).  And even if I can’t blame the new crap I’m ingesting (no disrespect to TCM or my acupuncturist angels intended), I need to be honest with myself that:

  • I am [insert expletive here] miserable;
  • I want to quit;
  • I hate this rollercoaster; and
  • I cannot, despite all kinds of well-intenioned advice, just “turn off” for a month and “enjoy life”.    

I have a little more to say on that last point.  The unavoidable fact (which people who have not been where I and those of you who are also “here” are do not seem to “get” even if they say “I get it that…”) is that secondary infertility and recurrent pregnancy loss define who I am every minute of every day so long as I am on this “journey” to have another living child.  This is not me throwing a pity party.  I am not feeling sorry for myself.  I am acknowledging the well into which I have fallen and from which I cannot readily get out.  I am where I am.

The sad [insert more expletives (the really nasty ones) here] reality is that my pain is not only a constant presence – even if I try to avoid thinking about or feeling it for a month (who really thinks a person or at least this person can do that?  Why do otherwise sane, sensitive and compassionate people even suggest this?).  Beyond a constant presence, my pain over our lost babies and inability to stay pregnant has become a defining characteristic of who I [insert really nasty expletive here] am in this very moment.

If I practice mindfulness, what I know about this present moment is that my heart aches and I feel broken beyond repair, even if I can behave pleasantly, playfully or professionally depending on what’s required of me at any given moment in my waking hours.  How can anyone ask me to take a vacation from this knowledge and reality for any period of time?  If that is truly possible, I need an instruction manual and some real life examples of how to disengage from the suffering that has come to define who I am right here, right now.

At this second I am leaning toward waiting my turn, as completely uncharacteristic of me as that sounds.  In case it is not completely obvious from the caveats in the preceding sentence, I must admit that my leanings could change in a heartbeat.  In fact, as I was drafting this post I was quite sure I was going to conclude that I should ask for my results before the 6-week mark.

In light of my inevitable equivocation, I am turning the mic over to all of you.  Your mission – should you choose to accept it – is to riddle me this:

  • What do you think (about any of the above, if you aren’t inclined to vote on “ask” or “don’t ask”)?
  • What would you do and why?
  • Where does one get the manual on how to disengage one’s present reality?

Please accept my sincere and immense gratitude in advance for sharing your ideas and experiences.

Hasta Luego, amigos mios!

 

P.S.  FIGJAM = F*** I’m good, just ask me.  I credit the LP with having taught me this while watching some stupid masters or another on the Golf Channel.  He used it in relation to a certain player whom some of you or your significant others may know. 😉

 

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26 thoughts on “Today’s Dilemma & a Question for Ya’ll

  1. I called Reprosource and demanded my results–I PAID for them, not Dr. Sher. I think they ultimately sent me my results. But I’m not positive–I may have gotten them from SIRM. Best practice is to call Reprosource to see if they’ve released your results to Braverman. If they have, call Braverman and request a copy in the mail, post-haste, *because you need to share them with your allergist/rheumatologist/etc.* (was my spiel, and it was true). They shouldn’t have a problem with it. XO

    • I have thought of that (the “I need them to share with X”) but I think I need to dig a little deeper and figure out what my other reservations are in rushing this process. I feel as though I rush *everything* to do with RPL, IF, TTC and maybe for once I need to stop and let things just happen. Like you not testing early this time and look what happened (as an example). I want to follow up to get my results when I feel in my gut it is the right time to do it and the right thing to do. When that happens, I know I will be ready. But I wish I had some idea what’s holding me back other than a desire not to give in to my impulsivity. Maybe my reservation is the very real possibility that the results will show we have HLA matches, which could put an even darker shadow over the future for me (and possibly a white flag in surrender instead of another FET)? I’m going to sit on it for the weekend and see what my intuition tells me. Thanks for your support, you know it means so much to me.

      • I didn’t realize you were apprehensive about obtaining the test results–what I gathered is that you wanted them ASAP so you can move forward. It’s true, sometimes ignorance is bliss. There’s nothing wrong with waiting, so please don’t feel pressured by my suggestion. XO

        • Ha ha – I don’t succumb to peer pressure that easily, at least not about this stuff, not to worry. What the responses showed me was that I did not articulate the misgivings I’m having, mostly because I cannot do that very well at the moment. I can’t tell if it’s that I don’t want to be “weak” or that there is something deeper (akin to ignorance being bliss but perhaps something more than that). I think I’ll just sit on the fence but I do find it helpful to know what others would do. It helps me figure out where I’m at and how I fail to communicate all of what’s jumbled up inside. 😉

        • Well no, I wasn’t insinuating you would “succumb to peer pressure”.
          I’m saying “I didn’t mean for you to feel pressured!” Not at all.
          The tests are difficult to interpret–I spent many hours trying to decipher mine and was never sure until I saw another RE and confirmed (I declined to consult with Dr. Sher after he stood me up for a conference call.)
          That was how I dealt with it. But I support you proceeding however you see fit–there’s no “right” way. XO

  2. I think mylifeasacasestudy’s reply is a good idea. You deserve some answers and waiting is the worst! I’m sorry you’re going through such a difficult time! ❤

  3. I tend towards demanding things ASAP and then kind of freaking out when I can’t interpret them myself. That’s not to say I recommend this approach for you, though. I do think if your primary “con” is fear of rejection, that’s not a reason not to ask for the results. They ARE yours and 6 weeks seems rather unreasonable, given the world we live in (or is this more about patient case load? I can’t recall now) and also IF is so laden with waiting already that it kinda chaps my ass when docs don’t recognize that and do whatever possible to shorten the time in purgatory, even if by only a few days.

    • Thank you. I think there may be a deeper reason I am hesitating to ask… something about me exercising restraint… something I can’t quite articulate… That said, I totally agree with your other comments – the frustration of waiting, ownership rights, the purgatory of it all… The 6 weeks is a case load thing, yeah. Or so the doc says.

  4. I would absolutely call and ask for the results. Unfortunately, we are so often in the position of having to advocate for ourselves, ask for what we need, and push our providers to be responsive. I hope that, whatever you decide, you are able to move forward in a way that feels right.

  5. So my two cents, for whatever it’s worth, is to ask for your results. They are your results after all. And while I do understand the fear of knowing, I tend to think the fear of the unknown is even worse. As for not understanding the results, well, that could be a real issue. In this day and age though, it seems google can actually give at least general information to help you understand, or, there is always your fellow bloggers. I tend to think many of you know more than my doctors most days! Good luck with whichever you decide 🙂

    • First, thank you for weighing in. Second, from communicating with others in the same boat (i.e, getting complex RI test results), I cannot find ONE person who fully understands the results I can expect to get or who truly knows what they mean in the big picture except as their own results have been explained to them as a global diagnosis. So the fear of the unknown is a little more complex here than me asking for my FSH or TSH or similar results. I could get results and spend the next 4 weeks freaking the hell out of myself… for nothing.

  6. I don’t have time to write much right now, but I just quickly wanted to say that until you are ready for the results, I don’t think you should push for them unless they will help with another medical appointment. Personally, I would want my results. I find that the unknown is worse for me then anything else, but just because that would be my course of action doesn’t mean it’s right for you.

    • Thank you for taking the time to share your thoughts. I know I will do what is right for me when I am ready. Hearing others’ views and what they would do in my shoes helps me gain perspective and explore what I am feeling and why (because I am still sorting that out).

  7. I can see you’re very conflicted with whether to find out or not, and wish I had good advice for you. The only thing I will say, is remember what your acupuncturist said, follow your gut hon. It won’t steer you wrong. If you do decide to get the results right away, it sounds like MLACS suggestion should work. Sending you strength and clarity hon. One way or another, I hope you get some real answers soon. Hugs.

  8. I know you asked a lot of questions so forgive me for just mentioning this. Dr. Braverman also told me that my results would take 6 weeks, and we heard back in about 3 weeks. I hope that happens for you too.

  9. Quite a dilema. I’m not sure what I would do. I think asking for them could be good to feel in control if you are the type of person to take from it only what you understand, and not stress about the rest until you have a professional explanation. Gosh, the impatience for knowledge v the fear of finding out. 😦 Also, I wish I could say something helpful so you didn’t feel so bad but I’m pretty sure I can’t so am just going to say that I’m thinking of you and hoping someone can throw a ladder down to you in that whole. Meanwhile, I will sit hear and listen xxx

    • Thank you for this honest and compassionate response. I think I am going to ask the lab next week to tell me if they have sent the RI our test results. Then I can weigh out whether to ask for them.

      I don’t feel any worse than usual some days. Others the well is quite dark. I appreciate you sticking around and listening.

      How are you doing?

      • Feeling flat can be an improvement sometimes, eh?! Who would have thought that sometimes being flat would be the mood we are aiming for! Hah! There are times when I’ve quite liked that place. Almost somewhere to hide from any emotion for some respite. I’m actually pretty good! I think eating good fats and ditching the vegetable oils etc, gluten free and refined sugar free helps me feel more energetic and more level. Also, making an appt with the specialist and the counsellor has made me feel pretty good. I kind of feel like it’s moving things closer and I’m looking forward to feeling better mentally and also closing this whole infertility story down. I was told that unexplained couples have really good odds with IVF, and my clinic has a 83% hit rate with first time efforts for my age range so I feel optimistic about that. I guess it’s hard to see how a natural conception would work now after all this time, but an assisted one, well, it’s a whole new game! Still struggling a bit with anxiety the last few weeks, but again, optimistic that I can break free of those chains by attending my counselling appt which is mid week. Things can only get better, right?!! Hugs, love to you and hoping contentment finds you soon. XXX

        • You sound so buoyant and hopeful, that’s fantastic! I have had more energy since cutting out grains and sugar as well (I had to cut out dairy last year due to a sudden shift in my allergy to it where it made my throat itch and swell or get sore). 83% for first time IVF is fantastic. And isn’t it covered for you, for the most part (is any of the expense out of pocket?), if you get approval – can you get approval?

          Funny to aspire to flat emotionally but sometimes that is a significant reprieve so under the circumstances, I’ll take it! I think the tide is turning and I hope to feel a little more myself soon, but I am reticent to go back to the Mary Poppins place I was in about DE IVF solving all of my problems that I was in this Spring. That innocence is lost, too. There has been so much loss along the way, one wonders how we keep chugging along. One foot in front of the other, I’d say. 😉

          Wishing you peace and enlightenment and coping strategies for the anxiety at your counseling appointment and so much continued buoyancy in the coming weeks. Love to you as well, my friend.

  10. Pingback: Gratitude, an Update and Animal Spirit Guides | spiritbabycomehome

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