Tuesday 22 April 2014

What happened at the ER and POC testing

They saw me within 20 minutes or so of arriving to the ER.  I was thankful for that.  We spent from 11am until 3:30pm having ultrasounds, waiting on blood work (CBC normal, HCG 14,000ish).  Because my blood type was RH positive, I did not need an RH shot.

The ultrasound showed retained products of conception (I still really, really hate that term) at the base of the uterus.

A nurse practitioner did a vaginal exam, and tried to remove some of the visible POC.  Unfortunately, she didn't have much luck.

We were waiting on an OB consult, but decided to go home and have the nurse phone us with the information.  We were feeling much more relieved just knowing what was going on, so this felt like a good alternative to spending more time in the ER.   We were also hungry, which fuelled our desire to leave sooner.

Not surprisingly, the OB gave us three options.
1.  Wait a while and pass the tissue on your own.   Get follow up ultrasounds and blood work.
2.  Take Misoprostal to *hopefully* get the rest out.
3.  Have a D&C.

The pain of the natural miscarriage is too fresh in my mind.  I can't do #2 any day soon.  I don't see the harm in waiting a while to see what happens on it's own.

Maybe this is what I should have done, rather than go to the ER yesterday? I don't know.  It's easy to second guess things after you have all of the information.  Or, at least that's where my mind usually goes.   Yesterday, I was on the fence about the decision to go to the ER,  but CCRM, a ER nurse, and the nurse receptionist at my OB's all suggested I go in.  And I was freaked out, so I took their comments seriously.   Oh well, I suppose.  At least we know what was going on.

The CCRM nurse gave me a follow up call to see how everything went.  She agreed with the OB's three options.  We also discussed the POC testing.

A few days earlier, the CCRM geneticist told me that they haven't been doing this testing with Natera for very long.  The geneticist told me the test would cost $400 plus shipping.   When I called them to double check the cost of the kit (at D's prompting), they told me that it is $400 with insurance and $800 without.  We don't have insurance.   If there was no sample to test (because we didn't collect it properly), they would still charge us the full price.

We asked Natera questions about the collection of the sample.  We were really unsure about what we collected.  What we have looks nothing really like the pictures they provided, but there really wasn't anything else to select.

We were torn with what to do.  Maybe nothing looks like the diagrams because it is still inside me?  I don't friggin know.

I told our nurse that we were really at a loss for what to do.  I told her that for $800 I could probably buy myself something really great to make myself feel better for everything that's just happened.  Although, sigh, I wouldn't.

She said that it is very confusing to do the collection.  That she has been in the operating room many times where the doctors are trying to identify things appropriately and it is difficult.  She said that she has seen a lot of results come back as normal female (which doesn't mean anything because it could be my own cells).  She reminded me that there was no right or wrong answer here.  That either way, our decision would be ok.

After taking everything in, we decided not to do the testing (again).  I don't feel comfortable with what we have collected.  We don't have an endless supply of money to keep throwing at this problem, and I already feel absolutely sick about how much we have already spent.  The result isn't going to change what we do with our next transfer.  The information may have added something to the conversation if our next transfer is unsuccessful due to BFN or things much worse.

So now, I sit back and wait.  I'm hoping for cramps to help finish up this show, so this part of things at least can all be put to rest.

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(Note - CCRM wants a beta and an HSG or Sono after my next period to confirm everything is ok).

7 comments:

  1. Oh no. Why does this have to be so hard? No one should have to sift through "products of conception." No one should even have to know that term.

    I think you did the right thing regarding the testing. If it's not going to change your action, what's the point?

    If I can make one suggestion to you, it's don't wait too long to pass the tissue. I've only ever had a problem when there's been retained tissue. Could they even do it in the office (I've had a full D&C done in-office)? I would just HATE to see you go through excessive bleeding or anything along those lines as your body tries to work it out. I hope it happens soon, and painlessly. Enough, already!

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    1. Thank you for the advice. I will take this to heart.

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  2. Your posts break my heart. I wish I could take all of this pain and challenges away from you so you could just move on. I also think you made the right decision regarding the testing.

    (regarding your note…OF course they want you to call with CD 1 and get testing…what else is new CCRM) They drive me bananas sometimes.

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  3. Oh man. This stuff is all so hard. Don't beat yourself up about the ER... I would have been there too and I'm not an ER fan myself. Hoping that this all resolves quickly for you. I just hate this all so much. Sending hugs.

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  4. I'm so sorry. I wish that just one thing could be easy.

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  5. I'm so sorry. No one should have sift through their own products of conception. I'm sorry you had to make such tough choices in an already difficult time. Thinking of you!

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  6. Hi - I'm so sorry to hear what you are going through. I just experienced my first miscarriage of my first pregnancy, and had a D&C on 5/9. I came across your blog while doing a search for Natera POC testing. I did opt to do this. I will tell you though, that I spoke with 2 different people in their billing department, and they indicated that if your insurance didn't cover it or it was going to cost a significant amount out of pocket even with insurance coverage, they would give a special billing adjustment and only charge $95. I called back and asked another person just to confirm because I couldn't believe it. They said that $95 amount will never appear on the statement, but that you just have to call them and say you can't pay it and they will adjust it down. Of course, I have yet to see the final billing, so I can't speak with 100% certainty, but since I spoke with two of them and took down their names prior to making this decision, I felt (mostly) confident.

    Also, in reference to your comment: "She said that she has seen a lot of results come back as normal female (which doesn't mean anything because it could be my own cells)." - Another good thing about the Natera test that I have learned in my research is that, because they do the newer, higher accuracy microarray genetic testing, there is much less risk of the maternal cell contamination. The microarray testing also seems to test for a lot more genetic "stuff" and can be insightful.

    The results have been provided to my doctor already (there's a 5 business day turnaround, which is also a nice benefit to the microarray testing), but I don't have my follow up until next week.

    I just wanted to share some information that I've learned recently, and hopefully you won't actually need it going forward (however, Natera also does prenatal genetic testing and preimplantation embryo genetic testing that you may be interested in). My heart goes out to you, and I wish you a speedy recovery, and the very best of luck. I've only gone through this once, and it's been very very tough. I can only imagine how hard this must be based on your story.

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