Thursday 17 April 2014

Meeting

We had a good meeting with Dr. Highrisk today.  We felt like he was much more on his game today.  He was way more talkative and was very helpful. 

He helped us weigh the risks and benefits of the D&C and the fetal chromosome analysis.   He said that he would put us on the operating room waiting list this weekend for the procedure if we wanted.  He told us though that he wanted us to know about some of the things he was thinking about. 

A few of the key things he told us:
  • In all likelihood, we would be at the bottom of the OR wait list, because practically every other case would trump ours in terms of urgency.   A long weekend approaching doesn't help our situation much either.  He said there was nothing he could realistically do to change our place on the waiting list.  For example, if a child came in with a burst appendix, they (of course) would go before my case. 
  • 50% of miscarriages in his opinion happen with genetically normal fetuses.  He said doctors really just don't know always what causes miscarriage.  (I'm not sure of what CCRM would say on this... have any of you heard anything from your doctors on this?)
  • He didn't feel confident that we would be able to capture the fetal tissue that we needed for the sample.  If the fetus stopped growing at 6 weeks, 3 days, and that was three weeks ago, there is probably not a lot of tissue left that would be suitable for the testing.  
  • He said he didn't think that the results of the chromosomal testing would substantially change our next step.  Are we going to put in more of the embryos that we have regardless of the result? Yes.   Would it mean our remaining embryos are more or less likely to be normal or abnormal? This would not help give us more reliable information.  
  • We asked what if it was a genetically normal result?  He reiterated that 50% of miscarriages might be chromosomally normal. 
  • The risks of complications with a D&C are 1-2%.   He explained the procedure and what can go wrong. 
  • He explained that he looks at things as risk/reward.  Overall he thought the risks were small, but the benefit of gaining any useful information would also be small. 
  • He explained why my first experience with Misoprostal might have been so bad: 
    1. It was a twin pregnancy and therefore there was twice the tissue.  
    2. I may have taken it orally (I can't remember), and this could cause more gastrointestinal upset (this was a huge problem - I couldn't keep my painkillers down).  That if I take it vaginally it could be easier on my system.
    3. That the first time a person's body has contractions for miscarriage (or labour), it is harder for the person's body to adjust to them.  The second time it may be easier for my  body to do what it needs to do.  
    4. I could take the painkillers differently (especially earlier than I did the last time).
  • If we wanted to do a drug induced miscarriage, he suggested 4(!) Misoprostal tabs vaginally on day 1, and then 4 more 24 hours later.  He gave me an prescription for painkillers too.  I think the last time I took two in total.  He said that misoprostal is one of the most studied reproductive medicine drugs, but the administration of it can be very different depending on your doctor.  
  • Most people who are waiting to have an unmedicated miscarriage (from a missed abortion/missed miscarriage) will have it around 12 weeks.  He didn't feel there were risks of waiting. He thought it was a decision to be made mostly based on emotional considerations.  Do we want to wait it out or have it sooner?  I'm in the sooner camp.  Let's get this show on the road so we can move on to better things. 
After we had our meeting, we weighed what Dr. S said and what he said.  We considered trying to do the miscarriage testing kit on our own with a home miscarriage.  

When we picked up the kit we decided that this is definitely not going to happen.   

Natera requires a paternal blood draw for a donor egg pregnancy (which we could work out).  They also require you to try to separate the fetal tissue from the gestational sac with a saline solution.  They give pictures and descriptions on how to do this.  

Attempting to sift through the products of conception to find something the size of a lentil, is not something I want to add to this experience.  Just the pictures alone that came with the kit were hard to look at it.   Not to mention, that the first time I had a miscarriage there seemed to be so much blood! At times it looked like I was "peeing" blood (full stream) from my vagina.  I also had terrible diarrhea from the Misoprostal.  Sorry for the visual.  D and I are definitely not going to be sifting through any of that.    

So, it looks like we've made a u-turn. 

We are going to wait a little while, then try the misoprostal again and hope for the best. 


15 comments:

  1. I am so glad he gave you so much information to consider before making your decision. Our last loss at 7w6d we opted to use the Misoprostal instead of D&C for mainly the same reasons your doctor stated. I also took my vaginally and had the painkillers that helped. I did find out a few months later during our LAP that there was still tissue left over that didn't expel. It sounds like he is covering all the basis by prescribing more for you to take.

    I am so sorry you are going through this, but glad it will be over soon (at least the physical part).

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    1. I am worried about leftover tissue and needing a D&C anyways. This was one of my big reasons for wanting a D&C in the first place. I'm hoping it doesn't come to that, but I will be getting monitored to be sure. Thanks for all of your support.

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  2. I dunno. I had 2 d&cs then later 2 kids thru ccrm with no lining problems whatsoever. For me I already had nausea and it stayed up until the d&cs even tho the fetus had died. I absolutely needed to check fetal chromosomes for my own piece of mind. I understand you had donor but still. I know Dr Sch and ccrm are the best. But. Check out the one egg please blog. She had a ccrm donor egg m/c then tests the rest and a significant amount were abnormal via CCS. http://1eggplease.blogspot.com/2013/01/ccs-results.html?m=1

    So sorry for your losses. Been there and it really sucks.

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    1. I will check it out. Thanks for the info.

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    2. I checked the blog out and I have added it to my reading list. I did gasp when I read that only 4 of her CCRM DE embryos were normal. But then I got thinking about what I was told about what I would get as a result.

      I went back and updated this post where I talked about how many normals we were hoping for.

      http://findingawayoutofif.blogspot.ca/2013/12/news-and-first-support-group-meeting.html

      Just putting this out there in case it helps anyone else.

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  3. Ughhhh. I'm just so sorry, hon. Sorry that you had to read up on any of that, sorry that you've had to weigh risks and rewards, sorry that you're even in this place. Unfortunately, I'm no help at all as both of my miscarriages have been so early, I've never even seen an ultrasound. Plus, my body seems to enjoy ending the pregnancy quickly. So obviously, I have no advice, but I'm going to hope that things resolve quickly for you. Praying for better days ahead.

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  4. I absolutely hate that you are going through this. I'd give anything for no one to ever know the pain of a miscarriage.

    We discovered a blighted ovum at our 11-week scan and were told the baby stopped growing at six weeks. I was advised to let nature take its course. About two weeks later I started to bleed. Unfortunately my period as still MIA two months later, and they did an U/S. Discovered the gestational sac was still there. I'm so glad I did not develop an infection. We ended up doing a D&C. In hindsight I wish we would have done ahead with a D&C right away, but there's no way we could have known.

    Please take good care of you and do what's best for you guys. My only piece of advice in a situation like this is to monitor your hCG levels, should you decide to let a natural miscarriage happen. I hate that you have to make this decision. Will be thinking of you.

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    1. Thank you. We will definitely be having blood work and an ultrasound after to make sure everything is ok. I've had this problem in the past too. It sucks.

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  5. I'm just so sorry this is all happening. I hate that you have to make choices like these ...

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  6. I'm deeply sorry you had to even look at those pictures. Oh, honey. It's good that there's an option for people who want to do that, but I just can't imagine the flashbacks afterward...

    I wish you could get in for a D & C tomorrow. I'm annoyed that you can't. But you seem to be taking it well---you sound very clear-headed inside this storm. You're amazing.

    I took that drug for my second miscarriage. Reading your experience, it sounds like we went through much of the same. Worst physical pain of my life. (I had idiot OB who did not even recommend pain medication, said I mignt not even be able to feel much, so I was woefully unprepared and terrified when the pain struck.) But what your doctor says about it being easier this time is very reassuring! I'm just so fucking sorry you have to go through that again. I had night terrors/PTSD afterward---I just worry about you. Hope you have plenty of support as you go through it.

    You asked:
    "50% of miscarriages in his opinion happen with genetically normal fetuses. He said doctors really just don't know always what causes miscarriage. (I'm not sure of what CCRM would say on this... have any of you heard anything from your doctors on this?)"
    Yes, this is what my doctor, Dr. Shapiro at RBA, said. Half of all miscarriages are euploid embryos, and unexplained. I hope that gives you some hope. xo

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  7. This is so not fair. I hate reading this. :i'm so sad you have to go through this, Julia. Thinking about you.

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  8. I'm glad you had a good meeting, especially after the messed up situation at the satellite clinic. But I so wish you wouldn't have to make any such decisions. The pictures alone sound terrifying. Thinking of you, and hoping that, somehow, this will proceed in the least painful way possible.

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  9. Hi Julia. I've been quietly reading your blog for a bit now and first let me tell you how sorry I am. Such a shitty situation. I used misoprostol vaginally in Oct for a miscarriage at 9w, baby measured 8w. I used 4 on the first day and 4 then next day and while painful it was sucessful for me. I took the pain meds and even some Advil and everything that needed to expel did. We also tested with NATERA - which is an amazing company that will only charge you a fraction of the cost if your insurance doesn't cover it or if you have a deductible they will reduce theamount that you are responsible for - dramatically. We did not sift through anything we just collected what we could and mailed it with bloodwork. We were able to get accurate results with what we collected.
    Please feel free to email me if I can answer any other questions for you. I am so sorry you are facing these decisions. I hate this for you. Xoxo

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  10. I agree - no one should have to make this kind of choice. It's not fair.

    It sounds like you've made the right choice for you based on all the facts in front of you. That's all we can do, right?

    I sort of disagree with your doc only in that I think if you had more than one chromosomally normal m/c it then points to something uterine, or with the placenta. And then that starts them looking at other things or begins new conversations. My understanding is that a much higher percent of early losses are chromosomally related. Then later losses it flips and a much lower percent are from chromosomes than other (most often unknown) causes.

    But what do I know?? I've had 7 pregnancies and not one of them (even the one that produced my son) was normal.

    Anyway I wish you as easy and painless a process as possible. You deserve a break.

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