Compared to this, the 2 week wait will feel like a breeze

Warning – grumpy Dani on the loose!!!

  1.  We turn up to my ‘monitoring’ appointment this morning, sign my waiver which only has a beta blood test and no ultrasound listed.  I point this out to the receptionist…she checks my notes, apparently in my notes my doctor said only for a beta because it was too early to see anything on the ultrasound.  Hmmmm, this is not what my doctor said on the phone on Thursday!!  She said now that my hCG levels were over a 1000 perhaps we would find Waldo this time!  Receptionist talks to doctor and adds the ultrasound to the waiver form.
  2. A nurse I have never met before takes my blood…after making me almost pass out.  She jabbed hard with the needle, Chris was watching, I wasn’t but it was REALLY painful.  He was pulling faces at me from across the room because he could see that the nurse did not have control over the needle – even with a butterfly clip the needle apparently flipped 180 degrees.  She was not apologetic and had not appreciation for the pain on my face or that she had even done anything wrong.  The other day when a nurse hit a valve she was so apologetic, but it barely hurt so I told her not to worry.  The nurse today – I give her a big fat Freddie F for FAIL.
  3. We waited an hour after my blood draw for the ultrasound.
  4. Once we are in the ultrasound room, lucky me – I get two different doctors again, one I have never met before – my doctor was not working Saturday.  Fair enough, everyone needs a break!!! No Waldo found today.  BUT both Chris and I noticed that my uterus looked different from the previous 2 ultrasounds, I think this is one of the downsides of having different doctors monitoring me.  Basically, the doctor sent me to have more blood drawn in preparation to take the methotrexate if my beta hCG levels are still rising.  They even discussed whether the labs would be able to get the results today stat and could get a prescription in at the campus hospital for them to administer tomorrow (Sunday).  They thought it would be possible.  We sat there nodding our heads.
  5. Chris asked if a different nurse could draw my blood as he explained the ineptitude of the earlier nurse.  I will admit that I was annoyed that Chris asked this because I would have preferred not to have caused a fuss, and being a reserved Brit, probably would have told the nurse that she had really hurt me earlier and shown her the bruises she left – then at least get an apology from her.  Anyway, the doctor kindly arranged for me to have a different nurse draw my blood from the other arm.   Blood drawn – nurse hits a valve – may be my body is telling the nurses it is done with blood draws.
  6. We wait for results all day.  It is now 9PM and I have not had a phone call today.  In the UK, if the doctor doesn’t call it’s a good thing.  I’m not sure that’s how it works here?  Chris thinks it’s a good thing.  I think the tests were not done ‘stat’ and there were simply no results today – usually the nurse would call to update me, but because it is a Saturday and we seemed to have got one nurse into trouble, no one has updated us.
  7. I am still pregnant unknown location (PUL) – i.e. rising hCG levels and no visible sign of pregnancy on ultrasound.

I have been concerned today that the on-call doctor wanted me to take the methotrexate tomorrow – but I realised after the appointment that my doctor had said she thought that as long as I have no symptoms and there is no pregnancy on the ultrasound she would keep monitoring me until I am 7 weeks pregnant (3 days time).  So I wondered how that would work – if the on-call doctor had a different opinion to my doctor, would my doctor be pissed.  I was planning on talking to the on-call doctor about this when I got my results, but this seems to be a moot point now she hasn’t called today.

I’ve done a bit of research into my situation of possible ectopic pregnancy and there is quite a bit about misdiagnosis of ectopic pregnancy.  Basically, doctors prefer to diagnose ectopic early to avoid rupture of the fallopian tube.  This makes a lot of sense….except there are many cases where doctors have been too early in their diagnosis and effectively terminated a healthy uterine pregnancy mistaking it for ectopic.  The most up to date information I found on PUL, ectopic pregnancies and methotrexate was discovered from an article: “Tragically Wrong: When Good Early Pregnancies Are Misdiagnosed As Bad“.  The author of the article is interviewing a Dr Peter Doubilet, one of the authors of a well written research paper: “Diagnostic criteria for nonviable pregnancy early in the first trimester

I am literally copying the introduction to the article, written by Carey Goldberg, because I thought it was worth sharing, but the full article can be found here:  http://commonhealth.wbur.org/2013/10/ectopic-pregnancy-misdiagnosed-methotrexate

A beautiful, supremely talented young friend of our family recently fell victim to a terrible medical mistake. Newly married, she was having some pelvic pain and bleeding, and the doctor who saw her diagnosed a probable ectopic pregnancy — an embryo that develops outside the womb. Concerned that such pregnancies can turn life-threatening, the doctor prescribed the standard treatment: methotrexate, a drug used for chemotherapy and to help induce abortions.

When our friend returned to be checked a few days later, the imaging revealed that in fact, the pregnancy had not been ectopic; it was in place, in her uterus. But because she had taken the methotrexate, a known cause of birth defects, her pregnancy was doomed.  She soon miscarried. What may have been a perfectly healthy pregnancy had been ended by well-meant medical treatment.

I assumed her horrifying case was an exceedingly rare medical fluke — until now. A paper just out in the prestigious New England Journal of Medicine shows that such misdiagnosed pregnancies are part of a pattern — a pattern that needs to be changed. “Considerable evidence suggests that mistakes such as these are far from rare,” it says.

When I told our friend’s story to the paper’s lead author, Dr. Peter Doubilet, he responded that he knows of “dozens and dozens and dozens of similar cases that have come to lawsuits, and that’s probably the tip of the iceberg.” There is even a Facebook group, Misdiagnosed Ectopic, Given Methotrexate, run by a mother given methotrexate whose daughter was born with major birth defects.

The New England Journal of Medicine paper stems from a panel of international experts who resolved to change medical practice to stop such misdiagnoses.

When I read the research paper the most interesting take away for me was:

  • Women with a pregnancy of unknown location (PUL) and hCG levels of 2000 to 3000, the likelihood of ectopic pregnancy is 32.7%, the likelihood of nonviable intrauterine pregnancy is 65.5% and 1.7% for a viable intrauterine pregnancy.
  • Women with a PUL and hCG levels of 3000 or more, the likelihood of ectopic pregnancy is 33.2%, the likelihood of nonviable intrauterine pregnancy is 66.4% and 0.5% for a viable intrauterine pregnancy.

The authors recognise that these likelihoods are not highly precise, and there are some limitations to their data, but they argue that this does not matter, it purely demonstrates that ectopic pregnancy is not the likely outcome in PUL.  However, they point out that this is only true of the woman is hemodynamically stable and not presenting with abdominal pain. The one thing that was comforting to see was that there is limited risk in taking a few extra days to make a definitive diagnosis in a woman with PUL.

There is also one other interesting thing I discovered after looking up the facebook group  “Misdiagnosed Ectopic,Given Methotrexate”.  PUL is very common in women with a tipped (retroverted) uterus.  Why?  Because it can be harder to see an early intrauterine pregnancy on transvaginal ultrasound and may not be seen up to week 8.  A lady who created the website misdiagnosed miscarriage says that no research has been done on the relationship with retroverted uterus and misdiganosis of miscarriage.

What is my conclusion?  Keep going to the monitoring appointments, if I have pain – take myself to ER straight away, wait until my hCG levels rise enough to see something on the ultrasound- then we can make an informed decision on which drug to take to aid my miscarriage. – Or best of all situations, I just miscarry naturally.  Really, the next 2 week wait is going to seem like a breeze compared to this.

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7 thoughts on “Compared to this, the 2 week wait will feel like a breeze

  1. ashleykyleanderson says:

    I am honestly at a loss for words at this point. I can’t believe that it is now Saturday night and you STILL do not have any more answers than before. Honestly, I commend you & Chris for getting through this far (although I understand that you’ve not had much of a choice); this wait has got to be truly unbearable.

    Everything you’ve found in your research is really interesting. I would absolutely wait to take the drug until you hear back from your doctor. The medical mistake issue really scares me, especially since I have experienced it firsthand (not for the same problem) and know that it happens far more often than doctors would like to admit. Don’t you have a tipped uterus? I seem to remember something from your HSG. If that is the case, then you definitely want to wait to hear your normal doctor’s opinion. It may be why she is slower to act on the methotexate. I’ve had on-call doctors not read all of my chart and advise me based on partial information too many times to count. It just sucks that Monday is another day off– do you know when your doctor comes back into the office? It might be worth asking the front desk to write down a message for her to call you as soon as she is able.

    As far as not getting a call back… I would say that they should have called you either way and would not assume it is good news, unfortunately. I usually just consider it ineptitude (can you tell I don’t think very highly of the medical community?). Hopefully you soon receive some real answers and information. I know you’re going through a lot but, if you can, try to keep us updated. I am really starting to worry now that you are going to wind up in the ER.
    In the meantime, you will continue to be in my thoughts and prayers. I am sorry that this has been such a rough day and difficult few weeks. xx

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  2. EmilyMaine says:

    I am so pleased you have done your research on this. This is all the sort of stuff I was referring to when I said that I’d done some research and wouldn’t take the drugs unless they’d seen a forming pregnancy in my tube. I think you are doing the right thing with wanting to continue going until they see where the pregnancy is located.

    Them not calling back the day of the blood test SUCKS. That is just ridiculous and poor service at what is a stressful time for you. I think they staff in these clinics sometimes lose sight of that very important component of their business – the people they are dealing with are under high stress. Care for the patients has to be paramount.

    Anyway I hope you are doing OK through all this. It is such a tough thing to go through. So many question marks which makes it so hard to know what you should be feeling. x

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  3. Nara says:

    Oh, I’m so sorry you are having such a pain trying to get an answer! It must be so horrible! I’m with you on the research. It absolutely makes sense to wait until you know more – but head to the ER at the first sign of *anything*. I hope that you manage to get some answers soon. X

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  4. g2the4thpower says:

    Great bunch of research to read through – I had no idea there were such common issues with patients being misdiagnosed. The story of your friend is awful. I know very little on ectopic pregnancy but my gut says I’d probably be with you on waiting. I have a tilted uterus and I recall going in and 5 weeks due to bleeding and seeing only a void that could have been a yolk sac. At my scheduled 7 week it had grown a ton but was still tiny, but we saw the hb. I hope for you that everything continues as safely as possible. Xx

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