It’s been a while!

PC Diary @ 24 Weeks 1 Day

It has been a while since I last wrote so this may be a bit long, but I have broken it up into chunks.  I took a mini break from my blog to focus on some other things that I really needed to get out of the way.  I have thoroughly missed it!  I have been reading other blogs, but not actively getting involved because quite frankly I am an addict after all and it is quite amazing how much I really care that others are finding themselves well on whatever stage their journey is at.  For me, my journey is literally in the middle of nowhere.  I know I am somewhere good, but feel like nowhere. Here is what has happened since I last put an entry in my pudding club diary….

I am 24 weeks pregnant today.  It’s insane because I am sure the last time I checked I was 20 weeks.  I have lived in a strange four weeks of madness – feel free to skip to the paragraphs that look like they might be the most interesting to you!

THE NEW HOUSE. After my mum flew back to the UK, Chris and I had to finish off getting our garden in order.  It was quite a mess when we first moved in.  My mother did a wonderful job of landscaping the front garden (she’s a bit terrifying when you give her a hedge trimmer!!!), but there was still more to do in order to make it look truly presentable and get it up to the standards of our new neighbourhood association.  We received a letter just after mum had left warning us that our garden needed tending to and this had been our 4th warning since April this year.  The association was not aware we had just bought the house so we thought – screw you we have worked hard at trying to get this all done!  As our garden is on a corner plot almost all of it is on view from the street.  But all our new neighbours have been commenting how lovely it is to see the garden restored and acknowledge that it will take some time to get it up to scratch.  Particularly the lawn which has been overrun with elephant grass.  With 100F weather the past few weeks and my pregnant state it has been slow going.  What is exciting is the beginning of our vegetable garden!  Chris built some raised beds and we planted carrots, turnips, radishes, squash and broccoli. Yum!  We plan on having three raised beds for rotating a variety of crops.  Homegrown food tastes so much better – assuming we can keep the neighbourhood wild rabbit and other various bugs away, stopping them from getting some early tastings in before us!

THE BABYMOON.  We went away on our babymoon cruise from Boston to Montreal.  I have written a separate post about this one.  But in short, we loved it (even if Chris got sea sick!!!) and the idea of arriving somewhere new every morning was simply wonderful.  There was also a lack of internet so this meant I lost touch with some blogs L But also took a break from the outside world.  It was nice and I wished it could have been longer.

THE INTERVIEW. The day after we returned from our babymoon I underwent a 3 hour test for the job I had applied for in my team (this would be a promotion for me).  Then the day after that was my interview.  It was a tough process because as I have said before I was up against some of my very talented colleagues.  I went out to dinner with all the other candidates the night before the interview (some of whom had flown across the Atlantic for the process) and it was very strange.  Strange, because I would love the job, I am certainly capable of it and wanted it, but at the same time would welcome any of them to join our team.  The type of community I work in is a small one, so we tend to all know each other somehow and the job opportunities are limited so it is inevitable that this happens.  When my boss later told me that I was not successful I was disappointed in myself, but at the same time equally happy for my friend who was successful.  Let’s call it a certain schizophrenic moment in my life.  I am hard on myself when I do not succeed, but equally I am happy that I did my best and have no regrets, so how can I ask more of myself?

THE FETAL ECHO CARDIOGRAM.  Back to the week of the interview, the very morning of my interview I had an appointment with the maternal fetal medicine specialist doctor.  This appointment was scheduled because we conceived through IVF, apparently there is an increased risk to baby’s heart.  I did some research on this issue and found that it was a very slight increased risk (like 1 or 2%) so I am not sure how essential it is, but we did get to see some very cool stuff!  I was a little worried, which I think is nothing unusual, and it was also probably bad timing having the interview lined up for later the afternoon.  Fortunately, Rocky was a little star – or a little show off according to the ultrasound technician.  The whole thing took about 45 minutes.  We got to see Rocky’s overall growth i.e. her head, brain, body etc were all measured, and the very cool bit – her heart.  We were shown all the different valves and atriums of the heart, the blood flow and its direction being pumped in and out.  Quite simply put, it was an incredible experience.

heart.jpg

The blood flowing through a valve appeared heart shaped!

Rocky was still showing an ‘echogenic bowel’ (where the bowel shows up bright as a bone on the scan) – that was identified from the anatomy scan at 20 weeks.  The specialist Doctor talked to us about that, she said she thought it was most likely she had swallowed some blood from a bleed I may have had in the early stages of pregnancy. Although I never had any bleeding (thankfully), it is still possible and not unusual with IVF babies according to the doc. She also asked if we had tested for Cystic Fibrosis.  We didn’t test for this because we thought as it’s a genetic disease and we don’t have anyone in the family that has it that we wouldn’t bother.  It turns out we were completely wrong with this assumption.  We had no idea how common it can be to be a Cystic Fibrosis carrier!  I looked into this some more and it is interesting that some carriers can actually exhibit mild symptoms of Cystic Fibrosis.  I have had this disgusting and unexplained phlegmyness that builds up over time ever since I returned from Iraq…I’ve always been seeking an explanation for this and there is some evidence to suggest that some symptoms can be triggered by a traumatic event. Weirdly coincidental?!  So perhaps I should get tested after all. We have a follow up scan scheduled for Tuesday so we can see if the echogenic bowel comes up again.

My mum pointed out to me that it was far easier in her day because you wouldn’t have to worry about these kind of soft markers for potential problems.  I am inclined to be in some agreement.  Ignorance may be bliss.  The silly thing is that even if Rocky were to have Cystic Fibrosis, medicine is very good that she is most likely to have a very normal life.  Actually my biggest concern isn’t Cystic Fibrosis as a diagnosis, it is the association of an echogenic bowel with intrauterine growth restrictions leading to pre-term labour.  This is my personal biggest worry.  Currently as at our last 22 week scan Rocky is within the normal percentile…and my bump is growing nicely so my worries are most likely irrational.

One last thing about our scan with the maternal fetal medicine – the doctor said there was some slight regression of blood pumping through one valve, she thought that as it was still very early this wouldn’t be an issue as she is so tiny still and can grow stronger with no problems.  She said she will put it on my notes and my Obstetrician can make a decision whether or not to book another echo cardiogram later on to be sure. So we continue to wait.

MY EXECUTIVE DEVELOPMENT.  So another reason I have been off the blog is that I attended my first residential course that kicked off the start of my executive development programme.  I am on a programme with 23 others from across my organisation, coming from various countries with various nationalities (like me an expat working in another country) and various professions, ranging from technical geeks to financial gurus to human resource ninjas.  The aim of this residential course was to ‘Know yourself’.  Yikes.  We all turned up thinking we knew ourselves….but apparently not after being put through a variety of exercises that required a lot of internal reflection.  I was beat by the end of the week.  At one stage I was feeling a little anxious at how vulnerably open I was with all these new people.  I talked about IVF, my blog, Brussels attacks, my deployments to Iraq and Afghanistan – my feelings about myself and others I work with.  Nothing was off the table!!!  It was also intense as we were forced into exercises that meant we quickly got to know each other.

We formed teams for our project work that was based on real life organizational problems.  I decided to work in a team that was tackling a big problem that was out of my comfort zone – some of the other projects were within my technical capabilities.  And I am glad I decided to do that, although it might sound crazy to not take the easy path, I think this project is something I have more of a personal interest in…so when it is late at night and I need to do research and I need to find the motivation I may actually want to work on it because it interests me.  I found this works well when I chose my modules for my Masters degree.  Modules I didn’t choose I found hard to motivate myself to complete…modules I chose I often read around the subject more.

The distance modules start next week and the next residential course is in November…I’m excited to be doing this course, but the first week was pretty intense emotionally!  I am not sure pregnancy hormones helped much :-s

PREPARING TO BECOME A MUMMY.  After my list of things to do blog post several weeks ago, I have done very little to check anything off of it.  Mostly because of all of the above busyness!  And also I am kind of STILL in denial.  Yes I know, I really need to get over that!  I went shopping for some maternity clothes whilst I was in the UK (which by the way was very disappointing as most stores only do maternity stuff online…blah blah blah) and ended up in the baby section.  I love the clothes in the UK compared to the US.  I think it is because I feel that clothes in the US are overly girly and garishly pink.  I like pink, but not that much, I equally do not like the fact that even animals in the US are genderfied (I am not even sure that is a word!!!!)  In the UK, there seems to be more baby clothes that can be girl or boy.  Anyway, I picked a whole bunch of stuff up. Then absolutely freaked out when I thought about the sizes I was picking….in the UK they use baby sizes ‘tiny baby’, ‘newborn baby’, 0-3 months, 3-6 months, 6-12 months etc….All I could think of was, what if I get all this stuff and something happens to Rocky?? What if she doesn’t make it? I understand that this is a common feeling amongst all pregnant women – I mean it would probably be unnatural not to have these thoughts.  So I put everything back and walked out of the store empty handed and decided to go home.  Now….I did let my parents choose some outfits for Rocky when we were out together.  If I hadn’t let them I think they may have been a little upset because I know they want to and it was probably the only chance we would get to shop together before Rocky’s arrival.  So they bought Rocky some very sweet, non-pink outfits and I love them.

This is not to say I have not been thinking about Rocky’s arrival and completely bury my head in the sand.  I’ve started to do some research into the long list of baby related items we need to buy!  There is so much choice out there!!  I bought a couple of British baby magazines to flick through and get ideas (which by the way are waaaaaay better than the US baby magazines – I can’t put my finger on why I think that, I may simply be biased).  I will pat myself on the back, however, for finally booking a weekend birthing class as well as a parenting class for the end of November, beginning of December.  I really hope Rocky doesn’t arrive before this because all the classes were full up ‘til then!  I’m not overly happy about these classes because I would much prefer to do something longer for the birthing side, but our work schedule is not overly conducive to regular classes.  Perhaps when we eventually find a doula she may offer private classes that we could do.  This is the next task on our list…find ourselves a lovely doula!

THE BUMP.  So at some point during the residential course my bump ‘popped’.  Two people commented – Chris and someone I had just met on the course. Chris saw my bump on skype and was like – your bump is sticking out further than your boobs now!  And the other person I had just met said something had changed in the size of my bump over the week I had been there.

bump.jpg

As I was queuing up at the airport security one of the officers noticed I was pregnant and said I should have a body scan rather than walk through the scanner (I don’t know why, but I guess it has something to do with not needing an extra search if the buzzer goes off).  Also when I was on the tube someone offered me their seat.  Which was very kind, but I didn’t need it.  I had ordered a ‘Baby on Board’ badge to arrive at my parents’ house for my London trip, but I didn’t need it in the end because generally the bus from the hotel to the school usually had seats available. The one thing I am finding more difficult now is bending over to put my shoes and socks on.  I need to sit down for starters as well as really reach to get to my toes.  I think some more yoga is needed!  Rocky has been kicking my bladder a lot this week and generally being a little wiggle monster.  When I was sat next to one particular guy on the course, every time he spoke she kicked! It was quite funny!! But I absolutely love every single move she makes, it makes me very happy indeed.

THE END.  OK, most of you have probably gone by now…but I had 4 weeks to catch up on and I am sat on a transatlantic flight! If you made it to here I give you a big hug and a high five.  I will post an update after our scan on Tuesday (oh I also have the lovely gestational diabetes test then too :-S)

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IVF Diary Vol II: 15th Jan 16

Medication(s) administered and dosage(s). Gonal-F 300 iu & Menopur 150 iu.  Chris really is great at this injection thing.  I prepared the Gonal-F whilst Chris prepared the menopur.  We both read the instructions to remind us how to mix everything up, but like riding a bike, it was easy this time around.  Chris was a little bit nervous, but he needn’t have been, he did a great job.  I even looked down at the needle as he was injecting it – I am still not good at watching the needle break the skin though :-s.  The menopur did burn a bit as it went in, but it wasn’t quite as bad as I remember it to be.

ivf2_day1Stims

Medical procedures undertaken. Nil.

What are my symptoms? Period started right on cue yesterday morning!  Hot flashes and a bit of dizziness a couple of hours after my 2 first injections of this cycle.

How do I feel today?  A little bit annoyed that my plans to have a more relaxing stim period and 2WW are falling to pieces. Some short turn around-high impact work may fall on my plate next week.  I would have to forgo some of my steadfast principles for quality work and accept that in this case a 40% solution can only be delivered in the time lines given.  I have stuck to my guns though to some extent – where I was going to be taking the whole week off work, I am now only taking Monday and Friday off.  Tuesday and Thursday I will be working from home, Wednesday I’ll be in the office.  As we talked about this potential work, I started to feel sick to my stomach.  I started thinking back to last time around when I was trying to get my project finished and how stressed I was feeling about balancing the IVF process and work.  I let down my quality levels then – no one noticed (of course I noticed), in fact I got lots of praise for that piece of work.  Last week when a senior boss praised this work in front of the whole division I sat there quietly proud, but felt a bit sad that I had accomplished that with little help during a shitty time of IVF, followed by the whole ectopic pregnancy thing and ultimately miscarriage.  My boss has been great by not dumping everything on me right now, he quite easily could have done, but he didn’t so I appreciate that, but I can’t quite help  thinking about how IVF is holding me back from doing my absolute best.  I don’t think my colleagues around me think like that (fortunately they are all smart, intelligent people who know me), it is just myself I am fighting with these thoughts.

All that being said, I’ll talk about something positive.  We decided to go out for dinner at our local restaurant to celebrate surviving and nailing those first two injections.  Chris deserved his beer!  As we were finishing our meal the power went out in some of the building.  There was a storm that evening so it must have knocked the power out.  I said don’t worry, we are on a different power grid to our neighbours over the road (the block our restaurant was on) and last time their power went out, ours stayed on.  As we walked back, we realised that our grid was out and our neighbours’ over the road was on! Typical.  Fortunately we are well prepared for such events (for hurricanes and other storms etc), and carried on with the power of candles 🙂  It was a little bit romantic…I snuggled up in bed preparing for the power to be out all night and the temperature to dip.

power_out

Power outage = Candle lit bedroom!! Fortunately we have quite a few candelabras left over from our wedding table decorations still 😉

But then came the hot flashes!  I needn’t have worried about keeping warm, it seemed the drugs were doing a great job of that for me!!

Any results?  Estradiol <20 (as it should be, the same as IVF 1).  Progesterone <.2 (as it should be, the same as IVF 1). FSH 3.21 miU/ml (IVF 1 was 9.29, in 2014 it was 6.8) LH 0.771 miU/ml (IVF 1 was 3.48, in 2014 it was 4.9).  My LH level came up as red in my results…this means it was out of the ‘normal’ range, it is very low.  But not by much.  So I looked into it.  Although lower FSH is good, low LH is not good…apparently calculating the FSH-LH ratio and knowing the LH levels are good predictors of IVF outcome.  Let’s just say that I read several scientific reports, plugged in my numbers and the stats aren’t good.  But, the good news is that I don’t care! Why?  Because women with this kind of level and ratio still got pregnant.  And I am going to be one of those women in 4 weeks time 🙂 In your face science!!! **

What’s next? The same injections Sat, Sun, then monitoring appointment on Monday morning.

Weight. Work stress = nom nom nom bads.  But I did do the mixed martial arts P90x3 routine and pushed myself hard, so I don’t feel so bad.

Waist.  NSTR

Boobs. NSTR

Hours of Sunshine 🙂 Still NONE.  Let’s see if the sun comes out this weekend!

Fun Activity to keep Dani from going insane. IT’S FRIIIIIIIIDAYYYYYYY!!  I need say no more.  Surprise date night.

*Notes.  I take First Response Reproductive Health multi vitamin gummies (pre-natal) and CoQ10 200mg gummies daily.  NSTR = Nothing Significant To Report.

** Reserve right to have science egg in my face later

10 days of eughhh

It’s been 10 days since I started to miscarry and I am just exhausted from all the emotions and the physical madness that is going on with my body.

My 7 day post-methotrexate injection hCG blood test went very well today.  My levels have almost exactly halved since monday, from 2696 to 1358, and dropped 58% overall since the injection was administered.  This bodes well for successful treatment. I am even allowed to travel to Stockholm – as long as I am not having any pain.  I am not going to hide it, I have been suffering with pain for past two evenings now (weird how it is mostly in the evening).  Last night I struggled to sleep because of it.  The 500mg extra strength acetaminophen doesn’t seem to cut the mustard, but the acetaminophen with codeine #3 I was prescribed for pain relief after my egg retrieval seems to work a bit better.

My favourite nurse drew my blood today, she asked how I was doing.  I just replied ‘eughhh’.  She understood and nothing more was said.

Here are two photos of my cat Diesel….sympathising with my ‘eughhh’ feeling.  Chris managed to take these beauties yesterday evening in an impromptu photo shoot…..

Chris captured Diesel in  beautiful way yesterday evening

Chris captured Diesel in beautiful way yesterday evening

Chris captured Diesel in  beautiful way yesterday evening

Chris captured Diesel in beautiful way yesterday evening

What would we do without our fur babies to keep us sane?

The party and the door mat

The party!

My hCG levels reduced from 3200 to 2696 – that’s about a 15% decrease!!!  Time to party!! I’m heading out of the danger ectopic rupture zone!!

When I went in for my blood test, the nurse today asked me if I had taken a pregnancy test.  I said no.  She said ‘Oh’.  I said I have had about 10 blood draws in the last 2 weeks.  She said ‘Oh’.  Yeh – Oh.  Read your notes, love!

Then later this afternoon when a different nurse gave me my results and the good news, she passed me to the appointments desk to book my next beta hCG blood test.  The lady asked why they kept making me come in for betas.  I didn’t know how to answer that, and a moment passed and she said ‘Oh are they watching you levels fall? Oh I am sorry about that’.  Yeh – Oh.

But anyway, despite all that!  It is good news.  I returned to work today, it was good to be back thinking about other things in life.  I’m still hoping to be able to travel to Stockholm on Sunday!

Watch this space for a 3 month plan of attack!!!!

The door mat.

Whew!…my doormat took a bruising today from all those medical bills that miraculously landed on it!!! What timing!!!  The good thing about my clinic is that they take a few months to process all the claims, so we have a delay in paying all our bills, the bad news is that they all tend to come at once.  Ouchie.  I logged into my insurance….and I have a lot of claims to process, each ultrasound comes as one individual bill.  Each blood draw comes in two separate bills – one from the clinic, one from the lab.  Considering how many of those I have had over the last few months, let’s just say my doormat is going to get a beating from all those bills* 🙂

*OK so in the US I actually have a post box on the side of my house, they don’t post letters through doors like they do in the UK, so really I am talking more about a metaphorical door mat.

Methotrexate Side Effects

I am just over 72hrs past my first methotrexate injection.  I have definitely noticed the side effects, but so far they have not been as bad as I thought.

Over the first 24hrs I felt nauseous and had a very dry mouth despite drinking lots – apparently this is very normal.  My bleeding also stopped – not what I was expecting.  Since those first 24 hrs, the nausea has continued 😦  I have spotted on and off (no more need for a pad, just a thin panty liner).  I have been super tired, but have been sleeping deeply – a silver lining I guess.  Last night I had weird pin-point pupils, Chris noticed them and so I looked in the mirror and absolutely freaked out.  With a quick google, it looks like it could be the painkillers that did that, so I am not keen on taking those anymore!  Pain has been bearable with pain killers – acetaminophen extra strong (NSAIDs like Ibuprofren are not good with the methotrexate), but the pain has been different to when I first started miscarrying where it felt like the worst period cramps, the pain I am experiencing now is short sharp bursts around my ovaries, but not constant.  Each time I get a short sharp burst of pain I hold my breathe (not literally) as I hope there is nothing crazy going on down there with a burst tube.

Apparently with methotrexate, the deed starts to kick in after 72 hrs, so I am hoping that tomorrow morning my hCG levels have begun to drop.

Emotionally, I have only broken down in tears three times – an average of once per day I believe is not bad going.  The things that upset the most is thinking about how for particular very short moments I actually believed this was a viable pregnancy and talked about the ‘may be’ and ‘what ifs’.  It makes me sick to my stomach just thinking like that.  Having said all that, I don’t think those thoughts are going to go away anytime soon.  So we have been focusing on our road trip out West, it helps a lot to re-focus the mind.  I think I am ready to go back to work tomorrow – I hope so, I’ve got a meeting in Stockholm to prepare for!  (that is if my doctor lets me fly :-s )

PS.  I have got to the point that I am not sure what category to post this under – ectopic pregnancy, suspected ectopic pregnancy, miscarriage, part of IVF vol I???? I just hate not knowing if this was actually ectopic or not, they had no visible proof of where the pregnancy was and it frustrates the hell out of me – I think I will put it under feelings for now and figure it out later.  I wonder what the doctors call this?

Just when you thought it was safe

If you have read my earlier post from today, you will know I was waiting for my hCG results, my doctor was expecting to see a drop or at least a similar level because I have bled so much since Monday.

I got the call at 2.15pm, my doctor said ‘Your levels have increased again to 3200 (from 2600 yesterday), I want you to take the methotrexate.  There has to be something growing somewhere other than your uterus.  When can you come in?’.

Fortunately Chris was with me because he was working from home, so we were out of the house and on the road to the fertility clinic.  We had to stop by the pharmacy to pick up the methotrexate.  The pharmacy was in a children’s hospital.  I joke with you not.  The pharmacy was having problems processing my insurance details, so we waited about 45 minutes.  Babies and children EVERYWHERE.  It was a very cruel joke.  Then to top it all off, it turns out my insurance wasn’t going to cover it.  Well – using methotrexate to effectively abort a pregnancy is an off label use of the drug.  Duh.  Of course my insurance wasn’t going to cover it.  Fortunately, the pharmacist used a coupon and it only cost us $23.

Finally we arrive at our clinic, drug in hand.  When 5 doctors are telling you to take the methotrexate, it’s time to listen.  If my hCG levels got any higher I would not have been eligible to take the drug and surgery would have been my only alternative option.  We are not completely out of the clear…the drug is effective only 90% of the time.  In 7 days time we find out if it actually worked – and of course I’m still on ‘ectopic rupture watch’ until then.

One of the doctors injected the drug into my buttock muscle…honestly, all I was thinking was – can’t a nurse do it?  Only because he asked where I would like it to be injected arm muscle or butt muscle (nice to have the choice!), we decided on butt muscle – he then turned to my doc to ask where would be a good place on the butt!  This was the point I was nervous!! But I think it had to be the doctor injecting it – I don’t really know.  It was painless compared to progesterone butt injections, the needle was a lot smaller though.

Methotrexate comes with a long list of side effects…I am already experiencing two of them (though these should only last about 24 hours and are relatively normal) – tiredness and nausea – they hit me about 3 hours after I was given the injection.  I won’t list the things I have to watch out for as a side effect, they can easily be found by googling ‘methoretexate ectopic pregnancy’.

We are truly gutted this had to be our course of action, but it seems to be the safest considering the large unknown growing inside me 😦

The saddest thing

The saddest thing about today is that we feel a relief with our miscarriage.  It’s a bit of an oxymoron really.  I am sure it is going to hit me soon, but for now I am feeling a huge weight of my shoulder, I feel 5 times lighter.

I had my blood drawn this morning by a super nice nurse, and I returned to my clinic this afternoon for the results and ultrasound.  It didn’t start off great.  My doctor said my hCG had risen again to 2600 from 1300 4 days ago.  Yikes.  I told her about my bleeding the past two days and how at 2AM I was up passing clots the size of golf balls and had been bleeding for the rest of today.

The two doctors spent an age checking every inch of my tubes, ovaries and uterus.  The ‘junior’ doctor kept pointing to something and saying that she thought it was ectopic, they even switched on the colour flow on the ultrasound to see my blood pumping around, looking for the signs of the tell-tale ‘ectopic donut’ where blood flows around the pregnancy.  But my doctor said no, that was definitely not ectopic, and she has seen lots of ectopics in her career (she this out loud!!).  Especially now my hCG levels are much higher they really would expect to see something by now.  I am very appreciative of the amount of time they took to look,  particularly in comparison to the on-call doctor and other senior doctor at the weekend who spent 1/8 of the time hunting.  My doctor said with an ectopic pregnancy I wouldn’t get bleeding with such large clots so she thinks it is very unlikely I am ectopic.  I am SO GLAD I listened to my gut instinct and said NO to taking the methotrexate.

So the conclusion?  It takes a few days for hCG levels to drop after a miscarriage begins therefore I will return on Monday next week for another blood test to check they are dropping and this is in fact a miscarriage.  I have got a sick note for the rest of the week off work, so now for a bit of chilling out and eating lots of chocolate (seriously I have eaten a lot of chocolate already today).

I’m not completely in the clear just yet, we need to see my hCG levels drop and I need to pass whatever it is that has been growing in me causing my hCG levels to rise (prob. the placenta).  The ‘junior’ doctor is on call this weekend, she said ‘don’t call me!!!’  she really meant “I hope you don’t need to call me!!!”…bless, she is lovely in her very quiet way.

My doctor reckons 6-8 weeks before I get a normal period returning, then we wait a natural cycle, start the Birth Control Pills and then can start a new round of IVF again or do a Frozen Embryo Transfer (FET) – whatever we want 🙂  This will put us at Christmas time :-s

Miscarriage is a terrible, sad, painful and hurtful experience.  At 2AM last night when the big clots were passing I felt lonely and slightly terrified, I tried to sleep through the waves of pain but it was impossible, I finally fell asleep again at 5.30AM.  I don’t know how long the physical pain will last, but I know that the psychological pain will last a whole lot longer.

For anyone who is reading this and currently experiencing a miscarriage right now, my heart truly breaks with you too – may be you have found this web page already, but I thought it was very useful: Coping with Miscarriage  http://carikay11.hubpages.com/hub/miscarriagerecovery .  Knowing that miscarriage is so common (1 in 4 pregnancies end in miscarriage) makes this even harder, because I think about how many of my friends and family have silently been affected.  I am so sorry you had to go through this – because this truly sucks X

Tomorrow is M-Day (Methotrexate Day) Ummmm NOT!

Yesterday I started to properly bleed, but it was on and off and only about a regular pad’s worth of blood.  Today I woke up with spotting. Damn it I thought.  But then at lunch time it came – the bleeding got heavier and has continued today.  I think my body is going to deal with this naturally.  I am starting to feel more positive about me saying no on Sunday to the methotrexate injection.

Today I rang up my clinic and explained what happened over the weekend.  After multiple calls from various nurses and doctors, this evening we eventually decided upon a plan of attack.  Tomorrow morning I go for a beta blood test, then in the afternoon I will return for an ultrasound.  By that time my doctor will be free out of surgery so she can see me personally, and she will have my blood test results.  So fingers crossed my hCG levels are in fact going down – surely they must be if I am bleeding this much? Otherwise if they are still increasing she wants me to take the methotrexate.

My liver function blood test results all came back normal, but my Blood Cell differential results didn’t come back exactly all normal.  But they are not too far from the normal limits i.e. pointing towards anemia. It will be interesting to see what the doc says.  I know what is normal for me because my work makes me take an annual medical which includes a full blood cell count – I’ve always had quite low numbers and is why I take multi-vits to top me up – perhaps it is just the IVF treatment, or perhaps it is normal for a pregnant lady.  But we shall find out tomorrow!!!

I said NO…am I crazy?

The on-call doctor called me first thing this morning and apologised she had not called yesterday with my results (she did have them yesterday after all and gave no reason).  She said my beta hCG levels have risen again and she wanted me to come in today to take the methotrexate shot.  I asked her if she had spoken to my doctor (- no she hadn’t) because my doctor had said she would keep monitoring me up to 7 weeks for a visible confirmation of ectopic before administering the methotrexate.  7 weeks was her cut off point.  The on-call doctor said it was ultimately my decision, but it would be against their recommendation not to take the methotrexate today.  She also checked with the other senior doctor who was there with her, and he said it was OK for me to wait – despite it being against their recommendation.  I said OK and asked when can I come in for another ultrasound, she said it was up to me.  My doctor isn’t back in the office until after the holiday weekend, Tuesday.  This is when my doctor said her cut off point was.  So I told the on-call doctor that I will wait for my doctor to come back.  I also asked what was my actual hCG level because she hadn’t told me up to then – it was 1300 (up from 1066 48 hours ago).  That was a lot less than I expected.  I have a feeling it’s tailing off.  Here is my chart:

Normal hCG levels compared to my hCG levels

Normal hCG levels compared to my hCG levels (Note this is on a Log scale)

The on-call doctor told me to call her anytime I wanted to change my mind, and please look out for any pain.  After I got off the phone, I panicked.  Chris was still asleep in bed at the time of the phone call so I woke him and basically cried at him.  He says he supports my decision, but wants me to take the methotrexate.  Ultimately I feel like crap right now.  I have had SO MANY unknowns from encounters with doctors and I am sick and tired of it:

  • When I was 18 I went to ER because I had a random massive vaginal bleed.  They couldn’t tell me why.
  • When I was 19 I spent a year in and out of doctors trying to diagnose my abdominal pains.  I was eventually diagnosed with Irritable Bowel Syndrome (IBS), but there is no test to confirm this, it was their last thing in the box (I know I do have IBS, but really we don’t know why – and no one really knows what causes IBS).  I could have endometriosis too, but IBS explains the pains too.  They couldn’t tell me why.
  • When I was 20 I ended up in an ambulance being taken to ER because I passed out from abdominal pains.  I freaked out a lot of people.  They suspected that it was IBS related after eating 3 days of ration pack food in the field whilst on Army Exercise.  But really – they couldn’t tell me why.
  • We can’t have a baby without medical intervention.  We have unexplained infertility.  They can’t tell me why.
  • I’m pregnant, but they can’t see anything on the ultrasound at 6W4D and hCG level of 1300.  THEY CAN’T TELL ME WHY.

What is wrong with my body?  It’s like I have a black box body of unknown-ness.  Am I actually an alien??!

Honestly, I think I might be going crazy for not taking the methotrexate, but there is something that just doesn’t feel quite right about it.  Why don’t I want to take this drug? Because I’m very afraid of the side effects and being put through this unnecessarily if the abnormal pregnancy is in fact just growing slowly in my uterus and not one of my tubes.  Methotrexate can really mess with your gut, and my gut really is bad enough as it is.  I am not even bothered by the fact that we have to wait 3 months before trying again – I will WELCOME this after everything we have experienced the last 2 weeks.  Chris thinks I should take the shot so we can end this right now, mostly for the psychological pain, plus of course he is worried I will end up in hospital. Aghhh.  This truly sucks.

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.