November: My blog therapy month #NaBloPoMo15

I challenged myself to write a post every day in November as part of National Blog Posting Month 2015.  Well, I certainly wrote more posts than I thought I would, but I didn’t quite manage to post every day.  I managed  22 posts out of a possible 30 :-s  If you posted every day, kudos to you my friend!!! It isn’t easy.  The thanksgiving holiday and travelling to Europe for work has limited my success in posting every day/  The days I didn’t blog were the days I yearned to write; just had little physical time to sit down and write it.  I got withdrawal symptoms when I didn’t write.  And I still have a long list of things I want to write about.  Fortunately, I never experienced writers block, I always had something to talk about.  Which is surprising, because I am not much of a big talker in real life!

I have written about some things that perhaps have given you more insight to my ways of thinking – an insight to the inner Dani!   If you are still here reading – Thank you for sticking with me!!!!

I have written about infertility related issues, and explored some broader topics about becoming a parent.  I have written about things that have bothered me and simply writing about them has helped me get over them.

I have also killed some time; time until our next cycle of IVF cycle.  I now have a new countdown – Christmas!!!! And I even have an amazing 3D Christmas Tree advent calendar that my granny gave me which will help.  I bought Chris a Birthday present – a daily lesson of couple’s massage for a month.  Basically he gets to be the stooge whilst I learn how to massage properly. It’s the gift that keeps on giving!!!! Not only does Chris get a mini massage on a daily basis (assuming I don’t hurt him whilst learning the massage techniques!), it brings us closer together through the power of relaxation – AND this daily lesson will be another count down to Christmas!  Then, after Christmas it is only 3 days until my Birthday, which will also most likely be the start of my IVF Diary Vol. 2.  Whoop whoop!

Time has flown this month, NaBloPoMo15 has signified a lot more to me than just exploring my ability to write and blog.  I have discovered that writing is therapeutic, something very much needed.  It has helped in my recovery to positivity.  I am feeling ready to start afresh.  January 2016 is going to be a rollercoaster ride.  But I have a feeling that we are going to have a great start to the year.
NaBloPoMo November 2015

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Ignorance is Bliss

Has anyone ever said something to you along the lines of: “If you knew how much responsibility was involved in parenting you wouldn’t ache so much for a baby?” or worse, “Here, take my children then see if you still want a baby so much.”

People who say this to you most likely care for your well-being.  It’s kind of like your bestie asking you just before you walk down the aisle – “are you absolutely sure you want to do this??”.

Dani and Chris-165.jpg

My Bridesmaids asking me: “Now are you sure you want marry this man?!?”

But what these people do not realise is that their message also comes across that we are ignorant.

If anything, I am more certain of my future responsibilities because I have had much more time to think about them.  I am lucky in the sense that I have the time to prepare.  Some women may only have 9 months to prepare for their future responsibilities.

I understand that I will never fully appreciate the responsibilities involved in parenting until I become a parent myself.  But please, let me dream about it for now.

What-ifs? And Bias in Diagnosing Ectopic Pregnancy

Yesterday Chris and I were talking about the ‘What-ifs’ of the future.  We tend to find ourselves having these kind of conversations regularly.  It’s difficult to plan anything when dealing with infertility.  Not only because of things we can’t do ‘when we are pregnant…’ but, also what to do with our savings.  We want to buy a house together, but it’s difficult to have these conversations with little knowledge of where our infertility journey is going to take us.  For example, if we bought a house now, we might not be able to keep our options open to afford egg donation, surrogacy or adoption.  So we hold off on making these big decisions for now.

We talked about what we would do if I am pregnant again and we face a similar scenario that we faced after our first round of IVF – slow rising hCG, nothing seen on the ultrasound (Pregnancy of Unknown Location), suspected ectopic pregnancy.  Chris said that at least we would know what to expect!  This is very true.  But, I think I might do things differently.  There is a small part of me that feels guilty for giving in and taking the methotrexate treatment.  Part of me wonders – what if?  What if I hadn’t taken the treatment.  Would I have just prolonged the inevitable?  Or would I be into my second trimester by now? I actually feel sick writing those words!

We made the decision to take the methotrexate treatment after 5 doctors from our clinic had suggested we should do that.  Our doctor had spent 20 minutes meticulously looking for an ectopic pregnancy on the ultrasound, said she couldn’t see anything that looked like an ectopic, and concluded that I must have miscarried already (I had started bleeding two days before) and then effectively released me from monitoring.  The next day she phoned to say she changed her mind.  What made her change her mind?  Did something not fall into place?  Did another doctor tell her she was leaving herself exposed to liability for misdiagnosis?  Did the other 4 doctors tell her she had made the wrong call?  How did she make her decision?  Did she review the evidence afterwards in a more objective manner?

It got me thinking – FIVE doctors told me I should take the methotrexate to terminate the {ectopic} pregnancy.  That should be enough to qualify for my ‘second opinion’.  But I never really thought about it until now, that organisational bias may have come into effect here.  All these 5 doctors work together every day.  They all make decisions on their own every day, but sometimes they ask each other’s opinion when making a decision or a diagnosis.  Not only do doctors face their own personal biases but they face bias that becomes systemic in their clinical practices.

I am not a stranger to these biases – I teach methods and techniques to the military to help them overcome all kinds of biases when they make decisions.

There are many opportunities for a doctor to become biased in their own decision making or diagnosis, here are some of them:

Confirmation bias:  The tendency to over emphasise data that supports an existing hypothesis rather than data that refutes that hypothesis.

Overconfidence Bias: Over-reliance on the opinions of the expert that can before (the attending or consult etc)

Availability Heuristic: this patient has whatever your last patient who looked like this has or whatever is commonly discussed

Premature closure/anchoring: the tendency to decide that the patient’s current problem is related to the first thing we diagnose rather than more than one issue.

Commission Bias: the tendency to need to do something rather than stand there.

Hassle Bias: the tendency to take course of action that is easiest or exposes the physician to the least amount of grief

Regret Bias: the tendency to take course of action due to guilt from a missed diagnosis

Commission Bias: the tendency toward action rather than inaction.  An error arises when there is an appropriate committal to a particular course of action.  It is more likely to occur in someone who is over-confidence, and reflects an urge to ‘do something’.  It satisfies the obligation of beneficience in that harm can only be prevented by actively intervening.  Commission bias may be augmented by team pressures or by the patient.

One or more of these biases may have played a part in my doctor’s decision making process for my diagnosis*.

In addition to the individual and organizational biases doctors face, there are also the established guidelines that doctors follow.  Every clinic will develop its own guidelines for diagnosis and treatment of ectopic pregnancy, generally based off national best practice and research – my clinic is within a medical school so I like to think they are up to date on their practices.  Guidelines will vary from clinic to clinic because they have the freedom to do so.  However, in the UK, the NHS is very transparent about many of these national guidelines by publishing them on the internet, and so I know that if I was in the UK I probably would have been treated very differently to how I was treated by my clinic.  In the UK I would have been sent home and told to keep taking home pregnancy tests until the date for next ultrasound scan or until I received a negative pregnancy test or if my situation changed to go to the hospital if I had developed any signs or symptoms of ectopic pregnancy.

I can’t help but wonder “what if”….I know the chances were slim that my pregnancy was going to be successful – the statistics told me that.  But I have read about a very small number of cases of women having slow rising hCG level after IVF, with nothing seen on the ultrasound up to 9 weeks and delivering to full term healthy babies.  There is a facebook group called “Misdiagnosed Ectopic Pregnancy Given Methotrexate”, and I have learned that research in this area is lacking, particularly for women going through IVF and women with retroverted/tipped uteruses.

I don’t regret my decision to listen to the advice of 5 doctors to take the methotrexate.  But it does make me think about how difficult a doctor’s job is to make that decision, the biases they face on a daily basis when making those diagnosis decisions, and the overall lack of research in this area.  I hope I never have to face this scenario ever again.

If you have found my blog because you are facing this situation, please feel free to contact me: dani@thegreatpuddingclubhunt.com because I wouldn’t wish this upon my worst enemy and will try to offer you a hand through it.

 

*If you would like to know more about bias in clinical decision making there is an excellent website that provides more information: http://www.improvediagnosis.org/?ClinicalReasoning

An Ode to TTC Forums

Have you heard Alessia Cara’s song ‘Here’?  If you haven’t heard it yet, you probably haven’t switched on the radio in a while.  You can check out her video below.

As Alessia’s song has been on the radio a lot recently, for some reason, every time I hear it I sing along with some different ‘Dani’s own’ lyrics.  So I thought I’d treat you to my parody version….it reminds me of how I feel when I accidentally stray into online forums, in this case…. Trying to Conceive (TTC) forums.

———————–

I’m sorry if I seem uninterested

Or I’m not listenin’ or I’m indifferent

Truly, I ain’t got no business here

But since google took me here

I just came to check it but really

I would rather be on my blog all by myself not in this forum

With people who don’t even care about my well-being

I’m not a doctor, don’t ask, I don’t need your baby sprinkles

So you can go back, please enjoy your EW CM*

I’ll be here, somewhere in the corner under clouds of stupidity

With this girl who’s hollering with her B-F-P

Over this TTC advice I don’t listen to and I don’t wanna put my legs up over my head

So tell my IF sisters that I’ll be over here

 

Oh oh oh here oh oh oh here oh oh oh

I ask myself what am I doing here?

Oh oh oh here oh oh oh here

And I can’t wait till I can break up outta here

 

Excuse me if I seem a little unimpressed with this

An anti-social pessimist but usually I don’t mess with this

And I know you mean only the best and

Your intentions aren’t to bother me

But honestly I’d rather be

Somewhere with my blogger friends we can kick it and just write

About infertility with the struggle (like we usually do)

And we’ll discuss our big dreams

How we plan to take over the planet

So pardon my manners, I hope you’ll understand

That I’ll be here

Not there in the TTC forum with the girl

Who’s always asking questions like “Can I get Pregnant from a blow job?”

So tell them I’ll be here

Right next to the girl who’s complaining cause

She can’t figure out when her next fertile period will be

Oh God why am I here?

 

Oh oh oh here oh oh oh here oh oh oh

I ask myself what am I doing here?

Oh oh oh here oh oh oh here

And I can’t wait till we can break up outta here

 

Hours later reading all your bitchiness

Some girl’s talking bout baby dust

Well I ain’t got none

How did it ever come to this

I shoulda never come to this

So holla at me I’ll be on my wordpress when you’re done

I’m standoffish, don’t want what you’re advice

And I’m done talking

Awfully sad it had to be that way

So tell my bloggers don’t worry I’ll be back here

And I’m sitting on my laptop with my infertility in tow

Yo I’ll be over here

 

Oh oh oh here oh oh oh here oh oh oh

I ask myself what am I doing here?

Oh oh oh here oh oh oh here

And I can’t wait till we can break up outta here

 

Oh oh oh oh oh oh

Oh oh oh oh oh oh

———————————–

*Egg White Cervical Mucus

Thanks Alessia for the inspiration!!!


NaBloPoMo November 2015

Balancing Work and Infertility Treatment

I have been mostly open with my colleagues about the infertility treatment that we are facing.  I told a small number about the three IUIs, but in preparation for IVF I decided I needed to tell a few more of my colleagues in my team.  In fact, my team gave me a gift card for a nice restaurant as a I was about to take four days of sick leave for the Egg retrieval and embryo transfer for our first round of IVF.  But it’s not something that everyone is comfortable  initiating a conversation about it all with me.  They don’t know where the line is, so I try to  be open about it as much as possible and help them to feel comfortable asking me whatever questions they may have.

This ‘open’ approach has mostly worked in my favour; but that doesn’t mean it has been easy.  It is coming up to almost a year of treatment and my boss has known about my appointments and treatment for the majority of that time.  He has been accommodating, caring and supportive to my needs.  But ultimately, it doesn’t matter how supportive your peers and bosses are, there is the issue of the work that still needs to be done.

I feel unreliable, I feel flaky, I feel selfish and I hate not being flexible. I feel like the weak link in the team.  I hate that it is almost impossible to plan long term projects and work travel – a key part of my job.  I feel helpless, sometimes I feel useless.  I try to compensate by being overly proactive in areas that don’t require long term planning; I try to over achieve on short term goals and tasks.  But ultimately this impacts my career.  I feel like I have taken a career break. 

Juggling work with infertility treatment requires meticulous planning – and yet what are you told when it comes to IVF treatment?  Always expect the unexpected.  So planning for the unexpected becomes an overly stressful burden to your sanity.

For me, the first time we went through IVF it was a quiet time of year for us – August.  Many of my colleagues were on their summer holidays, so all was good.  This time around we are expecting to start stimulation in the New Year.  Things start to get a whole lot busier at work at this time of year.  I have already had to say no to travelling to Europe in January because it is likely my egg retrieval will be in that week.  Not attending this meeting in Europe may impact my involvement in the project overall.  Or simply just add another layer of stress even if I do pick it up afterwards from playing catch-up.

Then, there is the added problem of being physically at work; suffering from pain and tiredness as a result of the hormones and your body coping with the side effects of the drugs.  I tried to hide the pain.  I must have gone to the toilets about 25 times a day to hide.  Sometimes I just spent 5 minutes sitting there taking a timeout.  And it wasn’t just the physical pain, the emotional strain plays a part in all this too.  Simply put, the infertility treatment has also affected my mental focus on doing a good job.  For example, I was not satisfied with my output around the time of the IVF (I had a deliverable due just before the start of the IVF cycle – this was a terrible terrible idea!), although I know I am very self-critical and set high bars for myself – no one has actually complained about my work thus far.  I just hope that is because what I delivered was satisfactory, and not because people were afraid to upset me!!!

I just hate this.

And I am lucky that I do not have to lie to my colleagues.  I cannot imagine having that added pressure of guilt and keeping up with lies in addition to the stress of the treatment itself.  Some people need to keep their treatment a secret either for job protection or it is within their nature to keep family life private.

So what have I learned?  Second time around, I will schedule in a combination of annual leave and sick leave into my diary for the start of stimulation.  Fortunately it’s a new year of leave, so I will be able to do this this time around.  Who knows what would happen if we have to do IVF all over again after this round.  But this time, I’m going to try to focus on the treatment rather than juggling it with work.

Maybe I’ll take up some knitting or do some oil painting to keep me occupied.  I’m going to need to find something to keep my mind busy!!!

:-s

As for the long term impact on my career, well, I will just have to not worry too much about it just now.  Maybe if we get to summer next year and still no pregnancy, how I feel about my career is going to really influence my decisions about what we do next.

The cost of a suspected ectopic pregnancy

You can’t put a price or a value on having both your fallopian tubes intact.  In fact I imagine that anyone who has lost one or two of their fallopian tubes wouldn’t be able to put a price on how much they are willing to pay to have them whole and functioning again.  Without a doubt.  And so when the doctor told me that there is a risk that I had an ectopic pregnancy and a fallopian tube could rupture at any point, you simply don’t think about the $$$ money.;

After I found out that my pregnancy was non-viable, the whole process of determining whether or not I had an ectopic pregnancy was absolutely soul destroying and mentally exhausting.  I tried to research what the likelihood was of having an ectopic pregnancy was with IVF.  I tracked my hCG levels to try and determine what my odds were.  I even joined several online groups to talk to other women who had experienced what I was going through.  (I have probably mentioned this before, I dislike online forums because you get exposed to some real stupid, dumb, insensitive and simply irritating people.  And you just can’t get rid of them.)  All of this led me to some tiny hope that I was going to be one of those women who was going to beat the odds and carry a pregnancy despite the slow doubling hCG levels.

The doctors cared a lot about my wellbeing and were concerned of an ectopic.  I mostly followed their recommendations:  We both dropped everything to come in to the clinic for blood tests, consults and ultrasounds.  What they didn’t tell us was how much it is all going to cost.  Like I said, when there is a risk of losing a body part or even worse, your life, the money doesn’t matter.  And now I can finally say how much it all cost.

I am not complaining about the cost because we are lucky, we have amazing insurance and we can afford to pay the bills.  What I would like to know is what about those people whose insurance wouldn’t cover the costs?  It’s just another slap in the face if you have saved up or taken on debt to pay for IVF.  Of course, most insurance companies cover the cost for maternity healthcare, but the treatment of an ectopic or any other type of pregnancy loss doesn’t come for free.  Remember I told you about the woman who couldn’t afford to have an ‘abortion’ to end her life threatening pregnancy at her hospital because of a CRAPPY law? (You can read about it here).

When you save up and take on debt for IVF, no one tells you to save a little bit extra in case things go slightly wrong.  I have discovered, however, that most hospitals and healthcare providers will negotiate the costs if you can’t afford this type of care.  There are also some charities out there that can help.  I also believe that friends and family will be there too to help out.  We have helped out some friends in the past when they got caught out with unexpected medical bills.  It’s not only a difficult emotionally, it can quite quickly become difficult financially.

So how much did it cost?  Luckily for us, not much.  The total cost was $3,107 of which our insurance covered most of it, and so cost us $140.   I have updated my ‘Cost Lowdown’ page with the breakdown of where the biggest costs lie here. But this has made me think about putting aside more savings specifically for unexpected healthcare costs.

My appreciation for the UK National Health Service has simply sky rocketed.

A voice of the child free family

Yesterday I talked in quite some depth about our goal to become parents and how we are struggling with infertility with someone who lives child free by choice.  He is a very direct and to the point person (He is German after all and told me that there is no word in German for ‘Polite’ – he’s a funny guy). So, I tried not to be offended by his probing about why we want children.  He wasn’t trying to convince me that we shouldn’t have children like him and his wife, but he was pointing everything out about the benefits of being child free.

And now as I write this, although he was probing, blunt and direct about his thoughts and questions, I wonder if actually he was ultimately being kind and thoughtful to me.  He was trying to tell me why being child free is a good thing, he was telling me it’s OK if we don’t succeed at this.  Life without a son or daughter of our own is not going to be the end of the world.  He explained to me how their decisions have ebbed and flowed over time.  Although at first I was pretty uncomfortable talking about why Chris and I are ‘chasing’ fertility treatment, it was refreshing to listen to a different point of view.

He hasn’t changed my mind, but I thought it came at an interesting time, particularly after some of my recent blog posts have mentioned living child free (The childless analyst, The Uncertain Future of the World, Sorry, but being a mother is not the most important job in the world).

The Childless Analyst

I don’t really talk about my job much from the pure and simple fact that it is quite a dull subject to talk about.  But today I wanted to share with you something that happened this week.

I was observing a student class who had a task to describe the ‘persona’ of an analyst.  They had a template to fill out that included things like: name, role, tasks, products they produce, skills….their family and draw a picture of the analyst.  Now considering this is meant to be a ‘typical analyst’….there was always going to be some stereotyping involved with this task.

And here is what the students came up with:

the_analyst

They filled in the box under ‘Family’ a big fat X…i.e. no children.  They then discussed that in actual fact the analyst probably has a cat and some fish instead.  Well, apart from getting the name DAVE wrong, if they put DANI in the name box they would have been pretty accurate and I would have given them full marks!

But I simply sat there in disbelief as the students discussed why they put a big fat X in that ‘family’ box.

So, today I decided to give up Trying To Conceive because I have a greater desire to fit the stereotypical childless analyst in the eyes of my peers.  I haven’t discussed this with Chris yet, but I am sure he will be pleased that he can now get some fish again (he misses his fish)……

……….IN OPPOSITE LAND……..!!!!!!

IMG_1391

NaBloPoMo November 2015

Happy Birthday Mister

I am a bad wife…I am currently in Germany several thousand miles away whilst Chris celebrates his Birthday without me.  Again.  His Birthday generally falls at the busiest time of year for military exercises and training.  I suck.  And it sucks that I am not there to bake him a giant cake and celebrate.  He is simply an amazing man by putting up with my travels at bad times.

Happy Birthday Mister – you are my rock and you deserve to be celebrated…all 33 years of your life , I am privileged that I have known you for 9 of them 🙂  X

IMG_2831-0

 

 

Random happenings on our first night out in a while

I am trying hard to keep my eyes open, but I don’t want to miss out of NaBloPoMo15. I have a bit of jet leg confusion going on with my body right now….it has no clue what time zone it is in.  All I know is that I am currently in Germany and am due to start working in approximately 8 hours :-s

Speaking of confusion, we went out with friends to have a couple of drinks on Friday evening, at our new local brewery.  It opened up at the end of our road which is perfect because we can both drink and not drive!  During the evening, I went to the toilet only to discover blood in my knickers.  Not much, but enough to make me wonder what the hell was going on. I was on cycle day 11. That’s not supposed to happen! I had a pad with me so it wasn’t a big deal.

—–Note——Last night I fell asleep at this point whilst writing this post!  I woke up at midnight with my laptop still on my lap and I had slept sitting up in bed for an hour!! There were random sentences and words typed after this point.  Who knows what crazy things I was thinking semi-asleep! So I never made it to posting this on Sunday. Whoops- there goes my blogging every day in November promise to myself!  Oh well good intentions and all that…anyway…back to the story!!!——

After freaking out a little bit, realising that there is nothing I could do, and I wasn’t in any pain, I returned back to my friends.  They were talking about going to a strip club.  I’ve never been to this kind of club before, everyone else had.  I panicked  – I didn’t want to go far from home just in case I started bleeding heavily.  So I made up an excuse that I couldn’t possibly go to a strip club with my husband because it would be weird! As you can probably imagine, this excuse wasn’t a sufficient enough reason to void the trip to the club. (although it is true that it would be a little bit weird to go to a strip club with my hubby!)  Eventually, I explained why I really didn’t want to go.  And it was kind of weird because I couldn’t explain it well.

My friends are lovely and understood, but really I couldn’t understand it myself.  It was the first time Chris and I had been out for a couple of drinks together in quite some time.  Why did my body have to go and ruin it?!

The bleeding stopped the next morning.  Who knows what it was and why it happened.  Perhaps it was a delayed response to the HSG test.  One thing I do know is that I am getting used to the unexplained!!!