My First Advocacy Day

May 24, 201812 Comments

Every year Resolve – the national infertility association, organises an advocacy day at Capitol Hill. What does that really mean? It means that we get the chance to tell our senators and representatives what we really need to help build our families- IN PERSON!!! We get to advocate on behalf of the 1 in 8 couples diagnosed with the disease that is infertility and for our future generations on issues that help Americans to build their families.

I’ve always wanted to go to advocacy day, but have failed miserably because of work travels, this year I was able to get away from work for a few days to make it to Washington DC. Unfortunately Chris couldn’t make it with me so I went alone and met up with some of my local infertility support group members there. But I wasn’t really alone, I met some incredibly inspirational people who have been advocating and volunteering for YEARS!!! And an added bonus I also met up with Heather from Meet the Hopefuls blog!!!!! Heather was the state Captain for California ☺️

So what did I do??

Firstly I attended a welcome reception on Tuesday evening prior to the big day. Here we got a chance to meet our state captain and others from our state, figure out who had done this before, and who were our mentors. Virginia was 40 something people strong! We were amongst over 200 people who had traveled from across the country to advocate. WOW!

It’s quite nerve wracking – I mean, I am British, I only really know a little about how the US legislation system works (mostly from TV dramas ;-p), so there was a lot for me to learn in addition to what the legislation being advocated for was and it’s history. Having experienced people and mentors available helped take away those nerves. Us first timers weren’t alone. We also had some online training a few weeks before to introduce the bills we would be asking representatives to co-sponsor and vote for.

Part of the welcome reception included a few speeches, one of which brought me to tears. A veteran who had been injured in Afghanistan had been advocating with his wife for years to make infertility covered by the VA. Their infertility was directly caused by the injuries he suffered and his country wouldn’t help him build his family. What an insult to his service and the life he gave to his country. But in 2016 congress authorised funding to provide adoption assistance and IVF to those veterans who had a service connected injury or illness that caused infertility. As a result of the funding this veteran has been able to have a child. And they brought their 15mth old with them. It was so moving to hear what a difference advocating can make.

Yeh, I cried, both tears of happiness and sadness. Sad because the funding for the veterans was going to expire in 2019 so we needed our congress to support a new bill that would make infertility coverage permanent and overturn the ban of IVF in the VA. My head actually hurts thinking that their country was not supporting their injured veterans. I just can’t understand why anybody would be against it. The only reason is money. That is it. So far just over 200 veterans have sought care under the funding that expires in 2019. But as we all know, the process of infertility treatment and adoption can take years. So some of those 200 veterans might not be able to continue their treatment if nothing is changed. And then there are those veterns who don’t know they want to build a family yet, and in 5 or 10 years when they come to have children realise they need help, when it’s not there. It just makes no sense Congress!!! Support your veterans in building their families – it’s a no brainer!

I went back to my hotel excited for what the next day would bring. I set my alarm for 5.30 AM so I could make it into the city to start our training at 7.30AM. I actually found it hard to sleep thinking about it all.

The next morning, I made my way into the city on the metro as I decided to stay on the outskirts of the city to save a bit of $$$. DC hotels aren’t cheap. I had missed out on the block booking that Resolve had organised. I spent a lot of my journey on the metro researching the Senators and my house representative. What were their thoughts on family, veterans, adoption, healthcare and finance issues. Did they sponsor or co-sponsor any of the bills we were advocating for already? Did they have family, do they have any links with the infertility community already? None of the senators, Mark Warner and Tim Kaine, or my representative, Donald McEachin, had co-sponsored yet, so I knew we had some work to do.

When I checked in I was given my schedule for my appointments and received all the supporting materials I needed, including a cheat sheet with information and facts that I would unlikely be able to remember off by heart! My schedule was actually really good. I had appointments at 11AM, 1230PM and 2.30PM. I thought that was plenty of time between appointments, but in reality it was go, go, go all day. After I checked in and got a hearty breakfast, we sat down in our states and was given more information about the day. We were told a little bit more about the legislative agenda Resolve was advocating for…

S700 and HR1681 – Women Veterans and Families Health Services Act. basically giving veterans permanent access to infertility treatment and support through adoption for injured veterans.

S937 and HR2476 – The adoption tax credit refundability Act. The adoption tax credit is good, but doesn’t support low to middle income families, this legislation will make the tax credit refundable which will help these families who are more likely to foster to adopt, helping to take children out of foster care saving money in the long run. It’s fiscally responsible, helps children out of the foster care system and helps building families.

Resolution 864 – PCOS awareness month. This will designate September 2018 as PCOS awareness month. It has already been passed in Senate.

Medical Research Funding for FY 2019 Appropriations. Requesting funding of $1.531 billion for FY19 for research related to reproductive disorders such as infertility, PCOS and Endometriosis.

Finally….the most exciting and hot of the press news was announced. A bill was being dropped on Advocacy day that will have a huge impact, the Access to Infertility Treatment and Care Act.

Wait, what???? YES! what an amazing piece of legislation. We need to fight for this. We fight this everyday in our own lives dealing with infertility. This shouldn’t be a fight we have to have, but we do. I know the benefits of great infertility coverage, I have 6 IVF cycles in a lifetime covered in my plan. Infertility is stressful enough without dealing with financial crap. This bill will require that health plans offer treatment for federal employees (including TriCare) diagnosed with infertility as well as cover fertility preservation for who undergo a medically necessary procedure that may cause infertility, such as chemotherapy. The bill is being sponsored by Congresswoman Rosa DeLauro (CT-03) and Senator Cory Booker (NJ), they made videos telling us about the Bill and thanking us for advocating. It was so moving. I cried. Again. (yes, there were lots of tears from me, I planned for it and didn’t wear mascara…more to come….!!!)

After being given all the knowledge we needed, we broke out into our states to figure out who was going to say what, to who and when. With 40 virginians we were given 2 appointments focusing on different issues with each senator, so that meant there were about 20 people meeting with the Senator’s aides (or staffers). I quickly discovered that I was the only one in my meeting with my representative Donald McEachin. This meant I would be doing most of the talking and asking! I had a mentor assigned with me – Chris, who was a guest on my blog during NIAW with his wife Candace. Chris was fantastic, he was the state Captain and really was font of all knowledge and experience so I felt less nervous about and was more excited. In addition to figuring out who was going to say what, we also had letters from other states and areas that were not represented by someone in person, this meant we had to visit the offices of these representatives and ask for an impromptu meeting with someone to talk through the issues. We figured out who was going to deliver what and where. At the time I had no idea how much work this was actually going to be!!

Once we had a game plan for the day, we headed off to Capitol Hill, clutching our bright orange folders, sporting our orange infertility awareness Ribbons. This proved to be very helpful during the day to spot others as we wondered the halls of Capitol Hill. I hadn’t realised how easy it is to knock on the door of your Senator or representative (If you can find their office that is!!)

Our first appointment was at 1130AM with Senator Tim Kaine (Democrat) and we met with his aides for tax issues. The only place that could fit all 20 or so of us was in the hallway, so there we were talking about our issues, asking for the Senator to cosponsor the bills. Someone from our group gave their personal stories of struggles. I cried. And at the end, I handed over all the letters from other constituents asking for what we had just asked for, as well as some more supporting information for the Senator to consider. It was pretty easy, yet empowering. This was our opportunity to create awareness and make change happen. Right there, right then. 15 minutes. That is all the time we had.

We had some time to deliver some letters to a few other Senators, so we broke up into smaller groups to achieve our mission. I went with a lady who had been to advocacy day several times before and another who was a newbie like me! Before we went into the office we did a quick bit of research on the Senator to see what their position might be in anticipation of getting a meeting with one of their staffers. The first Senator who’s state will remain nameless, there was very little we thought they would be supportive of. So what did we have in common? When it comes down to it, a family. He has children, so there was something at least! After all we are advocating Pro-family! Unfortunately no one was able to meet with us. But we dropped off the letters from his constituents, material about the bills we were advocating for and collected a business card of the relevant aide to contact later on. We did the same with two other Senators before we ran out of time and needed to get to our next appointment.

My second appointment was at 1230 with Senator Mark Warner (Democrat) and we met with his aide for veteran’s health. This time we had different people speak, and I cried again when someone gave their personal story of infertility struggles, and a lady who worked as an adoption social worker told her perspective. The other group managed to meet with the Senator and snag a photo with him!

Time for some lunch! All our other meetings were the other side of the Hill, so we managed to get a ride on the underground trolley that connects with the Capitol building. I didn’t get a picture, but I felt like I was in a James Bond movie! very cool. We found somewhere to eat eventually and collected ourselves in preparation for my meeting.

My third appointment was with Congressman Donald McEachin at 3PM. This was a far more intimate meeting with one of his aides, we sat in the Congressman’s office, which was the Pi Office – 314!!!!! We talked about the issues on the table and it seemed like Donald McEachin would be very supportive of what we were asking for. I am hoping to see his name as co-sponsor!! Just as we were finished he came into his office, so we introduced ourselves and why were there today, and we were able to get a photo with him!

We had some time to do more letter and material drop offs with other Reps and emptied our bags of letters. We delivered them all! Unfortunately there was a health committee meeting going on so many of the relevant people were not in office available for any impromptu meetings. We managed to find somewhere to get coffee – there was a dunkin donuts in one of the house of representative’s building’s basement. I made the joke that America literally does run on Dunkin. True fact.

The final meeting of the day was by far the best. I joined Chris, Candace and Allison from my local support group on their meeting with their representative, Bobby Scott. I live on the corner of three congressional districts so I actually work in his district and was excited to be able to talk with him too. His aide listened with intent and understanding, she asked some awesome questions. Including what we were doing to support women and families of colour. A great question because it is so important. It seems that the congressman too would be supportive of all our issues. Half way through our meeting he came in to meet us and took a picture with us!!! He had just come from a foster child shadow day and had the most amazing tie on. So appropriate and so timely for what we were advocating for. His staff were so warm and friendly it was the perfect end to the day.

To round off the day we all met up for refreshments and a taco bar, swap our experiences and sit our weary feet down. I think I spent the first 6 hours of the day on my feet! Luckily I was well prepared and wore flat shoes. An absolute must to survive the day. I left the day feeling excited that I had the opportunity to make important people in the legislative work understand how they can help build families in America. For my American friends, my virtual friends and for my daughter, an American citizen.

I’ll be going again next year for sure. Next year this new bill will be coming of age, and may be even issues relating to Personhood bills may be on the agenda. What I do know is that there is still a lot of work to do. So who’s joining me???!!!

Creating a family friendly culture in the workplace

November 21, 2016November 21, 20165 Comments

How important are family friendly policies and benefits in organisational culture?

Is there a correlation between a high performing organisation and a family friendly workplace?

It seems obvious that the answer is yes…and yet, there are many organisations who put family friendly policies and benefits at the bottom of the pile. Family friendly policies and benefits are known to increase retention, recruitment, morale and productivity. Arguably, these policies and benefits come at a cost to the organisation, so do the benefits outweigh the costs? It can be difficult to put a figure on this type of benefit and return on investment.

There is also the unseen or lesser known part of family friendly policies and benefits that organisations can adopt; these are related to family building options such as infertility treatment insurance coverage, adoption grants, sick leave (for miscarriage or medical treatments), flexible working and egg freezing.

Simply having these policies and benefits will certainly contribute to a family friendly culture…but there is something deeper than these – a family friendly organizational culture that builds on the policies nd benefits.

You may have heard the saying – “Culture eats strategy for breakfast”. This simply means that no matter how good the policies are they need to be supported by the organisation’s culture.

Going beyond the policies and benefits, leaders and staff need to develop the values and behaviours that make up the family-friendly culture:

Open Communication – on both work/life needs and institutional priorities. Staff need to be able to freely communicate to their leaders and vice versa without incrimination or judgement. The ability to give 360 degree feedback freely about what works and what doesn’t contributes to this open communication environment.

Flexibility – at all levels of the organisation. Creating an environment that makes it OK to ask for flexible working or time off by creating space to. Believing that employees are less loyal or productive for asking for these creates will creates negative culture.

Commitment – recognition that a good work/life culture benefits everyone.

Fairness – fair doesn’t mean equal; leaders need to understand that one size doesn’t fit all, applying family friendly policies consistently is important.

These values can’t be written down in policy or given away as a benefit…they have to be enacted out by the people we work with every day and inspired by our leaders in our day to day lives.

What other values and behaviours do you think make up a family friendly culture that we can live by in our workplaces, including family building?

Do your leaders say they are family friendly but don’t live by the values they preach?

Reblog: Bloggers Unite Conference, Day 2 – Lawmakers and Legislators

April 25, 2016Leave a comment

Day 2 of the Bloggers Unite conference! Whoop Whoop!! Here are my thoughts on today’s blog!

Denise blogs for National Infertility Awareness Week about how we should #StartAsking our lawmakers, legislators and researchers to spend more time, money and effort to find ways to improve infertility care. She makes some really interesting points in her blog post – currently only 10 clinical trials related to infertility are listed on www.clintrials.gov in comparison to 4126 trials related to breast cancer (BTW – the statistics for breast cancer is 1 in 8 women will develop it at some point in their life time. Yes – I know infertility doesn’t kill! But in terms of trying to understand a disease it is an interesting comparison of levels of research). Denise also struggles with unexplained infertility – great minds think alike! (See my post from yesterday) Take a look at her post below….

Three years, three surgeries, two doctors, four donors, one biospy, eight IUIs, one fresh IVF cycle and one frozen embryo transfer later and we are still on the road to parenthood. We knew this was not going to be easy but never in my life did I believe it would be this difficult. As we […]

…continue reading…. #niaw Bloggers Unite Conference, Day 2 – Lawmakers and Legislators —

Thank you to Chiemi at www.misconceptioncoach.com for organising the conference! It’s been great to meet other like minded bloggers 🙂

Why can’t we make a baby? #NIAW

April 24, 20165 Comments

Why? Why me? Why can’t I make a baby like all my other friends and family? I have so many questions about why after almost 2.5 years of trying to conceive and failing miserably, month after month. What have I done to cause this? Why won’t my body just get pregnant? What am I doing wrong?

It’s human nature to want to know why things happen. But these are the type of questions that run through my head round and round, continuously ever since we decided to grow our family. I have yet to answer any of these questions. It is exhausting.

Chris and I are 1 in 8 couples of child bearing age in the US that struggle with the disease that is infertility. We tried the good old fashioned way – sex – for 11 months before we went to seek specialist help from a reproductive endocrinologist doctor after we discovered that Chris’s testosterone levels were “below normal”. It turned out for us that testosterone levels do not actually matter that much when it comes to fertility. Chris actually had super sperm, and lots of them! But it did lead us to start the typical tests for diagnosing infertility.

We thanked our lucky stars that all our test results came back normal – there was nothing seriously wrong with either of us. In fact, we passed all our tests with flying colours, we were top of the class! But this put us into the category that 20% of infertile couples are diagnosed with – unexplained infertility. This meant that the doctors could not tell us why we hadn’t been successful so far in trying to conceive the way they teach you at school. We were about to embark on a journey that was going to take us beyond what they taught us at school – we were going to try to get pregnant with medical assistance. We were heading into the world of the unknown. We knew little to nothing about infertility.

At first it was difficult to explain to our friends and family why we were seeking treatment, because there was nothing ‘technically’ wrong with us. The infertility was inexplicable! It was embarrassing, it was awkward to explain. So this is why I started this blog, to help us get over this difficulty in explaining what we were doing and why, as well as helping to explain our feelings about our disease in general.

Unexplained infertility in someways has been a good thing – there is always hope that this treatment will work. But ultimately it is difficult to accept that there is just no known reason that this isn’t working for us. In some cases, going through medically assisted treatment for infertility can reveal the explanation of a couple’s infertility. But in our case, after 3 IUIs (Artificial Insemination) and 3 cycles of IVF (In-Vitro Fertilisation), 1 suspected ectopic pregnancy, and over $90k of medical bills we are none the wiser as to why we do not have a baby in our arms yet.

Conception is a wondrous act of nature, but it is also an incredibly complex process – there have to be many stars in line for a healthy baby to be born. For something that is the very basis of our human race’s existence, we still know very little about the disease that prevents us from growing our families. It’s incredible, right?

I am currently in the dreaded two week wait of our third (and final) IVF cycle. If this cycle fails, apart from being devastated, I do not know how we will ever be able to move forward without knowing why this has happened, why medical treatment didn’t work for us. Our infertility will never leave us.

For National Infertility Awareness Week (NIAW), the national non-profit infertility organisation Resolve is promoting this year’s theme #StartAsking. The theme is about promoting the questions that we want to be answered, whether this is asking for our Employers to provide insurance coverage, asking for legislation that supports family building options or asking our friends and family to support us. For me, the one question I have and want to raise more awareness about is to:

#StartAsking for more targeted research on unexplained infertility.

Perhaps if we can understand more about how or why some couples are infertile, then better focused medical interventions can be developed to defeat infertility.

I want answers!!!! But we won’t ever get answers if we don’t talk about infertility and unexplained infertility. It shouldn’t be a secret. We can do this by speaking openly about infertility, by getting organisations like Resolve to help raise our community’s voice and build awareness.

If you would like to know more about infertility, please visit Resolve.org.

If you would like to help, you can contribute by fundraising or donating for Resolve. Or just comment below with your questions and thoughts to join in the discussion!

Effects of flying and jet lag on fertility pt 1.

December 4, 2015December 4, 20154 Comments

I am just returning from yet another trip to Europe, Belgium this time! This has been my 9^th transatlantic trip this year. Last year I made 10 trips, and the year before that 11. With an average of a trip every 6-8 weeks I spend a lot of time either sat in a plane or at an airport or, trying not to fall asleep in meetings whilst I try to get over the jet lag!!

Travelling like this is stressful. I always have a connection to make in the US because I do not live near an international airport, and sometimes I have another connection in Europe as I travel to cities that do not connect directly with the USA so I can often end up with 2 transfers…it can be very stressful making these connections when flights get delayed or security lines hold me up. For example on this particular trip to Belgium, due to a series of unfortunate and unrelated disruptions it took me 9 hours longer to reach my destination (on top of the planned 14 hours of travel).

I am simply sick and tired of it. Yes, I get to go visit some cool cities, I am grateful for that opportunity, but it is physically disruptive to my life. As this is my last trip of the year and I already have 7 trips planned in the first 5 months of next year :-s I am beginning to wonder whether it is such a good idea to do all this travelling. I am not sure how many of these I will be able to commit to with my next round of IVF coming up.

This got me thinking about how little I know about the effects of flying on my fertility. Is it even an issue? Should I be concerned? So I did a bit of research and here is what I have found so far:

There is currently no overwhelmingly strong evidence that flying has a direct cause of reduced fertility. However, there are a few studies that indicate that there may be some correlation.

One study I found to be compelling used mice to investigate whether shifting the body clock has an effect on their fertility [1]. The results of this study showed that there may be serious implications for a woman’s reproductive health if her work involves shift work or time zone changes.

To understand the outcome of this study, you need to understand the body clock. Our body clocks are called circadian rhythms, these are physical, mental and beahvioural changes that follow a roughly 24 hour cycle, responding primarily to light and darkness in the environment. Your circadian rhythm is produced by your body, but it is also influenced by the environment. Light is the main thing that influences circadian rhythms – it turns on or off genes that control your internal clock. Your circadian rhythm can change your sleep-wake cycles hormone release, body temperature and other important bodily functions [2]. (I know travelling certainly screws up my body temperature because I discovered this last year when we were trying to conceive the good old way and I was actually bothering to monitor my temps.)

The researchers of this study found evidence suggesting the severity of circadian disruption may be linked to the severity of pregnancy disruption: mice subjected to advances of the light-dark circle had greater circadian clock disruption and lower reproductive success. This group’s pregnancy success rate was only 22% compared with the control group of 90%.

WOAH. That’s quite a difference!

So what does this mean? This means that if this affects mice, there is a good chance it affects humans too – but to what extent remains unknown, more research is needed before conclusions can be made confidently. ….but I couldn’t find anything taking this research further forward.

Now, there have also been a large survey study of flight attendants to examine fertility….there are two interesting conclusions, first that flight crew were found to be more likely to suffer from irregular periods, and also more likely to suffer a miscarriage. But I find the study designs less compelling, so I’m not even going to write about this in much detail (but you can judge for yourself here).

So is there something that can be done to prevent suffering from the effects of flying and jet lag? No one knows for sure, but we do know that Melatonin is an important hormone that regulates other hormones…this can be taken as a supplement, but it can also have negative effects on fertility too when taken as a supplement. And this is what I will talk about in some more detail in Part 2 later this weekend!

Am I less fertile because I travel trans-Atlantic a lot?

[1] Summa KC, Vitaterna MH, Turek FW (2012) Environmental Perturbation of the Circadian Clock Disrupts Pregnancy in the Mouse. PLoS ONE 7(5)

[2] Circadian rhythms fact sheet on the National Institute for General Medical Sciences website

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

September 6, 2015September 6, 20157 Comments

Warning – grumpy Dani on the loose!!!

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.
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.
We waited an hour after my blood draw for the ultrasound.
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.
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.
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.
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.

I always say it’s never over ’til the fat lady sings….predicting a successful pregnancy outcome

August 26, 201518 Comments

I always say it’s never over ’til the fat lady sings. But that doesn’t mean I can’t see that fat lady getting ready to get on stage…I can also hear her warming up, running through a few scales too.

So, my suspicions were pretty much confirmed about why I didn’t get my results yesterday. My results were not good. And let me point out here that these are not my words, but the words of my nurse.

My hCG levels last Weds were 49 – just a bit lower about where they should be, but were not overly worrisome…

My results from Tues this week, however, were 126. They went up!!!! But those of you who are familiar with hCG levels and where they should be by now will know this is not a great number. hCG levels should double every 2 to 3 days. What does this mean? Well my doctor wants me to keep taking my progesterone and estrogen, just in case – there is always a small chance this pregnancy is still viable!! But I have to go in for another beta test on Friday to double check that this pregnancy is, in fact, over.

I can safely say I am no longer feeling cautiously optimistic….I am feeling pessimistic as hell and sad. If you would like to hold onto hope for us, I gratefully take your strength and thank you for helping to hold us up, but quite frankly when the nurse tells you it is not good, it’s not good. I understand she is preparing us for the worst.

BUT!!!!! I decided to do a bit of research on what all this really means, what are MY chances? You know I had to do it, as one of my colleagues told me today – GTS! (Google That S#*% !!!). OK, I’m going to get a bit technical here….hang in there if you have in interest in hCG levels (the beautiful pregnancy hormone!!)….

I found a very useful study* that looked at the predictive values of hCG levels for a viable pregnancy 13 days after a 3 day Embryo Transfer (I took my first beta test 14 days after my 3 day Embryo transfer). My result of 49, according to their model, gives me the following chances of outcome: 45% successful singleton pregnancy, 31% miscarriage, 13% bio-chemical pregnancy, 9% ectopic pregnancy, 3% successful multiples pregnancy. Well I am glad they didn’t tell me what my hCG levels were last week!

According to these researchers’ analysis, they decided that the cut-off level for predicting a viable pregnancy was an hCG level is 76 IU/I (80% sensitivity)….although this is considerably higher than some other researchers have reported (for example other studies have found the cut off at a similar sensitivity to be: 42 mIU/ml (Qasim et al., 1996); 55 IU/l (Bjercke et al., 1999); and 50 IU/l (Sugantha et al., 2000)).

Wow guys, 76 seems to be a whole lot higher than the others….so do they have credibility in their research? Well from what I can ‘statistically understand’ and in understanding their research design, it looks solid; their sample size is excellent, some of the best I have seen in articles about artificial reproductive technologies….but I am not a medical professional, so I am totally relying on my knowledge of stats and may be there is something ‘medically awry’ that I cannot see.

If I use any of these models, and consider my hCG level of 49 from last week, these researchers would have told me my chances of a viable pregnancy were always going to be low.

However, there was one interesting point that came out from this study that caught my eye:

In subjects with unexplained infertility, ICSI may result in lower than expected HCG levels (Gold et al., 2000)….The explanation for this was not clear. Although the early embryo cleavage is delayed in ICSI-derived embryos and the fragmentation of embryos is increased the implantation potential is comparable with IVF-derived embryos.

Even though my numbers have not multiplied nicely….in the back of my mind I am holding onto this slither of hope….holding on that we are the ones in that 5% extreme quantile who defy the norm, and it is because we are unexplained and our embryo was ‘ICSI-ed‘ that my hCG numbers are much lower.

Until Friday…………. :-s

*Pokkeus, P., Hiilesmaa, V. & Tiitinen, A. (2002) Serum HCG 12 days after embryo transfer in predicting pregnancy outcome. Human Reproduction 17(7):1901-1905. Available at: http://humrep.oxfordjournals.org/content/17/7/1901.full

Pregnancy chances increase among women who soak up sun before IVF treatment

July 2, 20158 Comments

Pregnancy chances increase among women who soak up sun one month before IVF treatment

I was researching my next blog post and accidentally came across this recent headline. Basically, some Belgian researchers discovered that an increased exposure to sunshine one month before conception can increase chances of getting pregnant by IVF by more than a third. WOAH. An increase in chances of a positive outcome by a third? Chris…quick book us a holiday to the Caribbean and let’s hit that beach! Stat!

Well, we do know that melatonin is important in cell development, as well as the importance of Vitamin D, so it does make some sense. So I tried to hunt down the source of this claim. It took me aaaages because the researcher they referenced was not the prime author. Anyway. It seems the researchers from Ghent University have not yet published their findings in a paper, but I did find their poster from the conference, so you can take a look at the results for yourself. Now there are definitely some significant findings there, but as we all know, correlation doesn’t equal causation….but I’m happy to give the sun a go! It’s pretty low risk, doesn’t require giving up anything and who doesn’t love a bit of sun?! Now, I wonder whether the factor of suncream makes a difference…hmmm….

So ladies – we all know about honey moons and baby moons…now we need to make pre-conception moons a thing #preconceptionmoon (I’m sure it will catch on).

Where to go for more information about IVF?

May 13, 20159 Comments

When we decided to go ahead with IVF at our last appointment, the doctor gave us a rundown about the whole process, but I did not learn anything new that I had read about already. Of course, I had done some research on top google hits about the process in general. I have also been following a few blogs about ladies going through IVF themselves. But I will be honest…I have not really stepped up to my usual level of research. Probably because I thought I had plenty of time before we start this. Also I’ve been keeping myself busy the last couple of weeks, both at work and at play. Next week we have our first appointment with our nurse, so I want to make sure I ask all the right question from the outset. And so, the time has come! I feel like I have a big gaping hole in my knowledge and I need to fill it…stat!!

When I first started following blogs I was put off following IVF blogs that were overly acronym-ised and had lots of numbers on it. Without any reference, it felt like gobbley-de-gook to me. In fact it was (and still is) terrifying. I am sure it will all make sense soon, but for now I am following a select few who make it easy to read for newbies (thank you for that by the way!). But where do I start my research?

Areas I would like to better understand:

Medication for IVF
Embryology
Ethics
ICSI
Complimentary Therapies
The statistics low down! Because I just can’t help myself being an analyst by trade, I’ve got to know!

Do you have any good suggestions for books or websites that you have found helpful with your IVF journey?

Fertilomat.com – an experiment

May 2, 2015May 2, 20151 Comment

At first I wasn’t sure how I felt about this website: Fertilomat.com Initially, I was mad about it. I was mad because I believe it was just targeting vulnerable women who are concerned about their level of infertility. But then I thought, well it appears to be combining a whole bunch of medical research and turning it into a user friendly format for women to interact with, that’s got to be a good thing. This website has developed a ‘predictive’ model that combines data from various research areas into fertility, such as effect of BMI, alcohol and caffeine. But the big problem I have with this website is that they are not transparent with how the model is developed or what the potential error is. This makes me suspicious.

Plus their business model sucks. They charge women 19 Euros to view a two page personal report based on 23 questions about lifestyle. The questions are very simple, such as weight, height, age, alcohol intake, caffeine etc. Although I can see that this model may have taken many hours of research and cost them a bit of money to develop, I feel conned because the research that they do cite is free to download anyway. I also wonder how the authors of all the various research reports being used feel about their data being used to make money from women in this manner? The website could have chosen a different approach and made money in other ways, by advertising on their website, or charging medical practitioners to use their model. Maybe I am just biased…

So as a matter of interest I paid for the two page personal report providing me with my fertility score. Quite frankly I was very disappointed. First of all because for some reason the form I filled in reset to my height as 4ft and weight as 55lbs. I am 5’8″ and 130lbs, so the output was useless anyway. Here are the two charts that were included in my 19 Euro report…

Depressing…

Of the two pages of My ‘personal’ report, I actually received 1 1/2 pages of report. 1/2 page was dedicated to repeating back my answers to the 23 questions, the other 1/2 page were the two charts above. Then the last 1/2 was some text pointing out that my BMI was far too low (of course it was because the interface was CRAP and assumed I was 4ft and 55lbs) and my fertility score is below average, and next year it will decline. It also told me that it was good that I was avoiding alcohol because 1 litre of wine in a week can decrease fertility by 60% (thanks, I read that in the free research report you cited). It told me: ‘the fact that you don’t smoke increases your chances of getting pregnant’. Ummmm no that’s not how it works!!!! Then the last paragraph filled up space telling me that If I want to know more about my fertility I should see a doctor/gynaecologist to check for further tests such as ultrasounds. And that was it!!!!

Simply put people, and as I suspected, this is a CON: Fertilomat.com But I am glad I spent the 19 Euros because hopefully now I can share this so other women won’t!