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???!!!

reblog – Let’s Break The Internet With Infertility Awareness! —

April 29, 2016Leave a comment

I totally missed Day 5 of the Bloggers Unite Conference – bad Dani!!! I was exhausted driving back from DC yesterday (I know, excuses excuses!!) :-s

Day 5’s topic is about #StartAsking for insurance coverage. As I have the best insurance coverage, I think, in the whole of the US (I have a worldwide insurance policy) I can talk about the benefits that everyone should have available to them – I have coverage for infertility diagnosis and infertility treatments (IUI, IVF, ICSI etc), including medication – I even have coverage for Genetic testing. There is no $$$ limit, but I can only have 6 life time IUIs and IVFs. It’s quite amazing really! So I have already used up half my life time allowance. I still have to pay the 10% copay…but it is no comparison to those couples who have to pay the full amount. Infertility is stressful enough as it is without the added financial burden and bills to track and pay. It makes me mad that infertility treatment is seen to be ‘an option’ like cosmetic surgery is ‘an option’. You can read more about this at missconceptioncoach.com below

In a perfect world, the tens of thousands of women and men suffering from infertility who consult reproductive specialists every year would know that their medical treatment would be covered by their health insurance. Infertility is, after all, considered a disease as stated by the World Health Organization. Yet the establishment of an “Essential […]

keep reading more here…via Day 5 – #niaw, Bloggers Unite Conference – Let’s Break The Internet With Infertility Awareness! —

The Pre Hysteroscopy Surgery Appointment

February 25, 2016February 25, 201615 Comments

The nurse called me back and directed me to the toilet. I told her I had literally just gone to the toilet 2 minutes before she called me and that I apologised profusely that I did not know I was required to do a pregnancy pee test! Whoops!!! But the silly thing is that almost two weeks ago we did a blood test after IVF cycle 2 and it was a big fat negative. I am currently on Cycle Day 11 so it would actually be a miracle if I was pregnant right now!! But hey, I guess stranger things have happened. The nurse took my blood pressure and temperature as usual, but this time we did something different! A finger prick to test my hemoglobin levels. I told her it’s always fun to try something new at the clinic, just to mix it up a bit! I suggested a fertility test card bingo game, I might be on way my way to winning by now!! Winning what exactly, I’m not sure…

The nurse explained that she was going to order in to my pharmacy a prescription of two cytotec pills that I need insert vaginally an hour before arriving for my hysteroscopy next week (basically I will need to do that at 0530 on the day of the procedure!!! :-s). Cytotec is actually primarily used to prevent stomach ulcers when taking Non Sterodial Anti Inflammatory Drugs such as Ibuprofen or aspirin. But cytotec does have an off label use – to ‘ripen the cervix’ (Haha I love the fact that one ‘ripens the cervix’ like an apple or banana) Basically it helps dilate the cervix so it is easier for the camera to get into the uterus. So this adds 4 types of drugs I’ve used during infertility treatment that is off label use – Letrozole, vivelle dot estrogen patches, methotrexate and now the cytotec. Off label use means that the FDA hasn’t approved that drug for the manner in which the doctor has prescribed it. But all of these drugs are commonly used off label, so I am not worried about it. But at no point have I ever been told these are drugs are being prescribed off label. It’s an interesting practice! I digress….

After being prodded and poked by the nurse I saw my doctor who went over the procedure with me and updated my medical history. The procedure is relatively simple. I arrive at 0630 AM at the surgery operating room, they get me prepped and ready in a fabulous gown. No eating or drinking after midnight until after the procedure. No make up, jewellery etc. Similar to the egg retrieval. The anesthetist will give me a cocktail of sedation drugs, probably similar to ones to the egg retrieval. Once I am knocked out, they insert a camera through my cervix into my uterus – there are no cuts required. Then they take a look around. If there is anything there that shouldn’t be there, they will remove it there and then. They will probably also take a biopsy of my uterus. The whole procedure typically lasts 15 minutes. Then I am back out of surgery into recovery for about an hour for the sedation to wear off, then I am driven home by my lovely, patient, husband. So it really is a quick and simple procedure. I might be in a bit of pain afterwards, but there is no requirement for me to rest afterwards, however, I won’t return to work until the next day because of the anesthesia drugs.

Simples!

Finally after my doctor gave me the low down and I signed my life away for all potential risks, I moved to the business admin office to pay my dues. Here is the complicated bit.

My insurance provider is United Healthcare. Well kind of. My actual insurance company is Allianz. I work for an international organisation where the majority of its employees work in Europe, but there are a small number of us here living in the US, so although Allianz provides us with worldwide coverage, it doesn’t have a primary market in the US. So, Allianz pays United Healthcare to be the ‘front man’ for all of us employees who live in the US. This means that Allianz gets access to all the in-network negotiated benefits and doesn’t have to worry about administration costs of billing etc in the US. So all my healthcare providers bill to United, United then bill Allianz.

Have I lost you yet???!!

For anything dental or vision I have to pay for it upfront then claim it back from Allianz, then they re-imburse me 90%. But I also have the choice of paying for any other healthcare service upfront and then claiming it back directly from Allianz, I don’t have to go through United. Most of the time this isn’t beneficial because of the in-network negotiated costs can sometimes be ridiculously discounted so it is better to go through United. Except in the case of my hysteroscopy….

United demand that the hysteroscopy procedure is performed at a hospital and not the clinic. If it is not performed at a hospital they won’t pay up. If I went to the hospital, there is a longer wait time, particularly co-ordinating it so my doctor from the clinic can go to the hospital to do the procedure. Then there is the high cost of doing it in a hospital – approximately $20 000! Now, there would be in-network discounts on that, but still that is a lot of money when you compare it to what my clinic charges – just $1300 if you self pay. Also, it is also far more convenient to have the procedure done at the clinic, especially as I know their surgery room well now! So it doesn’t take a rocket scientist to work out what needed to be done. Today I payed the $1300 ($400 of it in cash for the anesthetist, sounds dodgy right??!) , and then I will claim that back from Allianz directly in a couple of weeks time when I get the itemised bill. Allianz don’t care where I have it done as long as it doesn’t cost more than the limit. This made me think may be I could pay for all my IVF treatment upfront and claim it back – I reckon I could save about $500 if I did that. But then I remember how many bills I got through and realised that there is no way I could easily track all of that and then track all those claims to Allianz in addition to also handle the pre-approval process. I did that for my IUIs and it was a headache. It’s not worth the stress. Even if it were to give me a crap load of credit card points!!!!

Insurance in the US – what an absolute nightmare. But I think I probably have it easy despite the unusual arrangement we have with United & Allianz. I have it easy because I have amazing infertility coverage, and for that I am truly grateful.

Anyway, here I am, ready to go now for my hysteroscopy procedure next Tuesday!!! Who’d have thought I’d be excited for a diagnostic procedure that requires anesthesia! This is what infertility does to a woman, it turns you into a masochist-craaaazy!

‘Tis the season…Pt 2

December 13, 2015December 13, 20156 Comments

‘Tis the season to be jolly. True. But my feelings can’t help but be a bit up-and-down like a see-saw. So I decided to split my post into two. Depending on how you are feeling this season, you may only want to read one or the other. Maybe you feel a little bit like me, so read both!

Pt 1: ‘Tis the season to be jolly

Pt 2: ‘Tis the season to be not so jolly

‘Tis the season to be not so jolly

I already blogged about the difficulties of the holiday season for those of us struggling with infertility (my post is here), so I won’t cover old ground. But this isn’t always the season to be jolly. And as much as I have equally had lot’s of jolly things going on, I have recognised that life isn’t always quite so jolly at this time of year.

1. Gift Shopping. I hate shopping at the best of times, and shopping with the Christmas crowds – my worst nightmare – I’ve written about this before. Shopping for baby gifts – EUGHHHH. I am an emotional roller coaster with this one! I love buying cute baby stuff, but when I see cute baby Christmas stuff – especially adorable onesies with “My 1st Christmas” I’m a wreck. I don’t think I need to say anymore about this one.

2. Distance. I am a few thousand miles from some of my greatest friends and of course my family. So when my mum told me she had received my Christmas Parcel and cried, I cried. Damn it. It’s not easy being far from loved ones at this time of year. We have had lovely offers from friends inviting us over to theirs for Christmas Day, but in fact this is something we just can’t do this year. We are going to start our own family traditions – I wrote about that already – we are excited to do this, but it’s not easy to do. Some people may say that we are lucky we don’t have to deal with ‘forced family reunions’ with nosey inquisitive family members; but even if we were back in the UK we are lucky that we have the most supportive family that this wouldn’t happen for us.

3. Trying to Conceive. Officially we are allowed to try to conceive again, but I have mixed emotions about it. I wrote a separate post about it so I won’t repeat it, but this has been playing my mind this week.

4. Facebook. A friend posted on facebook what seemed to be a pregnancy announcement, until you get to the bottom of the long carefully written post and realise they are just talking about santa clause. It was poor taste for someone like me struggling to get pregnant…but even more so because I felt sad that this couple may just find them selves to be one of the “1 in 8 facing infertility” one day. I wanted to tell them it was in poor taste, but then realised that I would just come across as a scrooge bag as so many people had already commented how funny it was.

5. Money worries. As my credit card bares the scars of many swipes this holiday season and our bill from the infertility clinic shows up with a surprise payment from September, I have the constant feeling of every penny counts. Actually, we are very fortunate to be in a comfortable financial position, but I want to keep our options open for the future and don’t want to close a door because I didn’t keep control of our outgoings. But Christmas is a time for giving, so in general I don’t feel guilty for the gifts I purchase or the charities we give to – it’s just the gifts that Chris and I give each other and the seemingly endless nights of eating out that make me feel guilty!!!

6. Coping with loss. This applies to anyone who has lost a loved one, not just those who have had to deal with losing a child, as well as anyone who has experienced loss of something of their physical self. Ultimately the Christmas holidays plays heavy on the heart of someone who has lost their hopes and dreams. As I sip my cup of tea in my new mug “When it rains look for rainbows” this reminds me to remember the positive things and love that I have been lucky to have experienced and made me a richer person, and “When it’s dark look for stars”, this reminds me to look up and remember our dreams are still out there and we are being watched over. It’s still difficult, and gets harder getting closer to the big day itself.

Everyone you meet is fighting a battle you nothing about. Be kind. Always.

We have far more jollynesss to keep us going for the festive season but it’s these kinds of things that remind me it isn’t easy for everyone, and even more so for many more people who don’t have the jolly things I described in my earlier post.

On the subject of coping with the festive season. Resolve has an excellent fact sheet about coping with the holidays (here) – it provides a collection of great articles I recommend for reading over a cup of tea. You may need some tissues to go with that too.

Abortion and the grey space

November 5, 2015November 5, 20158 Comments

We hear this word used in everyday life – abortion. We can all formulate an idea of what abortion is….someone choosing to end the life of their baby. But this isn’t a wholly accurate or fair description and is certainly not what medical professionals use the word ‘abortion’ for.

According to Wikipedia, the term ‘abortion’ can be defined as:

“The ending of a pregnancy by removing a fetus or embryo from the womb before it can survive on its own.”

The unintentional expulsion of an embryo or fetus before the 24th week of gestation is called a ‘spontaneous abortion’. This is the clinical term that is used by medical practitioners in their notes to describe what most lay people would understand to be ‘miscarriage’.

The intentional expulsion of an embryo or fetus is called an induced abortion. Reasons for intentionally inducing abortion are either therapeutic or elective:

Therapeutic abortion is performed to save the life of the pregnant woman; prevent harm to the woman’s physical or mental health; where indications are that the child will have a significantly increased chance of premature morbidity or mortality or otherwise disabled.
Elective abortion is voluntary when it is performed at the request of the woman for non-medical reasons.

And then there are the methods of abortion, including medical abortion and surgical abortion: Medical abortion (sometimes also called chemical abortion) is induced by drugs or pharmaceuticals. Where as surgical abortion includes procedures such as vacuum aspiration, Dilation and Curettage (D&C), Dilation & Evacuation (D&E) and hysterotomy.

The use of methotrexate to terminate my pregnancy of unknown location or ‘ectopic’ pregnancy is described as a medical abortion and can also be described as therapeutic abortion. Clinically, I did not miscarry. Although I am sure I had started the process of miscarrying before I took the methotrexate, and would consider it to be a spontaneous abortion – or – miscarriage – or – early pregnancy loss. However you want to ice it, in my medical notes it will be described using the word abortion.

For those who are not aware that this is actually a clinical term it can come as quite a shock to see those words on their medical records. For example, here is a link to a news article: “Mom to be shocked when miscarriage called ‘abortion’ in medical records” that shows how easy it is mis-perceive the term abortion.

But definitions of abortion vary across and within countries as well as among different institutions. Language used to refer to abortion often also reflects societal and political opinions and not only scientific knowledge. Popular use of the word abortion implies a deliberate pregnancy termination, whereas a miscarriage is used to refer to spontaneous fetal loss when the fetus is not viable (i.e. not yet unable to survive independently outside the womb).

Paul Freeling and Linda Gask* explain the problem well:

“As children many of us learnt the old rhyme “Sticks and stones may break my bones but words can never hurt me”. As we grew older we discovered that the adage was untrue. For most of us whose profession involved interacting with other people it became obvious that clumsy or inapposite use of language could cause pain. An attempt to avoid such pain has provoked…to suggest that distress in women who have miscarried would be reduced if changes were made in the language used by professional carers…the word “abortion” should be avoided because the lay public interprets it as applying to a termination of pregnancy.”

And then there is the grey space in between all of this. This is where in the US definitions and clinical descriptions are all important for insurance companies.

I recently read about a lady who fell right in between this grey space….

At a 13 week scan several doctors told her that her baby had a heartbeat, but the organs were not inside its body, the hands and feet are curled, one limb was missing, the neck was not right. Overall, the baby was unlikely to survive and should be removed as soon as possible before it could cause serious health issues. By definition, in Ohio, this situation was considered by the insurance company as an optional abortion because there was still a heartbeat, therefore, they would not cover the cost of the $10000 operation at the hospital. Planned Parenthood would be able to perform the surgery at a cost of $800.

Eventually, after the doctors re-worded the case, the insurance company agreed to cover the costs. But it came at a cost. You should read the whole article to fully appreciate what this poor woman went through: http://www.huffingtonpost.com/tamara-mann/heartbeat-involuntary-miscarriage-and-voluntary-abortion-in-ohio_b_2050888.html

This blog post is not about pro-life or pro-choice. It is merely a brief peek into the complexities of the use and definition of the term ‘abortion’.

For me personally, the insurance company did not initially cover the cost of my methotrexate treatment because it was being used as an abortion drug. Eventually we managed to claim the cost back directly via our European insurance provider.

I don’t have a solution to propose, I just know that abortion – whether it is spontaneous, elective, optional, surgical, medical – is a confusing grey mess of an area in the US.

* Freeling, P. & Gask, L., Changing terminology is no substitute for good consultations skills BMJ 1998; 317 doi: http://dx.doi.org/10.1136/bmj.317.7165.1028 (Published 17 October 1998)

The party and the door mat

September 14, 201515 Comments

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.

No returns policy

July 1, 201513 Comments

There isn’t much I have purchased in life that I have not been allowed to return, with the exception of swim wear, knickers, sale items and earrings. But today I purchased enough medication for our first IVF cycle….and it comes with a big fat no returns policy! There is no turning back now. The whole order cost us $770 (which is the co-pay at 10%, so complete cost of the medication is $7700!! Ouch.) and should arrive in a couple of days. I guess we are really doing this then….

First meeting with our IVF Nurse Coordinator

May 22, 2015September 24, 201510 Comments

On Tuesday Chris and I met with our IVF Nurse Coordinator at the fertility clinic. She had asked us to set aside about 1.5hrs for the session, so we both took the afternoon off work…and I’m glad we did! I left the meeting with that type of headache feeling you get after you have just sat a 2 hour exam. I felt completely awash with new information. Fortunately, we were given a nice homework pack to take home and read so we could absorb it in slow time.

We discussed the IVF process, basic biology and advanced cell biology. Schedule and timings of events. Medication and blood tests for both of us. We also talked about insurance issues, consent forms, checklists and calendars. Our nurse has been doing her job for 15 years, she knows everything there is to know. I was seriously impressed.

Unfortunately the embryology lab is closed for a few weeks in June/July. We thought this would be OK, but when we actually sat down with my period dates we worked out that we were going to have to wait another month. The nurse is not allowed to start anyone on a cycle that starts from the 29th May to 20th June. As my period started yesterday my next period is due around the 16th June. We were hoping I would two 28 day cycles to push me to the 20th June, but it now looks like that won’t happen. I was very frustrated. This means we will be expecting a retrieval date around either 3rd or 10th August, right in the middle of my mum visiting us in the US. Which I am sure she won’t mind, but it means we can’t plan any fun sight seeing trips until we get closer to the date. At least we will have time to get medications sorted and August is a nice quiet time at work so that will be good but Grrrrr, July would have been so much better for us. Oh well.

It looks like our insurance will cover Intracytoplasmic Sperm Injection (ICSI). Great news! We now need to sort out purchasing our long list of medication (by all means, I have a very short list compared to some other ladies) and choosing a pharmacy that our insurance accepts (we discovered we can choose what ever pharmacy we want and what ever brand of medication we want too).

My list of medication will be:

Birth Control Pills – yup, it’s ironic! I’ve never taken these before so I had a lesson on how to take them! This will help controlling my cycle so we can start the IVF stimulation at a certain time.

Gonal-F or Follistim – this is a Follicle Stimulation Hormone drug, adminstered by a subcutaneous injection. Oh great! Needles! This helps stimulate the ovaries to grow lots of follicles, more than I did for the IUI where I had 2-3 follicles, the goal is 20 or so! Yikes.

Menopur – A Follicle Stimulation Hormone together with a Luteinising hormone (were you paying attention in GCSE biology??!). Another subcutaneous injection.

Ovidrel – The trigger shot. Been there, done that. Although this time I will be taking this injection at a very precise time just before my egg retrieval surgery.

Ganirelix or Cetrotide – this will prevent me from ovulating on my own so the eggs are ready at the right moment for retrieval. Another subcutaneous injection. Wow. Four different needles already.

Progesterone in oil – I’ve heard about this one before and the needle terrifies me! It is an intramuscular injection. Just google progesterone in oil and look at the images page. This is instead of the progesterone suppositories I had with the IUI. Chris will have to give me this injection every night – in the buttock muscle! Have you seen the size of that needle????!?!?!

Vivelle patches (transdermal etrogen) – An estrogen hormone patch. YEY something that isn’t an injection!!!

Doxycycline – antibiotic for my egg retrieval (so I don’t get an infection after inserting the big needle they are getting to use to retrieve my eggs through my vaginal wall) Chris also gets to take doxycyline because we are doing ICSI, this drug affects the sperm and makes them less ‘sticky’ so it’s easier for them to select just one sperm to inject into my egg for fertilisation. That was something I did not know! Rather cool.

It was an intense session, but I was very excited that we are actually starting this and moving a step closer to becoming pregnant. We came home in a bit of a daze afterwards. The emotions running around were definitely mixed. Interesting times ahead.

The $$$ lowdown

May 10, 20152 Comments

I have created a new page on my site that sums up all the costs of our infertility journey so far. I will keep this up to date as much as possible…I have copied the text from it and pasted it below (or here is the link to the page)

We are very lucky that our medical insurance includes coverage for the treatment of infertility, including IUI and IVF.

We are being open and honest about these costs because it is important for people to understand the difference having insurance coverage can make. Only 15 states in the US make it mandatory for insurance providers to cover infertility treatment, and even some of those are extremely limited. There is much debate on whether infertility should be covered as an essential health benefit. There are many campaigns ongoing to change state law in this regard (www.resolve.org)

There is definitely a lot to be said about the psychology and stress to infertile couples over spending this vast amount of money if they do not have insurance coverage for infertility. Chris and I find this process stressful enough as it is without the added burden of the actual cost. I cannot even begin to imagine what it would be like without coverage. At each stage of our journey we have had to get approval from our insurance company and with having an ‘unexplained’ diagnosis we have always been nervous that they will not cover us. However, we have been fortunate so far. Fingers crossed they will cover our IVF too.

Item	Full cost	Insurance covered?	Final cost to us
Ovulation Kit (pack of 20) x3	$70.00	No	$70.00
Pregnancy Tests (various types) x4	$85.00	No	$85.00
Basal Thermometer x1	$13.00	No	$13.00
Pre-seed Lubricant x1	$24.00	No	$24.00
Chris blood tests	$572.00	Yes	$10.25
Dani blood tests	$560.00	Yes	$14.43
Reproductive Endocrinologist Consulting Fees (Doctor visits) x3	$340.00	Yes	$5.85
Ultrasounds x4	$900.00	Yes	$71.72
Anti-biotics for HSG	$15.97	Yes	$1.60
Sperm Analysis	$110.00	Yes	$1.53
HSG	$835.00	Yes	$29.18
Letrozole x3	$8.53	Yes	$0.86
Ovidrel x3	$371.16	Yes	$37.11
IUI x3	$765.00	Yes	$36.81
Sperm Wash x3	$320.00	Yes	$16.80
Progesterone suppositories x3	$147.00	No	$147.00
Running Total*	$5,136.66		$565.14

A note about our healthcare insurance. We pay a 10% co-pay for each bill of the ‘in-network’ cost, not necessarily 10% of the whole cost. Our current infertility clinic (or ‘provider’ as it is also called) is ‘in-network’ so we get extremely preferable rates; for example our new doctor visit it was $190.00, our insurance paid $0, so we paid $0. This is because our insurance company has negotiated these types of ‘bulk’ discounts in advance with our provider.

Choosing an ‘out of network’ provider can increase overall costs. There is one other fertility clinic in our area we could have chosen, but is out of network. It was something we considered, but we went on recommendation and did not think too much about this at the beginning.

Currently my insurance premium is ~$500 a month, plus my employer contributes ~$1100 a month, this covers both Chris and I for all medical expenses including dental and optical.

*As of 10th May 2015

Surprise surprise!!!! IVF!

May 5, 2015May 5, 201512 Comments

Well my blog post title has given the game away, so in summary…our next step will be In-Vitro Fertilisation!

This morning we met with our RE who reviewed our progress so far, or lack there of. Our tests were all normal, the three IUIs all went according to plan (except of course for the pregnancy part), I responded well to the letrozole with 2-3 follicles, Chris had awesome sperm. We remain unexplained, but she does still suspect endometriosis. If my period pains were so bad that they affected my life and I wanted that to change then she would recommend a laparoscopy. This surgical procedure comes with risk, side effects and can take several months to return to normal, so if my periods were so bad this would be the way forward, however, in my case the benefits are unlikely to outweigh the downsides. So she recommends we move straight to IVF. She explained the overall process:

Week 1 to 2 – after menstruation I start birth control pills for about 14 days, these help to control my hormones

Week 3 – start injectable medications to control ovulation and stimulate follicles to grow – many many more than the 2-3 that were stimulated with letrozole in order to get the best chance of retrieving some ‘good eggs’.

Week 4 – continue injectable medications…have ultrasounds every other day to monitor follicle growth, along with blood work to monitor hormone levels. When the follicles are ready, we will inject the hCG Ovidrel trigger and 36 hours later I go for egg retrieval surgery. Under sedation my eggs are extracted from my ovaries. Chris provides his sperm and my eggs are fertilised in-vitro. After the eggs have been fertilised, the embryos grow for a few days under close watch. Then if they survive, one or two embryos are transferred directly into my uterus.

Week 5-6 – start injectable progesterone until the big pregnancy test either says – “woohoo you are preggers”! then I stay on progesterone, or…”booooo it’s a BFN my friend”, then we will…..well, let’s not go there right now.

This is everything I expected her to say, except for two things slightly different.

First, I need to go for a hydrosonogram. This procedure will produce a 3D ultrasound of my uterus. I will have this last test because I have a severely retroverted uterus they could not see it very well on the HSG X-ray, they want to double check that there is nothing preventing the implantation stage.
My HSG X-ray with my retroverted uterus (it’s hard to see because it’s hiding behind the catheter)

I have been promised this does not hurt quite as bad as the HSG. THANKFULLY!!!!
Secondly, she thinks it would be a good idea to do Intra-Cytoplasmic Sperm Injection (ICSI) because we are ‘unexplained’. This is a procedure where a single sperm is selected and injected directly into the egg rather than normal IVF where the sperm is placed near the egg. This procedure is an extra $2,420 so we need to check whether our insurance would cover this or not.

Talking of costs….it is going to cost $9,075 for the IVF which includes office visits, endocrine monitoring, ultrasounds, retrieval, transfer and first pregnancy test. Plus, it is an additional $400 for the anaesthesia. Medication will be approximately $4,000 to $6,000. Then the ICSI procedure is $2,420. Cryopreservation is $1000 then $60 a month for any embryos frozen. Yikes!!!! But we roughly knew this anyway, it’s just a bit scary seeing it listed out like this.

So for now, we start the negotiating with our insurance and the diary planning. It’s looking like a late June start.

Ultimately, today I walked away with this one key figure she gave: for us – a 50% chance of success. In my mind that is pretty amazing. I’ll take that. I’ve always been a glass half full kind of girl, lately it’s been half empty, today I think I’ve been topped back up 🙂

Thank you for all your support and kind thoughts so far, I’m feeling pretty encouraged this will work!