Chris #FlipsTheScript

Infertility isn’t just a woman’s issue, it’s a man’s issue and it’s a couple’s issue.  So when I asked Chris to do this interview he said ‘sure’, but he later let on that he was actually anxious about it.  Even though our story is here on this blog, he finds it hard to still talk about.  So I am very proud of him for pushing through his fears to tell you his story.

Chris, my husband, is here to #FlipTheScript for national infertility awareness week, here’s his story…

img_3442

First of all, tell us a little bit about you and your partner….how did you meet?!!

You know a lot about my partner, Dani, this is her blog!!!  But you probably don’t know how we met.  We met at a work event, Dani was organizing a conference and I was a guest presenter.  Although she will swear blind that I wasn’t a presenter, potentially because the amount of wine we had drunk the night before fogging her memory.  We got along very well…the wine may or many not have been a factor.  We married in 2012 and moved from the Cotswolds, UK to Virginia, USA, 6 months later, where we still live today.

img_3385

When did you realize that you were facing a diagnosis of infertility, how did you find out and what were the issues that you faced?  

I married Dani thinking that we probably wouldn’t be able to have kids.  It wasn’t a surprise.  But I loved her enough that it didn’t matter.  So finding out we were infertile was more of a confirmation of a strongly held suspicion.  Mind you, we did have a go at it naturally for a year before hand.  It never really felt like a diagnosis of infertility, instead it was an increasing realization of infertility over time.  The failures added up after repeated unsuccessful attempts, we never had a diagnosis – it was just unexplained infertility.  This changed how I felt going into each round of treatment.  The first round of treatment, an IUI, was exciting, we went in full of hope… but by the sixth treatment- our third IVF- each cycle was no longer exciting.  It filled me with a sense of dread, and I went into it wishing it was over before it started.  Some of this was my own personal journey and some of this feeling was because it hurts to see the person that you love go through the physical pain and hurt with all the drugs, surgeries and hormones.

img_3388

Where are you on your infertility journey now?

I don’t know.  While that may sound like a strange answer, I don’t know if our journey is over or not.  Is infertility ever really over?  The great news, the wonderful news, is that our sixth round of treatment, our 3rd IVF cycle, was successful and we now have a 16 month old daughter, Aviana.  The reason I am not sure if the journey is over has two parts.  The first is the question of whether we can have a second child, and in part do we want to have a second child, knowing full well the challenges and stress we experienced to conceive Aviana the first time.  The second is that I will always have a nagging question in the back of my mind about whether Aviana is destined to follow the same path as us.  By using science to overcome our infertility challenges, do we pass on our ‘duff parts’ to our future children? So our infertility journey may continue into the quest for grandparent hood.  But having experienced all that we have,  I will never pressure Aviana into having a family.

Oh, and we have one frozen embryo from our first IVF cycle.  Every month we get the $60 bill for the storage of it, a constant reminder of both hope, and the potential for disappointment.  We don’t know what we will do next.

2017-05-13 11.26.31

Has infertility changed your relationship with your partner? 

This was the hardest thing we have ever done. At times through our journey I felt a small amount of hate towards Dani for what felt like forcing me to go on to the next cycle, and I also hated myself for not having the strength to immediately, and willingly, support her.  I thought long and hard before making these statements but we spend so long and so much effort hiding our feelings, experiences and the challenges of infertility that we often put a positive slant on the pain, therefore this is my honest answer, although I must confess it is uncomfortable to say out loud.

The good news is that despite these low points throughout our journey we became closer. It has brought us closer together because:

  1. You have to be close to stab your partner with 200 + needles. Nothing says togetherness like shoving a 2.5inch needle into someone’s body.
  2. You have to be forgiving when being stabbed by your partner (thanks Dani, sorry for the mistakes).

The only way we got through it was as a team. We talked a little and often, we talked in the shower, we talked in the car, we could stop and start the conversations as either one of us felt willing.   Being open, truly open, about how we felt meant being vulnerable and at times brutally honest.  After being so vulnerable and so open, I now feel a level of comfort, closeness and companionship that was more than we had before.

How has infertility impacted you financially? Did your healthcare insurance provide coverage for infertility treatment?

We are very fortunate, we are among the few who have infertility treatment as part of our healthcare coverage in the US.  The majority of our costs were covered by Dani’s insurance and yet we still had to plan and budget for the portion we had to cover.  I’m amazed at those who are forced to self-pay for IUI and IVF treatments because it adds another level of stress to infertility that we didn’t have to deal with.

How have you taken care of yourself physically and emotionally during your struggles?

In the early part of our journey we tried many things to help improve our chances.  We cut out alcohol, we cut out sugar (all good advice that come from ‘It starts with the egg’).  These two acts by themselves served to improve our general well-being and we made a concerted effort to do more exercise.

To be honest, as the journey went on I cared a little bit less about my physical health and focused more on my mental health.   Our first IVF ended in a suspected ectopic pregnancy, leading to us having to terminate the pregnancy of unknown location with the drug methotrexate.   Because methotrexate is to toxic we were not allowed to conceive for at least 3 months after.  After our second IVF failed and as we began our third cycle I began to hate the process, hate the ever present doubt, dread and stress. This was the lowest point for me and where our relationship was most challenged. I didn’t want to do it again, I didn’t want Dani to hurt again and I didn’t want to hurt any more either.  On top of all that, Dani was caught in the Brussels terrorist attack at the airport and was blown up, I didn’t take care of my mental health.  I wanted it all to be over with.  We knew that it would be our last attempt, there was so much pressure.  I don’t know what would have happened if we didn’t get that positive result or we had another loss.  I don’t want to think about it.

How have your friends and family supported you through your journey?  Have you had any experience of lack of support or misunderstandings?  

Overall friends and family have been awesome.  Everyone was supportive, many people asked how they could help.  The flip side of this, which many people going through infertility have probably experienced, is the good intention, but totally uninformed advice and suggestions.  ‘Just Relax’.  ‘My friends tried this…’ ‘Have you tried herbal tea…’ At one point we had received so much of this “advice” that Dani and I started writing a book as a guide for friends and family for what not to do and how to better support loved ones going through infertility.  This is not a criticism, this is a statement of fact, and weeks like this infertility awareness week and #FlipTheScript are part of an ongoing process to educate, inform and raise awareness so that more people know about the challenges faced by 1 in 8 couples. Their good intentions and enormous support and generosity can be coupled with better information so they can truly support the people they love as they go through this truly shitty experience.

What has been the hardest point of your journey and how did you deal with it?  

I can’t and won’t pick one point in this journey.  To do so would diminish all the other moments.  Every part of this journey is difficult.  This whole experience has a price, not just a  ‘$ price’, but an emotional price that we pay for every minute and every day in our struggle to conceive.  Low points come in many forms, the most obvious is the doctor saying we are not pregnant.  The less obvious come when you are sat in a café and look up to see a family enjoying time together, it is just another reminder of what we don’t have.  And in that moment that’s a low point.  As with all journeys there are twists and turns, highs and lows and the journey is different for each of us.  There were some very low points for me, but I’m not comfortable sharing them specifically.  (you may be able to guess some of them from my previous answers 😦 ).

If you could go back in time, what advice would you give yourself?

None. I don’t think any advice I could give now would change how I felt then.  We had so much advice from so many people, much of it good, some of it not, some of it just plain weird, but when it came to it, what really mattered was how Dani and I felt in any moment and how we handled that together.

As it’s national infertility awareness week, what message do you want to share about infertility to the general public? 

1 in 8 couples are affected by infertility.  Looking around you on a train, in a café, at you work place and realise that as many people are affected by infertility as they are breast cancer.  Charities and support groups have done a great job of raising awareness about cancers like breast cancer….we need to do better to raise awareness of infertility. Talk about it.  Help raise awareness.  Get more research funded.  Help us to bring this topic out from the shadows.  Play a role in removing the stigma from infertility.

Is there anything else you would like to share that I haven’t asked you about?

One final thought, infertility can create some surreal moments that can be laughed about after the fact. For example, there is nothing quite like sitting in an open waiting room at a hospital holding a test tube containing a bright pink sample of your sperm.

Please leave a comment or message of support below for Chris (and me if you like too!!!) 🙂

Advertisements

Not forgetting Huckleberry

Speaking of not forgetting….this week my app ‘Glow’ I use(d) to track my periods told me that my period was due in 2 days!  Well that was a strange thing to say because I had marked “I am pregnant” on the app.  So I decided to open it up and see what was going on.  Glow was telling me I am pregnant still, so  I am not sure why it was telling me my period as due.  Anyway, it came up with a big advert saying download our ‘Nurture’ app, a follow on app to glow for pregnant women.  So I thought, well why not give it a go.  I had already used it once before when I was pregnant after IVF cycle 1 and so downloaded it off my cloud.  Once it installed I opened it up and this is what I was faced with…

huck

 

Are you kidding me???? Oh it was a stab in the gut. Yesterday I was 44 days overdue and Huckleberry was the size of a slightly bigger pumpkin at 46 weeks old!

I haven’t forgotten you Huckleberry. I promise you I never have.  But this was just too much.  I deleted the app straight away as I couldn’t deal with trying to figure out how to reset it.

The cost of a suspected ectopic pregnancy

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

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

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

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

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

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

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

On being pregnant in a war zone Pt 1

Spring 2007

I winced as the doctor examined my stomach.  The pain was excruciating.  As he prodded, he said “feel here…see?”  I felt my own stomach where he indicated – it was hard, not squishy like normal.  I continued to wince as he poked around my tummy.  “This is your poo.  You are constipated.  We will get you some laxatives and you should be better in a few……”.  The piercing alarm sounded.  We both looked at each other and quickly dived on to the floor.  My body armour and helmet were in the waiting room, no chance of me grabbing hold of it in time.  I leopard crawled under the table, it probably wouldn’t offer me much protection. The doctor grabbed his own body armour and helmet just as there was a loud thud and the ground shaked.  As he put his body armour on and quickly threw on his helmet, he mumbled “Here we go again!”  I wasn’t sure if he was trying to make conversation or if he had genuine grievance by the incoming rockets.  The way I was feeling about these rockets I felt it was probably the latter.  After a few minutes of what was probably the last rocket (usually 2-3 at a time), the doctor quickly stood up and said, “I’ve got to go, I’m on call for the crash emergency team.  Wait here until the all clear, someone will be with you soon.”  And he ran out of his office.

As I lay there on the dusty floor waiting for the all clear siren to sound, I felt stupid.  I felt stupid and embarrassed that all I had was constipation. I wondered how it had happened.  For the last 8 days I had hardly eaten a thing, I felt nauseous and I had horrific stomach pains.  These pains were sharp and short, sort of like my IBS pains, but twice as painful as usual. But this didn’t seem like IBS.  I promised myself I would go to the doctor after 7 days of feeling like this.

The all clear siren sounded. I got up and left the office to speak to the corporal at the reception desk. I explained what had happened, she told me to take a seat in the waiting room and another Doctor would see me shortly. I waited for half an hour. All I could think about was that someone must have been injured by the rocket attack, otherwise my doctor would be back by now. This made me very sad.

I was called into the very same office I had been in just 30 minutes ago, but this doctor was different. I explained that the previous doctor was just about to prescribe me something for constipation. He asked me to tell him from the beginning what the problem was and the symptoms I was suffering. He wasn’t going to sign anything until he made his own diagnosis.

He asked me all sorts of questions about my IBS, what I had been eating, how often etc…it all made sense to me. New environment, crappy food, stress from rockets. Usually my IBS presents with horrific diarrhea, but now my IBS was giving me constipation. Not uncommon, right? But this doctor asked me (like the other doctor) “Is there a chance you could be pregnant?” I laughed and said “No, very unlikely!”, he said, “Well let’s be sure, I want you to take a pregnancy test before I prescribe you anything”. “Sure….” I said, but muttered to myself “…if you want to waste our time”. The doctor called in the nurse and explained I was to take a pregnancy test. I dutifully peed in the cup and together we sat down and waited for the results. The nurse tried to make small talk about the recent rocket attack. She proceeded to tell me that a lot of girls try to get pregnant on purpose to avoid deploying or wanting to be sent home. But then her words slowly slurred to a halt, she paused and exclaimed with a look of unexpected shock “errrr you are………pregnant! Ummm, congratulations?!?”.

I could feel the blood drain from my face in disbelief. I haven’t had a period in years after my depo provera issues, how was this possible? What is going to happen now? I’m not ready for this. I’m not one of these girls who purposefully gets pregnant just to be sent home. I volunteered to deploy to Iraq! I volunteered to be with the rest of my unit. Despite the shit getting real with the rockets, I wanted to be there, to do my job, to serve my country.

I could hear in the distant background, the nurse asking me all sorts of questions about if this is what I wanted? Was I excited? Did I need anything? But I was in too much shock to answer her questions other than mumble a no.

The doctor who made me take the test called me back into his office and said “Well, now we can explain the constipation and nausea. But this doesn’t explain your pain. We need to make sure you are not having an ectopic pregnancy. Let’s get you to the Emergency Hospital for a checkup by the specialist. I was hurried out of the doctor’s office, into the back of an ambulance to drive the half mile to the emergency hospital. This was the most embarrassing thing of it all. Being driven into the ER entrance. Pregnant. Not shot, wounded or even sick. Just pregnant.

I had no idea what an ectopic pregnancy really meant. I was prodded and poked all over again by several nurses and doctors. They even checked my constipation and try to help it along, but there was nothing in there. There was no poo. After all, I had barely eaten for the last 7 days. I hadn’t pooed in 4 days.

Finally, my boyfriend arrived at the hospital (yes we were deployed together, we got it together during pre-deployment training). He had no idea why I was in the hospital, he had left me at the doctors only 2 hours ago! He looked panicked. I looked at him and tried to get the words out, but I just started crying. It was the first time I cried since finding out my news. Eventually he got it out of me, and we both cried. We cried conspicuously together as we were not really sure how else to do it, this crying thing.

The hospital facilities on our camp did not have a vaginal ultrasound machine. The closest one was in another country – Kuwait at a US Airforce base. They wanted to check if the pregnancy was ectopic as the symptoms matched. I was put on the medevac waiting list and told to go back to my room and rest until I was called to fly.

I went back to my room, cried a lot, read up on ectopic pregnancy, and asked myself a lot of questions. How will I explain this to my unit, to my boss? Will my boss know already? What are the rules on medical confidentiality? Will they send me home? Will I be discharged from the Army? What if I have an ectopic pregnancy? Should I tell my family? When will I be able to eat again? When will this pain go away? So many questions as I lay in my room, sometimes in bed, sometimes on the floor under my bed as the rockets kept coming throughout the day and night. Get some rest? Ha. No rest for me….

TBC.