What is wrong with me

“What is wrong with me?” I must have asked myself this question thousands of times. Especially in the last few years.

I asked “what is wrong with me” when we started trying and month after month I wouldn’t get pregnant.

I asked “what is wrong with me” when I finally got a positive pregnancy test, but had been bleeding on and off for a week, in what turned out to be an ectopic pregnancy.

I asked “what is wrong with me” when I got pregnant the second time and couldn’t blissfully enjoy the pregnancy, as I was still hurting from the first loss, only a few months prior.

I asked “what is wrong with me” when the doctors confirmed our second baby was not developing and had died in my womb.

I asked “what is wrong with me” when my body wouldn’t even miscarry naturally, always requiring medical intervention.

I asked “what is wrong with me” when we saw the little heart of our third baby beating in the ultrasound screen and I still couldn’t believe I would be taking this baby home, alive.

I asked “what is wrong with me” when I couldn’t bounce quickly back after yet another loss, as it seemed to be expected from me.

I asked “what is wrong with me” when during my first IVF egg retrieval the doctor uttered in disbelief that I had spontaneously ovulated and so she could only retrieve one egg.

I asked “what is wrong with me” when I couldn’t genuinely feel happiness for all my friends’ and sibling’s pregnancies, as my sadness and jealousy got mixed in.

I asked “what is wrong with me” when I watched one after another, pregnancy tests not showing the expected progression, indicating our 4th baby wouldn’t be coming home either.

After that fourth loss, having been through 2 IVF fresh cycles, one emergency laparoscopy, one dilation and evacuation surgery, loosing one of my tubes and countless examinations and procedures, I needed an answer. I couldn’t bear hearing “just bad luck” anymore. I needed to know exactly what was wrong with me, why my body couldn’t sustain a pregnancy. And I would spare no effort to get an answer.

I took matters into my own hands and even ordered some genetic tests online by myself. I visited several specialists on different countries. I finally paid a large sum of money to one of the world’s leading experts in this field, simply to find out “what is wrong with me”.

And I waited. I patiently waited months on end, while trying to make any lifestyle changes that could help.

As the day for receiving my most anticipated test results approached, a huge wave of anxiety settled in. What if there’s nothing wrong? What if it’s just bad luck? Am I overreacting? Am I wasting time and money and putting myself and my husband through all of this for nothing? Just to satisfy my childish desire for control?

I now really wanted there to be something wrong with me. Anything. Not only so I could focus on fixing the problem, but also so it wouldn’t have been all for nothing.

When our appointment time finally came, I was ready. Dr. Braverman jumped right in and listed all his findings. There are quite a few things wrong with me, as it turned out, but he had a plan. A plan that involved several drugs and surgery, but could give us about 80% chance of conceiving and carrying to term.

After the appointment I felt immense relief. There were reasons. There were possible treatments. I was ecstatic with the news, if only a bit worried about our next steps. And so we left to my (Zika infested) home country for two weeks of vacation. I just needed to let the news sink in before we could make a decision of how to move forward.

Coming back home, I couldn’t let all the information from the appointment in the back of my mind anymore. It started to overwhelm me. All of it: the diagnosis, the prognosis, the suggested treatment, the financial strain required. It all seemed like too much to bear.

The initial excitement was now fully converted to worry and doubt. Is all this really necessary? What consequences all these drugs will have on myself and my baby? Why should I trust this doctor more than all the others that told me I should just try again? Why would him be right and not the others? Just because he fed my desire for an answer? And what answer is that, anyway? It’s not a one-line diagnosis. It’s a collection of little things here and there, which may or may not be contributing to my losses. And his treatment suggestion started to feel less like my much desired tailored protocol and a lot more like a from-the-shelf solution offered to everyone.

In the world of reproductive immunology there’s no shortage of antagonistic opinions and disagreements. No treatment or diagnosis is easy and straight forward. There is too much doctors and researches are still trying to comprehend, so it’s easy to feel like a lab rat.

Yet, we still needed to make a decision. One that was right for us, our individual situation. Although it took a lot of talks, a few arguments and many tears, we reached a decision that we were comfortable with.

So here’s our current plan: we are going to waive surgery for now and try a FET (frozen embryo transfer) while following the reproductive immunology treatment protocol. And hopefully it will happen next month (August).

HDR photograph of an abandoned dock set afire by intense sunset color

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For those who would like to know all the nitty-gritty details of what seems to be wrong with me, here’s the list (Disclaimer: I’m not a doctor nor an expert, I’m simply stating my personal understanding on these complicated issues):

  • Endometriosis. Braverman was very adamant about this and expects it to play a very large role in my case. That’s why he was strongly advising excision surgery before any further treatment. This was also one of my major doubt points. Even though I’m quite certain I probably do have endometriosis (only surgery can diagnose it for sure), as I have several symptoms and family history besides Braverman’s findings, I was not convinced it’s causing so much damage at this point. We did succeed in achieving 7 high grade blastocysts out of 10 eggs in our second IVF attempt, which is a quite good result. Our decision has then been to postpone surgery for now and give it one try with only the medications first. My endometriosis symptoms are not affecting my life too much at this point and if I can avoid another surgery it’s for the better. It also give us time to research our options regarding surgeons and costs. Braverman advised us to perform the surgery in his clinic, with his trusted surgeon, but as we would have to pay out of pocket for all expenses, this seems unlikely at this point. We are looking into other options within Europe.
  • HLA matches. My husband and I seem to share several HLA genotypes. This makes it harder for my immune system to recognise the pregnancy as such (instead of a threat) and put the protection mechanisms into play.
  • HLA-G mutation. I have a gene mutation which has been associated with a decreased capacity for the immune system to recognise pathogens (such as virus, bacteria, etc). It has also been associated with recurrent miscarriages. It seems the same mechanisms into play when identifying pathogens are used for recognition of the embryo. This made me wonder if this mutation could explain why I’ve been so sick so often during my childhood and teen years.
  • Several autoimmune markers. I have several genetic markers associated with autoimmune diseases, some of which I have already developed (psoriasis, asthma, Hashimoto’s/ Grave’s disease), some I may or may not develop in the future (Crohn’s disease, psoriatic arthritis, among others). This relate to pregnancy loss because, in simplistic terms, shows that my immune system is not great in differentiating between self and non-self tissue (thus the attacks on self-tissue, which characterises autoimmune disorders), which is an essential part to the process of recognising the developing embryo and activating the protection mechanisms.
  • Natural killer cells and cytokines. This part is very confusing. Some doctors believe NK cells can attack an embryo and thus are only interested in elevated levels of these. Braverman does not share this belief. He says there has been no scientific study to date showing such attack happening. However, he believes that unbalances on these cells and on certain cytokines (chemicals released by the immune cells by which they “communicate”) can be used to understand the actual state of a person’s immune system, giving “clues” regarding faulty mechanisms. In my case, I have several that are too low, several that are too high and some there are within normal ranges. He says it’s compatible with endometriosis, psoriasis and asthma.
  • Highly elevated anti-paternal HLA antibodies. My immune system seems always so slow and weak when reacting to infections, but it’s all too eager to develop antibodies against my husband’s cell tissue. This is quite important as Braverman believes these antibodies can effectively attack the developing embryo and placenta. However, even though I have very high levels of these antibodies, so far they don’t seem to be attacking (not complement-fixing, in the technical term), but Braverman is concerned they could switch into attack mode during pregnancy.
  • MTHFR mutation. I’m heterozygous compound (have one – out of two – allele for each mutation). This has been associated with increased risk for recurrent miscarriages. I already knew this from my own research and have been using methylated folate and methylated complex-B vitamins since October last year.
  • Elevated anti-thyroglobulin antibodies. This was seen before, during my last pregnancy, but never while not pregnant, until now. It seems I’m developing an autoimmune disease against my thyroid. It’s hard to say if it’s Hashimoto’s or Grave’s at this point, and my TSH is within normal ranges for now, but on the lower side. I’m not sure what to do regarding this besides keeping an eye on it. My body is able to counteract the attack so far and produce enough hormones.

These were the major findings. It’s not all bad news though, so for the record I’d also like to list some of the things that are not wrong with me:

  • No KIR genes
  • No APAs (and this time all 21 were tested)
  • No ANAs
  • No TH1/TH2 unbalance
  • No thrombophilia mutations besides MTHFR
  • Normal levels of homocysteine, vitamin D, proteins C and S

As we’ve decided not to have surgery for now, my reproductive immunology treatment protocol will consist of the following drugs:

  • Intralips infusions every 2 weeks from cycle day 1. This is meant to help regulate my immune system. Each infusion takes 2 to 3 hours and I may need to continue them throughout the pregnancy. I’m currently looking into my options regarding getting this treatment where we live, otherwise I’ll need to travel abroad every 2 weeks (which is far from ideal, but I’ll make it work if need be).
  • Low-molecular-weight heparin (Lovenox / Clexane) injections daily from ovulation. This is a type of anticoagulant. It’s meant to help with blood flow to the developing embryo. Mainly due to my MTHFR mutations.
  • Prednisone every day from ovulation. This is a corticosteroid, used to suppress the immune system. I was quite concerned about using this, as it can cause several unpleasant side effects and if used for long (over two weeks) can cause the adrenal gland to shut down, which can be very hard to recover from. Not to mention suppressing my already weak immune system, possibly leading to basically getting every bug out there. However, I’ll be on a low dose and when I realised this is in fact the same medicine I’ve used countless times before against strong allergic reactions, I was much more comfortable, as I know I don’t react very badly to it (though I’ve never been on it for longer than two weeks, I think).
  • Filgrastim (Neupogen) injections daily from ovulation. This is suppose to help with my HLA issues (matches, mutation and anti-paternal antibodies). It essentially forces the body to produce more of a certain type of immune cell, neutrophils.

Other recommendation from Braverman are to remain on a gluten-free diet (I’ve been on it for several months now), take methylated folate (also been on it for many months), take some specific supplements to help with the endometriosis (I’ve started on his Endo-optimize supplement and probiotics) and supplement with calcium while on prednisone. I’ll also be regularly monitored while on these drugs and need to rerun the immune tests after the beta result (no matter if it’s negative or positive).

The FET protocol itself will be a natural cycle FET. This means, there will be no hormonal replacement during the first part of the cycle. They will simply monitor my follicle with ultrasound scans until it’s big enough, then I’ll take a HCG trigger shot to force ovulation and the transfer will be scheduled to 4 days after that. I’ll supplement with progesterone gel after the transfer. This is the standard protocol on the (publicly funded) clinic we attend and they don’t steer away from their standards. It’s take it or leave it.

We’re taking it and hoping for the best possible outcome.

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These last months I’ve also been asking myself “what is wrong with me” in the context of blogging. So much has happened, there was so much I wanted to write about, but just couldn’t. Maybe I needed time to process my feelings. Maybe I needed some distance. Maybe I started to feel left out as seemly everyone I follow is either pregnant or parenting. So I’m sorry I haven’t posted in a while and I’m really sorry if I wasn’t commenting as much. But I’d really like to say how happy I am for everyone that is finally seeing their dream come true, and I wish you all nothing but the best, as you all deserve it so much!

On pain and friendship

My pregnant friend A. gave birth.

I’ve been dreading this moment so much, I’ve been avoiding her. I tried my best to ignore the ever-nearing date; as if ignoring her soon-to-come birth date, I could succeed in ignoring the fast approaching due date of my last lost, only a few weeks after hers.

However, the date came despite my best efforts. I first got a WhatsApp group message announcing the birth, with pictures, when I was on my way to a counselling session (great timing). I didn’t have time (or emotional strength at that moment) to call my friend, so I quickly texted my husband to call them and figure out if we should pick their toddler from daycare later on. We had previously agreed to look after their 3 year old son while they’re in the hospital for labour, since their families live abroad.

Mission accomplished, I put it into the back of my head again and went in for my therapy hour.

On the way out, eyes still swollen from crying (am I the only one who cries at every single counselling session?), I noticed a missed phone call from my friend’s husband. Not wanting to dealing with it just yet, I though I’d drive back home first. But, just before I entered the car I saw a text from my husband: “A. is going into surgery. Something went wrong after the labour.”. My heart immediately sank.

Guilt washed over me… My friend ever so perfect family story had suddenly – as these things always are – been tainted by painful trauma. Life changes in a second,  I shouldn’t ever had assumed everything would be perfectly fine, I shouldn’t ever had assumed they would go through life without experiencing considerable pain. I felt small in my selfish shame and guilt. Why didn’t I call more often to ask her about her pregnancy? Why didn’t I sucked it up and listened to her pregnancy woes? What if the worse happens? All my so called ‘suffering’ is nothing close to this potential tragedy.

I hurriedly called her husband for details. Bleeding. Haemorrhage. Transfusion. Surgery. Baby is fine. “I’m coming over to the hospital right away”, I said. “There’s nothing you can do, it’s at the hands of the doctors now” “I can be there for you”, I replied. “I’m fine” (he wasn’t, really). “I’m coming anyways”.

Half an hour later I arrived at the hospital. The same one I visited several times during my last loss and where, ultimately, what was left from my baby was surgically removed from my womb. That maternity ward was, thus, no stranger to me.

The dream

Walking down those hallways, looking for the right room, I couldn’t help but remember the last time I walked that very same path.

It was during a very quiet weekend; the hospital seemed eerily empty. My husband and I walked for what felt like forever, looking for a nurse, doctor, anyone who could guide us the right way. But there were no one. Only empty corridors decorated with beautiful black-and-white pictures hanging in the walls: pictures of newborns and pictures of labour. Beautiful pictures that felt like painful, sharp knifes into my already too frail heart, from yet another lost baby.

That day, those empty corridors, the loneliness of the situation, it all felt so familiar. Because I had already lived that exactly situation in a dream.

I had this dream a few weeks (months?) after my third loss. In it, I was about 5 to 6 months pregnant, but I was in labour. We rushed to the hospital, but it was completely empty. No nurses or doctors in sight. Only empty room after empty room. We walked for some minutes, yelling for help, until I couldn’t anymore. The baby was coming. We entered a room and I proceeded to give birth, with only the help of my husband. Neither of us knew what we were doing, it just happened. The baby came out without crying. I thought to myself, ‘of course it didn’t survive, it’s too early’, but the pain didn’t subside. It was another baby. This one didn’t cry either. Without any strength left in me, I fell asleep immediately. When I woke up, I could hear baby noises. I looked over to my husband and he was holding a crying baby in his arm; another one, moving and about, was placed on a crib. ‘Give me her’, I said, at once. Holding her in my arms I couldn’t stop thinking how I had already failed as a mother. I didn’t have enough faith my babies would survive. I didn’t provide to them as soon as they’re born. I didn’t feed them right away, and now they might not make it because I’m such a horrible mother. I tried to breastfeed and while at it, I noticed how severely disabled our both girls were. But my love for them was no less.

I woke up from that dream crying. I could never forget it, because it sums up all my fears and feelings so well. The loneliness. No one we can rely on but ourselves. Doctors never there when we need them. Battling on uncharted territory, not having a clue what we are doing. The ever present guilt and shame. The feelings of ‘I could or should have done it differently’‘I could have avoided this’. And of course, the realisation that, no matter how many times people tell me ‘it’s better this way, the baby was defective’, it doesn’t change the fact that I love them. All of them.

Postpartum complications

I finally found the room. My eyes went straight to the bed, where the baby was peacefully sleeping. My friend’s husband was looking pale and worried. I hugged him tight. I could feel his hands trembling and his chest pounding. I felt his pain and hold him tighter. He pushed me away.

“How is she? Any news?” “She’s still in surgery, but they said she’s fine. It seems the bleeding has stopped. They’ll let me know more later”. Great news.

Our attention steered back to the baby lying on the bed. We both sat by it with nothing to do but wait.

I wanted to say the right thing. So many times I’d been angry at my friends and family for saying what I considered wrong, hurtful comments. Why were they wrong? They belittled my pain, they offered me empty, meaningless promises. I couldn’t do that. I wasn’t going to say “everything is going to be fine”, because I didn’t know that and I couldn’t know that. I wasn’t going to say “don’t worry”, because of course he was worried and had every reason to be. So I said, “You must have been so scared”. Probably not a comment worth of any empathy prizes; just sincere enough to mean ‘I see your pain’. “When they took her away, I’ve never been more scared in my life. It all happened so fast.” I simply listened. I could see he needed to vent, but was holding back.

I was also surprised by how confident I was that everything was going to turn out fine. Every time someone tells me, “I know it will happen to you, I just know you will have a baby”, I want to scream at them. How?? How can they possibly know that? How can they be so confident? There are no guarantees.

There were no guarantees for my friend either. Yet, I felt so sure it would be fine, the words “everything will be ok” kept wanting to jump out of my mouth. Stubbornly, I didn’t allow them to. How is it that we feel so much more faith, confidence, when it’s somebody else’s problem? Where does that come from?

He told me a bit about how it all happened. Quick, uneventful labour. Everything was looking great, but the pain was increasing. She was bleeding heavily but the blood was stuck in the womb. Nurses and doctors didn’t notice until 2 hours later. She lost almost 3 litres.

Newborn fear

Waiting for hours on end, all we could do was talk. Talk about what happened and about the future, but also just chat about silly things, distracting ourselves from fear.

Each time we fell silent, our eyes would turn to the sleeping, perfect, beautiful, baby girl.

She was one of the main reasons I was dreading this day. I was afraid of the moment I would come to the hospital to visit my friend. In my mind, we would find them perfectly happy and she would hand me the baby over to hold. And that was my biggest fear.

Last time I visited a newborn was during Christmas break. I was dreading it too. My loss was too fresh still and the baby was the son of my husband’s cousin, whom I don’t know very well.

Arriving to their house, the first thing I noticed was how his wife, the young mother, had just transformed in front of my eyes. Becoming a mother does that to many women. The shy girl, always hiding in the corners at social events was now a confident, full-grown woman, eagerly sharing every detail of her birth and first days.

I sat there for hours listening to those painful conversations about labour, breastfeeding and baby care. All of the while, fearing the moment they would hand the baby over to my arms. Fearing the feelings I always get when holding such a small baby. My soul warms and my heart melts in such way I can hardly breath. My whole body aches for a baby like that. A baby of mine, I can love and care for. But usually the baby is swiftly taken away, leaving me feeling even more empty.

That day, however, the baby never made to my arms. We left shortly after, but instead of feeling relief I was feeling even greater longing. I just wanted to hold it for a few minutes, look at his tiny hands and let my soul warm up. But it was over. No baby for me. Not even for a minute.

Now I was dreading holding my friend’s baby. But it was a different kind of fear. I was afraid I couldn’t hold it together. I was afraid I would loose it in big sobs and loud tears, as soon as that baby reached my arms. Because I should be giving birth to my own baby soon. I should be holding my baby. I should have my soul warm up indefinitely.

Sitting there besides her, caressing her tiny head, touching her cute little fingers, I realised I wouldn’t loose it. All these feelings I’ve feared for so long were simply not there.  I don’t know why, maybe due to the special circumstances of the labour, fearing for the life of my friend. Or maybe because my heart is so bruised, I’ve now created a stone cover to protect it; I don’t let it melt so easily anymore. I don’t allow myself these feelings I may never get to experience.

Trauma

Finally, after many hours, they told us A. is fine. She lost a lot of blood but is now stable. She’s weak but will recover. We would be able to see her soon.

More time passed and the nurse came to take my friend’s husband and her baby to see her. I stayed in the labour room by myself, waiting. Looking around the great facilities I may never need: labour bathtub, bed and all sorts of medical instruments. My labours were usually at home, by myself, in the toilet. Yes, I do dare call it labour, after I’ve felt contractions for over 14 hours.

At the same time, I was communicating with my husband. Sending him news and arranging for him to pick up A.’s son from daycare, along with everything he needs to stay at our place for some days. Two to five days is what the nurse mentioned.

A very long while passed until they came back to pick me up. We walked down to the recovery room, the same one where I recovered from my D&E, past the same theatre I was operated on.

As soon as I saw my friend, pale, eyes welling up, somewhat still confused by the anaesthetics, I bent down and kissed her face. And I caressed her hair and looked deep into her eyes and said how happy I was to see her. “I was so afraid, it was so close” she uttered, tears rolling down her face. “How is my son, is he scared, I’m so afraid for him”, she said. “He’s perfectly fine and have even already had dinner. My husband is looking after him. We will continue looking after him until you’re back home, feeling strong”“Are you sure? It can take many days”“Don’t worry, we will take great care of him for as long as needed”, I assured her. It seemed as if a great weight was lifted off her shoulders. All she needed was reassurance about her son. “Thank you so much, I’m so glad you’re here”, she said.

I hadn’t stopped caressing her yet. I remembered too well how awful I felt after my ectopic surgery. The overwhelming feeling of gratitude for being alive, mixed in with all these questions, all this confusion about what had happened and why. I could see all the same feelings in her eyes. Trauma is trauma, and it looks so familiar. We talked a bit, and I made sure not to dismiss her worries and questions. If I have learned anything from these years of pain is to respect people’s feelings, no matter how uncomfortable they are.

Imposter

Then I went back home, so she could rest. And so I could rest. But there was a 3 year old toddler at my house, in need of attention and distraction. For the next few days he was entirely dependent on us for care and protection.

Looking after young children never scared me. I have many younger cousins and I would babysit them all the time, growing up. I’d play with them, feed them, bathe them and even taught some of them to ride bikes, roller skate, dance and much more. I always loved looking after children, and I’ve always been quite good at it, so all my aunts and uncles would come to me when they needed a break.

We started trying for a baby a few months after A.’s son was born. During his first months of life I was my old self, and I enjoyed helping her take care of him. He liked me very much. A. would even joke sometimes that she was jealous he loved me more than he loved her. I was, for a brief moment, his favourite auntie.

And then everything started to go wrong. And being around babies became more and more painful. So I stopped playing with him and started avoiding him. I would still help my friend when she needed, but I wouldn’t play with him for my own enjoyment.

As we grew more and more apart, I started to feel somewhat uncomfortable around him. He was (and is) a perfect reminder of how long I’ve been failing at trying to conceive a living child. And in his eyes, slightly afraid when looking back at me, I could see reflected the image of the woman I was becoming: broken, tired, sad, bitter. Everything I never intended to be. Everything I wanted to pretend was only temporary, but was still there, each time I looked into his eyes.

Now, he needed me, my friend needed me, and in comparison, any pain I had was insignificant.

My intention was to make him have so much fun, he wouldn’t spend much time wondering where his parents were and why it was taking so long. And so I did.

We took him to ride his bike around our street, we took him to the park, we cooked him his favourite meals and we let him watch cartoons for as long as he wanted (not too long).

We also took him for great walks in the woods behind our house. He never tried that before, exploring nature: climbing trees, walking through the steep pathways and playing in the small stream of water (all perfectly safe, I must add). He loved it. Watching my husband looking after him, holding his hand while crossing the stream through stepping stones, teaching him to climb, and at the same time, watching his fun and excitement for these activities, felt like a double sword. Sometimes it’d fill myself with the reassurance that we would be great parents, that our ideas on how to have fun as a family and teach great things to our children someday would really work. I now had some proof. But at the same time, if it never materialises, it will be so painful to miss seeing my husband become this amazing dad I know he can be.

While he was staying with us, we took him to the hospital a few times so he could see his parents and little sister. He didn’t quite understand what was going on, but I knew my friend needed to see him and be sure he was fine and happy.

During the weekend we took him to a theme park, one he loves. We went on many rides, some he had never tried before and he had so much fun. While we were there, I could see how other people looked at us and treated us, assuming we’re his parents. People were so much nicer and approachable, but I couldn’t help but feel like an imposter. No, I’m not his mother. No, I don’t know what I’m doing (as in, I don’t normally care for toddlers on daily basis).

Most of the time, taking care of him felt quite easy and natural. We didn’t have any big issues, huge tantrums or anything of the sort. My friend kept saying what a handful he is, but we handled it quite well, I think.

The worse part was sleeping. Not because of him, per se. We would put him to bed between 7.30 to 8.00 pm and he slept very well until 7.00 am the next morning, every single day. But I couldn’t stop worrying. Incessantly and obsessively worrying something bad would happen during the night, either to him or to my friend. And so I couldn’t sleep very well.

We also admittedly missed our routine. Without noticing much, we have created our own self-care routine, with exercising, diet and other activities, and it was all put on pause while he was with us.

Back to normal life

After 5 days at the hospital, A. was feeling better and ready to go back home. We packed everything up again and took her son back to her. I was tired and in need of a quiet evening.

The first days after he left, we missed him a lot. We’re just getting used to having him around all the time, starting a new routine. And now we were back in our quiet, empty house.

I was still worried about my friend’s health and started baking 3 batches of lactation cookies for her, and talking to her every day.

A couple of days ago, we finally had the conversation I was hoping for.

“How are you feeling today?”, I started.

“I’m doing fine physically, but mentally I can feel more and more what happened. I have so many questions in my head”, she started.

“It was a traumatic experience. It will take time for you to process everything. If you want to talk about it, I’m here”, I replied.

“I don’t think I’m ready yet, but I have a lot of questions. Could I have done something differently? Did the nurses and doctors do everything right? How close was I to not making it? I looked up in the internet, but according to what I found, I should be dead”

“I understand all the questions. I think it’s a good idea to talk to a doctor when you’re ready”

“Yeah, I’ll do it. But instead of being happy we’re both alive, I keep thinking what went wrong and what could be done differently”

“It’s normal to think like this. You shouldn’t force yourself to feel happy. You need to feel what you feel. Really, the worse you can do is to try and force yourself to snap out of it”, I tried to make some suggestions based on my own experiences. “Just take it easy. It was so scary and it brought so many emotions…”

“And how are you? I can only imagine how hard it was for you, taking care of our son, visiting at the hospital…”

“It’s not always easy. Some days are easier than others”

“I wish we could help you somehow. I didn’t want to ask you for help, but we had no other choice. And you really saved us. We will always be grateful for that. Especially knowing how hard it was for you”

I was really taken by surprise by her words. I wasn’t expecting it, but was so grateful for her recognition for my efforts. “Thank you. It’s not easy for me but at that moment you were in greater need and I of course wanted to help as much as I could. It’s nice to hear you have considered my feelings. I’m just glad you and your daughter are both fine. You’ve helped me so many times as well, that’s what friends are for”

“Somehow I don’t think we were able to help you much but if one day there is anything we can do for you just let us know”

I thought about leaving the conversation at that, but in light of NIAW’s #StartAsking campaign, I decided I should speak up a little more. “There’s nothing to be done but to talk to us, to listen and be there. That helps much more than you imagine”.

I hope we can both use our experiences to show more empathy towards one another, as different as our situations may seem… And strengthen our friendship even more.

Appointments and more appointments

Doctors Appointment

The past weeks I’ve had appointments with 4 doctors from 4 different countries. No wonder I’ve been feeling confused and overwhelmed…

I’ve mentioned the skype appointment with Dr. Braverman before. After that, on March 14th, I had my long-waited and hard-fought for consultation with the local RPL specialist.

Having already been through his clinic’s mandatory information meeting, I didn’t get my hopes up too high and it went pretty much as I had expected. We went through my history and he looked at the test results I already have. He then explained that since I’ve only had 3 miscarriages (the ectopic doesn’t ‘count’) he would usually ask me to try again without any medication or treatment. However, he believes there are some ‘clues’ that the cause of my losses is immune related. Therefore he can offer me to try hydroxychloroquine. He wants to start a double blind randomised placebo controlled trial on this drug and I would participate on the pre-trial (if I understood correctly, they need to have some success cases to use as argument for starting the actual trial).

He explained the scary side effects – worsening of my psoriasis and possible retinal damage, potentially causing blindness, though only in very rare cases – and advised me to take it for 2 months before trying to become pregnant again. He also requested a few more tests.

I was a bit surprised he was ready to make a diagnosis and suggest treatment right away. And I was glad he had something to offer other than ‘tender loving care’. Hydroxychloroquine has been successful in a few cases in the UK, but I worry about potential side effects harming the baby, since I’d have to continue the drug until around 20 weeks gestation. The doctor didn’t comment much on that, so I’m waiting for our follow-up appointment to ask more about it. Not to mention that the idea of possibly (even if very rare) becoming blind and still without a baby is quite scary.

But mostly I was discouraged because he was not able to tell me why he thinks this drug can help my particular case. When I see a doctor, I always have the expectation they’ll say ‘I believe this particular area/mechanism/thing is not working on you, and we’ve seen this drug help in such cases’. If he would have phrased it like that, I’d been taking the drug already. But I’m not sure whether he has a good reason to suggest me this drug and just wasn’t so clear about it, or if he’s just giving it to ‘anyone’ desperate enough to try.

A few days after that, I travelled back home (to Zika infested south-america) and saw a RI (reproductive immunologist) there. Again, we went through my history and test results and he ordered a cross-match (also known as LAD) test. This supposedly checks how my immune system reacts to the presence of my husband’s immune cells. They believe if it doesn’t react enough, the immune mechanism that should protect a new pregnancy is compromised, causing miscarriage. The treatment for this is LIT, basically a ‘vaccine’ made from my husband’s blood products (lymphocytes).

When I received the results, showing very little reaction, and the recommendation of the RI that I get 3 doses of this ‘vaccine’ prior to becoming pregnant and 4 more doses during pregnancy, I was quite excited. It felt good to finally have something wrong, some kind of answer that could explain my losses. And not only that, but something that could be fixed, with a rather simple procedure.

I was still worried, though. Besides the practical issues of either finding a clinic in Europe willing to do this treatment on me, or having to stay in my home country for at least 6 weeks, I kept thinking: but is that the only thing wrong? I mean, this RI didn’t run a lot of tests, so maybe he’s missing some more immunological underlying issues.

Moreover, I remembered from our skype consultation, Dr. Braverman mentioning he didn’t use LIT any more because he didn’t believe LAD could really tell who could benefit from it, so he prefers to use other medications. Since he didn’t elaborate more on this, I was left wondering why he doesn’t believe in LAD. I searched and found this and this (or check here for a better explanation). No need to say my hopes were crushed. This result by itself doesn’t explain anything and the suggested treatment might even be harmful.

At last, we’ve met with the doctor in Spain who will conduct our treatment, if we choose to follow Braverman’s protocol. We travelled to Barcelona last week to meet her and draw blood for all immune testing requested by Braverman (17 vials!). I was very happy about that appointment. The doctor was very kind and receptive to questions. She very humbling talked about the many patients from all around Europe she has treated under Braverman’s supervision with great success. It was very clear to me how much she trusts and admires Braverman. I thought it was very reassuring.

After all these appointments, what I can say for sure is: Reproductive Immunology is certainly not a consensual area. Braverman told us on our skype consult: ‘A lot of doctors call themselves Reproductive Immunologists, but most of them don’t understand enough of the immunological field’. At first I thought he was being a bit arrogant (though he might be entitled to it), but now I’m starting to believe he’s right, sadly.

Many weeks of doubts, uncertainties and worries later, our only decision so far is to wait for our next appointment with Dr. Braverman, when we expect to have the immune test results and his protocol suggestion. This will be on May 17th. So, at the earliest we can start trying in my June cycle, which means more waiting (sigh).

But I’ve come too far, waited too long and spent too much money to simply rush into a decision and a treatment before hearing this last advice. And I really hope it’s the last, because I’m done with all the appointments and all the mixed feelings and confusion that comes with it.

 

 

All or nothing

It’s been over a month since I last posted. I didn’t plan for such a long break. My mind has just been racing so much, I’ve been finding it hard to put my thoughts into intelligible sentences. I’ll try harder now.

These past 3+ years of trying to grow our family, I estimate I’ve met with about 10 different Ob/Gyns and REs and 4 different GPs (not including the countless doctors I’ve met with at hospital ’emergency’ consultations – usually follow-ups from miscarriages -, as those must have been close to 20).

Prior to this, my experience with doctors in this country, in over 6 years, consisted of one bad case of stomach flu and one strong cold. So, I could say I had very little familiarity with the health care system or even the local culture surrounding health care.

I had plenty of experience, though, in my own home country. I’ve had more than my fair share of illnesses and ailments throughout my childhood and teenage years, many serious enough doctors were afraid I wouldn’t make it out alive.

My first serious condition was a strong pneumonia when I was about 4 months old. Since then, my paediatrician was aware of my deficient immune system and tried all he could to avoid serious infections. I had extra doses of the normal vaccines, plasma transfusions and weekly injections. Seeing doctors, having my blood draw and taking painful penicillin injections were so routine to me as early as age 4, I didn’t realise it wasn’t so for everyone else.

Despite my doctor’s best efforts, I had almost all common childhood diseases: from chickenpox to rubella, mumps and even whooping cough, among many others – most of which I’d been vaccinated against. Each time I’d spend days or weeks in bed, mostly unconscious and burning with fever; much stronger reactions than other kids, including my siblings, had to the same diseases. I missed so many school days every year, I was legally required to fail; but being first in my class despite it all, my teachers would usually fake my attendance card so I was allowed to pass grade.

My mum struggled a lot, taking care of my sister and I, looking after my older (half-) siblings and working full-time, while my father travelled for work, up to weeks at a time. It wasn’t easy on her, but it wasn’t easy on myself either. Besides these diseases, I’d commonly fall ill with serious throat infections and bronchitis. Or, I’d get skin infections from staph or strep bacteria, which were both painful and quite disgusting looking, so not the best for a teenager’s self-esteem.

My paediatrician used to say all would go away by the time I got married. He was quite right. I got better and stronger each year, and today most people can only see a perfectly healthy young woman; they find it hard to believe my childhood stories.

Stories such as the time I was 6 years old and had a routine blood test; however, for the first time on a new lab. Upon results, the lab contacted my mum asking to rerun the tests as they believed I had leukaemia. My mum panicked, but my paediatrician took over, explaining to the lab there’s nothing to worry about, these were my ‘normal’ levels.

Or when a year after that, having been through several plasma transfusions, my doctor contacted my mum saying they’d been notified some of the blood from these lots were contaminated with HIV and I needed to get tested. We immediately set off several thousand kilometres by plane, as in those years – mid to late 80’s – HIV testing was only available on two labs around the country. When we finally met with the doctor who was taking my blood sample, he examined me and told my mum: “We’re going to do the test, but given her appearance (I was extremely skinny and ill-looking) and immune deficiency history, it’ll just be pro forma, as I’m sure she’s positive“.

It took about a week to get the results. I was only 7 then, but clearly remember this time. We’re staying at my aunt’s, and the days between that examination and the final result my mum spent locked up in the bedroom, crying, while my aunt tried to distract me. I couldn’t understand why my mum couldn’t look at me straight. Results finally came and were negative. The irresponsible doctor got quite an earful from my mum and we went back home, carrying on.

By age 15, I was regularly travelling across the country by myself to see an asthma and allergy specialist. It’s accurate to say, thus, I have plenty of experience discussing health matters with doctors, even from a young age. Being the ever curious child and teenager, I was used to asking all kinds of questions to physicians, genuinely interested in understanding my condition in particular and the human body in general. My doctors always answered me in a polite and encouraging way. I never had reasons to doubt them.

After months of unsuccessfully trying to conceive, I went to see an Ob/Gyn to attest whether I was regularly ovulating, since my cycles were getting longer and longer and I had been warned of possibly having PCOS in my teenage years, due to my polycystic-looking ovaries and very strong, irregular menses.

I went to this first consultation armed with questions and requests, given my past experience with my own health care in my home country. This doctor, however, got easily offended by my (in my head, innocent) questions and was rude from day one. I couldn’t understand what I could have been doing so wrong.

About 4 months later, in the third appointment, he told me all my blood tests were normal and suggested to do a HSG to check my tubes since it had been about a year I’d stopped birth control. I was feeling so frustrated with the slow pace of testing here, I asked him to also check my progesterone levels at 7dpo, to confirm ovulation and make sure there was no luteal phase issues. This request was received by the doctor as an unexpected threat, to which he responded by getting up from his chair and yelling at me. I was so shocked with his reaction to what I perceived as a simple question, I didn’t know what to do but cry, sobbing heavily, while he continued screaming at my face for a good 10 minutes.

After I wiped my tears and found strength to politely share I was worried about having been intermittently bleeding for over a week, since around ovulation, and that the bleeding was becoming stronger, he dismissed me and told me I worry too much and should just go home and wait for the HSG appointment in a month from then.

Unsatisfied with his treatment and knowing my body, I decided to take a pregnancy test a few days later, since the bleeding wouldn’t stop. It was positive. That was my first pregnancy and it turned out to be ectopic. Had I followed his advice and blindly waited for a month, most likely my tube would have burst and I would have undergone a much more dangerous emergency surgery.

But when I returned to his office for another scan, after my HCG result had come back at 10000 even though no pregnancy was seen in the uterus two days prior, the midwife was certain the pregnancy was ectopic. She went out to speak to the doctor, but he never even came out to see us. He didn’t offer us any words of compassion, nor did he apologise for ignoring my concerns. He let it all in the hands of the midwife. I never saw him again since that yelling episode.

I wish I could say his behaviour was an exception, but it turned out to be a cautionary tale of what I would encounter from then on. Most doctors we saw were not compassionate, dismissed all of my worries and questions and were downright rude. Maybe it’s all a big cultural misunderstanding, but my experience have been disappointing at best.

It’s only to be expected, then, that after 3 years of such treatment, I started getting used to it, stopped asking too many questions and accepted whatever was thrown my way, even when I didn’t quite understand the doctor’s logic or didn’t quite agree with it. I was tired and defeated.

My faith in the medical community and in my own gut was restored a month ago, at last.

I booked a free 10-minute Skype consultation with Dr. Braverman but didn’t get my hopes too high. I thought 10 minutes were not enough to even go through someone’s full history, so this free consultation was probably more of a publicity stunt than a real doctor’s opinion.

It turned out it was nothing like I expected. He seemed genuinely interested in our history, asking several questions and not at all rushing the consultation. I was amazed how every question he asked me, every frustration he shared with the local doctors’ actions and answers, were the exactly same ones I’ve had all these years. It was as if he was reading from my notebook of unanswered questions. But not only that, every explanation or theory he shared was based on rational thinking and logic. His approach to medicine was ultimately scientific, which is what I’ve been missing all this time. When we finished the call, I only had one thought in my head: this was the doctor I’ve been looking for all these years.

I’m not here to say he’s the right doctor for everyone and I can’t even comment on his treatment as he hasn’t treated me yet, but his attitude was exactly what I would expect from a competent doctor, one I could really trust. My husband was equally positively impressed. If this was a publicity stunt, it certainly worked on us.

Although we were so excited by this initial consultation, when we received the full fee schedule from the clinic, we had to take time to think it through. He charges extra fees throughout the pregnancy, which combined with testing fees and treatment costs abroad (Spain) can quickly add up and drain out all our savings before we get our much waited baby. It took us several weeks of talks and thinking over to come to a decision.

We finally decided to go ahead with the initial testing and diagnosis with him. This much we can afford, and I really need a complete diagnosis at this point, for my peace of mind. After getting his results and treatment recommendation, we can then decide whether to go ahead and follow his treatment plan or continue with the (much cheaper) doctors here.

We’re both tired and in need of a clear path forward. We’re ready to give our all. It’s all or nothing now.

 

Ups and downs

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These last few days have been full of ups and downs, not unusual for an infertile or recurrent miscarrier.

Down: A colleague from work, the one who forced me to tell my story because she wanted information on IVF, is visibly pregnant, probably 20+ weeks. She never told me about her pregnancy. She never said ‘I’m sorry’ for my last loss either – or any loss for that matter. Last week she found out the sex of the baby, so she brought a cake to work to celebrate. And she didn’t invite me. I’m guessing (from how far along she is) she never needed IVF after all. I finally realised she wasn’t going to say anything, so I walked up to her and said ‘Congratulations!’ with a big (half-fake) smile. She still didn’t acknowledge anything, nor did she ask me how I was doing. Too busy enjoying her pregnancy, I suppose.

Down: Another colleague opened up to me about recently finding out that the baby his wife is carrying has been diagnosed with Down syndrome. He doesn’t know about our struggles with infertility and RPL. I tried to be supportive and caring – and non-judgemental – in this difficult time for him. However, when he was sharing that he wanted to convince his wife to abort the baby (which is legal here in this circumstance) and she refused, he said something that felt like a sharp knife going into my stomach: ‘She can’t do it at this point in pregnancy (20 something weeks); it would feel to her as if she’s killing someone, like killing you or I, because she can now feel the baby’s movements. Now, the baby is its own person. It would be different if it was earlier in the pregnancy’. I froze at that moment, my thoughts going straight to ‘what about my babies? Does that mean they’re nothing? My babies don’t matter?’. I didn’t say anything, though.

Down: Due to some bureaucratic misunderstanding regarding our referral to the RPL specialist, I received a letter from the hospital in which our fertility clinic is located, saying I had voluntarily moved away from their clinic and switched to the new RPL clinic. This is incorrect, as I still plan on doing the FET on this fertility clinic (they have our embryos and it’s much closer to us). I was worried we would loose our public funding for the FET altogether, so called the hospital to clarify. After being passed around to different departments, repeating my story again and again, I talked to the secretary at our fertility clinic. She was extremely rude, saying (again) they will not support my treatment with the RPL specialist; but at least she confirmed I’m still registered as their patient and can have the FET any time I choose to. I had to made these phone calls at work, due to the opening hours, and after it I was having a mini meltdown and couldn’t stay at work, so I left early saying I wasn’t feeling well. I really think their attitude is unacceptable. Infertility and recurrent miscarriages are recognised by the government as chronic diseases. The offered treatments and clinics I’m attending are publicly run. Why should I feel like I need to beg and fight to have access to it?

Up: After some exhausting days, I really needed to relax and have some fun. Some friends from work came over and we had a girls night, just talking, eating cake and drinking coffee. It was wonderful. They are very supportive. We also vented our frustrations about work and laughed a lot. I need nights like that more often.

Up: Thursday was my husband’s birthday! We went out in the evening, after work, had a great dinner and watched ‘The Revenant’ in the cinema. It was wonderful. Food was great, movie was great and we didn’t talk about infertility. We always enjoy ourselves when we go out on a date night.

Down and Up: Friday I went to the hospital to do the Aspirin allergy test. I was really scared I was going into anaphylactic shock again, since I’ve had it twice when I was a kid, both times from Aspirin. How would you feel if you doctor offered to give you the same substance you almost died from twice before? I was freaking out. I barely slept the night before, thinking I shouldn’t have had those 2 glasses of wine during dinner (it was hubby’s birthday, though!). Before starting the test, they took my blood pressure and it was too high. They said if I don’t calm down and my blood pressure decreases, they couldn’t proceed. I wanted to do this, so I can have more painkiller and anaesthesia options. I kept thinking if I need to go through another miscarriage I want better drugs to manage the pain (I don’t react well to opioids as they make me sick, so I end up preferring the pain then throwing up all the time). And baby Aspirin is often used to treat RPL. I tried my best to control my nerves and was able to complete the test. It took about 6 hours in total. I had no reaction whatsoever. The doctor said they don’t know why. Maybe I reacted to some other substances in the pill, not the Aspirin itself, when I was younger. Or maybe I just grew out of it. I’m now allowed to take anything, but I think I’ll still be afraid for the first couple of times. If only I had done this test earlier, I wouldn’t have gone through 20 years of drug-free painful periods, muscular pains and headaches. Well, better late than never.

Up and down: Sunday we celebrated my husband’s birthday with some friends at our place. It was just an afternoon tea with hot-dogs and brownies, but it was so nice spending time with friends, talking and playing board games. I was a bit nervous about it, as I hadn’t seen my pregnant friend in over a month. I just have a hard time being around her due to her pregnancy being so close to my last pregnancy. We talk a lot on the phone and text each other, but when her huge belly is staring at my face it’s much harder for me. She’s quite nice about it most of the time, I think she understands it’s not easy for me, even though we never really talked about how it makes me feel. Her husband, on the other hand, is much less caring. He often times says or do things that are hurtful to me without noticing. This time was no different. At some point, my friend and I were sitting side by side just talking normally, when he came over and started rubbing her belly. Somehow, I never see him rubbing or kissing her belly unless she’s sitting right besides me. Then he does it all the time. I’m sure it’s not on purpose, but can’t he really see how uncomfortable it makes me? Well, my friend feels uncomfortable too, so she removes his hand and tries to gently push him away. And he starts a small fight, saying: ‘Why are you pushing me away? It’s my baby too, I can touch it whenever I feel like it.’ What else can I do in these cases but to get up and walk away? Why can’t even my closest friends, who have watched me go through all of it, understand how difficult it is, how their small actions affect me? I wish they didn’t, I wish I could touch her belly and feel excited too. But it’s impossible for me to not feel sad for what could, should, would have been.

I hope the days to come are filled with more ups than downs.

New plans, new hopes, new worries

Since the somewhat disappointing lecture by the local RPL specialist, I was left feeling this path wouldn’t lead me to the answers and results I was looking for. Of course, I’m rational enough to admit that it’s way too early to say if this doctor can help me or not, and these feelings are probably resulting from my general distrust in doctors (caused by recent repeated bad experiences). 

Wouldn’t it all be much easier if I just let go and trust that this doctor has my best interest at heart and he’ll do everything possible to help me? Yes, certainly. Unfortunately, I’ve been through enough to know I must advocate for myself; or maybe I’m just a cynic distrusting person that adds unnecessary angst to my own life. Take your pick.

After feeling miserable for some days, I decided to pursue other options. I’m going to my home country to see another reproductive immunologist (RI) for a second opinion. Yes, it’s crazy to go after a second opinion before even hearing the first opinion, but I just can’t sit on my hands, watching time pass by, hoping for the best, any longer.

Originally, our plan was to visit my family in late May. My father is turning 70 and my mom is organising a huge party. We thought of staying for a couple of weeks and seeing the RI in this time. He offers lymphocyte immune therapy (LIT), which seems to not be available here, and I was hoping I could get at least one dose during those weeks. 

I contacted the doctor before booking my flight, as I wanted to make sure we would stay there for enough time to allow tests and possibly this treatment (if at all necessary). They explained that I could do the tests and have the results in one week, however the LIT treatment usually consists of 3 doses taken 3 weeks apart. Since the “medicine” is essentially my husband’s filtered blood plasma, this meant we both would have to stay for a minimum of 7 or 8 weeks. We obviously don’t have enough vacation days for that. Again, the helpless feeling was taking over. 

I thought about it. Staying away for a couple of months started to look plausible. We would be staying at my parents’, so virtually expenses free, and we have enough savings that taking a 2 months non-paid leave at work wouldn’t be so strenuous financially. As long as we can arrange everything with our bosses in good time, it’s probably not a big issue. If that’s what it takes for us to achieve a healthy pregnancy, it’s certainly a small price, all considered.

Moreover, several weeks of stress free ‘vacation’ might even help me. Turning it around and taking this time to relax and maybe even travel a little with my husband just before we embark on the trying-for-a-baby train once more, might just be what I need. Or at least that’s what my counsellor keeps telling me.

A few days after the new clinic’s info meeting, I had a session with my therapist. Seeing how unwell I was, she again suggested I take a short leave of absence from work in the basis of stress. She’s been trying to convince me for a year now and I keep refusing it. I know how stupid it sounds that I’m literally paying her for her expert advice but refusing to follow it. 

I don’t know why I can’t let go. I tell her it’s because being off work would only be a short term relief and as soon as I would come back, the stress would come back; unless a long-term solution for my problem (a healthy pregnancy or a decision to stop trying) presents itself in the meantime, which is very unlikely in the next few months, as we won’t probably have our FET until June. She tells me, you admit it will help you now and that’s what you should focus on, how you can get better now. We will see how it goes after it when we get there. She’s right, but not convincing enough. It sounds like palliative relief and not a solution.

Another reason for my refusal is fear of failure. Or admitting failure. I already have enough feelings of failure, thanks to RPL and infertility: failing my babies, my husband, my friends and family, etc. My job is, in a way, the only aspect of my life not (completely) falling apart; the only part I can feel (or pretend) to be my old self, before all of this. It’s hard giving that up. Even though, in all honesty, it’s nothing like 3 years ago. My relationships at work are everyday more strained, my motivation is low and although my performance is still remarkably high (or so my boss keeps telling me), it has significantly decreased (or so I notice). 

Well, being ‘forced‘ to stay at my home country for 2 months for medical treatment would allow me to stay away from work for some time guilt free. I might be addressing two issues with one blow.

With this new perspective in mind, we decided it’d be OK to stay so long, but we need some time to prepare for it. So we booked a consultation and our flight to Easter week. We’ll run all the tests and it will give us enough time to compare the recommendation of this RI with the local specialist’s and make a decision, before May, if we should pursue LIT at my home country (in case the test results say we need it).

There’s, however, another source of worrying with this plan (well, more than one, considering my relationship with my parents’ and my sister being somewhat complicated and living at my parents’ for so long not an easy task). My home country, being in South America, is infested with Zika virus. I’m sure by now everyone have heard of the correlation between Zika infection and babies being born with microcephaly, encephalitis, stillborn and miscarriages. Since it’s a new discovery, there are no cures and no vaccines yet and doctors can’t even say for sure for how long after an infection it would still be dangerous to attempt pregnancy. The current advice is to wait 2 months. 

March til May is the raining season in my hometown, which means mosquito season. Right when I expect to be there. Zika is transmitted by the same mosquito that transmits Dengue (a more dangerous disease than Zika, but not especially threatening to unborn babies). When thinking about how widely spread Dengue is, and how virtually everyone I know have had it at one point or another (I’m one of the lucky few to never have gotten it), it scares the hell out of me how easy it probably is to catch Zika. However I can also turn it around and realise we never got Dengue when visiting my family, even though we never used any protection against mosquitos.

We are only staying for a week at first (Easter) and I’ll cover myself top to bottom in repellent. We are also not having a FET in less than two months after we’re back, so we believe it’s a small risk. 

In case we’re unlucky enough to catch Zika and it somehow impact our future child (many may have Zika during pregnancy and still have healthy babies), I’ll probably never forgive myself for taking this seemly unnecessary risk. But is it really fair? Aren’t we risking ourselves to getting hit by a car every time we walk on the streets or dying on a plane crash each time we fly? We can’t control these events any more than I can control the outcome of my pregnancies (with or without Zika), so I’ll bathe in mosquito repellent and hope for the best during that one week. A longer stay poses a higher risk, but we decided to discuss it with the doctor over there before making our final decision.

In case you’re wondering why would I trust this RI any more than I trust the local specialist, I’ll answer you sincerely: I don’t. And because of that, I’ve also booked a free 10 minutes Skype consultation with Dr. Braverman (considered by many the best RI in the world). I want to hear his opinion on my case and what are the opportunities for long-distance treatment. I’ve also started on my US Visa application, in case we decide to go to NY to be examined by him. 

In short, here is where we stand now: plan A is still to pursue treatment with the local specialist, since it’s the best option from a practical and financial point-of-view; plan B is to complement with other treatments in my home country, if necessary; plan C is to go after Dr. Braverman, in case the other treatments fail. 

If I seem desperate, I probably am. 

Insomnia or reality?

 

It was the end of 2012 and we were still living in Beijing, China, but with everything ready to move back to Scandinavia: work contract signed, apartment rented, air plane tickets bought and all our stuff packed up and ready to be shipped across the ocean.

We were excited to be coming back and ready to leave that two-year adventure behind and start a new one: a family. I’ve already been looking at houses and station wagons for sale and had started taking folic acid supplements, so the next logical step was to stop taking the birth control pill.

Arriving here, just before Christmas, there was so much snow everywhere it made everything a little more hectic; yet the purity and silence of fresh snow matched perfectly the idea of a new beginning.

Those first months were nothing but crazy: new jobs, looking for a house and a car, discussing loans with banks, insurances, buying furniture, unpacking… There was little time to worry about not getting pregnant, though it didn’t stop the disappointment of getting my period every month.

By April, we were settled on our new 4 bedroom house with a big backyard, furnished and decorated, ready for this family to get started, but without a pregnancy in sight. My periods were just getting longer and longer every month and already reaching 40 days. That was the time I started worrying whether I was even ovulating and decided to see a doctor for advice.

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This is how our journey to parenthood started. In November 2013 followed the first pregnancy and first loss, with such raw emotions that can only be lived once.

Today, over three years after those dreams started to materialize, I found myself in the same, yet new, situation: same house, empty ‘baby room’; same grassy backyard without flowers; same car, without a baby seat; same employer, same job; same marriage.

The future I had envisioned when dreaming of returning to Europe was another; one with a beautiful crib in the next door room to ours, with a doll house in the garden, with toddler laughter and Lego pieces all over the floor, with lazy Saturday mornings of cuddles in bed and pancakes for breakfast.

As my old friend insomnia makes herself comfortable in my bed again, I search for books to keep me company during these too early hours of the day and run into “The Book of Disquiet”, from the great writer and poet Fernando Pessoa. Considering purchasing it, I find a passage that seems to describe this moment in my life so perfectly:

[Life is] the waking insomnia of [our] dreams. 

Laying awake in bed or fulfilling my duties at work, I’m only truly waiting; anxiously counting the days and years as the insomniac counts the hours; hoping I can soon return to where I really want to be: in my dreams. Those dreams I still hold on to since 2012.

Will somebody help me fall sleep?

Doubts and choices

Monday evening, as I left the RPL clinic’s information meeting, my overall feeling was disappointment.

It started out nicely. The room was filled with over 30 other couples. The doctor presented himself and pointed out the fact he’s been treating patients suffering from recurrent miscarriage for the past 30 years.

He started by showing some common ‘myths’ we hear all the time. The first one, ‘If you just try again, next time it should be fine’, he replied to with some statistics. He said after 3 miscarriages there’s over 60% chance of another miscarriage in any subsequent pregnancy without proper treatment, while after 5 miscarriages there’s almost 80% chance. The second myth, ‘It was probably some chromosomal error with the baby’, he commented by saying his research has shown that it’s not the case with patients dealing with recurrent miscarriage. In such cases, about 90% of the babies are chromosomally normal (of course it varies with the age of the mother and other factors; this number was for young, otherwise healthy women).

At this point I was feeling quite excited and hopeful. I thought, finally a doctor who’s willing to investigate and treat me.

During the rest of his presentation, the doctor explained some of the main causes of recurrent miscarriages and the treatments they offer. He also showed a graph outlining the success rate of his treatments, which seemed to vary significantly with the number of miscarriages the woman had prior to starting treatment. Women with 3 previous losses had up to 75% success in 5 years’ time, while women with 6 had about 60% (bear in mind that I’m writing these numbers from memory, so they might not be exact).

Throughout his presentation there were a few things that bothered me. When talking about immunological causes to miscarriages, he mentioned natural killer (NK) cells and their impact in the developing embryo, however said it wasn’t possible to actually measure these cells and instead, they look for other indications. If such ‘indications’ are present, he can offer treatment. Many other doctors offer a NK assay, so I don’t understand why he’d say it can’t be measured (I guess he doesn’t believe in the current methods).

Another thing was, he never mentioned alloimmunity as possible cause, nor did he mention lymphocyte immunization therapy (LIT) as possible treatment. He also only touched upon testing for lupus anticoagulant antibodies (which I have already been tested for, several times), as opposed to the complete assay of antiphospholipid antibodies I was hoping for.

These observations, among other smaller ones, were a bit discouraging, but at this point I was still feeling quite hopeful. Until, after listing the different treatment options (including IVIg, Hydroxychloroquine, prednisone, heparin) and explaining that each treatment protocol is personal, based on the patient’s test results and history, he presented a few protocol guidelines.

The first one was: history of 3 miscarriages, all blood tests normal. Treatment offered in this case is tender loving care. In other words, nothing. That pushed me over the edge. Four miscarriages entitles one to Hydroxychloroquine and five, to IVIg; but three is just try again.

How could he say that after opening up with the myth ‘If you just try again, next time it should (NOT) be fine’? I don’t get it. Not to mention that tender loving care should be offered to everyone, despite previous losses or not. And when I hear doctors suggest tender loving care as treatment for recurrent miscarriage it makes me think they believe my stress and anxiety caused my miscarriages (instead of the other way around, the losses causing me stress). And I really don’t need the extra guilt that comes from such thoughts.

After the doctor’s presentation, a nurse explained the practical details and showed us how to fill in all the forms. She also emphasized the importance of emotional support, stating that over 60% of all RPL patients are highly stressed and up to 9% are moderately or severally depressed. Included in the forms we need to send back to them are assessments of our stress and depression levels, for both partners. This thoughtfulness was refreshing, as I often felt the psychological impact of our losses and infertility was neglected by the medical staff. How they intend on dealing with the stress affected patients, however, remains to be seen.

The nurse explained the expected timeline as well. The initial consultation will happen in the next 2 months, when the patient’s history is discussed and blood is drawn for testing. About 6 weeks later patients are called back in to go through the results and chosen treatment protocol. Only after that we’re cleared to try again (she emphasized several times that we should avoid pregnancy until then).

The meeting ended with a very emotional account from a previous patient of her experience. She went through 7 losses before giving birth to her daughter. Her story was so touching, it left most of the women present in tears.

When the meeting was over, I had some practical questions to the nurse and during our short conversation she confirmed that I’ll probably only get the initial appointment in the beginning of March, so our FET isn’t likely to happen before May.

Overall it was a very good meeting. All the staff seemed very caring and there are many options of treatments and testing. Why I left with such overwhelming disappointment feeling, I can’t explain. I don’t understand it myself. But the truth is ever since that meeting I’ve been into a horrible funk.

Up until Monday I’ve been feeling a lot more like my old self, thinking optimistically, acting more socially and so on. I thought I was finally learning how to cope with all this.

Since the meeting I’ve gone back into misery mode: crying everyday (several times a day, including at work, hiding in the bathroom), wanting to hide from everyone, not able to concentrate on my job, needing over an hour of self convincing every morning just to get out of bed and face the world, etc. And I don’t really know how or why I got here.

My only guess is fear. Fear that after all the tests and all the waiting I’ll be told to try again without any treatment. And I’m very familiar with the result of just trying again.

I think I might be overwhelmed with doubts: whether I should trust this doctor, whether I’m wasting time (if I’m supposed to just try again then I might as well do it next month), whether I should look for a more ‘aggressive’ RI (like Braverman), whether I should make more lifestyle changes (such as going gluten-free)… The list goes on and on.

The positive from this is: I have choices. There are many options I can pursue if it doesn’t go well with this specialist. I just need to stay strong until then and keep going. Which is easier said than done, right now…

 

Running off the wait

I’m back. Back home, back to work, back to our baby pursuit. 

I missed home. Missed my bed and the silent evenings – no honking or noise from cars. I didn’t miss work much. I can’t stop thinking about looking for another job. Sometimes I even flirt with the idea of stop working for a while altogether. In the meantime, I’m trying to not get so stressed about it. 

My bronchitis is a bit better, but not completely gone yet. I saw an allergist this week. I already had this appointment booked before going on vacation, so it’s not related to my latest issues. I was supposed to get tested to find out exactly which kinds of NSAIDs I’m allergic to, if only aspirin is a problem or other drugs as well, such as ibuprofen, which I have avoided all my life.

This was a new doctor, I’ve never met him before. I was quite nervous prior to the consultation, I guess due to some sort of doctor anxiety I’ve developed latetly after so many bad experiences with different REs and ObGyns. However I was very positively surprised. He was so nice and upbeat and most importantly, didn’t mind my questions. Our losses came up during the initial talk and he was quite understanding.

I ended up not having the tests done, though. He said it would be too dangerous, potentially life-threatening to carry them out without making sure my asthma is under control first. Well, as far as I know, it’s been under control for over 15 years. He’s not convinced. I’ve then been given the task to monitor my lung capacity by measuring and registering my peak flow 4 times a day in an asthma journal. The catch being, I need to go out and run everyday, attempting to trigger my asthma.

I naively expect doctors to heal us from our ailments, but apparently they can recommend us to get ourselves sick too. Doesn’t it sound fun, after all, running in icy weather every evening, trying as hard as I can to provoke an asthma attack so the doctor can know how bad it is? I’m an engineer, I can value data and analysis as much as the next scientist, but hoped doctors would be more careful with our health. 

On the plus side, I’ve been thinking of starting running again, so it’s a nice motivation (however I originally planned on running without triggering my asthma). I’ve put on quite a bit of weight since the last miscarriage. Basically, I stopped caring about what I was eating and have comforted some of my pain with lots of chocolate. The result is not surprising. 

I always stop exercising and switch to only walking when I’m trying to conceive or pregnant. This time, however, I think I’m on a long forced break, so I have time to get back in shape before starting treatment again. I hope to know more tomorrow.

After our RE refused to refer us to the RPL specialist, our last resort was our GP. I saw her about a couple of months ago and asked for the referral. She agreed, but didn’t follow the required procedure and attach all the test results necessary. It took us over a month, calling different doctors in different hospitals, to collect everything that was requested and send it to the specialist clinic. Stressful work that could’ve been avoided if only my GP would do her part. 

The good news is we managed to get it done just days before Christmas break, which means we qualified for starting the process now, in January, as opposed to in 3 or 4 months from now.

The first step is attending a mandatory information meeting at the clinic. This will happen tomorrow evening. They will explain us (and all other couples attending) what treatments they offer, which tests they run, etc. I also hope to get a better idea of the timeline. So far, they’ve only communicated that we can’t get an appointment with the doctor if we don’t attend this info meeting and that the consultation will be booked sometime within a couple of months after the meeting (so, from tomorrow).

I was quite frustrated when first hearing of this. I was hoping to have our first FET (frozen embryo transfer) in February or latest March. Now, I’m guessing it won’t happen before May, considering the first appointment is only in 2 months, which will be followed by testing, waiting for results, starting treatment (which often needs to take place up to 6 weeks before conceiving), until finally getting the OK to do the FET. 

I had moments when I wanted to give up on the doctors here and just try Barverman or some other RI abroad. Our pragmatism, however, is telling us to give it a chance. Having treatment locally (instead of abroad) is much more practical, and it being publicly funded (through our taxes), it’s basically ‘free’. We can always change our minds and try another RI later. For now, we’re going to stick with this specialist and see what they have to say tomorrow. With a bit of luck, there aren’t many couples awaiting treatment and we get an appointment in only a few weeks.

Until then, I’ll try to control my impatience by running (and hopefully triggering my asthma) and improving my diet.