WTF appointment

We had our WTF appointment on Friday at our New RPL Clinic (a recap of my diagnosis is here). Although it took us a 7 hour round trip journey up north it was worth it.

We didn’t wait to be seen. We were given 45 minutes of solid consultation time. We were listened to and encouraged to ask questions. We learned a lot.

Although we left there without any concrete answers we both felt remarkably reassured. He helped us to see that the treatment for a highly receptive (but not selective womb) can’t save every little embryo. We knew that, but sometimes it’s just nice to hear it.

He encourages us to keep trying, wants us to carry on with the progesterone in the 2WW for a few more months. Then have another biopsy as it has proven to be the most effective treatment in resetting the stem cells in the womb that will support an embryo. The progesterone and the biopsy both promote the healing process called decidualization which encourages implantation and brings the womb lining in synch with embryo development. All the things that seem to be going wrong for me.

He also explained a thick lining doesn’t always equal a good lining. That even a thick lining can still send out mixed signals, allowing a good embryo to be unsupported. So I can continue to improve the thickness but this won’t solve all my problems.

He relaxed my concerns about age when I touched on egg donation, saying it will be there as an option whenever I want it, whether I’m 37 or 47 (as long as I’m still menstruating) and so why not give myself the best chances of conception with my own eggs for now.

He cautioned us on the treatment proposed by our other doctors, saying that timing is the most important factor to consider. Blood thinning and reducing NK cells are certainly beneficial for me, but only at the right time in development of an embryo. Too much of these things too early could hinder early development, making miscarriage a likely outcome. The right amount of NK cells is critical to embryo development. Too few can cause problems. Just as blood thinning causes an influx of oxygen to the embryo, too much oxygen too early can cause damage.

So much to consider. But his is a science makes sense to us. It has explained so much about what keeps happening. The fact that these people are pioneering the research from a teaching university is encouraging to me. He has the studies and evidence to back up his argument.

He admitted they are still learning so much about this aspect of RPL and that they are in no way there yet with the science. It pains me to think that in five or ten years they may have a solution to this but in the meantime we have to simply keep trying. In the meantime these treatments might help but they are not a cure. Knowing they are working hard on finding answers is encouraging.

And now we wait. We are deep in the middle of the 2WW. I don’t have a lot of hope for this cycle, I feel a sense of foreboding that 2014 is going to become a lot more complicated. But I’ll try to ignore that for now. Instead I will think about 2014 bringing a new energy, new direction, new hope.

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Silver lining & moving forward

The other day I went in for what was meant to be my 7 week scan. They already knew I had lost this pregnancy but wanted to be sure everything has come out cleanly. It was emotional. The last time I was on that table we were told our 10w sweet pea’s heart stopped beating. I hate that place.

The good news out of a bad situation is that there’s nothing left inside. My womb was clean and tidy. And the bonus was finding out is my lining on CD12 after a miscarriage was 9mm. I don’t think I have ever had 9mm ever, or at least not while we’ve been aware of my lining being pretty thin. During our 5th pregnancy in the summer it was consistently around 7mm. Not ideal.

I never got the chance to get my lining checked in this last pregnancy but I’ve been on a mission to improve my lining regardless. Pomegranate juice, protein, acupuncture, Chinese herbs, and oh yeah, this cycle I started on viagra suppositories. I had only been on them a few days when I had the scan but something’s obviously working. Now’s the time to act on it.

Or is it? I can’t help but feel somewhat reckless trying again so soon after loss. Is it really a good idea? Am I trying to forget too quickly? Have I allowed enough time to heal? Will this have a backlash later? Am I dishonouring the loss by moving on too quickly? Am I in denial that this might never happen?

I don’t know where the guilt and hesitation is coming from. Maybe it’s my TCM who wants us to take a three month break. She wants us to build the body back up again. I do recognise the benefit of waiting on the body. I see how it can rebuild strength and stabilise hormones. I may be kidding myself but I don’t see the proof that my body is depleted from this loss. Previous ones? Definitely. But this time I feel good physically. My BBT chart is the most consistent and stable it’s been since I started charting years ago. My lining is good. I’ve sustained the preconception plan for months. And I am feeling better mentally than I have in a long long time. Although I am tired of all of this, I feel … strong.

We are definitely running the risk of repeating a pattern though, I see that. Our first four losses were literally back to back, I think it was our way of pushing past the pain. Just keep trying again and one will stick. It has to. I’m seeing some of that motivation in myself again now, but things are different. Back then I was confident we’d get there eventually, and as our positivity and hope gradually faded with loss after loss, devastation took its toll. That is when we took our much needed breaks.

Now, I have absolutely no idea what to expect. We could go through another six losses and still come out empty handed. I recognise that now and am gradually coming to accept it. So although I may be motivated by desperation, truthfully there’s a little bit of “what do I have to lose?” going on in there as well.

Wait or try again? There are benefits and disadvantages to both.

After some thorough discussion we decided to give this a chance, we committed to trying this cycle. I am still on the supplements and diet, the Clexane, the steroids, the Intralipids, the Valium. I’ve got follow up appointments with two clinics the coming weeks.

We both fully acknowledge this may very well lead to disappointment in more ways than one, but at least we feel like things are moving forward. I feel I need to act while motivations are up because who knows when I’ll feel this good again. So much of recurrent loss is about finding balance in the continuous cycle of highs and lows. Finding the strength to pick ourselves up again. Recovering when down, moving forward when up. Strike while the iron is hot I guess. I’m willing to accept the consequences.

Broke but not broken

I should be at a wedding right now but instead I’m in my pyjamas.

Before I get into that I first want to thank you everyone for your incredible words of support, kindness, compassion, empathy and love over the past few weeks. I can’t tell you how much reading your comments and tweets has helped me get through this incredibly dark time. I feel lighter, stronger every time I read them. This community has become my family, and I am so so thankful.

Such extreme emotions this past week. At home I’m so low – sobbing, throwing things, dry heaving, fits of sleep-crying. At work I fake being up – performing, looking energetic, pretending things are great. No one knows I’m bleeding, cramping, passing what was meant to be our baby.

As soon as I leave the office the tears begin to flow. But while I sat at my clinic hooked up to an Intralipids drip this morning, I realised as sad as I am right now, I’m not ready to give up this fight. I am feeling more determined than ever to carry on.

I don’t want a break. Crazy as it sounds, I want to keep going right now. Can grief and hope coexist? I want to think so. I promise myself to allow the grief to continue to release itself but if I crave hope then I will embrace it too.

I want this to work but it won’t work unless we try. So I’m getting back on the treatment plan, forking out the exorbitant funds in hopes we get to one day live the dream. In hopes of catching that one good egg. All we need is one. Just one, that’s all we ask. And ok maybe a cooperative womb too. But that’s it. Consider it my Christmas list.

Soon a new plan will be implemented. Don’t know what it is yet but at least we thinking about it.

I don’t know what has brought on this new determination, this fight. Maybe it’s desperation. Maybe you caught me in a good moment. Maybe it’s all the supportive comments from you lovelies, maybe it was the three therapy sessions I attended this week, or the acupuncture, floatation, who knows. Maybe it was that this one was so young, so new, that I’m able to bounce back a bit quicker this time. Maybe it’s the gravity of the situation, making me realise it’s all or nothing now. Maybe all of the above. But one thing is for sure: this isn’t over yet.

And although I should be at a friends’ wedding right now, I knew there was no way to face it. I couldn’t face celebration, the sweet pea thief, the carefree guests having fun, the inquisitive looks from friends.

Obligation. I’m am so through with it.

Instead the pjs are on, the fire is roaring and the kitty, tea and fluffy blankets await. Fuck the housework, the dishes, the laundry, the obligation. I do not care.

But I do care that there’s been a lot of sadness and pain out there in cyberspace in recent days and it breaks my heart. So I am sending love and warmth to all of you right now, you the glittering stars in my night sky xx

6 is no longer my lucky number

No longer positive. 5 weeks and 3 days. Our sixth pregnancy is over.

I knew from the very moment I saw that late weak positive there was no hope for the little one. No hope for me. Doomed from the start.

Infertility has played yet another cruel joke on me, spurring me on with progressively stronger positives and symptoms before taking it all away. Allowing my telltale sign–the beautiful buzzing abdominal hum I get each time– to rage, filling me with hope and promise and love. Then to stop it all in an instance. There aren’t many experiences quite as deflating as watching BFPs progressively fade to nothingness.

And now I get to wait for the full sensory experience of my tormented cramping womb screaming out in anger as the sweet pea begins to slip away from inside me. How long I have to wait for that I have no idea.

I have been through this so many times but I still, somehow, relentlessly add up all the things I have done to potentially cause this loss. Someone has got to take the blame. It has got to be me.

And now, cruelly, I am beginning to grasp that I will never ever have a child.

I am a fool for ever thinking this might work one day. Shit eggs + shit womb = no hope in hell. There’s no point in proceeding with egg donation if I can’t nurture a baby in the wasteland that is my womb. And there’s no point in surrogacy if I can’t produce a single decent egg for someone else to carry for me. I will likely never bear a child or contribute to the making of one. I can only contribute to death and loss.

This is me not coping. This is me one inch away from burning down my house, getting on the first flight to Nepal alone with nothing more than my passport, or binge drinking myself into a coma. I’m not sure which one.

As I commuted home last night, conscious of impending trauma, after a week at my new job where I have to be disgustingly ambitious, motivated and keen, no one gave a shit. Why should they. They don’t know my story. I wanted to shout at them all “I AM LOSING MY SIXTH PREGNANCY, BE NICE TO ME!!” but I didn’t. Instead I allowed them to push me and shove me and step on me as they do everyday on my journey home. Instead I listened to my colleagues talk about how drunk they got at a fancy dress party when I was was busy sobbing myself to sleep. My story does not matter to them or to anyone. It only matters to me.

Nothing else matters anymore besides this story. I have no feelings for anything or anyone. I feel empty of everything but hate. I have never felt more alone in all my life. I can’t relate to anyone.

Regret, guilt, rage. I brought this on myself. If we had only started earlier, if we had only not moved across the world at a time when people start having families, if only we had not put ourselves, our ambitions first. We wouldn’t be in this situation. Running out of time, out of options, out of money. It is my fault and I have to face the consequences for the selfish naive decisions of my foolish younger years. Nothing will make me feel differently about these choices. I deserve this punishment.

Today the only thing getting me through my day is the idea of heavily self-medicating as I cry myself to sleep. Dosing up enough in hopes that I sleep through the miscarriage. How I tackle tomorrow I have no idea. Oh what great things I have to look forward to.

One step at a time

It’s been a busy couple of weeks and I have been in a bit of a funk for most of it. I started writing several posts but never published them. I’m just not feeling it, I feel like I have nothing to contribute. I feel like I’m all doom and gloom these days and trying to be positive is just not working. So rather than bore all of you with my mundane drivel I’ve been hanging low.

I have been reading loads of great blogs but I haven’t even really had the opportunity to comment on them, which I would like to do. So I’m going to try to make some time to do that tomorrow. I also drastically need to update my blogroll because I think I am following in the region of 200+ blogs at the moment and they all deserve recognition. I promise to do that soon.

On the upside I had my last day at my old job the other day. I am finally free of the Sweet Pea Thief. And it feels damn good. I immediately felt the huge weight lifted off my shoulders. It could not have come soon enough. The constant drooling over her by others nearly did my head in. I literally sat at my desk with my headphones on max so I didn’t have to hear the crap they were spewing over her. I even managed to skirt my leaving drinks, and saying goodbye to her and the rest of my colleagues because thankfully my last day was spent entirely in meetings and one of my particularly needy clients wanted a handover meeting as the last thing I did that day, which meant I was nowhere near the office on my last day. Couldn’t have worked out better if I had planned it.

I had one day off in between jobs which I spent getting a massage, going to the spa and having lunch with a friend and her brand new puppy who is pretty freaking cute right?

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I know, she’s crazy cute. It was a pretty great day. I felt rested and ready for the new job the next day.

And so far the new job is pretty good. Despite a few very stressful days last week when I was kind of working for them while also working for the other place (naughty I know), for the most part it’s going well. It’s always a scary transition isn’t it, but the people and environment are nice and I am busy (in a good way) right away. I have had plenty of “what am I doing” moments but I guess these are to be expected when going through this kind of transition. Being anonymous feels great. No one there knows my story except for a super good friend of mine who started working there this week too. She happens to be one of the most supportive people in real life right now. And I even like my view on my commute home.

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Not bad right? So everything seems somewhat positive, I am feeling good about that side of life.

I had my second LIT treatment yesterday. This one was far more painful than the first and my skin bubbled up in hives immediately. This apparently means it’s working. I was far too annoyed to listen to that because I was too busy watching the dumbass nurse eject at least £200 worth of the Hubs white blood cells onto her lap when it was meant for my arm. Stupid stupid fool. Today I’m bandaged up and sore and glad it’s over. I won’t need another one for 6 months or so.

In the meantime, this cycle was pretty much a bust. I felt like it was a bust from the very start. Just wasn’t feeling it. I tested on 9dpo and 11dpo and both were white as snow. So I came off the progesterone support so AF could make her appearance. I’ve been feeling pretty crampy and emotional and was just riding it out for AF. I was actually OK at processing the disappointment this month. On one hand I felt slightly relieved because next cycle I would officially qualify for maternity pay should I be lucky enough to fall pregnant again, but on the other hand it was yet another sad result. I had a good cry that evening and felt a bit out of sorts but was already looking ahead at what I would do differently for next cycle.

Viagra suppositories. Yep, my womb lining needs all the help it can get and a few of those puppies can do a girl’s lining wonders. I was poised on “click to buy” online when I decided to do one more test this morning for the hell of it, purely because Viagra is expensive and I don’t want to be out of pocket for something I might not need for a while. Anyway, I was confused as to why AF is still nowhere to be seen when my cramps have been pretty full fledged for 5 days now. AF is only one day late but this is not unusual, especially after last cycle’s trauma.

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Today is 15dpo. Sorry for the shit pic but can you see a second line? Because I can barely see a second line. In fact, I totally missed this second line. First thing this morning after I peed on this stick and saw within thirty seconds that it was stark white, I went back to bed. It was only a few hours later when I was having a pee when I glanced over at it and saw a super faint not even really there second line. Convinced this was an evaporation line, I quickly sought the advice of Doctor Google who says that an evaporation line is a different colour to the test line. This second line is pink. Pink like the test line.

Commence freak out. I had been really successful at ignoring any symptoms and not allowing any symptom spotting to occur during the 2WW this cycle. That is, until my telltale symptom kicked in. The raging super quick pulse I get in my abdomen. This has only ever meant one thing. And when the pulsating hum hadn’t stopped this morning I ran out to buy a digital test expecting it to be negative. Instead I got this.

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I’m sad to admit it but we didn’t even smile for each other. There were no hugs or high fives or elated kisses. Instead we muttered a few “oh dears” and sat in silent shock at the result sitting before us. What the hell do we do now.

A faint positive at 15dpo is considered late implantation. Consistently, the last five pregnancies have all been late implanters. All five pregnancies ended in tears. This has been a critical part of my diagnosis with the unfortunately termed condition known as “super fertility.” I know all too well what a faint double line means at this late stage. I have been off progesterone for four days now so who knows what havoc this has caused for my lining or for the poor little embie trying to make a home.

I could list all the things that I have done wrong in these two weeks. For someone who is acutely aware of what to do and not to do in the 2WW I have been pretty lame at it this cycle. My gloom got the better of me. Because I expected things to fail this cycle I lived like they had. I could have stayed on the progesterone, and messed up my cycle for a few more days but provide the support the embie needs. I could have not gone to the spa or spent all day getting hot, then cold, then hot, then cold. I could have eaten better or slept when I needed it or gone on the steroids I’ve been prescribed but been too reluctant to go on. But there is nothing I can do about any of that now.

But I guess on the flipside there are a lot of things we have done differently this time around. Since our last loss I’ve been diagnosed with a clotting disorder, immune issues and a defective womb. And we are / will be actively treating all these things. Aspirin, progesterone, LIT, intralipids, clexane, prednisone, chinese herbs, acupuncture. We can only hope that one / all of these treatments might tip the scales this time.

I am angry that a moment that should be full of happiness and celebration was replaced with impending doom, fear and raw panic. How can I stop feeling this way? How can I turn this around? How does one do that exactly?

Will history repeat itself? I don’t know. There is nothing I can do to change the outcome of this. All I can do is try to look forward. Try to be hopeful. Try to take one step a time. The phrase has never been more poignant in all my life.

First LIT treatment

Well we went for it. Yesterday I had £1200 of the Hubs white blood cells pumped into my forearms. The first of a few to come over the next few months.

Despite the controversy we opted in.

In the UK Lymphocyte Immunisation Therapy, otherwise known as paternal white blood cell immunisation, doesn’t carry the same dark cloud as it does in the US. According to our immunologist it carries even less risk when using the husband’s blood as opposed to an anonymous donor. Blood products are blood products and they always pose a risk but I’m told this process is handled delicately and efficiently to ensure the highest quality.

LIT is used for a few reasons but in my case it was suggested when I had a shockingly low Leukocyte Antibody Detection, a test that determines if I produce enough antibodies to protect an embryo from rejection and stimulate growth of the placenta. As the Hubs puts it, I’m allergic to him, or not allergic to him enough.

The treatment should result in the formation of blocking antibodies in my body, allowing the protection of an embryo in the womb.

My concerns were all related to how this would affect my immune system in the long run, rather than the risks involved with introducing another’s blood product into my body. I know my husband is healthy. What I don’t know is how the introduction of his white blood cells impacts my system overall. Our immunologist assures me that I won’t be on it long term, and that we have another session coming up in a few weeks followed by another one should we be lucky enough to get another chance at conceiving again. And that it won’t damage or cause issues with my immune system.

The procedure itself was interesting. The Hubs had to be screened for HIV, Hep B and C and other infectious diseases two days before the procedure. Even though he’s been screened for these before, he had to be tested immediately before the procedure to minimise any risk to me. They say that really I’m at a risk of all of these things if he was carrying them anyway since I tend to have sex with him, but heck why take any chances. Good news is he’s clean.

Two days later we arrived at the immunologist’s office at 8am where they withdrew half a pint of blood from the Hubs using what looked like a chopstick instead of a needle. His grimace said it all. Looks like we’re both taking one for Team Sweet Pea.

We are told to go to the pharmacy, buy a tube of topical anaesthetic and put the whole thing on both undersides of my forearms at least an hour before the procedure. Wrap then in cling film and come back at 3pm. Seems rather unclinical but we do as we’re told.

We clumsily eject the contents of the tube onto my arms while perched in the middle of a busy Pret a Manger smiling at all the inquisitive, awkward glances. Wrap my arms in cling film which attracted a whole other set of glances and off we went back to the office. By then, they will have sent the blood to a specialist lab, where it was washed, treated and white blood cells extracted. The white blood cells fill a syringe that will be injected under my skin on the underside of both my forearms.

As they prepare my forearms, I ask, what can I expect, as everything I’ve read indicates that it’s excruciating. They tell me like it’s painful, like being stung by a wasp 15 times in each arm. Hmm, compared to an HSG I can handle that. I have a high tolerance for pain, especially when I know we may potentially gain from it. What will happen, I ask. They tell me I will get hot, flushed and probably will swell up on the arms. It will become itchy, scratchy, sore and might spread into a rash but after a few days it will cool down. What are the immediate risks, I ask again. Anaphylaxis, fainting, but more than likely I’ll just get a little allergic, feel stuffed up, swell up a little and have some irritation. Ok let’s do this.

Good news is the topical anaesthetic worked in some areas. The bad news is it didn’t work everywhere. Thirty wasp stings is an understatement. It hurt like a motherfucker. I watched as the skin bubbled and bruised as a little bit of liquid filled each hole. I was cooed and encouraged by the lovely nurses, reassured by the Hubs and it was over within a few minutes. I didn’t scream at the top of my lungs like the last lady. I didn’t faint like the woman last week. I just held the Hubs hand in such a way I may have cut off all circulation, judging by the way he shook it afterwards. But it’s done. And I have a nasty rash on my arms to prove it.

I’ve got to say though that’s it’s nice for once to have a procedure that abuses another part of my body, instead of my poor old miserable uterus. She thanks me for that.

Today all I feel is sore, hot and a bit unwell. It feels irritated and sore and itchy. I took a few antihistamines to stop the stuffiness which worked. Now we go back within 2 – 3 weeks for the next session. Apparently I’ll be sensitised to that one, and it will hurt less. Then we go back in early pregnancy if we are lucky enough to get that far.

Either way, I’m ready if this gets Team Sweet Pea closer to the prize. Despite the risks we are throwing everything at this. I feel like it’s where we are right now. That might change in the future but today it’s full steam ahead.

Immunology schmimmunology

We’ve been to see our reproductive immunologist to fully discuss our test results. From an immunological perspective it turns out there are a few more issues than we initially thought.

Here are the bullet points for his diagnosis :

• Raised NK cells in general blood stream
• Raised NK cells in the womb lining
• Leukocyte Antibody Detection panel too low

Here’s what he’s suggesting as treatment :

• 25mg Prednisolone daily from CD7 to subdue the NK cells
• 40 mg Clexane daily from CD7 to encourage the right environment for implantation
• Lymphocyte immunisation therapy LIT (an injection of the Hubs white blood cells under my skin) for my womb to produce antibodies to protect the embryo from rejection and stimulate growth of the placenta. 2x injections 3 weeks apart starting on 21 October, with top up shots every six moths afterwards
• Intralipid infusion (a soy & egg yolk based drip that’s intravenously injected into my bloodstream) once a month, to subdue the NK cells and to stimulate the immune system to remove danger signals that can lead to pregnancy loss

Any of you out there doing this? I’m feeling slightly daunted. Feels like a lot of weird shit is about to be thrust into my body. Except for the LIT. I weirdly find the concept of injecting his blood into mine kind of sweet. Like we are bound by some invisible commonality. Sharing blood is as fundamental as it gets right? And baby makes three? We’ll see…

We didn’t even tell the RI about the AMH situation. I don’t think I could’ve handled much more on that particular afternoon. But also the Hubs is so dismissive of it. I’m trying to put my AMH out of my head for a little while as I wrap my head around the rest. But it’s the dark shadow in the corner that doesn’t go away. For now it can stay there until I’m ready to deal.

We do what we gotta do. Bring on the moonface, the belly bruises, the allergic reactions, the hours spent in a doctors office on an intravenous drip. I’ll do all this like an automaton and then face that bitch AMH. We know how many thousands of other ladies are doing this and so much more everyday if it means the get to have their sweet pea at long last.

Bring it. I’m ready.