You hear that rattling? That’s just me!

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Hope everyone is ok and enjoying Christmas as best they can.

Not much to report here, just had to share the comedy of my new old lady-style drug dispenser!! My husband kindly bought this for me as I’m on so many pills now that it was becoming difficult to keep track of them. I carry this round with me everywhere now – just in case we want to go somewhere and I don’t have my pills with me. Can’t have this TTC malarkey interfering with my social life too much!

I’m now up to three metformin tablets a day and I’m definitely feeling it. I’m tired pretty much all of the time and I feel sick almost all day too, but I’m hoping this will subside once I get used to the dose. This is the maximum dose which I’ll take now, so once I get used to this I’m all set.

Next Humira injection is on 4th Jan, so just keep plodding on till then.

X

First Humira injection done…

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Today I had my first injection of Humira. This is phase 1 of my treatment from the specialist – phase 2 is when we can actually start trying for a baby again, so this is kind of the prep which we have to do before then.

I’m taking the Humira to hopefully bring down my TNF levels. They’re at 33 now and need to be under 31 for us to start trying, so I have one injection today, then one again in two weeks time, then two weeks after that I have another blood test taken and hopefully they’ll have dropped to under 31. If it hasn’t dropped, I need to repeat the process again, two more injections, and then we can try after that, regardless of what the levels are.

That’s the factual bit out of the way, here’s the reality of how it all actually went‚Ķ.

The drugs arrived at my office on Friday, in a specially designed cool box, all very James Bond!! I was told that they’d be fine whilst I was at work, but I should put them straight in the fridge when I got home, which I did. We had a Christmas party last night which i’d been looking forward to for ages, so I decided to enjoy that night, then have the injection today, in case I reacted badly to it or just felt poorly after having it. We enjoyed the party (and it was hangover-free for me, as I can’t drink on the metformin – result!) , then spent today out and about and came home around 5pm.

I have been pretty¬†nervous about having this injection. I don’t mind needles at all, so I’m not scared of that bit, but I always worry about how I’m going to react to new drugs. I had an anaphylactic reaction to a routine drug for a UTI a few years ago and wound up in hospital close to death, which was pretty horrific as you can imagine, so since then I’ve always been more nervous about drugs than I used to be. There are a lot of possible side effects with this drug (great) but most of them are relevant if you have to take it over a whole lifetime, as people who have rheumatoid arthritis, lupus, Crohn’s disease etc may do, so the doc reassured me that i’d be ok with the very small number of doses which i’d have to have. But still, it’s worried me.

I was planning to give myself the injection, as I thought it would be pretty upsetting for my husband to have to inject me himself, but when it came to it I decided that it would probably be best if he did it. If anyone reading this has ever given themselves¬†a bikini wax, you’ll know that feeling when you put on the wax strip, press it down, then have that horrible moment when you realise you have to pull the strip off, knowing its going to hurt, so you stay there as long as possible until you realise that you just have to pull the strip and take the pain!! I figured that i’d probably be like that once i’d put the needle in, and wouldn’t want to press the plunger, so my poor husband was nominated.

The midwife at the clinic had advised me to watch some YouTube tutorials on how to administer the injection (honestly, where the heck would we be without the internet these days?!) so I did. And people who have to take this drug regularly said its better if you take it out of the fridge a little while before you take it, so its not as cold when you inject it, so I did that. They also recommended numbing the area of your tummy where you inject it with some ice first, so it doesn’t hurt as much, so I did that too. I cleaned the area with the little alcohol wipe and we were good to go.

Both pretty scared, I grabbed a bit of tummy fat and my husband popped the needle in. Thankfully although it was long, it was really thin, so didn’t hurt at all. Never thought i’d be so grateful for my tummy fat, will definitely eat more over Christmas if it makes injections less painful!! Then when he started the plunger it was pretty sore, but only lasted a few seconds and we were done. Phew!! My husband felt all queasy afterwards and had to sit down – poor thing!

Then came the scary part. I sat down and tried to relax, but got worried if my head hurt a tiny bit, or if I felt a tiny bit sick, or my chest felt a bit sore. It was a horrible 30mins or so, analysing every single feeling, movement and twinge in my body, scared in case something drastic suddenly happened. Not nice. I’d decided beforehand that id reward myself with a pizza (gluten free sadly as I’m coeliac, but hey, who doesn’t like a pizza?) so my lovely husband put one in the oven and I felt pretty good after i’d eaten it.

So now here I am, pyjamas on, chilling out, feeling ok for now. I’m still nervous in case I suffer with any side effects, but thankfully the jab is done for another couple of weeks, so hopefully I can enjoy Christmas and then go from there. Ive made a follow up appointment with the specialist for 28th January, so we will know then whether or not the Humira has worked and if we can start trying again or not. Im really hoping that we can, but I’m learning to worry less about what I can’t control now, so we’ll just see how it goes.

Friends of ours had their first baby last week and we met her for the first time today. She was gorgeous and holding her gave me strength that all of this treatment, worry and stress will hopefully be worth it one day. I do find it difficult coming to terms with having to do so much to my body to make it carry a baby – it all feels quite unnatural, forcing it to react differently to how it wants to, but hey, thats what medicine is for and if it gives us the baby we wish for so badly, then that’s ok with me.

Keep your fingers crossed that all is ok and that the next jab goes smoothly too!

X

Treatment plan sorted, now I need help to relax!!

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Yesterday I wrote all about the treatment plan which I’ve been given by the Reproductive Immunology specialist. I’m feeling ok about this (still very nervous about if it will work, but I think that’s normal after losing three babies) but now I’m thinking about how I can prepare my body and my mind for all the treatment which lies ahead. I really struggled to sleep last night as my brain was whizzing about over all the drugs i’ll need to take, if it will work, how it will affect me, etc etc. So today I’ve decided that I need to focus some energy on getting myself into a good place for all the treatment and being as relaxed and calm as possible (much easier said than done!!!).

At the moment I’m having reflexology twice a month, which I love. I find it really relaxing and its just a quiet time that I have for myself when I can focus on my body, relaxing and that I’m doing something positive for myself. The doctor has said that I should definitely continue this, which I will, and I will probably increase it to three times a month – twice before ovulation (once we can start trying again) then once in the two week wait.

The doctor said that acupuncture can be useful for infertility, but not so much for miscarriage. I’ve had acupuncture before, but didn’t really feel much from it. But i’d be open to maybe trying it again.

My gym has pilates and yoga classes, so I’m going to definitely start taking at least one class a week in the new year. I’ve never tried them before, but I know lots of people who recommend them for strength and calming relaxation. I love the gym, but I’m more of a runner, so I think trying something more calming would be good for me.

I quite fancy starting to do some meditation as well. I don’t think ill be able to float around in the lotus position, but just take some time each day to be calm, focus on my body and tell myself positive things about what we’re doing and what my body is achieving. I’ve never really done any visualisation techniques before, but I think they would be helpful.

Is there anything else which you ladies have tried/would recommend at all please? We all know how bloody stressful this entire journey is, so I’m hoping that I can keep myself calm and give my body the best chance of being healthy and responsive to the treatments.

Thanks very much!

X

Results are in – it’s a long one!

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Today I got my results from the Reproductive Immunology specialist. As i’ve said before, this is quite a new area in recurrent miscarriage treatment and not something which the NHS here in the UK will offer treatment for, so we’re seeing a private specialist.

As a quick recap – we’ve lost three babies in the last two years. The first one happened only about 10 days after a positive pregnancy test, so very early on (but obviously still shit). The second one I saw a fetal pole and sac at 6 weeks, then no heartbeat at 8 weeks, then a heartbeat at 9 weeks (but the baby only measured around 6 weeks), then lost it at around 11 weeks. The third one was very similar to the second one, with slow rising HCG levels and the baby measuring much smaller than it should, even though it had a heartbeat, then lost at about 11-12 weeks too.

All of my results (hormones, chromosome testing, laparoscopy, thyroid) had come back fine previously, so he was going to test me for immune problems and blood clotting problems. I had my tests done last week, and got the results today. Here’s what they found. Forgive me if some of this is very science-y, and also forgive me if I don’t explain it all very well. I’m not a doctor, far from it, I’m just trying to make sense of what he said said!

Natural Killer Cells – count

The doctor we’re seeing believes that many women who have recurrent miscarriages have high levels of Natural Killer Cells. These cells don’t affect people usually, but once a woman becomes pregnant. this ‘foreign body’ (the foetus) is essentially attacked by these cells, so the pregnancy doesn’t survive.

According to our doctor, a normal level would be under 200. My test showed that I had 346. I asked if this was very high and the doctor said ‘its not the highest I’ve ever seen, but its not far off’ – WOW!!!! So this is one area which needs to be addressed.

Natural Killer Cells – ‘aggressiveness’ of the cells

The scientific term is ‘activation’, but I thought ‘aggressiveness’ was easier to understand. Basically they test to see how aggressive the NKC which you have, are. It turns out that although I have a lot of NKC, they are not very aggressive, so that’s good.

TNF (tumour necrosis factor)

This one I don’t understand so much yet, just that it is something linked to my immune system, so I need to go away and do some reading, but ill share it with you anyway.

A normal level is between 13-31, and mine came out at 33.

So – in terms of treatment, this is what happens next (prepare yourself, its a long one!!):

– I carry on with my baby aspirin, metformin and high strength vitamins which I am currently on.

– Next week, I have to have an injection of to bring down my TNF levels. I then have another one in two weeks time. Two weeks after that I have to have my blood tested again to see if it has worked. If it has, we can start trying again (wahoo!) If it hasn’t, I have to have another 2 x injections, and then we can start trying. So best case scenario, we can start trying in my February cycle, worst case March/April (that seems so far off!!! Mustn’t think about that right now!!)

– Once we do start trying, I will need to start taking¬†steroids. This is to, basically, calm down my immune system, so my body doesn’t attack the foetus. If I do fall pregnant, I then have to have an intralipid infusion straightaway, then another one at 8, 12 and 16 weeks. This helps to coat the NKC to prevent them from attacking the foetus.

A lot to take in eh!?!? I certainly thought so!!!

So I don’t really know how I’m feeling right now, its a lot to take in really. I’m definitely pleased that we have been to see¬†this doctor, as it sounds as though I would have continued to lose my babies in future if we’d just kept trying, if the NKC are indeed what is causing me to miscarry. I’m definitely feeling nervous about all the drugs which i’ll have to take and how they will affect me, but I just have to give it a try. I’m also feeling nervous about whether or not this will even work. I want to be positive, but its so bloody difficult when we’ve had so much bad news before.

For now i’m trying to take it one step at a time. Im hoping that the injections are ok and that they bring down my TNF levels so we can start trying in Feb, but i’ll have to wait and see. All the waiting really gets me down, but nothing much I can do about that really.

Time for a bath and a rest after all that I think!

X

Results appointment tomorrow – mixed feelings

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Last week I posted after our first appointment with the miscarriage specialist and was feeling really positive. I started on metformin (for the second time) and also lots of high strength vitamins to get my body ready for pregnancy. I had 22 (yes – TWENTY TWO – almost passed out in the bloody chair!!!) vials of blood taken on Thursday, to test for immune and blood clotting problems, then tomorrow we get the results.

The metformin made me feel a bit sick to start with last week, but I’m ok on it now, so will start to increase it from 1-2 tablets per day, then to a maximum of 3 per day after that. I find that if I eat anything very sugary it makes me feel a bit weird (it is a diabetic drug, after all) so I’ve cut right back on that stuff for now. Sadly that means that I now can’t eat any gluten (I’m coeliac, so thats been the case for a while), much sugar (how boring is that with all the Christmas sweets and treats that are everywhere at the moment?!) and no alcohol because of the metformin (Seriously!?!? No alcohol at Christmas?!? Nightmare!!!!!!). Pretty dull all round really!!

Now that the appointment is almost here, I know that whatever he’s tested for, he can help to treat, but I can’t shake that ever-familiar feeling – will this ever work??

I read the success stories on his website and there were some amazing ones – women who’d lost as many as 20 babies before they saw him, then they were successful. But I still can’t make myself believe that this might actually work for us. I think that this is probably a defence¬†mechanism – that my brain won’t let itself get too excited in case we lose another one – but I really just wish that I could let myself believe that this might work. I’m also a bit nervous about the treatment which I might need. I’m not someone who takes a lot of medications normally,so I’m a bit scared of the thought of taking lots of new drugs, but I’m trying to put this out of my mind until I know for sure.

I’m sure i’ll feel better tomorrow once I know the results, and the treatment plan which follows from it, but right now I just feel exhausted. The thought of trying again does make me happy, but the thought of falling pregnant again fills me with more fear than happiness, which is so sad. My last two miscarriages were monitored over a period of 4-6 weeks each before I actually lost the babies – weeks of regular slow-rising HCG tests, inconclusive scans, hospitalisations, hope, worry, anger, sadness, and then finally the babies were lost. The thought of going through all of this again is just horrible.

I tried to give myself a good talking to yesterday on my way to work. We want a baby, so I can’t give up. Whatever happens with this doctor we need to keep trying and stay strong and eventually we will have our baby. But that nagging fear is still there, however much I tell myself this. A good friend of mine who has been through a similar experience told me ‘that fear will always be there, but there is light at the end of the tunnel’.

I’ve been reading lots of blogs this week to keep my spirits up and to¬†remind me¬†that lots of us are going through the same feelings and worries, and its made me so sad how much Christmas is affecting all of us in this community. It’s easily the worst time of the year when you’re trying to conceive – pregnant friends, new babies, toys, family get togethers – you know how it is. it’s horrible that such a happy time of year is marred by this dark cloud of infertility, and that it affects so many of us who are trying. But its only a couple of weeks until a new year and new chances for all of us. 2014 has been the worst year yet for my husband and I – I’m certainly hoping that 2015 is better.

I’ll let you know how tomorrow’s appointment goes. Im really hoping that we can try again on my next cycle in January, but i’ll have to see what the doc says. I’ll just get back to eating my plain chicken and rice now –¬†BORING!!!!!!!!!

X

And so it begins!!

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So today we had our first appointment with the specialist and it went really well! He was really straightforward, friendly and clearly knew what he was talking about, which was brilliant! We explained our story so far (three losses, PCOS, coeliac, etc etc) and showed him all of the tests which we’d had done so far, all of which were normal.

The first thing that¬†he said is that I need to prepare my body now, rather than once I’m pregnant, so he said that I need to start taking these tablets from tomorrow (after my blood tests):

Pregnancy vitamins with Omega 3

Baby aspirin (75mg)

Vitamin D tablets

Metformin (3 times a day, but ill have to build up to this as I’ve had it before and it makes me feel pretty sicky. This will hopefully get my ovulation back on track, as the PCOS makes my cycles range from 32-55 days, which is a nightmare for trying to get pregnant!)

He explained that he would test me for immune problems and also for blood clotting problems, then once he had these results back he could decide how to start treatment. So I’m off to get bloods taken tomorrow, then I have a follow up appointment next Wednesday to get the results and see where we go from there!

In terms of next steps after the results, he said that we could either try naturally (if my ovulation is under control on the metformin) or use drugs to stimulate ovulation. So we’ll see what the results show and then decide. I explained that I was having reflexology and he said that this is a good thing, so i’ll definitely keep doing that as I find it really relaxing.

I can honestly say that today is the first day in a loooooong time that I’ve actually felt positive and that this guy might really be able to help us to have a baby. I don’t know how it will all work out, but I’m pleased that we’ve taken the step of seeing a miscarriage specialist and we just have to have the tests, see what they show, and then go from there.

Today is a good day!

X