Tag Archives: ohss

26 February 2014

Archie and I originally had a booking appointment scheduled for Monday but we found ourselves in hospital over the weekend. The combination of OHSS nausea and 'morning', (all day!), sickness eventually took it's toll and after 4 days of struggling to drink it became apparent that I would need some assistance. When we arrived at Accident and Emergency my blood pressure and blood sugar were so low that they wouldn't let me go to the toilet on my own in case I staged an unsupervised collapse. They were pretty unfamiliar with OHSS but the prominent lump that is now my right ovary was sufficiently compelling to warrant calling a specialist down from gynaecology who referred me to the relevant ward in a different hospital. Unfortunately, since I'd been plugged into a catheter and an IV, (and because it's hospital policy), I needed to be transferred by ambulance - this was unfortunate because ambulances are in particularly high demand at the weekend. So, at 2.30am, after 11 hours on a trolley, I was wheeled up to a surgical ward to try and get a few hours sleep - the ambulance didn't become available until 9.30am 12 & 1/2hrs after it had been ordered and 17 & 1/2hrs after I'd arrived. Believe it or not, I am actually a massive fan of the NHS - I don't want to see it privatised; I would like it to be more efficient but I understand that this can only derive from better funding and a genuine commitment from the government to improve rather than marginalise the service. Imagine the plethora of jobs that could be created if we were to refurbish our hospitals with all the up to date administrative/medical equipment, facilities and staff they really need. Anyway, I think all the doctors and nurses expected me to create a massive stink about being kept waiting for so long - which, of course, I didn't - people who are subject to externally imposed parameters can only manoeuvre to the best of their ability within those limitations. I only mention this because I wish that the same open-minded understanding was a two way street. When the specialist asked where we'd had IVF and I explained that it had been in Croatia she was midway through pulling a sourpuss face when I intervened with; 'We actually looked at having IVF here and at that point we were advised that because of my Anti-Mullerian Hormone, (AMH), levels and my weight I was high risk for OHSS and, since only seven eggs were stimulated, it would have been difficult to give me fewer hormones and successfully harvest any. I would prefer to be unwell and pregnant than in perfect health and relentlessly barren because health and safety regulations prevent me from making the choice to take that risk. I understand that, because I am ill, I am costing the tax payer money but a) we are that tax payer and b) we have saved the tax payer the price of an expensive procedure and the associated drugs, so any cost incurred by having to rehydrate me with saline solution and glucose is comparatively minimal and no more than our due. The chances of getting OHSS are around 5% - it has to happen to someone and, according to the British doctors we saw, it was always likely to happen to me.' She looked at me, rearranged her face somewhat and said 'Yes, it could have happened anywhere. Croatia's a lovely country. Did you get to see much of it?' Don't mess with the dehydrated pregnant woman or she'll break out the unadulterated honesty - #toosicktosufferfoolsgladly#.

After 36hrs of intravenous fluid I was feeling a lot better but I wasn't discharged in time to attend our booking appointment. I was horribly disappointed because I had done nothing but worry about the well-being of the embryos and I was desperate for a little reassurance. As luck would have it though they decided not to release me without scanning my ovaries - and good fortune timed the procedure to coincide with a visit from Archie, so he was there to hold my hand while I waited for them to focus in on each little gestational sac. We held our breath while she searched for heartbeats - I had been so sick that we were terrified that one or both embryos might have suffered - but after some considerable manoeuvring two little heartbeats were confirmed. My ovaries were still engorged and the dreaded 'bed rest' was invoked for the foreseeable future but I was so happy to see our embryos and be discharged that I would have agreed to anything. We have to go back in a week for further assessment.

It has taken me two days to write this post because I am having to compose it between waves of nausea akin to seasickness - I honestly don't ever remember feeling quite so unwell. I knew the nausea would return when they removed the drip but I was hoping that the rest-bite would be enough to see me through until it eased of it's own accord. That hope now fluctuates between seemingly tenuous and laughably futile depending on the time of day - but so far I am hanging on in there. (I wouldn't however recommend any well meaning 'it'll all be worth it in the end' platitudes - the sickness is sufficiently nauseating without being chivvied to choke on the bright side!)

5 February 2014

As I lie here happily sipping my disgusting decaffeinated tea, I have come to realise that the blog has reached the natural end of it's 'daily update' life span. The embryo(s) and I are now firmly engaged in the pursuit of 'sitting tight' and using all our might to merrily divide and multiply, while simultaneously endeavouring to contain the worst of the OHSS. Short of filling your heads with my own un-baby/IVF related nonsense I can't imagine keeping you enthralled with a blow by blow account of days spent lying on the couch - and the blog was never intended to be a platform for preaching personal insight on topics other than assisted conception, (besides, the more irrelevant material that I put down in black and white, the more ammunition I provide to a certain little someone if I've changed my tune in 18 years). So, every time something noteworthy happens; if the OHSS disappears or flares, when we find out how many embryos we're harbouring, if we encounter any colourful characters in the field of obstetrics etc. I will post and keep you abreast. For those of you who don't want to keep checking back and forth, if you hit 'follow' any new update will be emailed to you directly. I will miss you all but I know that I have a better chance of nurturing your attachment if I don't bore you to tears - and I want, more than anything, for the embryo(s) to continue to benefit from being cared about by such a lovely network of people. Wow - I feel more emotional than I ever imagined about letting go of your daily support - but it's not 'goodbye forever', it's just 'goodbye for now'. On our wedding invitations Archie and I had the old African proverb, 'If you want to go fast, go alone. If you want to go far, go together.' We couldn't have covered this distance without you - thank you.

3 February 2014

It never occurred to me that there would be any interest in the blog beyond the inevitable cliffhanger inherent to our IVF attempt - but a handful of people have expressed a desire for the blog to go on. I imagine that, in the main, these requests are a manifestation of polite kindness - but, if even one person really would like to be involved for a little bit longer, it would be my very great honour to nurture that attachment - the embryo(s) and this wannabe-Mummy know a precious gift when we see one. Besides, I'm certain it will surprise no one to discover that I haven't suddenly run out of things to say!

I am not going to dwell, any longer, on our gratitude for the kindness and support we have received because I don't want to bore you with repetition - suffice it to say that, together you have cast my world in the most beautiful array of my favourite colours and banished some ghosts that had threatened to linger for a lifetime. You may have been mostly silent but, collectively, you have imparted great and powerful wisdom and, as an impoverished scholar regarding the meaning of life, I am forever indebted.

Anyway, enough of that - let's get back to my vagina and it's most recent public appearance. We came back from Croatia to find a letter offering us a gynaecological appointment for today regarding an unrelated minor complaint that has long since resolved - but it occurred to me that, rather than cancel, we could use the opportunity to have my ovaries given a quick once over and get some feedback re. the old OHSS. I told Archie that when they found out that we had been to Europe for IVF they would be snotty with us but he was sceptical and I could see him silently filing this under the category of 'progesterone-induced-paranoia'. I should have been grateful to the good lady doctor for making her disapproval so eminently undeniable - it is a rare occasion that I get to prove Archie wrong - but I'd be lying if I said that gratitude was my overwhelming emotion. You would have been proud of me though - I bared my best gritted teeth smile and played dumb as she dangled her tantalising bait. Having explained the circumstances and assumed the pre-scan spread legged position she delivered her exasperated lecture on people going abroad for IVF, (sigh). I applaud her tactical restraint, she could've launched in earlier but she held back until I was at my most vulnerable which enabled her to be both literally and metaphorically below the belt. Pretty impressive you have to admit. The problem with people going abroad for IVF, (sigh), is that they're not under anyone's supervision if there are any complications when they get back, (sigh). I resisted the temptation to suggest that, if her feelings on the matter were so strong that she couldn't help but pass unsolicited judgement, she could always open up an ethically priced clinic, or indeed, commit her life and her income to the reversal of the ageing process so that the 2 year waiting list didn't pose such a problem - and I will similarly resist the temptation to 'inadvertently' email her a link to this blog. Anyway, she was unwittingly disarmed by the state of my ovaries, which were sufficient to merit the beckoning in of a student, thereby enabling her to don the eminently gratifying role of benevolent, all-knowing, superior, (with the emphasis on 'all-knowing' and 'superior'). Before we started the IVF process my ovaries were about 3.3cm wide - they are now 7.7cm wide and filled with cysts - 7.7cm doesn't sound that big but I suppose if my liver or my arm ballooned to more than twice it's normal size I might be a bit concerned. They are a centimetre bigger than they were when we left Croatia and she seemed to think that I must be lying about my level of discomfort - which I wasn't - the pain is not constant, sometimes it's so bad that I can hardly move or breath and other times it is much more manageable, (besides which, I have read about some people's ovaries swelling to 14cm so it can't be THAT bad).  She also noted an increased build up of fluid in my abdominal cavity. The upshot is that I am to ignore my internal barometer and desist from all activity forthwith - just because I don't think it feels 'that bad' doesn't mean that I can get up and take the dog out.  I am to stay horizontal, keep guzzling excessive amounts of water and take myself to hospital if the pain gets severe for any prolonged length of time, (I am just grateful Archie wasn't given that advice a few days ago). We are to go back in two weeks when we will 'have to be seen by a different doctor due to the timing of her rotation' - obviously we are distraught to miss the opportunity for more moral guidance but we will, somehow, find the strength to endure.

Hope springs eternal.

By last night the OHSS was back to the degree that my abdomen was sore and a bit bloated - but my tummy wasn't rigid and it would take a serious feat of self delusion to claim that it was 'worse than it had been before'. Today it is tormenting me with twinges but, once again, there's no persistent pain and/or rigid distension which is really what we're looking for.

I am paralysed by the enormity of tomorrow. I knew this would be tough but I didn't appreciate just how tough; which is, apparently, what makes the 2nd try so much harder than the first - people no longer have naivety on their side. Odds of one in three may not sound terribly good but, when you embark on your IVF journey, you hear about every successful-first-time-attempt known to your circle and you start to think/hope that the figures can't be quite right. Of course, deep down, you know that this is an illusion created by the vast numbers of people having embryos transferred every day, but it's hard to keep this in perspective. First timers are also probably buffered by the fact that their initial try has often been preceded by years of failure; so their odds may not be great but, for a while, they feel comparatively astronomical.

Whatever the reasons, I am loathe to admit that, despite the statistics, despite the diminishing OHSS and despite my determined efforts to practise the art of realism - I am still hopeful of a positive. I know that the signs are increasingly pessimistic and yet, if I am 100% honest, I just can't quite wrap my head around the idea that it's not going to work. I have even tried telling people that I think it will be a negative, in the hopes that by writing it down or saying it out loud, I will manage to persuade myself - but, push has come to shove and hope has beaten the odds to emerge the merciless victor - which, I guess, accounts for the paralysis... I have just made the untimely discovery that, somewhere along the way, I seem to have acquired an uncharacteristic, (and infuriatingly stubborn), streak of un-quashable optimism, (Archie, my darling, you have a lot to answer for). 

In an ideal world I would have managed to genuinely convince myself of a negative result by this time today so that I could approach tomorrow's test sporting a modicum of armour. As it is, I have no choice but to go into battle with my heart on my sleeve. My poor wee heart, I'm so sorry - I tried my best to protect you.

29 January 2014

I am not usually a sedentary person; Bauer and I probably average about 7 to 10km a day - sometimes more, sometimes less - but he benefits fairly significantly from a finely tuned guilt complex, wrapped up in the remnants of a lingering eating disorder.  The eating disorder hasn't been life-threatening for a very long time and I don't normally talk about it because, compared to what it once was, it is now a manageable cross; one born by more people than you might imagine.  Some people know.  Some people don't.  It would be easy enough for a person not to realise since it doesn't always manifest itself as anorexia - I have also been severely bulimic, as well as having periods where I have an eating disorder in the same way that someone who has been an alcoholic is 'always an alcoholic' - I might be winning the battle not to starve or stuff myself but, make no mistake, beneath that serene exterior there is most definitely a battle going on. Archie often asks me why I don't write about eating disorders since I have so much 'experience' and such incredibly strong views on the subject - and I always tell him that it's because I've rarely read anything written about them that isn't just part of the problem. Most people aren't aware that eating disorders have the highest mortality rate of any mental health condition known to humankind. If you are not careful about what you say you might just kill someone - maybe not instantly - but your misguided word or phrase will lodge in their poor diseased brain and torment them to the brink of collapse. It's not that people don't mean to be careful what they say - it's just hard to be careful what you're saying when you don't really know what you're talking about.

The first two massive, fundamental, epic misnomers are that a conversation, article or other discourse about eating disorders, especially anorexia, should centre around 'food' and 'weight'. This is the most tragic and corrosive misunderstanding of all - and probably the biggest reason that eating disorders have such a high mortality rate. Why? Because you simply can't solve something by making it worse. If you are trying to communicate with, connect to or understand a person with an eating disorder you absolutely should NOT make ANY reference to what they do or do not eat or how much they weigh. I cannot tell you how sad it makes me to know that when a person goes to the doctor in this, or any other western country, to ask for help with an eating disorder the first thing the doctor will do is put them on the scales. To do this is to completely misunderstand the mindset - all you have now done is given them a number which they will be compelled to drive down by the next time they see you because otherwise they are 'failing' to do well at having an eating disorder. Now, to add insult to injury, people will also be given a BMI and told what range they fall into - in fact, if they don't fall below the 'normal' range they will be told that they don't have an eating disorder - even if they know themselves that their relationship with food is severely compromised. A person who has a sub-normal BMI will realise that they are only in the 'underweight' category and not in the 'severely underweight' category which will flag up for them that they are 'failing' to be as good at being anorexic as other people. You have to understand that a person asking for help will have 5% of their brain on their side, while 95% of it will be resisting, wildly absorbing any information it can find to fuel the disease and resist this 'temptation' to 'give up', to 'fail', to be 'tricked' into thinking that it's OK to eat more. Anorexia is hugely competitive, the person is trying to 'improve' themselves and they've locked on to the idea that this can only be done by losing weight - NEVER give them more numbers, do NOT compare them to other people and don't ask them what they eat because they will be tormented to admit that they eat anything at all - and, if they do tell you what they've been eating, they will be compelled to eat less to ensure that the next time you ask the same question they have 'improved'. This competitiveness is also why putting a whole bunch of people with eating disorders in a treatment centre together is about the most epically stupid thing that psychiatry has ever come up with. Up until a certain point people with eating disorders should be kept as far away from each other as possible - by putting them together you are just compelling then to compete with each other. They won't want to but they won't be able to resist. If a person goes to a doctor and says they have an eating disorder why is it necessary to put them on the scales? If they think they have an eating related problem, then they have an eating related problem - you don't need to weigh them to prove it to yourself, it's not about you; you don't need to categorise them as having a better or a worse problem than someone else, what earthly difference does it make? You just need to HELP them.

The other fundamental misunderstanding that drives me mental is the commonly heralded medical definition of anorexia as being 'a loss of appetite'. Are you crazy?!!! These people are fucking starving! They are obsessed by food. They are desperate to eat. They are hungrier than you've ever been. They haven't lost their appetites, they've lost their minds - help them find their sanity, help them escape the cult like mentality which has taken over their brain. They're not refusing food because they're not hungry - they're refusing it because they're terrified that eating it makes them a worthless failure that doesn't deserve to live. Don't try and rationalise it, (they won't eat, so they must not be hungry); it's NOT rational, it's an illness, it's not playing by logical rules.

Obviously anorexia and bulimia are not the same thing - and I'll spare you my bulimia rant - suffice it to say that you shouldn't talk about 'food' or 'weight' to these people either. Weight is the barometer by which people with eating disorders are assessing their worth - but conversations about weight won't help them to solve their problems. Their issues are complex ones of inadequacy, worthlessness, imperfection, feeling judged, feeling powerless, feeling overwhelmed, feeling depressed. They are suffering from an inability to cope with the lack of control that is living - they are trying to construct a world with black and white rules so that they can survive. They are killing themselves to stay alive. If you understand that then, maybe, you can start to help them.

So why do I mention all this - or even any if it? (Especially as I will delete this post long before any child of ours ever gets anywhere near it.) I mention it because my eating disorder is one of the few things that I never intend our offspring to know about their mother - and I know that the only way I can bring this about is to be entirely normal around food from the moment that they are born.  I couldn't live with myself if I passed on these feelings of inadequacy.  I don't care what it costs me; I don't care what I end up looking like.  If we are lucky enough to have a child, especially if it's a little girl, they are going to think that their mummy loves herself; that their mummy thinks she looks good in everything that she puts on... that their mummy has never, EVER, equated weight and worth. They will get enough complete crap rammed down their throats by the media - they will need at least one half-decent female role-model and it's going to have to be me. It has been hard for me but I have been eating in healthy quantities since we started this process - and it has been made harder still by the fact that now I can't even go for a walk, (exercise and eating disorders - the very best of frenemies), but I am writing it down, saying it out loud, publishing it for the world to see so that it's out there and there's no going back.

Of course, having gotten this epic weight off of my chest, I'm almost guaranteed not to get pregnant!  Today has been the hardest day so far - the OHSS doesn't seem to be getting any worse which is not a positive sign.  Please don't post telling me not to worry though – just for today I don't think it would help.    

Bedside manners.

The OHSS is pretty sore today - it hurts regardless of whether I'm lying down or standing up and walking is not really an option - but I imagine that this is a backlash from treating it with such disregard yesterday and I am hopeful that it will settle down at least periodically, as it has before. Technically I didn't bring it upon myself for at least another couple of days because, until/unless an embryo implants, what I have at the moment was caused by the last injection and I'd be experiencing it whether we'd gone ahead with an embryo transfer or not. If it flares significantly around 4-7 days after the transfer then this could mean that an embryo has implanted, at which point it becomes self-inflicted and I will be duly circumspect about any references made. At least the whole thing has an in-built element of farce to keep up my spirits - despite being in a reasonable amount of pain, I am in the ridiculous position of hoping that it gets, at least marginally, worse, even though I know that this isn't a guaranteed indication of pregnancy - because if it goes away altogether I will be terrified that neither embryo has survived.

When we were in Zagreb we were unable to follow through with the acupuncture because we didn't have a car and Dr Romana didn't want me walking/taking public transport etc. before the embryo transfer. Archie was a bit disappointed because he'd been sufficiently persuaded by the information available online that it was worth having at least one acupuncture session before and after the transfer on the off chance that it might be beneficial. This being the case, he booked an appointment for 11am this morning at a Glasgow clinic. I had forgotten all about it and I wasn't convinced that it was a good idea given the OHSS, (I might involuntarily punch anyone who dared to prod my poor, distended stomach), but I agreed to go along and see what the acupuncturist had to say. As it turned out she had the most unexpected repertoire I could possibly have imagined, including 'IVF is unnatural', 'acupuncture can cause miscarriage' and 'your pregnancy is high risk' after which wonderful gems and, having stuck a few pins in me, she had the spectacular cheek to ask if I was 'calmer now?' - in the kind of tone that implied I'd come into the room, raving like a lunatic and she'd cured me with her soothing chat. Needless to say we won't be going back. I'm not saying acupuncture can't work but it had significant odds to defy in this particular setting.

Here are a few pictures from the past couple of days - including one or two of me in my new embryo smuggling capacity.

Immediately after the transfer, feeling emotional.
Immediately after the transfer, feeling emotional.
Temora, Archie and the embryos.
Temora, Archie and the embryos.
IMG_0573 IMG_0574
Lying down in Zagreb airport.
Lying down in Zagreb airport.
A snowy farewell.
A snowy farewell.

A bloody battle.

I have just received an email about my blood test results. I think it was just a basic full blood count but it has come back normal and, apparently this is a VERY good sign!!! Certainly it has cheered Dr Romana up immeasurably and she says that this makes going ahead with the implantation much more likely!! Who knew a full blood count could be so significant? I am so pleased - I know we're not out of the woods until tomorrow morning but I don't think she would have sent such a positive email if she had serious reservations. Could it possibly be that things are actually going to work out OK? I am sure it has been an epic battle between Archie's guardian angel and my malicious little army of gremlins - but it looks like Archie's angel might be taking serious casualties! For the second time today - 'Guan yersel!'.