Very Inspiring Blogger Award

20140726-very-inspirational-blogger-awardI’m very honoured to have been nominated for a Very Inspiring Blogger award by twelveweeketernities, thank you. I haven’t been blogging for all that long because a) I didn’t know how (and I’m still learning!), b) I didn’t have the emotional strength to put my experiences in to words until now and c) I was worried that people might think it was somewhat ‘indiscreet’ to air so much of my blood and tear stained gynecological linen in public.

I’m glad that I have started blogging, though, as I have found the process very cathartic and I have also discovered a wonderful community of inspirational and supportive people out there in the Blogosphere. Thank you, one and all.

Below is my list of nominees. I know that many will already have been recognized, but a little more appreciation won’t hurt ūüôā So, in not particular order:

Considerings

justanotherinfertilityblog

myperfectbreakdown

tryagainbaby

findinghopeaftermiscarriage

hopeanchorsthesoul

pregnancypause

mymmcstory

bloomingspiders

migrainefamily

mommy this mommy that

babybumpwishes

beautifullybrokenbyhim

thingspeoplesaidaftermymiscarriage

everupward

 

To accept this award, here are the things you need to do:

1. Thank and link the amazing person(s) who nominated you.

2. List the rules and display the award.

3. Share seven fun facts about yourself.

4. Nominate 15 other amazing blogs and comment on their posts to let them know they have been nominated.

5.  Optional: Proudly display the award logo on your blog and follow the blogger who nominated you.

So, seven fun facts about me…

1. I enjoy wild swimming and swimming outdoors and swimming. Did I mention I like swimming?

2. I baby my cats like a crazy cat lady in the making.

3. I am fascinated by religion and philosophy (even though I am not religious). I teach the subject and also organize a philosophy in the pub group.

4. I like my steak medium rare, but I was a vegetarian for 10 years.

5. I have traveled the full circumference of the earth twice, once taking only two weeks to complete the trip.

6. I have slain zombies in a dis-used shopping mall. It turns out, in a ‘survival’ situation, I’m a ‘lone wolf’ type, not sticking with any particular group of survivors, but forming transient allegiances as I go. Who knew?!

7. I have done a sky-dive with 50 seconds freefall. It was awesome, but once was enough!

Supervolcano woman (infertility after RMC)

You may be aware that under Yellowstone National Park, Wyoming, USA, lies a caldera (http://en.wikipedia.org/wiki/Yellowstone_Caldera). If you like bad disaster movies, (and I do), you may already be able to picture the kinds of destruction and chaos that the release of such a force of nature would unleash; the potential for devastation, just under the crust.

In the words of Newman and Baddiel’s (showing my age) History Today sketches (http://www.youtube.com/watch?v=9UMedd03JCA), That’s you, that is.

That’s how I feel at the moment, anyway. Monstrous rage and heat and spiky bitchiness, bubbling, just under the surface. Beware, scratch it and you might glimpse the fire works.

Sometimes, I speak and the words come out a little too loudly, with too much of an edge. An emotional geyser? Not quite. More like the emotional equivalent of a volcanic mud swamp, toxicly bubbling away. Sometimes I feel like, in side, my attitude stinks.

Month on month on month, the surface breaks (almost breaks). Hormonal activity weakens the essential surface tension. Frustration. Disappointment. Inevitability. Self fulfilling prophecy.

To be honest, I wouldn’t want to make my home in me, either.

If you like, or feel you have been helped by what you have read here, please share it. If you want to see more, why not follow me? Thank you for reading!

Emergency bathroom midwifery ***Birth described***

I have written before about how difficult I have sometimes found it to be around pregnant women and babies. Emotions swing between jealousy, self-hatred (I never used to be such a nasty b*tch) and sadness for what I’ve lost. Self preservation has a lot to do with it, I’m sure. That and the abject humiliation of having to leave a 2 year old’s birthday party because you can’t stop crying (got the t-shirt).

The reality is that you’re going to have to face pregnant women (and all their worries and complaints about their aches and pains) at some point; whether at work or out and about, they’re everywhere (are they breeding?!). You can either get on with it, or let in ruin your day. I’ve opted for a nice balance of both.

I knew that my sister and her husband wanted a second child, and I knew that they were tying (the loaned What to Expect books had made the return journey from my shelf to her’s). When she told me that she was pregnant again, I was pleased, but also envious (and guilty because of feeling the envy). I wouldn’t be able to avoid her for 7 months, and I wouldn’t want to have to try; I love my family, and there’s no way I’d want to make things difficult or awkward. You’d have to ask them if I’ve managed it!

It was very exciting when I fell pregnant again myself a couple of months later, and we discussed the baby things we could share (I believed at that point that I would be facing something of a financial crisis due to being in the middle of moving jobs and there being big question marks over my maternity pay entitlement). I had a few scares with bleeding etc. and I am sure that my sister’s heart was in her mouth every time I went for a reassurance scan, being pregnant and emotional as she undoubtedly was. She was having the most dreadful morning (all the time) sickness and had a demanding toddler already, so was exhausted. Everyone was tired and emotional, all the time.

Then I found out that my baby had died at the 13 week scan.

Awkward!

No need for hand-me-downs anymore. And yet, I could not have predicted then that the sisterly bonding over babies I had imagined would be more powerful and visceral than any amount of hand-me-downs and baby talk could ever have facilitated.

Three months after my third miscarriage and two weeks before my sisters due date, she texted me to say that her waters had broken. Her first had taken several days to put in an appearance, so no-one was rushing to get warm towels just yet. I decided to go over to her place and have a cup of tea while we waited for her husband to come home from work. No problem. My niece was with our parents, we could have a natter in peace.

When I arrived, everything was fine. The things for the overnight bag were laid on the bed, her notes were in a file by the ‘phone. I thought she seemed uncomfortable. I made her some beans on toast to keep her strength up for the task ahead. She couldn’t eat them. She said she was fine. I suggested she ring the midwife. The midwife said that, if we were worried, we should drive down to the hospital and her husband could meet us there. I have a very tiny little sports car, and was slightly concerned about my sister’s ability to get in to or out of it. “No, you can’t have an ambulance, it’s not appropriate,” came the midwife’s reply. Fair enough; if you don’t ask, you don’t get.

I packed the overnight bag and put it in the car. My sister went to use the loo. I heard her shout to me from upstairs that she couldn’t move. I know a contraction when I see it; by the time I got upstairs, she could hardly speak. In an act of desperation and futility, I brought her two paracetamol. She barfed them on to the bathmat. I fetched the overnight bag back into the house and phoned 999.

If you’ve ever had to make a call to the emergency services, you will know that they keep the coolest heads in the country. The operator talked to me calmly, but with extreme authority as I helped (forced) my sister on to the bathroom floor (she waned to stay on the loo – “absolutely not allowed,” said the operator. “Get her on to the floor. Now.”) Could I see the baby’s head? “I’m sorry, I’m going to have to look.” I’ll take that scream of agony as a ‘yes’, then, shall I? “No, I can’t see the head, yet.”

“Help’s on it’s way. Can you hear the sirens? Don’t worry. Help’s on it’s way.” I rubbed her back as she knelt on the floor. Contractions were about two minutes apart.

“Have you got clean towels?” said the operator. “They don’t think they’re going to make it,” I thought, but didn’t say.

No-one tells you this, so I’ll tell you now; if you have had to call an ambulance because you are having to deliver a baby at short notice at home, take a moment to go and open the front door. It’s a small, yet essential detail. I dashed downstairs to answer the banging at the front door. I have never been more relieved to see a paramedic in my life. My sister, by this stage, didn’t care. She’d gone primal. Her labour cries came from the earth itself. I texted my mum; “It’s happening. The ambulance is here. Don’t worry.”

The bathroom was too narrow for me to get to my sister to hold her hand, so I held her knee instead. All attempts to try to transfer her to hospital had now been abandoned. Nature was going to take its course; it was unstoppable.

My nephew was born less than 10 minutes after the ambulance arrived. It was extraordinary. My sister’s husband arrived about 15 minutes later, and did manage to find a space to stand, cradling his new-born son in the shower cubicle. Paramedics tended to my sister, one from in the gap between the toilet and the sink, another crouching in the bathtub. Midwives ran up and down the stairs. I made a few phone calls. Mum, dad and new baby were taken off to hospital in the ambulance. I followed on in the car, with the now overlooked overnight bag. “Don’t let that baby out of your sight,” texted my mum.

It wasn’t exactly the circumstances I would have imagined for my first visit to a maternity ward, but I had one job to do, and that was to look after my nephew. My sister needed surgery, and her husband went with her. I was left, alone, in a side room, literally holding the baby. A nurse made a comment that made it clear that she thought I was my sister’s mother. I’d had a stressful morning, but had it aged me that much?!

I spent the day sitting by my sister’s hospital bedside, getting snacks from the canteen and waiting for her belated epidural to wear off.

Was it better for me, and for her, that I have coped in so many crises before that I could keep a cool head in that one? I will say this; someone’s got a wicked sense of humour.

If you like, or feel you have been helped by what you have read here, please share it. If you want to see more, why not follow me? Thank you for reading!

Extra special thanks to my sister for agreeing to let me write about this.

 

 

Blood bath ***Caution. Contains graphic descriptions***

There is little more alarming that a spot of blood when you go to the loo, if you’re pregnant. Everybody knows that your periods are supposed to stop, and, although we probably all know someone who has had break through bleeding or spotting early on in their pregnancy, it doesn’t make it any less scary if it happens to you.

The start of my first pregnancy was characterised by several episodes of light spotting. This, although never accompanied by pain (which is the scariest sign of all), was worrying enough to result in two separate ambulance rides (once from work, once between hospitals), a day in a bed on Ward 4, several hours in A&E, three trips to the EPU (Early Pregnancy Unit) and more than one out of hours doctor’s appointment. Hysteria will get you a long way.

My second pregnancy was just as short as the first, but much less bleedy, lulling us both into a false sense of security that the outcome might be better. It wasn’t. So much for that theory.

But, for all of these minor episodes of spotting, nothing could have prepared me for what happened at the start of my third pregnancy. We had gone out for the evening and were in a local pub with friends. I was driving, so no need to fib about why I was off the sauce. I was faithfully taking my cyclogest (progesterone), and was (thankfully) wearing a pad, since that can be a rather ikky, messy business. Suddenly I felt what can only be described as a ‘gushing’ sensation. I excused myself and, upon reaching the ladies room, found that I was covered in bright red, fresh blood from the waist down. I cleaned myself up as best I could and asked a passing friend to fetch my husband. I felt strangely calm and detached. Oh well, here we go again. That’s that, then.

We stood staring down a toilet that looked like it had just played a starring role in a slashser movie, wondering whether to flush. We thought that our baby might be in there, somewhere, but there was just too much blood everywhere to tell. I knew that one of the best chances we had of finding out a cause would be to recover it and have it sent away for genetic testing, but, in the end, neither of us could do it. So we flushed.

If you have suffered a serious bleed during pregnancy, and miscarriage seems immanent, you are advised not to drive (in case you faint). My husband had already had a beer or two and I was the designated driver, but now I couldn’t safely drive, either. A friend kindly drove us the 20 minutes to the nearest A&E and dropped us off.

We waited.

And waited.

And waited.

9, 10, 11 o’clock, 12 o’clock rock.

Having arrived at 21:00, we were seen by the triage nurse maybe an hour later, and I was¬†cannulated. My theory is that they do this so that you can’t escape if you get fed up of waiting the further three hours after you’ve been triaged. Targets met; everyone’s a winner! It was almost 2 am before we were seen by a Doctor, 4 by the time we were discharged.

The whole time we were there (sustaining ourselves on chocolate and fizzy drinks from the healthy choices vending machine, having ascertained that I didn’t need to be nil by mouth), at no point were we offered a scan. We were given an appointment at the EPU three days later. Point 2 of the Mumsnet Miscarriage Care Campaign (http://www.mumsnet.com/campaigns/5-things-that-need-to-change-in-miscarriage-care) states that scanning should be available. The reality is that if you present at A&E with bleeding in early pregnancy, there is a good chance you will be waiting several days to find out whether your baby is alive or dead. It is my strong belief that this fact puts appalling mental strain on women and their partners in a, frankly, oppressive ’12 weeks of silence’ (or is that isolation?) culture. More steam to vent on that one another time!

We got home at about 4:30 am, I emailed work to let them know I wouldn’t be in (and set my cover lessons! How’s that for dedication!), and we went to bed. No alarm clocks. We would deal with the morning in the morning.

Tuesday was spent watching day time TV and eating fish and chips. There was a program about cats on. It was nice. Invariably, when we’ve had pregnancy related issues, it’s felt like all that’s on TV is One Born Every Minute, or a character in a favourite show is getting a scan (Bones, Breaking Bad, Homeland, all had story lines featuring scans right after I’d MC’d). The scan was booked for Thursday. We decided to be proactive so we got up and went down to UCLH’s walk in EPU first thing on Wednesday morning and waited.

There, against all odds, we saw a tiny little flicker of a perfect heart beat; 6 weeks, 5 days.

I believe that we experienced the full range of emotions over the course of those three days. It’s not a roller coaster ride I’d care to repeat.

And I know it didn’t, ultimately, end well for baby number 3. But it wasn’t anything to do with what happened that night. In fact, we were told that the combination of progesterone and aspirin can lead to these kinds of sudden, heavy bleeds. As far as this part of the story goes, it may not have been a happy ending, but I’ll take a happy middling. It’s a close as we’ve got, so far.

If you like, or feel you have been helped by what you have read here, please share it. If you want to see more, why not follow me? Thank you for reading!

It can’t do any harm… the aspirin problem

There is a belief in the Recurrent Miscarriage community (medical practitioners and sufferers) that baby aspirin (75-81mg) can help prevent future miscarriages. The idea is that it thins the blood slightly, meaning that it flows more easily to the uterus, the placenta and the developing baby. This can be effective if the patient has a known blood thickening/clotting issue, for example:

  • the antiphospholipid (aPL) antibody and lupus anticoagulant ‚Äď this test should be done twice, six weeks apart, when you are not pregnant

Antiphospholipid (aPL) antibodies are known to increase the chance of blood clots. These blood clots can block the blood supply to the foetus, which can cause a miscarriage. (from http://www.nhs.uk/Conditions/Miscarriage/Pages/Diagnosis.aspx)

St Mary’s, London, also perform the TEG test (http://en.wikipedia.org/wiki/Thromboelastography), in which your blood is rushed to be tested straight away, while it’s still fresh to check for clotting disorders. I am due to have this test if and when I am next pregnant. If it is positive, St Mary’s will prescribe 150mg of aspirin.

Many people, health professionals and lay people,¬†advise and¬†would be happy to¬†take baby aspirin ‘just in case’ because it ‘can’t hurt’, and, in the months leading up to MMC3, before and during my pregnancy, I took it daily. I know it thins the blood, because at one stage I was covered in it. But that’s another story. I don’t think it did me any harm (except for maybe enabling me to implant a chromosomally abnormal fertilised egg – I wonder whether it contributed to my uterine lining being ‘less selective’). Baby 3 died of Turner’s Syndrome, and nothing on earth could have prevented that (except, perhaps me being 10 years younger!).

Professors Brosens and Quenby at Coventry do not share the view that aspirin ‘can’t hurt’, in fact they argue that it can be a contributory factor in miscarriage because of the implantation problems it can contribute to. Their article is here: http://www.news-medical.net/news/20130117/Miscarriage-and-molecular-signals-an-interview-with-Prof-Brosens-and-Prof-Quenby.aspx

Whilst it does not directly talk about aspirin here, part of their view is that many women with clotting issues mentioned above had perfectly normal pregnancies, so there must be something else going on. I haven’t seen the data, but that’s what they say. Instead, they recommend heparin injections during pregnancy, which they argue are more beneficial in promoting placenta formation and blood flow. I have been prescribed this for next time, also.

So now I am in the difficult position of having two potentially conflicting action plans from two different top RMC clinics, not to mention the reluctance of my GP to order the heparin injections without first referring me to a haematologist.

Lucky for me, it’s a moot point, for now! But I look forward (!) to arguing for my treatment plan with the top RMC consultants in the country the next time I am pregnant. Because that’s the kind of stress I will need at that point in time.

I’m not a doctor, and I don’t know whether aspirin helps or not. But it is clear that the jury is still out, and more research is needed. It may not prove to be as benign as some people think it is. It certainly does help some women, but my worry is that if that isn’t you, it could just hurt.

If you like, or feel you have been helped by what you have read here, please share it. If you want to see more, why not follow me? Thank you for reading!

Dr Google and fixing you in the real world

In February 2013 I spend a very upsetting morning Googling Asherman’s Syndrome on my phone in a hotel room in Yorkshire. It’s not something that I would recommend anyone do to themselves, ever. Yorkshire and hotels are fine, just stay away from Dr Google!

I had been referred back to UCLH for investigations due to my periods becoming very short and light, and I was getting a bit worried that this would lead to implantation problems, and infertility. I had had 3 EPCS and one hysteroscopy, so I wanted to be sure that no damage had been done.

I had been scanned on the Friday and this had revealed that I had an abnormally thin uterine lining (2.2mm, should have been 7mm). Everyone was very reassuring, and I felt that I was in good hands. A further scan had been arranged the following month.

Then I went up on the train to visit relatives for the weekend and stayed in overnight with my sister in a travel lodge. The following morning, I woke up very early and, not wanting to disturb my sister, I started checking stuff out on my phone; what was normal after gyne surgery; how long does it normally take to recover; complications after ERPCs; Asherman’s Syndrome…

Asherman’s Syndrome is a condition caused by gyne surgery and subsequent infection in which scar tissue adhesions grow and fill or block the uterine cavity by basically sticking the sides together. Symptoms include light or absent periods. Worse, one article suggested that the ‘base layer’ could be damaged and the uterine lining would lose the ability to grow. Permanently.

You can imagine that I had self diagnosed myself as incurably infertile by this stage and was beside myself with worry and anxiety.

After having a bit of a word with myself (and a text to tell me that I had used up all of my data allowance on my phone), and a bit of comfort from my sister, I tried to put it out of my mind.

I went back for a follow up scan at UCLH a couple of weeks later (inconclusive) and was booked for another one a couple of weeks later for further comparison. I felt I was in good hands, medically speaking, but I was fast losing hope of being able to conceive.

Then I got pregnant for the third time, and everyone breathed a sign of relief and forgot about the threat of the dreaded Asherman’s Syndrome.

Sadly, baby three was not for this world from the outset, as we would later discover (Turner’s Syndrome; another story for another day). After my referral to St Mary’s, I was scanned and was, again, told that my uterine lining was ‘abnormally thin’. There was also ‘something’ (possibly scar tissue) in there that would need further investigation. Another hysteroscopy was booked for three weeks later. I had gone to that appointment on my own for some reason (there were too many of them, I think my husband was on a course), and I had expected it to be routine, but when they told my that I needed more surgery, I burst into tears. I don’t know what I was expecting, but it wasn’t that. The dreaded Asherman’s was back on the table. The nurses assured me that it was a) only a possibility, and b) treatable, but it wasn’t a diagnosis I wanted to hear.

As it turned out, it wasn’t Asherman’s at all, but a birth defect in the form of a heart shaped uterus. Professor Lesley Regan removed the dividing septum in a straight forward procedure, I was fitted with two coils and given a course of HRT for a month, and I am now (as far as I know) as good as new, uterus wise.

It’s by no means the end of my journey, but it was nothing like as scary as Dr Google would have had me believe. I love information, and do still do research online. But, a lesson has been learned about letting the internet take my imagination and fear to some insane places. For the moment, at least…

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“Today would have been my birthday party”

My husband and I are hosting a cake based fundraising event for Tommy’s, the baby charity this afternoon. (http://www.tommys.org/)

We’re doing face painting and cake decorating.¬†Hopefully it will be well attended and go smoothly. If it’s total sugar fueled chaos, it may actually put us off having kids altogether…!

There will be several bumps and babies, so I’m bracing myself. This (or near enough, date wise) should have been our first’s 2nd birthday party, so feeling slightly emotional about that.

It got me wondering about the significance of dates. 23rd November, 2011 – MMC1, 23rd May 2012 – MMC2, 12th June 2013 – MMC3.

June 2012 РEDD1, December 2012 РEDD2, December 19th 2013 РEDD3. (EDD = estimated  due  date)

The evening that my husband went out to tell his close friend that I had miscarried for the first time, was the same night that his friend wanted to tell him that he and his wife were expecting their second. It’s always strange seeing their son, who will always be the age our first would have been.

I haven’t set this cake event up in memorandum or anything like that. It’s not healthy, I think, to dwell on these things. But I wanted to take a moment, just to think of the 2nd birthday party that never was.

If you like, or feel you have been helped by what you have read here, please share it. If you want to see more, why not follow me? Thank you for reading!

Full time administrative assistant required

I think the NHS is a brilliant institution. I have found, almost without exception, the staff to be kind and sympathetic. OK, so there has been the odd sonographer whose dropped a clanger of a comment (“there should be a baby there”), but, really, who really knows how to do small talk in these kinds of situations?

After my repeat ERPC (Evacuation of the Products of Conception) after my second Missed Miscarriage (MMC), I was so weak, having lost a lot of blood, that a nurse had to hold me up as I nearly passed out in the toilet. The care I have received has been of a very high standard. Not to mention the excellent selection of opiates and the fact that it’s free at the point of care. I am very happy to live in the UK, and to have access to such services.

The admin, on the other hand, is sometimes, frankly, bonkers.

Point 5 of the Mumsnet Miscarriage Code of Care (http://www.mumsnet.com/campaigns/miscarriage-code-of-care) is joined-up care. Three times I have had to text the community midwife to say that I will no longer be needing her services. Three times.

To be fair, most of my hospital notes have been sent on to my GP. UCLH (http://www.uclh.nhs.uk/ourservices/servicea-z/wh/gynae/gdtu/Pages/Home.aspx) is particularly efficient, always writing up the letter whilst you are there, giving you one copy and putting the other in the post. Most of the info from clinics at local services got to my GP, too.

Sometimes letters arrive months after the appointment has taken place (I apparently had low vitamin D in October 2013, and got my results letter in March 2014). In one spectacular admin triumph, I once received 4 identical copies of the same results letter from St Mary’s, London.

After MMC 3, I wanted to be referred to St Mary’s without delay, because I knew that there would be a wait, and I wanted to get on with it. It was not a problem to get my GP (who is excellent) to agree to refer me, but the system just couldn’t cope with a non-local referral. After several letters asking me to choose one of four local hospitals and a lot of emails and phone calls, I finally got my St Mary’s appointment. But I had to work hard to make it happen in a timely manner.

My (and Mumsnet’s) point is this: women after MC are traumatized and vulnerable. They do not need to spend weeks/months researching their options, making phone calls and chasing emails. They shouldn’t have to call local services to tell them that their baby has died, and they certainly (and I am so lucky and glad that this has not happened to me, but I know plenty of women to whom this has happened) should not have to suffer reminders about routine scans. Sometimes it seems that the NHS grinds under the weight of its own admin and procedures. Individuals are lovely, but the dots don’t join up.

What I can tell you is that, at the moment, if you want joined-up care, you’d better get ready to be your own secretary until it’s sorted. Chase every results letter, ring and confirm every appointment. Find out the names and numbers and email addresses of every consultant’s secretary. Be the squeaky wheel. You may wait a long time, otherwise.

If you like, or feel you have been helped by what you have read here, please share it. If you want to see more, why not follow me? Thank you for reading!