Thursday 19 February 2015

Great Expectations

July 2014

The first thoughts that spring to mind as I begin this post is my husband, you see, I havent forewarned him yet that i'm writing such a post.. and then of course is the thought that the subject is deeply personal, and a lot of people wouldn't even consider publishing such a private matter. But this blog was always designed to be brutally honest and talk about things that so many people like us are thinking and feeling but feeling like they are the only ones doing so. I consider it a moderate insight into our privacy, a sort of airing your clean instead of dirty laundry in public  The subject of course being the ever dominating topic of babies. I have talked openly before about our situation when it comes to having a family. But ever closer rolled the time where we made that scary joint trip to my consultant to talk through the options. With lupus a lot of pregnancies go head quite healthily and normally with additional supervision and support. But when you've had complications like mine, the process is complex and classed as high risk.
As the months have whizzed by this year, that moment seemed so very far away and not an inch closer, even with the date for the doctors appointment marked in my diary and visible with barely few flicks of a page, it seemed a million miles away and completely alien to us. But soon enough we were walking those hospital corridors and reminiscent of of Oliver Twist, were asking.. 'please sir, can we have a baby.'

Our journey here has been heartbreakingly long, a punishing trek through obstacles unfairly put our path. And yet we are realistically prepared that there may be many more to come. I envy those who are simply able to make that choice to try and get pregnant and can do so without anything more than your average pregnancy concerns. I am now faced with a multitude of risks and months of preparation health wise before the time is right. It is this, this removal of freedom, that is one of the hardest things I find about our circumstances, the inability to make our own choices, abide by certain rules, restrictions and wait for somebody elses say so.
The enforced sentence of time has given us the advantage of planning, building foundations and readying ourselves for this next chapter,  we feel so confident and ready and yet as the time encroaches, so drastically unprepared and terrified.
We inevitably walked those pristine corridors back in June, hands grasped tightly and with butterflies in our stomachs we perched on the edge of our seats in my consultants room and spoke those words. Only prompted by my doctor himself when he uttered a sentence I'll remember forever.
"You look like you've got something to say?"
And so began the team of changes that would need to be made, including discontinuing 4 long term medications and replacing to them with (more) pregnancy safe alternatives,  then the addition of 2 further medications on top. And then the wait. Do not try to get pregnant for 3 months. Torture. But due to the nature of my immunosuppressive drugs, and their highly toxic nature, it takes 3 months for the be safely out of my system.. it's like being handed your birthday present early then told you can't open it for months. 
But it turns out those months have been beneficial for several reasons that came as a surprise!

- You will feel like shit warmed up whilst changing over whilst trying to work full time and convince EVERYONE nothing unusual is going on.
- Feel like your at the mouth of hell with the withdrawal from the old meds.
- Shake like a shitting dog on the new blood pressure medication and watch in horror as the readings rage higher and higher trying to stabilise.
- New meds wipe out your sex drive faster than a glance at your Nanna's fungal nail..

February 2015

That was 9 months ago, and I write this post as I wander bright eyed and hopeful into the 19th week and second trimester with my wonderful little miracle.  The draining lull of nausea, that at your best makes you feel like you're sitting in the bottom of a u-bend if not staring one in the face, is gradually easing, the fatigue is holding fire until 3.30pm, not making me feel like I could snooze in the stockroom at work by lunchtime but strong enough to make me feel about 90 years old.
I can't help but feel as I creep through into these important weeks and my first trimester sits happily belted in the back seat,  that I want to keep track of how my pregnancy and lupus coexist. I'm already writing a diary of more daily and weekly experiences but I wanted to reflect more closely each trimester, on the unlikely pairing of lupus nephritis and pregnancy. Hopefully I can pick out the winning and losing moments of each, it'll be an usual match mother nature vs mother nature?

So for the first trimester...

I found out I was pregnant on the 8th of November after only our first month of properly trying. It had been a dreadfully stressful week at work and I'd consumed several large glasses of red wine in the days prior. I got a positive on a first response (fabulous invention) the day before my period was due as I'd felt different for a about a week (a weird aversion to pork stroganoff and very sore boobs) but it was an elevated temperature and three nights of throwing the bed covers off feeling I was being roasted alive that saw me rummaging in the bedroom draw in pitch black at 7am while Mark snored his head off.
A keen bean I may be, but from as early as three weeks pregnant something felt different. Us lupus patients, especially those among us who have been through the mill, are finely attuned to any remote change in our bodies, like a police dog that can sniff out the smallest of wrong doings, we are exceptionally alert to something unusual that our bodies may be doing. It comes with practice, endless GP and hospital appointments, in-patient stays, conversations with those similar to you and overall experience, but our early warning systems turn red much quicker then most other people.
Regular followers of my blog will be aware that the main issue with me is my kidneys, lupus ravaged and half functioning, pregnancy puts me high up the chart for early onset preeclampsia, premature birth, low birth weight and slow growth (poor quality placental function due to the nature of my disease) further kidney damage or failure,  high blood pressure, stillbirth or maternal fatality. Eeesh! Very scary, the educated words of my high risk OBGYN. 
But i'm reassured i'm in the best hands with a renal team watching me and a obs and gynae team looking after our little jelly baby. (We had a scan at 8 weeks and our little bundle looked like a little jelly baby sweet- just in case you were wondering)

I've instantly gone into maternal mode and worrying every second for the health and survival of this Mango sized little miracle, clinging on despite all the medication. My husband, Mark, on the other hand worries frantically for the safety of his wife and goes various colours of the rainbow at each hospital appointment. His worries are frighteningly justified, there is an awful lot that could go wrong, and things could happen to me that aren't worth contemplating. There have been a few hairy moments already, it took until about 14 weeks to get my blood pressure stable plus the brutally honest opinion of my obstetrician, who's reality checks are more TV worthy than this year's celebrity big brother offerings.. but I trust her with my life, even when she does tell me I might not make it to 30 weeks pregnant. Each week is frightening alas the end of every one is a victory in itself. But who wants to spend their life wondering what if.. if they never even tried.

I'm currently doing well aside the fatigue, I think i'm one tough old bird. My area manager at work even said "you're pretty much made of steel aren't you? Lupus, half working kidneys working full time and now you're doing it whilst pregnant"
It's not at all easy, I just consider myself thick skinned, I have a much higher tolerance for those tired moments, aches, pains and sensations of nausea. Lupus and kidney disease has given me the opportunity to develop coping mechanisms, I am forewarned and forearmed and ready to see who wins.
Like somebody elses reality, you are living and breathing each moment wondering with all hope in the world, who does this life belong too, because I never thought it in my wildest dreams, it would be mine. And I'm loving every minute.

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