Lupus #10 Second trimester

#10 Second trimester

Hello again, and happy 2018! 

I realise it has been a good 3 months since my last post, things got a little hectic at work, and I was too tired to do anything after. I have finally started my maternity leave so I will try to dedicate more time to this blog!

Currently I am well into my third trimester, 32 weeks + 4 days to be exact. Time is flying by, I think it’s time to update you all on my second trimester, it’s been an eventful one! In my last update, I spoke about my right sided chest pain which i’m happy to say that it has completely cleared up, thankfully. Now I wanted to speak about something else that has been going on…

Since becoming pregnant, I have always tested positive for protein and blood in my urine (also known as Proteinuria and Hematuria). This is a sign that your kidneys are not functioning properly, that you may have some sort of kidney disease, and that it is allowing this leak to happen. First, let me say that before pregnancy, I ONLY had Lupus SLE, and never had protein or blood in my urine tests or problems with my kidneys. The only internal organ affected in the past was my heart. 

At the time, I didn’t know what this meant and so was not very concerned, I was referred to a nephrologist who I had my first appointment with at 14 weeks of pregnancy and attended with my mum. I didn’t think it would be anything too serious, which is why I didn’t bring my partner with me… boy was I wrong! The doctor sat us down, and that’s where it all becomes a blur. We were given a lot of information, facts and outcomes of what could happen in one go (that we were not expecting to hear)… there was a lot to take in. He explained the situation, that the leak is a sign that my kidneys are not functioning properly, from his experience in pregnant patients this only gets worse, especially after week 24. He also explained that kidney function levels cannot rise, and it can only deteriorate for any person, if my kidneys do deteriorate then eventually I may need to go onto dialysis which means a daily visit to the hospital to be hooked onto a machine to help filter my kidneys, and if things got a lot worse than perhaps even a kidney transplant would be needed. By this point I was already light headed with all of this information to take in. The worst part… because I was pregnant, there was nothing they could do to treat me, as any treatment for the kidneys would have a huge effect on the baby. I had two options, 1) Terminate the pregnancy – which I declined immediately. Why? Because I believed that I could get through this, and that my body was stronger than this, also…I want children, so if any time is best it would be now as I am at my healthiest and fittest now than I believe I would be in the future.  2) My second option was just to carry on, and hope for the best. There was nothing the doctors could do to help, except to keep a very close eye on me. We went home that day very worried, I didn’t even know how to tell my partner as I just didn’t have the words for it.

As of September 2017, I have officially been diagnosed with Lupus Nephritis. There is nothing glamorous about this, I have to pee in a bottle over a period of 24 hours every month so that the protein and blood levels can be checked and monitored to look for any trends or spikes in the count. I have blood drawn every 2 weeks to keep an eye on my kidney function levels (that parts not too bad, i’ve gotten used to having my blood taken over the years). Because of this I am also on – my most dreaded medication – Fragmin injections. I read so much about them online before becoming pregnant, everyone said that they sting like crazy, and I’m here to shed the light: Yes it does sting like crazy! I went completely white, and almost fainted the first time, as it was my first time injecting myself, and the sting itself was strong and lasted a while since my body was not used to it. It has gotten easier over time, but it’s still not something I look forward to surprisingly. The injections are a blood thinner, to reduce the chances of a clot forming, it must be taken daily up until 6 weeks after birth – owchy! However, I am currently 32 weeks, and I am very happy to say that everything kidney related has remained relatively stable at around the same levels as I was in week 14, so far so good! 

I am under 3 specialist teams who have all been amazing: my usual rheumatologist, who deals with all things Lupus, the Fetal medical team who deal with all things baby, and my nephrologist who deals with all things kidneys! They each individually have treated me so well and been extremely thorough in their work. Not only individually, but together as 3 separate departments they also manage to communicate and work well with each other, make decisions on what’s best for me and the baby, balancing the pros and cons of the next step to take from every aspect. I guess there are pros of having Lupus, I get regular updates, and scans every 4 weeks to make sure the baby is doing well. Everything seems to be going well so far.

Last updates: Baby is doing awesome, averaging in the 10th percentile (so a little on the smaller side) with chubby little cheeks. I myself feel fine… tiredness, shortness of breath and struggling to manoeuvre is getting worse as i’m just huge now and there’s just no space left! I have had bad hips since very early on in my pregnancy, this has only gotten worse – but it’s manageable. All in all, I’m happy with the way things have worked out so far. Birth plan – I got my induction date, only 5 weeks to go before the little pod arrives! The reason for being induced is so that they are able to ensure I am monitored properly with continuous electronic fetal monitoring during labour due to the higher risk of fetal distress and labour related complications in women with Lupus and babies who are small for their gestational age. It’s good to feel looked after, big ups to the NHS!

I guess all that’s left is a bump photo, here I am at 32 weeks with my bowling ball!  

This baby is getting big!

 Much love to all xXx

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Emma Hayes

There I was in a hot yoga studio with plenty of bright natural light and bending myself into pretzel like positions for the very first time.

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