Going Home…Then Back Into Hospital

My little munchkin!

My little munchkin!

If you haven’t read my last post, this one probably won’t make much sense so why not pop over there and then come back?

Both myself and Alexandra were discharged from hospital and we came home and started to try and settle into some form of family life. However, I was massively struggling with my breathing and it was taking me about ten minutes just to get up the stairs, stopping about three times on the way. I was sleeping sitting up, propped up on loads of pillows, and I just couldn’t do anything without getting massively out of breath. I managed to get out a couple of times but it would completely wear me out and sometimes I was spending most the day in bed. I wasn’t really enjoying being a new mom in the way I should have been because it was so hard for me to do anything with Alex and, although we had some lovely times like the visits from family and friends, it was quite tough. Dylan was struggling too as he was trying to work from home but would end up doing most of the care for Alex day and night, as well as trying to look after me.

After two weeks at home, the day Dylan went back and worked in the office for the first time, my breathing deteriorated further and that evening he called NHS111 who sent two paramedics round who took me into A&E. I spent a few hours in there being assessed and had another x-ray before eventually being transferred to the respiratory ward. The same ward I’d battled not to end up on without my baby, and just two weeks later I was there. Much of my memory of my two weeks on the ward was completely gone, but I’m now getting back bits of it. I can now remember the layout of the ward, what my room looked like and a few of the staff, as well as some of the moments on there. From what I’m told I was really low for some of my time on there and was really struggling with having so many cannulas, blood tests and other procedures – to the point where I was constantly asking why if I was told I needed something else doing and I managed to persuade them to give me tablet forms of the antibiotics I was on for a couple of days until my condition worsened again.

Things just weren’t getting any better, quite the opposite in fact. I ended up being moved to the intensive care ward (ITU) and was sedated and on life support. Some of the doctors were convinced I had lupus but the tests came back negative. Around this time a condition called anti-phospholipid syndrome was mentioned but the feeling was still that I had lupus. Dylan did a lot of research and looked at the symptoms of both, becoming more and more convinced that it was APS. Meanwhile my kidneys had stopped functioning so I was on dialysis, I was having lots of blood transfusions, I had a chest drain in taking away all the fluid and they were seriously concerned about my heart.

A few days after I’d been moved to ITU the diagnosis of APS was confirmed. Essentially it’s an autoimmune condition where the blood becomes too sticky, it’s not hugely common but some people have it and don’t know about it. Women with the condition have a much higher chance of miscarriage or stillbirth but even then it can go undetected. There is also a much more serious variant of the condition known as catastrophic anti-phospholipid syndrome (CAPS) which can be triggered by a number of things including pregnancy and infection. This is what I’d developed and it meant my body was now producing blood clots in my organs. CAPS has a 50 per cent survival rate (although study samples are always very low because it’s so rare) and the hospital I was in had never seen a case of it before. One doctor said the odds were ‘stacked against’ me and others warned because of my multiple organ failure that things were not looking good at all. The only positive at this point was my age, my family were told had I been older I wouldn’t really have had a chance. Also they knew I had some brain function as I had reacted to a couple of things while under sedation, although it wasn’t known how lucid I would be or whether I would even recognise my family and friends.

Because of the rarity of my condition, there are very few experts in it but luckily there were at the Queen Elizabeth in Birmingham, just an hour away. There had been talk of transferring me there for a couple of days but numerous concerns were raised including the possibility that I was too ill to even make the journey. Eventually the QE agreed to accept me on their ITU (the largest in the world!) and I was prepped for the journey. The preparation took about five hours and I had to be paralysed for it.

My next post will be about my recovery in Birmingham, so pop back soon to read it!

Harriet and Alexandra x

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