HELLP Syndrome Part 2

Following on from HELLP Syndrome Part 1 (This is part 3 of The Gory Birth Story!)

Whilst I’m not entirely sure what day I had the first blood transfusion (I think it was day three), I remember the panic surrounding it. Doctors, anaesthetists, consultants and numerous midwives kept coming in to ask me questions and several phone calls were made to the lab.

I’m sure there are a few of you thinking… “how can she be allergic to blood?”, well, I’m not really sure how… but I am! My body doesn’t tolerate other people’s blood very well. How do I know this? Well let’s cut a long story short… I had Acute Lymphoblastic Leukaemia as a child. I was eight years old when I started treatment and ten years old when I finished my Chemotherapy. After having my very first ever blood transfusion, I broke out in an itchy rash, head to toe. I also had a very low Platelet count at the time, which meant every single spot in this rash, filled with blood. The doctors had never seen anything like it before and medical photographers were sent out to photograph me. I vaguely recall sitting in just a pair of pants shivering whilst they took close-up photos of my entire body. It wasn’t great, but I was glad to help with research. I’m also allergic to platelet transfusions!

Anyway, the long and short of it is, anytime I have a blood transfusion, I must have steroids and anti-histamines first and I have to be observed for the first half an hour. I guess by all the fuss, the questions, the different people checking on me, that this may have been a first for the delivery suite. Clearly my allergy is not a common one! To be on the safe side, they took the decision to order me “irradiated blood” from the lab. This means radiation is passed through the blood to prevent the white cells (lymphocytes) from dividing and causing harm. Irradiated blood is not a common request and it takes the lab some time to treat and prepare it. This caused numerous phone calls back and forth with the lab demanding to know why I needed it!

Eventually, I was given the steroids and antihistamines and they connected up the blood. Whilst wiping away my tears, holding my hand and trying to reassure me that I’d be okay, they watched me with bated breath as the transfusion started. If you haven’t sussed it from reading my blog, I can talk for England… and even more so, when I’m worried or nervous. So the mindless chatter began and before I knew it, twenty minutes had passed… and I was fine.

On day 4, after very little sleep, we discovered that despite Fluffy looking yellow, it was actually Tiny that was Jaundiced and she needed a Billi Blanket. The blanket was put up the back of her babygrow and she lay on it for 8 hours. It emitted a funky bright blue glow and combined with the massive tube coming out the top, I joked to hubby that she was our ghostbusters baby! Ultraviolet glow aside, the babies were doing really well except for a bit of yellow vomit after their feeds, which the paediatricians weren’t concerned about . It was bright yellow because my milk hadn’t come in yet and colostrum is yellow.

They told me my milk wasn’t likely to come in while I was poorly as my body’s primary focus was basic functions and recovery. This disheartened me but the babes were quite happy breastfeeding my colostrum and having formula top ups. They were so tiny that their feeds were only 20-30mls at a time, but they were doing well.

I however, wasn’t!

1:27pm “It turns out I’m not recovering as quickly as I’d thought, Going to be in HDU a while longer. I went downhill again last night and I’m a mess today”.

2:40pm “I’ve gone from fully tandem feeding the twins all night to a day of morphine, tramadol and screaming in pain while they cup feed the babies,  with formula. My kidney is agony and my liver is still not functioning. I’m passing blood clots, I’ve not had any sleep, I’ve got chills and a temperature, I’m back on antibiotics, having scans, an ECG, and loads of tests. I’m scared and upset”.

I’d had this sudden kidney pain kick in. I don’t know where it came from but it crippled me. I literally could not move a muscle… I was bed bound and delirious on painkillers which barely took the edge off the pain. The HOT  doctor, examined my kidney and as soon as he touched me, I swung for him. I didn’t mean to, and luckily I managed to stop my hand just before it hit his arm; but it was a reflex because that’s how bad it hurt.

I was in so much pain with my kidney that I literally couldn’t move an inch. I couldn’t hold the babies, I couldn’t sit up, I couldn’t sleep, I could barely breathe. I was on high doses of morphine but it wasn’t touching the pain. So they decided to try some different painkillers and gave me Tramadol. Well what can I say… I will still in pain but Tramadol really took the edge off. It was like a miracle cure and I felt so much better that I was actually able to get an hour or two sleep.

Despite the drugs, I didn’t get much sleep. I had a lovely long chat with my midwife though. She was the same age as me and I’d been lucky enough to have her three nights in a row. At 1am, she went quiet and looked at me thoughtfully. She told me she thought I should try to get out of bed and that she’d help me…  IT…. WAS…. AGONY! I moved at a rate of about an inch every few minutes. With a lot of help, I got to the edge of the bed. I tried to slowly ease myself off the bed, let out a loud “AAAAGGGHHH” sound and nearly collapsed with pain. Little by little, with a lot of encouragement and physical help from my lovely midwife, I got to standing position. It had taken about half an hour but after being bed bound for so long, it felt like such achievement.

My midwife suggested her theory to me… That it wasn’t my kidney that was hurting, but something muscular where I’d been bed bound for so long and something had got trapped or ceased up. It seemed much more likely to me, than a kidney infection. I was used to kidney infections on a regular basis, but this was different. So we had it in our heads that if it was muscular… movement (no matter how painful) might be a cure. With this in mind, I was given Buscopan (a muscle relaxant) and Ibuprofen on top of my Morphine and Tramadol. I was also taking at the time… Iron tablets, antibiotics, Paracetamol (for my fever), laxatives (to counteract the constipating effect of Iron tablets) and antihistamines (for my itchy skin). I was taking my nine drug concoction all in one hit and shocked to be told by several consultants and midwives that it wouldn’t affect my breastmilk!

(Here’s 7 of the 9 different drugs I was taking!)

I stood there stark naked in a starfish position while my amazing midwife gave me a wash. Whilst I loved every single one of the midwives that had been caring for me, she was the FIRST midwife to offer me a proper wash since I’d been in hospital. I smelt and felt disgusting and I can’t begin to describe how grateful I was to her for not only doing that, but for offering. Despite how ill I was and the fact I’d only managed about ten hours sleep in four days, I actually felt overwhelmed, almost euphoric (maybe it was the drugs). I remember standing there in pain, feeling that despite this tough, lonely, dark and terrifying ordeal I was battling in hospital, I had found a considerable amount of happiness in something so trivial. Standing up and being clean. That, kind of, puts life into perspective!

 On day 5 I sent hubby the following text message:
“Babe I’m really scared. I have passed two enormous blood clots. They’ve told me not to worry but they seem really concerned about it. I’m worried I’m still losing too much blood. I’m also scared for when the central line comes out of my neck and I’m also scared about this special Iron transfusion they are planning on giving me”.

My stomach was distended, I was bleeding a lot and passing blood clots the size of my palm. I remember a lady doctor giving me an internal and scooping out some more blood clots before I had a scan to check there was no placenta left inside me. One scary person even mentioned if there could have been a third baby that had failed to develop. Luckily this wasn’t the case. My catheter was corked so my bladder could fill up and I was wheeled down to radiology on my bed as I couldn’t move. The pain I was in, somewhat hindered the scan, as every time she tried to touch me I flinched in agony. I’d been looked at by another doctor who confirmed that it was “Muscular Skeletal something-or-other”, as opposed to a kidney infection, which was quite a relief. Then she asked us to empty my bladder… which wasn’t possible as I’d been corked. So the scan wasn’t a major success but we were told there was nothing unusual seen in my womb, although it hadn’t contracted down very much yet. (5 weeks later I would find out there actually was still placenta left inside me).

With the help of my nine drug concoction, I managed to get out of bed again and I even managed to go back to breastfeeding, but I by no means felt well. I was in a state of panic and crying constantly. I was told the central line might be able to come out later, which frightened me as it was connected to my main artery, but also because I thought of it as an emergency lifeline. If anything went wrong – that was the doctors’ best access point.

My hemoglobin had dropped again and I was severely anaemic. They wanted to give me an Iron Infusion, instead of a blood transfusion. Iron infusion would begin with a 15 minute “test dose”, then all being well, would continue. This shook me up. In my mind, if something needed a test dose, there must be a high incidence of people reacting badly to it. I spoke to countless doctors and specialists, but I was still terrified of it going wrong. I kept thinking “that is it, that is the thing that is going to finish me off. I’m going to react and it’s going to kill me”. I just couldn’t get those thoughts out of my head. Every instinct I had, was telling me not to have the iron infusion and I couldn’t explain it. It was a gut feeling.

After trying to be brave via text to my mum, she called my bluff and knew how scared and alone I was feeling. The midwives had witnessed me sob, several times, “I just want my mum”. I was used to having my mum when I was in hospital, that’s how it worked when I was a kid… I went in… she went in! But I was 26 now and she lived a two-hour drive away. She dropped everything and came anyway.

You’re probably asking, where is my husband in all of this? He came to visit at least twice a day, bringing me all the things I needed. Emotionally he was my rock. But he also had work and Bunny. In addition to that… I knew he hated seeing me in pain, he doesn’t cope well with hospitals and he hated feeling helpless. Deep down I think he must have been as scared as I was, but he was the man, he wasn’t allowed to show his fear, as it was down to him to keep me sane, keep me positive, keep me fighting. And sometimes, a girl just needs her mum.

After cuddles and tears with my mum, and more chats with the consultant anaesthetist, I decided to decline the iron infusion. I just couldn’t do it. He told me that this would mean taking iron tablets for a few months and that I would feel weak and not myself, for at least six weeks. I was worn down and broken and too frightened to go through with it, so I resigned myself to this safer, but slower recovery option.

Hubby took the night off work to spend time with me. As I wasn’t having the iron infusion, my central line was taken out. I had to lay flat and keep still and breathe only when told, whilst my midwife cut the stitches, pulled them all out, then pulled the line out of my vein and put pressure on my neck. I was crying and scared… as I seemed to be about every tiny little thing by now. The midwives probably thought I was either a total coward or a fruit loop. They took both the canulas out of my arms too. I had track marks up my arm where one of them had been in way too long.

I didn’t feel ready by a long shot, but at 10pm that night, they moved me out of the high dependency unit, out of the delivery suite and onto the maternity ward. Due to the combination of being so poorly, and having twins, I was given a side room on my own, which I was elated about. I’d been really dreading the thought of sharing a ward. I needed to work through my recovery and get to know my babies alone.

If you thought that was the end of my ordeal, you’d be wrong. We’re now on day 6… I was in hospital for 10 days! To read the final part of my birth story, Maternity to Neonatal, click here.