I’m going to start with how I was diagnosed with systemic lupus erythematosus (SLE). I started having sore pains in my shoulder in October 2014, I was still in my final year at high school doing GCSEs. My mum had phoned my GP asking for some blood tests to try to pinpoint what could have been wrong. They all came back normal, apart from one that had come back showing inflammation, but they couldn’t tell where it was coming from.
My pains gradually got worse and worse, to the point all my joints were inflamed and partly swollen ankles especially. I kept going back and forth to my local hospital as the pains were strong joint pain and all they gave me were anti-inflammatories such as ibuprofen and then co-codamol which took a slight edge off the pain. It eventually got to the point I kept going to the hospital and my GP so much they took another few sets of bloods to try pinpoint the inflammation.
My GP then sent a urgent referral for me to be seen at Musgrave Park Hospital. On 17th November 2014 I was given the diagnosis of lupus and I was handed leaflets and books about lupus from the consultant Dr. Rooney. I, my mum and my dad had never heard of lupus or what it even was, never mind symptoms etc! I was put on a good few medications such as prednisone (high dose), bisoporol, mycophenolate mofetil, hydroxychloroquine and a few others.
They worked until in May 2015, my consultant at the time rapidly reduced my steroid dose from 8 to 2! Because it was a rapid drop it caused me to flare up. On my mums birthday 28th July 2015, I had a massive seizure in the kitchen while mum had turned round and got the butter from the fridge for the potatoes. My mum got me on the floor into recovery position until the ambulance service came and I had a seizure in front of them. They had to put me into an induced coma to settle the seizures as well as, hopefully, the lupus.
I was rushed to my local hospital for a few nights and then the royal Victoria Hospital ICU for a few nights, then switched to Belfast City Hospital ICU, where I kept having seizures, even though I was in the induced coma. I woke up a few days later to find all these machines attached to me. I was shell shocked to just how many were linked to me... think there was 8/9 machines hooked up, as well as a dialysis line in my neck to remove waste toxins from my body and put the clean blood back in due to my kidneys failing with how high my blood pressure was (220/118).
They had removed 20+ litres of fluid, from my body at this point. I was then moved onto ward 11 north from ICU in the middle of August to the end of August/start of September. I was out a few days until I ended up being admitted back in with severe pancreatitis. Which my consultant described as ten times worse than labour. It was that severe that I had to have a chemo drug called cyclophosphamide, which made my hair fall out in massive clumps. I was still going for dialysis at this stage (3 days out of 7) and they put two drains in my stomach to drain the pancreatic cysts on my liver. When I had the cyclophosphamide drug my mum and dad had signed the form for it as it was that powerful of a drug to try settle the lupus. They were told if I was to have my own kids in the future, I’d either have a high chance of having a still born, a miscarriage or not be able to conceive at all. Which at the time they didn’t tell me, (they told me when I got out of hospital and was starting to get more stable).
I was in ward 11 north from the middle of September to the 23rd December 2015 as I still had the protein in my urine, the drains in and having the dialysis to try mend my kidneys. At the start of December, I took a massive turn for the worse which shocked everyone, it had turned out to be fluid up around my lungs and was heading towards my heart... so I was back to ICU for a few days with multiple machines in attached to me again. They had removed 13 litres of fluid of me that time while I was out cold in ICU.
They had millions of things in my body such as dialysis tubes, a Catheter, heart monitors, Cannulas and picc lines. Everything seemed to settle when I was on ward 11 north to around the 20th December where I started begging to get home for Christmas... a bit of reality and to have family around you... at the point I got a big infection which caused me to overheat and not be cooled down no matter what they done (fans, no blankets, windows open, door open and room temperature at cool) but luckily it settled by the 23rd with IV antibiotics and they let me out just in time for Christmas. The nurses arranged for me to come back up on the 27th December for a check up and to see how things had got on at home and reassured me that my bed was still there incase anything happened between times.
I finally got discharged as an inpatient on the 12th January 2016, I had waited so long for that day to eventually come. I was still attending the renal unit for the dialysis 3 times a week till the October 2016, to where I was told by my consultant that my kidneys started to look as if I was going to need a kidney transplant as they were showing no signs of improvement and this was a after a year.
My consultant Dr Hanko told me to ask around family members and friends to see if any would get tested to be a match. Meanwhile on dialysis my consultant reduced me from 3 days a week to just 2 days a week, we did that for a couple of weeks then reduced to 1 day a week, then stopped it and then only going for fluid removal a few times up till January 2017 due to me putting on weight and them not knowing where it was coming from. At this stage I was still being given Rituximab every 6/7 months, I had the last dose of it in the October 2016.
In February 2017 I had a clinical psychologist appointment with Rosanna burns, this was referring to my severe needle phobia. I couldn’t bear the sight of a needle due to everything previously stated. It brought back bad memories for me such as if I get this needle will it mean it’s for long term? Will it mean I’m going back into hospital? All those sort of if’s and why questions. She worked and worked with me even through the time I was in hospital but this appointment was linked to the needle phobia and to try find a method to cope with it to get my dialysis line eventually out for good.
Dr Hanko had said if I can tolerate bloods then the line would have no purpose being in and would be a risk of infection, and with my immune system being so supressed with drugs, it was so un-needed. So the appointment came and went well, and the following morning, Wednesday I woke up in severe pain and it gradually got worse and worse. So my mum decided to call the out of hours doctor that night at around 9pm or just before it and they said with my previous medical history to go straight to the royal A&E. He had mentioned kidney stones or the pancreatitis coming back as he had heard me gurning and screaming in the background. My dad had rushed me down to the royal A&E they saw me straight away but wanted to get bloods done and due to the needle phobia at the time I couldn’t so the nurse had asked to go and speak to the sister to see if they could use my dialysis line to get bloods. By this stage I was constantly running back and forth to the toilet (was on fluid tablets at that time) so I thought it was completely normal, my body was just getting rid of the water that was un-needed.
Meanwhile I noticed this spot of blood and I knew it was unusual due to the medication I was on which caused me not to have a period at all so the sight of blood was alarming. I had mentioned it to them and they noted it down. Whilst I was waiting, I was walking back and forth doubled in two with the pain and feeling that I needed to pee again. I went to the toilet as normal and was ready to come out when I got this sudden urge to push, which I found very very strange. I went back into the cubicle and pushed and my little boy was born! He was born in his amniotic sac into the toilet, let me tell you it was a massive, massive shock. I gasped that loudly the girl in the next cubicle asked me if I was okay. I replied “no not really, can you go get my dad and a nurse/doctor ASAP”
Thankfully in the space of clicking my fingers a nurse was there and had asked what was wrong? I had told her that there’s a baby in the toilet and I haven’t a clue how it got there. A male doctor came rushing in and lifted my little boy out of the toilet and shouted straight to resus. I was overwhelmed with shock I hadn’t a clue what to say or do, so they wheeled a bed round for me and took me to where my little boy was being checked overcongratulating me on the fact I had now a son.
It didn’t hit me till they placed him on my chest! That’s when it sunk in, but it still took me two days to name him. I wanted a name with meaning as he had been through so much before he was even out of the hospital, neonatal, high dependency and special care then moved to the Ulster to stabilise his feeds. He was then named “Ethan Darren Green” Ethan means strong, Darren means great, Darren also was my beloved late uncle that passed away with terminal cancer so it was very symbolic for me as well as my family. He weighed 4lb 14oz. It was the perfect name and weight for a perfect strong little boy. He was in a week and a half and managed to get out by the 1st March 2017.
In November my consultant had mentioned getting the line finally out as I was able to tolerate bloods so on the 18th January 2018 I got my rituxamab put through the line and then it was taken out!! *happy days, never thought that day would come*
Everything had been going fantastically until December 2018, when I found out I was pregnant again!! I informed my mum and dad a few days before Christmas Day and then my consultant once I had my 12 week scan, I’ve been having regular check ups with the midwives and consultants in all hospitals and been extra careful when it comes to medications, Dr Hanko had sorted them to safe medications to take while pregnant.
I’m now 35 weeks pregnant, I know it’s another boy and I couldn’t be happier! I’ve got to experience it this time and feel kicks etc (the stuff I missed out on with Ethan).
The main point of me getting my story out there is, with a bit of hope and positivity, you can get better. You can have children, you can have a normal life even with lupus! Some people think it’s the end of the world but that’s only if you think it and believe it to be. Lupus doesn’t define who you are but it makes you be the person you are today, whether that’s believing it’s the end of life as we all know it or whether you stay positive and fight it till it knocks back and goes into a box, that’s your decision but remain positive and have hope within yourself!! 💙
I hope my story helps one if not more people to believe there is hope out there with people with lupus! Thanks for reading my story and taking the time to read this far!
May 2019
