Ciara's Story (Aug 11, 2013)
It was Christmas 1999 and I was 17 years old when I began to feel very unwell. I was vomiting and I was so weak (my haemoglobin was at 2, normal range is 12) when I was eventually admitted to hospital. Once admitted I had to receive 8 units of blood into my system.
The scary thing was that my treating Doctors didn't know what was wrong with me. They were in contact with a Doctor in St. James’ Hospital via phone when I was finally given a diagnosis of Haemolytic Anemia.
I was eventually allowed home after 2 weeks on a high course of the dreaded steroids. I was in total denial that I was sick. I went from being so healthy to barely being able to look in the mirror as I found the change in my body from the medication devastating. I just couldn’t believe this was happening to me. I stopped taking my steroids most days as I couldn’t handle what they were doing to my body… that’s when I became even sicker. I began to get joint pain so severe that I couldn’t walk, there were times I had to crawl up the stairs and come down on my bum because my knees and knuckles were so inflamed and sore. I was in and out of my local hospital (Sligo) nearly every week, they were testing me on different medications but still I wasn’t right. They admitted me to St. James’s Hospital and I was eventually let home after a week. I was still being treated with Hameolytic Anemia and still there was no sign of Lupus.
I went for my monthly checkup in St. James’s and my usual bloods were taken. It was at this time that the consultant said to me “You have Lupus”!! I just looked at him blankly…confused. He then told me he was transferring me to his Wife who is a Rheumatologist in Beaumont. I have been attending her ever since.
Unfortunately two days before my leaving cert exams started in 2000 I ended up getting a clot on my lung, the thumping pain was so unbearable…still in denial I sat awake all night saying to myself “it’s just the thought of your exams”. That morning I could not stop throwing up and again I was admitted to Sligo where my test came back positive for a clot on my lung. I have been on Warfarin ever since and I will be for the rest of my life. I was in Sligo for three weeks where I contracted shingles and meningitis. They did a lumbar puncture on me, and an MRI. I believe all of these complications were from Lupus.
I was allowed home on a high dose of steroids again. I was ok until they started to try to reduce me again but my body could not tolerate it. I kept getting kidney infections and was admitted again to Hospital. I was admitted to Letterkenny for a week to have a kidney biopsy where I was told there was a bit of scarring on my kidney and type 2 lupus…my kidney function is now under control, thank god.
After getting the swine and flu injection in November I started going downhill in December and again I ended up with terrible headaches and vomiting, once again I was admitted to Sligo where they did scans and x-rays but nothing was showing up. I was given Panadol for my headache but my Mum knew it was much more serious and pushed the doctors to admit me in Dublin. After days of pleading they agreed as there was nothing more they could do for me only make me comfortable. I was admitted to Beaumont where they did an MRI straight away on my brain…they found a clot on my sinus and again I was treated for that. Thank god I didn’t have to get it removed as my Warfarin controlled my clotting levels! While still in Beaumont they decided to do a bone marrow check and again I caught an infection as there was a winter bug in the hospital at the time. My legs and feet started to swell up, it was like a scene from the Incredible Hulk (only best way to describe it) I was in so much pain I couldn’t walk, I could barely tolerate it. I ended up being taken to theatre and going into intensive care two days later.
The first thing I remember was not being able to feel my legs…I was told I had Septicemia (blood poisoning)…I was informed that the blisters were to be removed from both of my legs in theatre. I was transferred down to the ward after a week and this is when the real pain began. I had to have my raw skin cleaned every day, it was a nightmare. I used to pass out from the pain and no amount of morphine could block it. I spent seven months in 2010 in Beaumont. I had a skin graft on my legs and I began to learn to walk and do things myself again. I had to receive infusions of platelets as my levels were dangerously low, several blood transfusions and a tube up my nose as I was unable to even eat. I was discharged to Manorhamilton Physio Hospital where I stayed for a month only being allowed home at weekends.
I have been through a lot over the years with Lupus. I lost my dear Father and Granddad to Cancer so I never really had time to grieve or talk about my illness sometimes. I’m sure many of you have had days when you say “Why Me!!” But this illness makes us who we are…strong, determined people who will not let Lupus rule our lives.
Now I am doing well again. I always say it took that bad spell to get me feeling good again. I am now on the lowest steroids (10mg) I’ve ever been on and I am on Imuran and blood pressure tablets and do you know what…I am feeling great. It is the first time since I have been diagnosed that I don’t have to plan ahead, I can just get up and go!!
I just want to say thank you to Jessica for setting up this group. It has helped me so much just reading everybody’s stories. They are all so brave and if I got through the worst so will you guys with the loving help from family, partners and friends.
…and as my friends tell me.. I’m a living miracle...