Caroline’s Story

I was on my way back from my honeymoon at the end of August 2017. As I pulled my suitcase through the airport I got a twinge in my back but thought nothing of it and carried on. That flight home was one of the worst I had experienced. The pain itself wasn’t that bad but it was persistent and I could not sit easy. It was the early hours when we got home and with the pain still, there I took a Nurofen and went to bed. I awoke the morning was feeling fine and went for an induction day for a new job.

From the moment I got home, the pain started again, it was the location in my lower back over the right-hand side where my kidneys are. I went to bed with a pain killer and a hot water bottle. Over the course of the next few hours the pain intensified, I called for my husband and he and my son carried me out to the car. I couldn’t walk and could barely stand up.

I was waiting in A and E about 2/3 hours before being called. They took blood and x-ray and I was sent down for a CT scan. Throughout this, the pain came and went. I was then moved into the acute medical ward and after more blood being taken was sent for another CT scan. The doctor came in and told me that I had multiple clots in both my lungs and I would be on tablets for a while and sent an appointment for hematology. This took 24 hours from first walking into the hospital to walking out. They gave me medication and pain relief and I felt fine.

When I went home I was fine and through the next day thought sure nothing of it. Then the pain hit and I would be watching the clock until I could take paracetamol again which was all I was allowed. I was in more pain than I thought I would be over the next few weeks. I found it difficult to sit stand or lay down and I was concerned the clots weren’t dissolving. My movement was slow and I became easily out of breath. I had no idea how long the clots would take to dissolve or how long I would take to heal. I took the Rivaroxaban until I got my hematology appointment.

At the appointment, I was told it is probably the contraception in my arm that has caused the clots and I would it to be removed immediately. I was to keep taken the Rivaroxban for another few weeks and then get these blood tests and they would see me again. I took a picture of the blood tests I needed to have and researched what they were for. At my next Haematology appointment, I was told I had a positive antibody and I would need to have a follow-up blood test to check again and make sure it was a positive as you can get a false positive.

About 12 weeks later I went back after having the blood test to be told I have antiphospholipid syndrome. During this timeI was not on any blood thinners. At this stage I had learned a bit more about the syndrome and knew that in 50% of the patients with antiphospholipid they can also have Lupus, I asked the doctor for a blood test for this. I was started on warfarin and told the clinic would contact me. At my first warfarin appointment I mentioned the blood test and the nurse rang Haematology for me, one of the doctors came down and told me that my test came back positive and it looked like I could have Lupus and swollen capillaries and that I would be referred to Rheumatology within six weeks.

After waiting over a year for an appointment I went private and was told I have mixed Connective tissue disease and I am the medication Plaquenil for that.

In March I had an appointment with Rheumatology however due to COVID-19 the hospital cancelled the appointment, I had an over the phone conversation with a nurse who told me they would send out a prescription for Vitamin D as I had a deficiency in this also. I am lucky and have mainly good days. I get sharp pains in most areas of my body and then they are gone. I can have aches in muscles and feel tired for little or no reason, my body is stiff and sometimes hard to get going but I realise how fortunate I am to have come through this, to be living a normal life and to be able to live love and laugh with family and friends.