Lets not forget, Lupus is a condition that can attack suddenly, at any given time, in any part of the body. It can be a life full of surprises – although not the kind of surprise you wish for.
I woke up on New Years day with a dull pain on the left side of my chest, it wasn’t too bad so I thought I’d let it slide for a bit and see how I get on. By late afternoon it was getting worse, we had been driving back home from London so I hadn’t been doing much but sitting in the car and having a nap. Toward the end of the journey I was getting restless and unable to find a comfortable position to sit in, it was starting to get to me. I knew this wasn’t something that would just pass, so after having something to eat in town, my partner drove me to Aintree Hospital A&E. I chose this A&E even though it was further away as it is the hospital I have been attending since moving over from Alder Hay. I have my rheumatology and nephrology clinics here and they have all of my data on their system, I have Doctors that know me there incase things turned ugly. Previously I have taken myself to the Royal Hospital in town, however I find that I just end up repeating myself as they don’t have my information as up to date on their system.
My observations were taken pretty quickly within the first half hour. Bloods taken after an hour and half and a doctor had seen me by the second hour, she requested a chest x-ray which was done almost immediately. I couldn’t praise the NHS enough for how quick and amazing the staff are, most of the waiting around is for blood results to come back which is not in anyones control really. I was sat in an observation ward after the x-ray waiting for the results, can I just say – the people you meet in A&E are…interesting. One woman opened the door to a treatment room shouting at the whole waiting area not to touch the door as someone was being seen to inside, or she’ll knock our heads in … literally no-one was even near the door. I met a few other crazy people during my 8 hours at A&E, hats off to the staff for putting up with and dealing with it all whilst under all the stress of saving peoples lives! Also, thank you to the nurse who leant me his phone charger – you’re a life saver (literally) and thank you for trusting me!
Anyways, after 8 interesting hours at A&E, a chest x-ray, 3 lots of bloods taken, a majorly bruised arm from the bloods and some funny conversations, I was released home as the conclusion of any life threatening issues had been ruled out. The only blood result which came back positive was my d-dimer test which suggested there could be a blood clot in my lungs, however as it was out of hours they said the required CT scan would have to wait till the next day. I was sent home at 5:30AM after receiving an injection for blood thinning (incase it was a clot) and instructed to wait for a call back from a Dr to book me in for a CT that same day. Due to a mess up on their system, I didn’t receive that call and instead I made the call, as it was 4pm the day was ending so I was instructed to go to the hospital at 9am the following day to be booked for the scan.
The pain at this point had been getting much worse, I was overly tired from A&E (hadn’t slept much the night before either due to New Years celebrations) which made it more difficult to sleep. It was a vicious cycle and paracetamol was not cutting it at all. I made it to the hospital’s AEC (Ambulatory Emergency Care) ward for my scan and got an appointment within the hour, coincidentally my nephrologist was working on this ward on this day. Honestly he is such a caring and hard working guy, he specialises in nephology but also I’ve seen him apply his skills in various other departments to help patients and improve his own knowledge. When he saw me the first thing he said – “oh you look tired!” – thank you very much for noticing Dr! I was extremely lucky he was there as he knows the most about me and my current situation, he knows what I’m like and he could tell I was not myself at all. After my CT he prescribed me Codeine for pain relief which I am grateful for, this has been an important part of my recovery as it has actually allowed me to get some much needed sleep for my body to recover. The CT thankfully showed no signs of a clot which is a relief.
Still however I have no real answer as to what is causing this chest pain other than Lupus. Doctors are putting it down to my autoimmune disease and hoping that my recent change in treatment will help resolve this on its own (talk more about this in another post). The first week was difficult to say the least, I would wake up every 2-3 hours from the pain, my left arm and head had an annoying tingling sensation and a numbness in my left arm too which made sleep very difficult. By 2/3pm I would be exhausted again and require a nap, which I could only achieve after taking pain relief. 2.5 weeks later and I am still suffering with slight chest pain, taking pain relief medication to get me through the nights, but it is (very slowly) getting better. I get exhausted after half a day and need to take a nap, if I do too much the pain comes back. For now I have to just take it easy.
I have an echocardiogram booked to check if this is possibly a mild case of pericarditis, apart from that the only other explanation is possible pleurisy (inflammation in the tissue between the lungs and chest wall). Both cases would mean plenty of rest for recovery as there is not much more they can offer me in terms of medication as I am already on a high prednisone dose and plenty of other immunosuppressant medication.
My boy Harvey has been spending a lot of time with grandparents recently, thank goodness we have them. He is loving life being spoilt of course, let’s hope he’s not too much of a spoilt toddler once I have him back properly!
Will update you all again hopefully with some better news next time!
Love to all