I’m not even going to try to catch up on everything that has happened over the past few weeks in hospital. I think it’ll be enough to cover the most important points for now.
I went downhill quite fast after my last posts; I’d been feeling generally worse, noticing more temperatures, chills, rashes and body-wide pain, but had also been putting up with a terrible pain in my left abdomen/side for a number of weeks and that too was getting worse. I’d seen my GP numerous times, been to A&E and MAU and was starting to feel there was nobody left to turn to. I finally got in contact with my Rheumatologist who’d been away and he planned to admit me to hospital, but before he could find a bed I took another turn for the worse.
I woke up one morning unable to move but with dreadful chest pain too, feeling breathless and struggling to breathe too. I couldn’t even speak and so between my GP and my Rheumy it was arranged for an ambulance to take me the 40 miles to hospital. They gave me IV Morphine, which took the edge off slightly, but my O2 levels were low, my Pulse 145, breath rate sky high and temp 39.4 celcius. I had felt there was something very wrong and it seemed my obs were backing that up.
The first thing they did when we got to the hospital was send me for a chest xray and ECG. The ECG was normal but the Xray showed I had fluid on and around my left lung. This was a surprise even to me; despite the chest pain, I’ve had so many normal chest Xrays that I had really expected it to be no different this time. But at least it explained the breathlessness and chest pain and maybe even this ongoing side pain I’d been experiencing. I hoped that finally we might get to the bottom of that and find some answers about why I was feeling so very poorly.
Over the next few days they treated me with antibiotics while they did more tests to find the cause of the fluid on my lung. I had two separate lots of CT scans, ultrasound scans, Echo scans, Endoscopy, Blood Cultures and daily blood tests. My Spleen was found to be enlarged (no surprise there though) and they also discovered I had a Duplex Kidney. My hemoglobin had dropped to 7 and so it was feared that I had a bleed somewhere and there was a possibility I would need a blood transfusion at one point. I also had terrible thrush/candida infection of the mouth, throat and gullet, which was treated with Nystatin. Possibly from hitting me so hard with the high doses of Infliximab.
They gradually ruled out any severe infections, heart failure and blood clots on the lung (although I was given the treatment for this as a precaution) and so it left just one culprit – Still’s Disease. Pleural Effusion is actually one of the listed complications of Still’s. So it was definite then, the Infliximab was no longer working and I was flaring again. I had probably developed antibodies to it so quickly because of its similarity to other drugs I’d been on in the past but it was still a disappointment.
My Rheumatologist decided we needed to act fast to control the high level of inflammation causing this systemic flare and straight away started the process for me to try Humira. I should hear something from them in 10 days – 2 weeks time. To tide me over until then, I was given a hefty dose of steroids – back to 50mg Prednisolone for however long is necessary. I should also say that, while we are going to give Humira a go, I guess neither of us is very optimistic that it is going to work and so my Rheumatologist has also suggested that we start to think about possible Stem Cell Therapy and Bone Marrow Transplant as well; but I will write about that in more detail at another time.
So, it’s been a rough few weeks. It took a long time to get things controlled enough for me to come home and even now I’m not feeling very good at all. The fluid is going to take a while to shift and I still have a lot of pain, most from the chest but possibly from the spleen too. It was difficult realising that there was no quick fix and that I’d have to put up with this and simply manage it via pain killers and breathing exercises. This is something I am used to doing with joint pain; but even when you know nothing sinister is causing it, chest pain and breathing difficulty is still a worry. It’s instinct almost.
But I have been managing so far and it’s good to be around family again. We have so much to think about now and I found myself dwelling on the negative too much in hospital on my own so home is the right place for me to be.
Plus you can’t beat sleeping in your own bed; even if you do have to do it sat upright.