So today is day 15 of my current stay at hospital and this has been the life changer.
I was due in hospital on Friday 14th August to have a routine renal biopsy, so that the doctors could try and see if there was anything wrong with my kidneys when I wasn’t going through an episode. From the Wednesday I had had a slight temperature and felt flu-like but didn’t think anything of it as my tonsils had been removed so I just assumed it was nothing. I went into hospital ready for my biopsy, only to be told that my temperature and heart rate was sky high and that my kidneys were leaking proteins again. Here we go again! This time was a lot worse though. Ordinary people never leak proteins if their kidneys function correctly, but I normally leaked 80-120. On my admission my protein was over 500! The doctors were very worried as my kidney function also dropped to 5% of what it should be! These kind of numbers are the kind that require dialysis and the doctors were unsure if my kidneys were going to be able to recover. The doctors pumped me full of antibiotics and fluids and organised a renal biopsy as soon as my temperature and heart rate was stable.
The biopsy happened on Monday 17th August and revealed that I had a problem with something called complement, which was causing my kidney to attack itself. The doctors gave me a working diagnosis of having C3 glumeronephritis. It was a small reassurance to have a possible diagnosis, but the doctors still didn’t know what caused this or why this was happening. By the time I got the biopsy results, my protein was over 680! The doctors needed to take drastic action if there was to be any chance of trying to save my kidneys. They started me immediately on a high dose of steroids – the bane of my life! The weight gain and side effects did my head in but if I wanted to try and save my kidneys, it was steroids or nothing.
This time steroids wasn’t going to be enough though – the doctor suggested I started another two treatments to try and bring my kidney function up. The first was cyclophosphamide injections and the second was having plasma exchange.
Cyclophosphamide is a drug that is used in chemotherapy but was going to be used in a lower strength. The possible side effects were horrible – nausea, vomiting, hair loss, fertility problems to name a few; but none of this even entered my head. I just wanted the treatment. I had my first cyclophosphamide injection on 20th August. Normally patients are given ovary protection prior to starting to drug but due to the urgency required, I’d have to wait until after my treatment for the protection.
The second treatment was plasma exchange. The blood is made up of cells and plasma. The plasma is made up of antibodies which fight disease. The doctors wanted to replace the plasma in my blood with donor plasma, in the hope that the new plasma would replace any faulty antibodies I had. In order to do this I needed to have a tesio line inserted. This is an internal line into my blood vessels. The line would be stitched into the top of my neck and then two tubes would come out of my chest. The line was inserted under a local anaesthetic. I had the line inserted on 20th August and I was ready for my first plasma exchange treatment on Friday 21st August. The process was 2-3 hours and I was having twelve bags of donor plasma replaced each session! I was honestly so frightened before my first session. I just didn’t know what to expect. Thankfully the process was pain free. I just lay in bed listening to music while modern technology did its thing. The doctor requested I have about seven of these plasma exchange sessions in the hope of some improvement in my kidney function.
Over the last week, my protein levels have miraculously started to fall a little so something seems to be working! The doctors are cautiously positive, but one thing is now clear – at the age of 25, I have a chronic renal condition and my life will never be the same again.