My current situation…

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. 

The story so far…

In August 2013 I was just your ordinary young adult – in a carefree stress less job with not a care in the world. Oh how I wish I could be that care free again. 

From September 2012 every four to six weeks I would have a temperature and get the flu. It only lasted a couple of days and with some medications I would be completely okay so why worry? Come August 2013 I had had enough. A girl who never used to get sick ever and I couldn’t get rid of this repeated flu so of to the doctors I went (for what I thought would be a wasted journey where I would just return with some antibiotics). The doctor was understanding of my frustrations but couldn’t identify or suggest a cause so said she would just take my observations and send me on my way. On taking my observations things changed dramatically though. My temperature was 40 degrees and my heart rate was 165! The doctor was in shock and wouldn’t let me leave the consulting room. She arranged for me to have an ECG done there and then and for me to go straight to hospital. 

On arrival at the hospital I spent most the evening going through scans and tests in the hope of an answer to why I was getting ill continuously, but with no luck. The doctors took some urine samples and discovered traces of blood which lead them to discover that I had a potential problem with my kidneys. They wanted to perform a kidney biopsy so that they could have a better look so I was transferred onto a specialist hospital in London to have the procedure done. The results of the biopsy was something that neither me nor my family were prepared for – my kidney function was at 15% of that which it should be. I was devastated and I’m a state of shock and confusion. What was happening? 

The doctors rapidly put me on steroids which they said were a ‘magic drug’ and would help my kidneys perform better. I have never been a thin girl but the steroids made me gain weight like nothing! 2-3 stones I put on the first round of steroids I had. It was devastating for my confidence and I hated going anywhere due to my weight gain and the moon face symptom that I had too. Regardless of the side effects, the steroids were working and my kidney function was returning. 

The doctors weren’t sure why I had had this episode but were happy that I was improving and continued to monitor me every 2-3 weeks at an outpatient clinic in hospital. Over the next few months I was carefully monitored and doctors started to notice that every time I got an infection my kidneys would have an effect. I started to get tonsillitis every few weeks and it was terrible! I would struggle to eat and drink and would end up getting ridiculously dehydrated. 

In May 2014, a couple of weeks before my university final exams, I had a second episode. I had a bad occurrence of tonsillitis and my kidney function had dropped and my kidneys were leaking large volumes of proteins so back to hospital for ten days. The doctors performed another biopsy to see if they could shed any light on the relapse but with no luck so it was more steroids and more weight gain. The doctors referred me onto see an ENT (ear, nose and throat) specialist in the hope that they would be able to remove my tonsils and that this trigger may prevent any more episodes. 

In October 2014 I finally had an appointment with the ENT doctor. At the appointment the doctor said that he couldn’t see anything wrong or inflamed with my tonsils and said that it was up to me whether I wanted to put myself on the waiting list for a tonsillectomy or just wait and see them again in a few months. Considering the waiting list was 3-4 months for the operation and how often I was getting tonsillitis, I decided to put myself on the waiting list. 

In the coming months I continued with my renal monitoring while waiting for my operation date. My level of protein leakage in my kidneys had risen up suspiciously in December so doctors were closely monitoring my infections. Months and months went by and nothing from the ENT department, even with constant badgering from my other doctors as I kept being put on antibiotics in the hope of keeping an infectious episode at bay. 

Easter weekend, 2015, the inevitable happen and I had a very bad episode of tonsillitis and ended up in hospital again with severe dehydration. Thankfully the doctors pumped me full of fluids for 72 hours and were able to release me on antibiotics, instead of the dreaded steroids. 
Enough was enough though and with phone calls to and from the hospital I finally managed to get a date for my tonsillectomy – 25th June 2015. What a relief to finally have a date for something that could be life changing! I was trying not to get my heart set on this operation being the solution to my problems, but it was hard not to. The operation came round quickly and even though the surgeons tried to scare me into not having it due to possible side effects (severe bleeding etc), I was determined to get my tonsils out. The operation went ahead without any problems and I spent a horrible week at home recovering. The only good thing that came was that I managed to lose a stone from the lack of eating! 
So here I am in August 2015, back in hospital.