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. 

2 thoughts on “The story so far…

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