I woke up one one morning and I couldn’t get my feet into my shoes. I squeezed them in. A few minutes later I took my shoes off. It was too painful to keep them on. I gave it an hour and tried again. Irritated I showed my Mom, she would know how to get swollen feet down I was sure of it. She gave my feet one look and immediatly dragged me to the Dr. I obviously rolled my eyes at her apparant overreaction. Being 19 I thought she could be such a bloody drama queen. But she knew something was wrong.
The Dr took 4 vials of blood and was very worried. I off course thought all these silly adults just need drama in their lives! I saw the Doc at 9:00 and at 13:00 he phoned me and told me he booked me into hospital. OMG! Really now???????? I was so irritated that he overreacted so much I point blank refused to go. Then he said there might be something wrong with my kidneys. Ok, I thought that might be something, BUT, cant I just get some meds and go on my merry way? Nope, hospital it is.
So off we go, I get booked in and a barrage of tests get done on me. I go for scans, x-rays, CT scans, blood tests and more blood tests, and if I thought that was a lot, more blood tests! It transpired that I had a lot of protein in my urine. Which indicated some sort of nephrotic syndrome. I saw a Nephrologist and he eventually did a biopsy on my right kidney.
I saw the needle he was going to use, and freaked out just slightly. He told me not to worry, complications are rare, about 1 in a million kidneys bleed after a biopsy. I was that one. I thought I was going to die from pain. I remember getting up for a pee a few hours after the biopsy and just fainted from pain. It was very bloody painful.
Anyway, after the Dr told me he has personally never had a kidney bleed after a biopsy and that I was his first patient to do so, thank you very much. He told me I had FSGS Focal and Segmental Glomeruli Schlerosis. GULP! Say what now? Yes, and so my journey with FSGS a progressive and incurable kidney disease starts.
I was told that I would eventually go into renal failure, but that’s long term, I shouldn’t worry about that. He also told my Sister that she would be a great match as a donor one day. My head spun. The Drs were throwing around words like ‘transplant‘ and ‘donor‘ and ‘life long medication‘. I was only 19 and it felt like my life was over.
But it wasnt. I went on and got married and had 2 gorgeous boys. I had cats and dogs as wonderful pets and lived a normal life. Until the wheels came off. My right kidney had an obstruction and started filling with water. It was not alarmingly big, but the Dr was watching it. About 2 years later it was the size of a watermelon. It was HUGE. My Nephrologist said I needed to have it removed immediatly, it was life threatening, the cortex was less than 1mm thick, if it bursts I would be in serious trouble.So it was removed in May 2006.
To save my remaining kidney he put me on chemo therapy. I will never do that again! Chemo is not for the faint hearted, lemme tell you. Hell.On.Earth. I was so sick. I thought the nephrectomy (removal of kidney) was difficult and painful and the recovery was very long. But chemo was in a league of its own.
So after chemo I just lived a normal happy life. That lasted all of 3 years when the wheels came off again. This time, full blown renal failure.
So here I am, in renal failure, and waiting. But also living. I am living my life as best I can, I am not going to be a slave to renal failure, I refuse. It got me down, but I got up. With God’s help, the encouragement from my family and friends, I am living, and looking forward to a bright future.
Death is nothing, but to live defeated and inglorious is to die daily.