The monster inside me

I was diagnosed with PKD in 2002, one year after my mother died of kidney failure after battling with PKD for as long as I could remember.

The diagnosis had little impact on my life, for the most part I ignored it and pushed it to the back of my mind.

But PKD is a nasty little monster. It does not like to be ignored.  Slowly, insiduously it insinuated itself into my life and is slowly taking over with me fighting it every step of the way. I felt defiant, in control...this would not beat me I told myself.

Until last week when the monster grabbed me by the throat and threw me on the floor.

For the third time this year I was rushed to hospital in excrutiating pain.  The first two times had been ruptured cysts which some nice morphine sorted out pretty quickly.

This time it was much worse.  For two weeks before the event, I had been feeling generally unwell, sort of like when you feel as if you are coming down with a cold.  This I learned later was the beginning of an infection.  On that awful Monday the infection exploded along with one of my cysts.  The pain was unbearable and I had a fever that had the nurses running for meds.

Five hours later after lots of pain meds I felt better and the fever had come down to an acceptable level.  I was brought some contrast stuff to drink and sent for a scan.  They wanted to inject me with iodine as well but having had one of those incredibly painful injections before I refused. They insisted, I resisted. They did the scan without the iodine.  The scan showed that a cyst had ruptured and had a 5mm stone sitting in it as well as showed sepsis.  They wanted to admit me, and after a lengthy argument with the resident nephrologist I got my way and was allowed to go home.  

The reasons I did not want to stay in hospial were many but these are the main ones: 1. I did not like the doctor at all.  I know that my time on this earth has been shortened by this disease, I know what is to come, I know what I need to know.  I've done my homework.  His doom and gloom attitude was not what I wanted or needed. 2. I cannot rest in a hospital, why the staff feel they have to bang doors and talk at the top of their voices when there are sick people who need to rest is beyond me. and 3. I hate being away from my family and my dog.

So I left the very disgruntled doctor and nursing staff and went home. My husband got the antibiotics I had been prescribed and I strated taking them.  They did not agree with me. I get migraines and the medicine set off a whopper.  After three days I stopped taking the antibiotic and instead took the one that I had been on directly before for an ear infection.  

Recovery was slow.  Eight days in bed, 5kg weight loss and very fatigued and weak.

The worst of it though was that where I had always been upbeat and postive in my outlook, the 'impending death scenario' that the doctor had outlined for me had spiralled me into a dark depression.  Fortunately I have the most amazing husband who throughout everything supported me and encouraged me not to give up.

Now, 10 days later, I can feel the dark clouds lifting and as I get stronger I know I have to harness my inner strength ready for the next attack of the monster.  Live each day to its fullest.