Hello my name is Purple, I am a 45 female with four wonderful grown children and five lovely grandbabies. I am single and for the past few months i have felt like i am on a treadmill going nowhere. I have END STAGE RENAL FAILURE due to having kidney reflux and loads i mean bucket loads of kidney infections all of my life. Apparently it is a disease that i have got from my family, but it is funny that i have four sisters and three brothers and none of them have the disease or any problems with their kidneys. Both of my parents are resting now and have been that way for approximately 10 years, and neither of them had any trouble with their kidneys so where the firetruck did i get this from?
Just to go back a little for you, sorry i know i am not doing this in a very good way but i am sure you will understand, or at least i hope you do ...laughing ... When i was pregnant with my daughter "Mouse who is now nearly 24, i had major kidney infections and spent along time in and out of hospital, just keeping her and i alive. You must understand that at that time i was only 21 myself and lived in the UK along way away from my family and support network here in Australia. I had " Pippy" who was three two weeks after "Mouse" was born. I also had "Teddy" who was two three days after "Mouse" was born. My husband went away for work after moving us to a new city, so this left me with three very small children all under three by myself for the best part of 16 weeks.
The doctors told me at the time that at some point in my future i would need to have a transplant and that my kidney's would eventually fail, they couldnot give me any sort of time line, so for the next twenty four years i wondered every day if "THIS WOULD BE THE DAY". In November of 2007 the specialist, whom by the way i thought was and arrogant prig, called me whilst i was at work and advised that i needed to start dialysis very soon, as my blood count was extreme. I broke down and i wept and I wept, then my old friend depression reared it's ugly head, now i really felt as though i was on a roller coaster. I spent Christmas of 2007 and my birthday (just for any that are interested) in a hospital ward for those of us that just can't cope with life, yes i was in a Mental Ward.... boy did that open my eyes to the dramas of the human being.
I wanted something to fill my time and longest days of my life, something that would hoepfully make me forget about the "SHIT " going on in my life, to help me forget about the "Pending Dialysis" and all the implications that this would have on me and my way of life, so me being me i started to write a Novel, it is a story about Australia, some of the parts are true and some are made up, I am hoping to get it published, please keep your fingers crossed for me. Oh by the way it is called "the Wattle Cemetery", I know i have changed subject again sorry.
Eventually i got released from the hospital and i went back to the house i was living at. I was then in Perth Western Australia and again i was a long way away from my family, so i duelly applied for a job back closer to my family, in Canberra, yes i know i was the other side of the country from those near and dear to me, but i have now lived in every State in Australia and seen more than most people do in a life time, so that way i am lucky.
I got the said job and packed my belongings and travelled for a two week break with my best bud "Marie" to Melbourne and we started to have a great holiday, as the days progressed i found it more and more difficult to walk any distance, i was thirsty, so bloody thirsty i think i could have drank the whole ocean, i was not peeing much but did not realise. I would have to sit down at every fence and seat i could find, i was breathless, i had pain in my chest, i felt as though when i laid down i was drowning, did i think to go to the doctor, No bloody way, doctors just kept telling me i had a disease but it was not time yet to start Dialysis, so i continued on, i think i was so stubborn and determined to enjoy my holiday that i would not let anything stop me, not even my health.
We duelly landed back in Canberra where i was to set up home and start my new job, which was ment to start on the 1 April 2008, i know April Fool that was me, i got here and the job i could not start for an extra few weeks as i was liceneced in another state, bugger they should have told me, i would have been organised with finaces and stuff, but it was just not ment to be.
I went to the doctor to have a check up, you know i was lucky that i could get into see a kidney specialist whom i had seen and been a patient of whilst i had lived in Canberra before. He took one look at me and said "YOU ARE SICK", i looked at him and very politetly repied, "NO SHIT". The normal round of blood tests were taken and he stated that he would see me in a further two months, OK i said and left his office feeling more alone than i had whilst i had lived in Perth or UK.
I was crook, i was crying, i was depressed, and mostly i thought i was going to die and no one would give a damn about me. I was lost and in a very dark and stromy place. I duelly went back to my daughter "Mouse " and she could not cope with me and i was struggling to cope with me. Three in the afternoon my phone was ringing, which in itself was unusual, it was the said "DOCTOR", "hi we have your blood test results, i need you to be in hospital tomorrow morning at 0700, and we are going to insert a vascath into your chest you need to start "DIALYSIS" NOW. Again i started to cry and was overcome with fear, the doctor spent some 2 hours talking to me and trying to put my fears to rest, i learnt that i would have the Vascath put in and that i would have my very first dialysis within a few short hours.
By the time that "Mouse" came home from work, yes you guessed it i was a mess, i could not think straight, and i was so nervous that everytime i looked at someone i would burst into tears, Mouse took the day off work and came to the hospital with me and basically held my hand and tried her very best to keep me calm.
I had the line put in, boy that was a nightmare on it's own, you see they did not give me enough sedation and i could here the staff talking and i could feel them cutting me, i felt every second of having it inserted, the pain was enormous, the shock went right through my system, i kept trying to tell them to stop but, it was like they could not here me, by the time i got back to Mouse and the waiting room i was so ill i wanted to die.
I had my first dialysis session and slept blissfully through it all, i was now so drugged i could not even stand. I was bruised and had stitches on both sides of my neck as they had had to have two attempts to put in my Vascath, whilst awake, I had two pipes hanging out of just above my left breast. I was in shock. After having my first "HOOKUP" i was duelly sent home with Mouse, thank goodness to her partner as he held me up whilst i tried to make it to the bed, for the next six weeks i was like death warmed up, i would pass out everytime i stood up, i would be vomiting at the drop of a hat. I got so bad that i was admitted into hospital for a two week period, my blood pressure was 66/ 45 and slowly dropping, i thought this is it they have waited to long to start this.
Just so you know i had been on two lots of high blood pressure medications twice a day since i was 21 so now to have very low blood pressure was a unique experience indeed. I don't remember much about my stay at hospital, execpt i just wanted to sleep and sleep some more.
After two weeks and the new "Hookup" schedule i started to get a little more stable, my blood pressure went back up to 107/ 76 so they said i could go home and take it easy, so again i went back to "MOuse and her little family" and they took great and wonderful care of me, It is now September 2008 and i have just moved into a rented share place with other people, I am now working two casual jobs, one over night and one during the day, i do "hookup" three times a week, Tuesday, Thursday and Saturday Mornings at 0700. I plan my days so far inadvance that i could probably work out what i will be doing at Christams time next year
I was moving into the said house with the "MEN" and i got a phone call from a number i did not recognise straight away, again it was three in the afternooon, i answered and it was the said doctor again on the phone, you see the week before my hand had all gone numb and my fingers went blue on my right hand but after a couple of hours it went back to normal, my hand had been "STRANGE" since they had inserted or should i say made a Vistula in my right arm just near my elbow, yes they had to have two attempts at this one too so i have a scar near my wrist and a vistula at my elbow joint. Anyway the doctor rang to tell me that the scans that i had had showed that i had "blood clots"around my Vascath and it had to be removed, tomorrow morning at 0800, I didnot cry this time, i just rang Marie and she jumped a bus and came to my rescue, the next day we were at the hospital, I was told you have to have TWO surgeries today one to put a new line in and the other to take the old line out. I started to cry then, and i pleaded with the nurse to get them to do it all in one surgery, she must have taken me seriously as the next moment a doctor walked in and asked if i was worried and said that he would get a doctor to knock me out so that i did not know anything, i felt better then, along came a lady in a white coat and she tried to put a Canula in my arm but could not , i have no veins , so she gave me a tablet and said it would help to keep me calm, in time i went into the theatre and the same white coat was there and i remember her saying to me just listen to your music, and breath deeply through the oxygen mask, so i did as i was told and then she said to me , i am just going to give you a couple of glasses of wine now, and she injected something into my Vascath that was not working properly, the next thing that i remember is being back in the recovery room and Marie was there with me and i had heaps of nurses and doctors standing around me pushing on my chest, they had removed my first Vascth but they could not stop it from bleeding, the second Vascath was in place and it would not stop bleeding either, needless to say that after some period of time about 5 hours they actually stopped and i was transfered to a ward for the night, i was not suppose to be staying in, i was very ill again. Marie was allowed to keep a bed side vigual over me all night, all i rememeber is them giving me more pain meds. and checking my dressings.
The next day dawned and i was much better, Marie took me to "Hookup" and sat with me whilst i was "cleaned", it was a real eye opener for her to see what happens. I had a week off work as i was just so bruised and battered that i had trouble moving or showering or anything really, Marie was a god send , she dressed me , she nurtured me, she cooked for me and most of all i could just be anyway that i needed to be with her.
It is now two weeks since i had my Vascath 2 inserted and it is in a bloody awful position, but at least it is in, the pipes hang out under my right arm pit now. I have been back at work both jobs for 6 days now, determined not to let "Hookup" be my life but to make sure that it is constant in my life and just part of whom i am this very Unique and understanding girl. My chest is now a lovely shade of blue / green and i have a lump that has popped up from my old Vascath site, now i have to have it investigated... bloody hell what next... any way that is a little bit about me ... May you always have a kind word on your lips, May you always have a
in your heart, and may you always have a song in your soul... Keep smiling Purple ...
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