scared beyond beleive

[Gwen]

HI my name is Gwen and I'm from Dublin, Ireland and I'm a child stuck in a 34 year old woman's body. Someways I'm my age but when been sick especially if the talk of Dialysis comes up i revert back in to myself. Dying from birth, docs told my mam i wouldn't live, two days old was my first op.  its now over 18 (lost count along the way & have been put under for so many tests).
Born with non functioning kidneys and its just seems to have gotten worse ever since.  Been to every hospital in Dublin, the final straw was when my mam asked for a second opinion and the doctor shredded my file in front of her (most of my ops where done from the age of 0 - 3) so when i went to Canada they had to do a lot of tests before they could even start operating on me - didn't live there i had an Aunt who found out about Dr. Churchill in Sick Kids Hospital so we went over in 1988.  My Bladder never grew and he was going to use my appendix but when they did test if turns out my appendix was taken out WITHOUT permission, so he used part of my bowel for the augmentation. I was also incontinent, so Dr. Churchill tried a sling but it didn't work, Ive stayed incontinent until 1997 when told about a Dr. in England, and he put in an artificial sphincter on my bladder - my life began and it was amazing, never thought id have a "normal" life, but for the past 15+ years i have.  Until two years ago when the pump stopped working and i was back in pads.

Right now I'm pre dialysis, i have been saying for years - death before dialysis, as i had no idea who painful renal failure actually is.

Last week i went for test for Kidney infection - this is where the kicker is: there is no infection, the pain is actually renal failure.  Ive been in denial for years and convinced myself ill be fine.

Now i cant stop crying and I'm so embarrassed, sad, angry and so much more all at once.

Then the other day i found this site, i tend to hide my feeling behind humor, therefore I'm so glad for this place, to read others peoples stories going through what i am and even worse - in a strange way it brings comfort.

Thank you IHD

[kristina]

Hello Gwen, and welcome to IHD.
I can understand your fears very well, because after my diagnosis I went through a similar fears...
Like yourself, I am still pre-dialysis and through IHD and the Internet I have found many helpful ways,
how to slow down my ESRF and it has been working well for me so far... (touch wood, it continues...)
I am eating a very boring vegetarian diet, but it assists me to slow down the deterioration of my "two little fighters".
I can understand that coming to IHD brings you comfort, I feel exactly the same, because by exchanging our thoughts
here on IHD, we can find helpful assistance through the learning process of dealing with our ESRF...
Best wishes and good luck from Kristina.

[obsidianom]

Welcome. Dialysis isnt a death sentance.  You may feel better once it starts.
Are you working on getting a fistula soon before you have to start? That should be a priority.

[Rerun]

Hi Gwen and welcome to IHD.  I'm so glad you found us.  The key is to get a good fistula established if you are going hemo, or to get PD established if you are going peritoneal.  Maybe a kidney transplant is in your future.  I'm glad you had 15 good years.  We are here to help you.

Rerun, Admin    

[Darthvadar]

Hi Gwen...

First and foremost, may I extend a very warm IHD  to a fellow Dubliner... We're wonderful people, aren't we???.. Modest, too!!!... LOL!...

Anyway, feel free to express your concerns here... We have all been touched by kidney disease in one way or other... If we don't have kidney Disease, we love somebody we love somebody who does... All in all, we 'get it'...

Stick around, and keep in touch... We're a great support network....

Darth... Moderator...

[Simon Dog]

Right now I'm pre dialysis, i have been saying for years - death before dialysis, as i had no idea who painful renal failure actually is.

It is possible to have a good life on dialysis (btdt  pd@home=>hemp in center=>hemp@home).   Find out your options, decide which is best for you, and don't take no for an answer.