Almost time!: Well it's getting nearer... - PKD Charity for A...

PKD Charity for Autosomal Dominant PKD

1,177 members263 posts

Almost time!

nikityler profile image
6 Replies

Well it's getting nearer, I was diagnosed in 1988 with ADPKD (inherited from my mother, god bless her) and I have just had my latest blood results and my function has now dropped to 16%. I did wonder if something had changed, the more frequent visits to the toilet (night and day), the feeling sick and more tied than normal. Appointment with the consultant on 11th so we will see what they have to say. Scary times ahead me thinks!

Written by
nikityler profile image
nikityler
To view profiles and participate in discussions please or .
6 Replies
ladyt62 profile image
ladyt62

i dont want to scare u but i had my bloodtest as i do every 3months my nurse told me when i get to 20% i will have to go on dialasis i have the worse version it spead to my liver 4 out of 5 of my kids have it and 2 grankids my mum dad and there parents havent got it we have muletated version

nikityler profile image
nikityler

Hi ladyt62 thanks for your message.

Like you it runs right through my family, Grandmother (we think) Mother (died of from it) my two sisters, my two sons and my two nephews, my niece has yet to be tested. I went to my appointment on the 11th of Jan and no still no dialysis they are saying probably not for another year.... more waiting, more feeling crap! Not sure where you are but here in Somerset they seem to be doing things different. I liver is doing something but not sure if its on that too, but my youngest has it on his liver as well as does one of my sisters.

ladyt62 profile image
ladyt62 in reply tonikityler

i live in peterborough i had check up lasted wk go on 27th feb for results i also suffer from c.o.p.d and arthritus in back neck hands deppression fibromalgia anxity &panick attacks

ladyt62 profile image
ladyt62 in reply toladyt62

i really aint hungery just dont want to eat feel sick got bad head do u get like that and my lower bk kills have trouble getti.g up and walking i get my results tomoro i had routine check at gp had to go bk to see nurses but she madr me an emergency appiontment to go bk tomoro monday cos things aint gud with my kidneus liver and thyriods

ladyt62 profile image
ladyt62 in reply tonikityler

How r u feeling now i spoke to u a yr ago I've now got creatine in my blood got to have monthly blood test in getting really scared now

PKDUK profile image
PKDUK in reply toladyt62

You should not be scared. Change your diet to an alkaline and vegetarian diet and you will see huge improvements. Our diets is the key to how to handle this disease, which is very sensitive to an acidic diet.

Not what you're looking for?

You may also like...

I am having a hard time accepting that I have this, I am so scared

Hello everyone, I am 29 years old, diagnosed 3 years ago by accident, during a stomach ultrasound,...
Theskewer profile image

Due to see a genetics councilor on the 6th October. Feeling scared and confused.

Hi I'm new here. I'll start with some background and I apologise as this may be long winded. I came...

Advice for mums with children that have ADPKD

Hi All, I’ve been a member here for a year, and not written anything, Not sure why I just did want...

Hundreds of cysts & enlarged kidney

Hi, I'm new on here. I had an ultrasound around 4 years ago for a hiatus hernia. Sonographer was...
Jerseyladu profile image

I have ADPKD and have been on the TEMPO study since 2007 - anyone out there like me?

I don't know how much impact Tolvaptan has made on the size of my kidneys and cysts because I...
bunty_f profile image

Moderation team

Susan_101 profile image
Susan_101Moderator
PKDC-Admin profile image
PKDC-AdminPartner

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.