Test results : Hi guys just got some... - PKD Charity for A...

PKD Charity for Autosomal Dominant PKD

1,162 members263 posts

Test results

DeanSamson profile image
16 Replies

Hi guys just got some test results back for my pkd can anyone shed any light on them???????

Many Thanks

Written by
DeanSamson profile image
DeanSamson
To view profiles and participate in discussions please or .
16 Replies
atropa profile image
atropa

Great results, looks like everything's normal. Great kidney function!

DeanSamson profile image
DeanSamson in reply to atropa

Thanks I don't have a clue what these mean. Why can't it just say good or bad haha

atropa profile image
atropa in reply to DeanSamson

But it does - in the right hand column it gives you the normal range, so you check against that, easy ;)

Theskewer profile image
Theskewer

You are stage 1 and doing great. I hope you never have any issues. Do you have a family history?

DeanSamson profile image
DeanSamson in reply to Theskewer

No I don't have any family history I only found out I had pkd 4 years ago after getting pain in my right side. Went for a scan docs thought it was a kidney stone then noticed multiple cysts on both kidneys. I have 4 brother and neither of them seem to have it although only 1 has been tested. There 3 of them or 30 and over. I have tried looking through the family and neither sets of grand Parent's had it or my mother or father. Thanks for the good comment. Got a yearly routine check with the nephologist today.

Theskewer profile image
Theskewer in reply to DeanSamson

I am on the same boat as you. I am the first in my family. My parents are clear. I hope we never have any issues. My values are similar to yours.

DeanSamson profile image
DeanSamson in reply to Theskewer

That's great. I went to the nephologist yesterday he said I don't need to go back for 2 years now. Showed me my mri scan wasn't pretty some big cysts.

Nigtt profile image
Nigtt in reply to DeanSamson

Do you know how big your kidneys are out of interest? How old are you?

DeanSamson profile image
DeanSamson in reply to Nigtt

Hi nigtt

I'm 34 years old and my kidneys when last checked were 15cm and 17cm I think.

Thanks

terrysinclair311294 profile image
terrysinclair311294 in reply to DeanSamson

I’m 23 years old, my current situation is as follows. My eGFR is 23, My left kidney measures 25cm in length and 13cm in width, my right right kidney is 20cm in length and 11cm in width, I’m currently taking medication for pain which is Oramorph and Oxycodone Modified release tablets. For being 23 years old and having stage 4 renal failure I feel quite down and depressed. This disease is slowly killing me and there’s nothing I can do to stop it.

PKDC-Admin profile image
PKDC-AdminPartner in reply to terrysinclair311294

So sorry to hear about your current eGFR status. I'm not surprised you are feeling depressed. It's unusual to reach that stage at your age. Have you spoken with a nephrologist or renal nurse about how you feel? They can arrange for you to talk with a renal psychologist.

terrysinclair311294 profile image
terrysinclair311294 in reply to PKDC-Admin

I have spoken several times to my hospitals mental health outreach team when I’ve been an inpatient as I am admitted frequently because the pain is often unmanageable at home, I speak with the mental health teams and I’m promised many forms of support which are never followed up and I am brushed aside.

PKDC-Admin profile image
PKDC-AdminPartner in reply to terrysinclair311294

Which hospital do you attend?

terrysinclair311294 profile image
terrysinclair311294 in reply to PKDC-Admin

I attend sunderland Royal Hospital and was under the consultant Dr fenwick for a while then I was transferred to the care of a junior registrar and now I’m recently under the care of Mr Hinchcliffe who I’m told to believe is one of the leading Nephrology Consultants in this part of the country. And in one consultation last week he addressed several issues I had with other doctors including my own GP regarding pain relief and what to prescribe, my GP wasn’t willing to prescribe me the drugs recommended by the hospital specialists and as such Mr Hinchcliffe has written to the GP advising what to prescribe and how to deal with my case going forward to prevent unnecessary inpatient admissions

PKDC-Admin profile image
PKDC-AdminPartner in reply to terrysinclair311294

That sounds positive.

terrysinclair311294 profile image
terrysinclair311294 in reply to PKDC-Admin

It certainly does. Much more positive than my previous outlook under the other so called specialists haha

You may also like...

Daughter just diagnosed at 20, should we have genetic testing done?

Just found out my 20yr old daughter has PKD. We have never heard of this before in either family....