suggestion... how about introducing ourselves??

This is the forum for the Kidney Patient Guide. We welcome feedback about the site and any information that may be of use or interest to other visitors.

IMPORTANT NOTE: This forum is not for queries that would otherwise be addressed to a doctor. If you have a question about your condition or treatment please consult your renal unit or doctor. We do not have any editorial or medical resources to answer individual queries.

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Joined: Wed May 11, 2016 11:14 am
Location: Califrnia

Re: suggestion... how about introducing ourselves??

Post by johnpereless »

I am John Pereless, age 31.
Posts: 1
Joined: Tue May 17, 2016 1:24 pm

Re: suggestion... how about introducing ourselves??

Post by roundabout66 »

I'm Mandy from Warwickshire. My husband has Iga nephropathy, diagnosed about 8 years ago and is now down to egfr of 21. We've been told he will probably looking at dialysis in 6-12 months. We have three kids, aged 28, 25 and 9 (yes big gap!!) and they currently all live with us (even the nine year old :D )
Having a meeting with the renal nurse to discuss dialysis in July, so I feel we are well and truly on the journey now. Its been possible to mostly ignore it before. Don't know whats to come or what to expect so think I might end up a regular on here. Has anyone done/had a live donation? We have started the process and I'm a complete mismatch, but there is a possibility of the paired/pooled scheme. Don't feel so positive about that as I did about a direct donation to hubbie, but we'll have to see how it all pans out.
Take care everyone
Posts: 1380
Joined: Mon Nov 14, 2011 11:04 am
Location: Doncaster

Re: suggestion... how about introducing ourselves??

Post by rheaybou »

Hi Mandy,

I received a living donor kidney after being on dialysis for 18 months, so have had similar experiences to yourself.

Grey is a member here who if I have this right had the most recent paired donation via his wife, search out his posts/maybe message him for more details/his views in the process.

Good luck to you all.
Now 35 with Alports and I had my first kidney-versary 18th feb 2013....I hope to have many more.

My living donor and his family are doing all well.

Posts: 2
Joined: Mon May 30, 2016 7:44 pm

Re: suggestion... how about introducing ourselves??

Post by 5hredder »

Hello everyone..
My name is Rory and I come from, and still live in Manchester, uk..

I'm 46 and after reading through many of the introductions here am unsure whether or not I should even be here.

I've been having severe pain in my left kidney for around 10 years, and after speaking to my doc about it 3 years ago have been trying to get to the bottom of my symptoms.

To cut a long story short, I was originally diagnosed with kidney stones and went through 3 sessions of Lithotripsy which resulted in absolutely no change what-so-ever. The consultant I was seeing at the time shrugged his shoulders at me when I asked "..if it isn't the kidney stones that are causing my pain, what do you think it might be?"

I asked for a second opinion, and I have now been diagnosed with Medullary Sponge Kidney. This consultant reckons I've never had kidney stones at all, and that I have small calcium deposits in the meaty part of the organ.

I'm due to see him again on Wednesday morning as a result of further CT and MRI scans.. the letter states that my right kidney is functioning at 27%, while my left kidney - the one that hurts - is functioning at 73%. Apparently there's not much he can do other than keep an eye on it and give me pain relief for the pain.. funny thing is, he (as has everyone in the past) thinks the pain must be in my right kidney.. it's really, really not though.

I'm just stuck I suppose, and came here looking for some answers, advice, questions I should be asking etc.

So many people on here are in so much more serious trouble compared to me, I feel I'm small fry in comparison. But that's my story so far, and I honestly would love to hear from anyone who might be able to help me.

Thanks for looking, and being a part of this forum..
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Joined: Mon May 30, 2016 9:05 am

Re: suggestion... how about introducing ourselves??

Post by mildredthecat »

Hi everyone
age 52 renal failure since 1999. due to high blood pressure which I didn't bother to try and control. - just being honest there.
2004 kidney transplant from wife. apparently her kidney function was 146% the consultant had never seen one so high. so it was a privelege to get one of her great kidneys and it lasted over 12 years. she still dosen't have to have blood pressure medication.
But sadly it's failed and I believe my diabetes is a factor or it may have lasted even longer. but I have had a heart attack and have LVF. also diabetes which has took a terrible toll, I have had three amputations. leg, toes and three fingers, it's a nightmare but I keep hoping for a medical miracle so I can have a transplant again.
Incidentally, I have returned to dialysis and during my transplant years raided thousand for KD as did millions of others and there seems to have been no progress whatesover in the treatment of KD and still just as many waiting for transplantation. nothing seems to have changed in 12 years.
Posts: 71
Joined: Thu Aug 07, 2014 3:57 pm

Re: suggestion... how about introducing ourselves??

Post by Johnylefox »

Mandy from Warwickshire.
I was diagnosed with IGA in January 2014 and my kidneys went within 24 months.
I was symptomatic 7 years previously but I was discharged by a urologist (in 2009 and again in 2012) who said the blood and protein in my wee were just "one of those things".
I have a living donor who is being worked up as wee speak. He is the same blood type and his pee was clear so not a bad start.
Dialysis is doable.
Prepare for a tired fatigued hubby. But you can manage it.
He may not have the energy to pal with the nine year old all of the time but that can be true of healthy parents.
Do not despair. Whilst IGA is hard to control the end stage of kidney disease caused by IGA is manageable and treatable in many instances.
I cannot talk in absolute terms as I am not a doctor/nephrologist.
Stay positive.
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Joined: Mon Jun 27, 2016 7:43 am

Re: suggestion... how about introducing ourselves??

Post by saintdic »

I am Dave Saint, age 24
Posts: 2
Joined: Thu Jul 14, 2016 8:03 am

Re: suggestion... how about introducing ourselves??

Post by musiclover »

Hi, I have registered on here to ask for advice regarding my son. His story is quite an unusual one, in that we found out he had chronic kidney disease quite by accident. I have posted elsewhere in more detail, asking for advice. He is 24, and is currently undergoing treatment for leukaemia, and has had two cardiac ablations for SVT, so he has been through quite a lot already. I know he is a man now, but I will always worry about him :)
Posts: 5
Joined: Thu Jul 21, 2016 12:56 am

Re: suggestion... how about introducing ourselves??

Post by paul_in_toks »


I'm Paul, been living in Tokyo for 10 years but from west London. I was diagnosed with iGA nephropathy about 13 years ago when I was 21/22-ish. My kidney function had been hovering around 18% for a few years but suddeny dropped to 13% last month, so we just started the tests to see if my wife can be a donor. We know we have different blood types but they can do imcompatible transplants where I am.

Hospitals and doctors are pretty great over here but it's not free. However I'm happy to pay a bit for a good and clean service.

Any questions, let me know! I'll be hanging around these forums.

Posts: 1
Joined: Mon Aug 01, 2016 10:37 pm

Re: suggestion... how about introducing ourselves??

Post by vh770 »

Hi all,

My name is Ron, i live in Canberra, Australia, I am 38 years old. I was diagnosed with end stage renal disease 6 weeks ago. Previous to that i was, as far as i was aware, a healthy adult with no inkling of even what kidney disease was. I didnt smoke or drink, was pretty active and ate relatively well. No history of high BP, or diabetes.
When i was admitted to hospital my eGFR was 2, haemaglobin was 49, my creatanine was 1800, urea was 73. Guess i didnt realise how sick i was until they told me!
Since then it has been a massive learning curve for my family and i, and obviously a huge lifestyle change as well.
Currently have a Vascular Catheter for HD, and have HD three times a week. I have a an appointment for gettng set up for PD in a few weeks.
Was initally in hospital for 2.5 weeks while they waited for my haemaglobin to increase as I was severly anaemic, now back in hospital again due to high blood pressure. The high BP has cause severe optice nerve damage in both eyes which has affected my vision somewhat, but the Opthomologist has told me that hopefully it will fix it self once we get the BP under control.
I was having large BP spikes during HD but new meds today seem to have that under control.
Its still very early days for me and i have so much to learn and experience. After my initial shock at my diagnosis, i have come to realise that alot of people have long and full lives and CKD is not an automatic death sentence!
This forum is such a wealth of shared knowlege and experience, im glad i came arcross it. Thankyou to all who contribute to it, has been a lifeline for me at times over the past few weeks!
Posts: 1
Joined: Tue Aug 30, 2016 2:47 am

Re: suggestion... how about introducing ourselves??

Post by jerzsonpeter »

hello everyone iam new here. i have a recent kidney stone for the last month and my doctor told me to take up the medicine he gave me so about a week there is a 3 stone (size of a grain) have passed then after that in the same day before i leave for work i went to the toilet room to pee but something felt not right i cant pee and it is very painful.. i rushed in the hospital and the doctor told me that there is a stone stuck in my penis (sorry for the word) .. to cut a long story.. my doctor perform an operation to remove the stone that has stuck in my penis and then after the operation i was confine in the hospital for 2days.. my problem is there is still pain in my back (side pain and low back pain) that wont go away and sometimes i feel like i need to urinate but it wont go out.. what do you think? is there a bigger problems happening in my kidney? or there are stones left in my ureter?... i hope anyone can help me with this.. thank you..
Posts: 5
Joined: Thu Sep 01, 2016 4:29 pm

Re: suggestion... how about introducing ourselves??

Post by SusanBlazor »

Hi my name is Susan Blazor and I have had high blood pressure since 2011 and became Type 2 Diabetic since 2014. I live in Westport Oregon with my husband and my two children; Joshua and Caitlyn. Recently I had a random urine test done with a creatinine 300, albumin 30, and my car at <30 my concern is how long before I will be facing dialysis. Any thoughts I welcome. Take Care and God Bless. XXX


Susan Blazor
Posts: 1268
Joined: Thu May 23, 2013 2:49 pm

Re: suggestion... how about introducing ourselves??

Post by wagolynn »

Hi Susan,

This website should help you I hope.
Posts: 5
Joined: Thu Sep 01, 2016 4:29 pm

Re: suggestion... how about introducing ourselves??

Post by SusanBlazor »

Hi Wagolynn, :)

Thanks So Much Dear for the info!! :) This looks like great research!!! :) I appreciate you showing me this!!! :) Take Care!! God Bless You!! :) Have a Wonderful Week!! :) XXX


Posts: 1
Joined: Thu Sep 22, 2016 2:58 pm

Re: suggestion... how about introducing ourselves??

Post by Tankman »

Hello, My name is Marc and I was diagnosed with congenital posterior urethral valve aged 5 in 1968. I was lucky to have been looked after at the Shaftesbury Hospital in London by the late and great Sir David Innes Williams. Several re-implantations of ureters, nephrostomies, followed by a year with a vesicostomy and then a left to right trans-uretero ureterostomy. For all you bikers, that's like a "Pops" Yoshimura 2 into 1 power pipe single inlet to the bladder. Damage to my kidneys in the first 5 years of life means that my gfr is 38. Managing my BP with lowest dosage of ramipril and trying my best to be good to my body.

Off to have an explore on the forum and learn from everyone on here.

Best wishes to all

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