Kidney Patient Guide

Hi my name is carol, i had a right nephrectomy at the age of 5, managed well with the remaining kidney until 2007 when i was diagnosed with a tumor. After having radio frequency ablation treatment in liverpool university hospital was really well until the end of 2009 where my kidney started to fail. I am now at gfr 17 and having preparation meetings with dialysis nurses and my doctor to see if i can start pd when the time comes. I have a scar that runs right along the middle of tummy hence the tests, ie laperoscopy to see if the inside scar tissue will stop me being able to go onto pd. My sister and my brother are both soon to start undergoing there tests to see if one or both are suitable donors. Im really not looking forward to the end stage, But hey im alive. I have suffered three cancers in my lifetime im sure this will be managable. Hope i can come back and ask lots of questions x

Hi im Richard

Im 45 and was diagnosed with Iga Nephropathy in March 2016. My gfr was 40 at diagnosis and rapidly declined to 19 by November. Im now at 14 gfr. I have had the screening for the transplant list and after many consultations have made an informed decision to start peritoneal dialysis which is predicted to start around June 2017.

A lot of life changes have had to be considered and im struggling with what could be the stages of grief. I travel a lot and have had to think about howvto manage this more effectively. I also attend the gym, 4 times a week although not been in the past month due to exacerbation of symptoms mainly lethargy and shortness of breath.

I would like to get back to the gym but im not sure what i can do when i have the peritonel catheter fitted. I got loads of questions and as you may have discovered like to talk. I would be grateful for expert input regarding this matter.

Thanks

Rich

Hi,

I'm Ouss, 31yo, coming from Luxembour. I'm here because my wife is dialyzed.

Praying every day that my wife will find a donor but unfortunately, she is O+ so the waiting will be long. Hoping that the artificial kidneys will be released in a few years.

Warm regards,

Hi, I'm peter... I'm not a patient but i like to help...

Same here, i am martin not a patient but works in a kidney hospital and want to help people suffering from kidney or other disease!
subchorionichemorrhagehealth care tips

Hi,
I'm Paula, 47 from Aberdeen Scotland. Two weeks ago today I had a radical laparoscopic nephrectomy. I have been bothered with my kidney for two and a half years. I couldn't wait to get my kidney out. The amazing this is I don't need to take any high blood pressure tablets since my op. I was on them for 9 years! Today I was able to drive an automatic. I have 4 cuts. 2 small and one about 4 inches and the other about 6 inches. I had a spinal and general anaesthetic. When I woke up from recovery the spinal had worn off and I was in agony. Morphine wasn't doing its job so I got something stronger. I am hoping to go back to work in 2 weeks. I'd be interested to chat to people who have had the same op as me. Thanks, Paula

JMan wrote:you should've started LOL.. Now I get to be the first.. darn, Steve beat me too it.. OK the 2nd

Name: JMan
Place: somewhere in london, England, Planet Earth, The Universe.
Weather: Sunny
Music: None at tthe moment but I can hear a grass roller squeaking and a hound barking above the sweet whirr of my mac:)
Mood: Pretty chilled.
Age: somewhere approaching 30
Kidneystuff: Original diagnosis ESRF in association with megacystic megaureter syndrome (malformed bladder & ureters) at about 5 years old.
Third renal transplant, in Jan 2001. Prev haemodialysis (9 years), treated for cancer, brief spell on PD.. and lots of other stuff like parathyroidectomy, etc etc Kidney patient for 20++ years or there abouts

Need/want to know more.. PM me or send an email

Cheers

Lol, I like this format of introduction. Next time, I will also introduce myself in this way.

I am a 48 yr old husband and father with young ones at home. My kidney issues began about 2 years ago with kidney stone 8mm I did not have removed right away. I began to then have blood in urine and leaking small amounts of protein in urine. My initial first screening/test had serum creatinine at 1.0, Egfr at 89, bun at 18. I immediately changed my diet to mostly vegetarian and some grains, ( quinoa, quinoa pasta, gluten free bread/buns for veggie burgers and veggie sandwiches and cutting Protein to 20-30 grams but that was all through veggies, beans and breads and no actual meat. I also began itching all over and had been having recurrent canker sores in mouth since kidney stone occurred which was my first stone ever. those symptoms did not go away until stone was removed. I then took the same blood and urine tests 2 more times over 12 mos and I brought my creatinine down to in the .8 range and Egfr up to the 110-113 range on both tests and BUN to 7.
I have never had the creatinine clearance test. I then once again developed another kidney stone that Dr said I should be able to pass (5mm). Well it didn’t pass and got stuck in ureter for up to as long as 3 mos and was not causing pain at all, the only pain I felt was once the kidney swole up and it was just a nagging pain that I figured was the stone in my kidney but was just a nuisance pain and was not sharp at all, just a dull mild nuisance. Once it was discovered had surgery right away but feared damage to that kidney as Dr said any obstruction over 6 weeks can cause permanent damage. Well they did surgery but simply blasted it back into my kidney (It was a 6mm stone) and had started growing into the wall of my ureter. Had stent for 3 weeks and figured after stent was removed that I would pass fragments but did not. They had me scheduled for CT 3-4 weeks later and found it was stuck in same spot and was 5mm (so basically they hardly blasted it at all, just enough to remove from ureter and send it back into Kidney) So went to surgery next day and they removed it by blasting out of ureter and then basket surgery (basically grabbing it and removing it) 3-4 weeks later stent removed and was having pain on both sides and changes in urine pattern, going less and then suddenly 4 weeks later going all the time and waking up at night to go Also. 3-4 weeks after stent removed had Ultrasound scheduled and the also ordered CT without contrast and Kidney is still swollen up. Radiologist while looking at other kidney asked if I had been told of any issues on that side and I said no but I didn’t inquire, figured Dr would tell me next day. At that appointment all they said was CT shows small 2mm stone in side of ureter where old one was but that is was just a small fragment and was not blocking and that Kidney was still swollen/oversized and had not returned to normal and said we needed to do nuclear medicine exam Mag3 I believe it is called to check function of Kidney. Did that yesterday and getting results today. Radiologist doing the exam did it on his and said nothing. My initial symptoms almost 2 years ago and numbers were similar to yours other than I had gout in both my feet for a couple mos that I seemed to fix with diet. Anyhow In last 4 weeks or ever since last surgery about 2 mos now, things have not been good with now pain on both sides, kidney still swollen, started itching all over again, cramps that come and go in calves, waking up to pee, high blood pressure, pulse has changed. So get my results today, was hoping that if the one Kidney was damaged by the obstruction that I would at least have the other one but given the pain on other side and radiologists comments and the Dr mentioning a cyst on my Liver as he was scrolling through CT scan that perhaps there is Cysts on the kidney that did not have the stone in it? But you would think that would be in the report or they would have maybe looked or mentioned it as I did tell them mos ago when I had the obstruction that I was having intermittent pain on the opposite side and the response was “there is nothing there” but I believe they were referring to stones or blockage. Anyhow, have wife and young kids, job I commute to and am very scared and like you feel like my kidneys have all of a sudden failed. Praying and hoping for good results today but with current situation and symptoms am not hopeful. Glad that I found this great board with so much info.

Hi tdr1013,

Just a suggestion - if making a long post, try breaking it into paragraphs, that makes it much easier to read.

Was the change in diet advised by your doctor, if not, have you told your doctor about the changes you have made?
We must have sufficient first class protein (usually from meat) in our diet for our bodies to repair, and replace cells, etc.
Living healthily on a vegetarian diet requires some knowledge of nutrition.

What are the blood test saying about Phosphates, and Calcium?

Stones can be an indication of failings in the calcium control system, Phosphate is involved in calcium control, Phosphate levels are controlled by (healthy) kidneys.
Itching is not uncommon with malfunctioning kidneys, the cause appears to be uncertain but some practitioners believe it may be due to high Phosphate levels in the blood.

Are you in the UK?

Hi my name is Steve, I am 57 and live in greater London.

I have had some kidney problems for about one year now, my creatinine level is 270 and eGFR is 22. I am not quite at dialysis level yet but have been told it's unavoidable in the future, and possibly/probably transplant.

I have just found the forum and I am very interested to learn as much as I can.

Hi Steve1960,

I find this website very reliable, look under Handbook, http://www.edren.org/pages/handbooks/un ... alysis.php

The home page to this website leads off to a lot of useful information. http://www.kidneypatientguide.org.uk/contents.php

After looking at these, if you have any questions post on the forum, I am sure you will get some sensible responses.

Best wishes.

wagolynn wrote:Hi Steve1960,

I find this website very reliable, look under Handbook, http://www.edren.org/pages/handbooks/un ... alysis.php

The home page to this website leads off to a lot of useful information. http://www.kidneypatientguide.org.uk/contents.php

After looking at these, if you have any questions post on the forum, I am sure you will get some sensible responses.

Best wishes.

Thank you very much.

I have one question and I will explain fully my circumstances before asking the question.

I have always been very healthy and never ill in my life. All of a sudden last Feb 2016 I was feeling quite ill. It turned out I had a very large stone blocking my right ureter, I had an emergency nephrostomy and after some investigation it was found my left kidney was basically non functioning, with the right ureter blocked my kidney function was next to zero.

I had a stent inserted with great difficulty to by pass the stone and my kidney function returned to close to normal, creatinine level of 140, it had been at 400 when I entered hospital. A few months layer I had the stone removed by laser and was finally back to near normal.

I have had a succession of out patient visits etc, and in April this year my creatinine rose quickly again, I had a stricture in my right ureter, basically the ureter has collapsed. I had another nephrostomy and several failed attempts to fit a stent, both ante and retrograde, I have had a nephrostomy for three months now.

The second blockage in April did a lot of mechanical damage, I had gross hydronephrosis, my right kidney became swollen and I am told like a balloon, you blow one up and it goes baggy after.

I have been referred to UCH for reconstructive surgery and will go on July 17. The potential reconstruction nvolves taking a flap of bladder and creating a replacement for the ureter, it's probable this would require moving the kidney, and it's also possible that they may take a piece of bowel to bridge the gap between kidney and bladder. This bowel use greatly increases the risk of infection, the whole thing is considered major surgery, and there is no standard operation, it's open up and see what we can do!

Finally, my question is, as I am probably on the way to transplant (according to my consultant maybe one year away to meet the criteria) should I live with the nephrostomy and associated bag, saving the necessity for two lots of major surgery, or should I just have both procedures?

I wonder if anyone has had similar or heard of anything similar?

Hi Steve1960,

This can only ever be a personal choice (bearing in mind the from the medics).

If I had to make the choice, I would go for the reconstruction, risks, and all, my logic being, if it works a transplant my not be necessary with all the baggage that brings. All the tissue involved will be yours.

Best wishes.

Hello everyone

I am Rob, 44, from Staffordshire, England.

Had my left kidney removed at the age of 3 due to it being badly diseased (don't think I was ever told exactly the cause).

Had lots of on going problems with my remaining kidney with constant infections etc.
Finally had a stent fitted when I was 37 due to an unknown blockage between bladder and kidney.
I have the stent replaced every six months.

GFR anything from 18-32 depending on state of kidney.
Creatinine anything from 125 - 292.

My stent is constantly colonising with bacteria and causing infections.
Antibiotics are becoming resistant to these infections.
Looking for advice and maybe support
Really starting to worry now

ras2701 wrote:Hello everyone

I am Rob, 44, from Staffordshire, England.

Had my left kidney removed at the age of 3 due to it being badly diseased (don't think I was ever told exactly the cause).

Had lots of on going problems with my remaining kidney with constant infections etc.
Finally had a stent fitted when I was 37 due to an unknown blockage between bladder and kidney.
I have the stent replaced every six months.

GFR anything from 18-32 depending on state of kidney.
Creatinine anything from 125 - 292.

My stent is constantly colonising with bacteria and causing infections.
Antibiotics are becoming resistant to these infections.
Looking for advice and maybe support
Really starting to worry now

I can feel your frustration, I had a stent for some time last year, for me the biggest problem was the almost lack of bladder control. I currently have a nephrostomy and that has had three infections since April. I can't give you much advice, but encourage you to keep your chin up. In fact you sound in almost exactly the same condition as me, I have one kidney not functioning, and a blocked ureter. My egfr is 19-22.

Do you have problems with bladder control? Personally I prefer the nephrostomy now.