Margie59674 years ago

Hello Lu89,

You have come to the right place.

There are many people here with, different CKD situations that will be able to help you.

Can you tell us a little about your labs.

How long have you been diagnosed?

What was your GFR level at the time of diagnosis?

Have you had any further testing?

Do you have hypertension or diabetes?

What is your creatine level?

Your BUN level?

Lu89 in reply to Margie59674 years ago

Hi Margie5967, thanks for your response.

I was diagnosed with Ckd in Spain when I was 16 years old, nearly 14 years ago. I was never told on what stage I was back then. Back now I am stage 4, in August 2018 My EGFR was 20 and now is down to 18.

My creatine is 274, my BUN was not checked by my doctor.

I do take high blood medication and it keeps it under control. Aside from gout I do not suffer from anything else.

My doctor’s letter says that I have been referred to a low clearance clinic but I am unsure what will happen there exactly.

Thank you for your time x

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Margie5967 in reply to Lu894 years ago

Do you know the cause of your CKD?

I have been CKD for the last 5 years, however it was not flagged until I changed doctors.

They think the cause of my CKD is the use of NSAIDS.

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Lu89 in reply to Margie59674 years ago

I had repeated pyelonephritis due to reflux from my ureters since childhood. My left kidney never grew much and I got it removed when I was 18 because it was causing me infections too. My right kidney tried to compensate the left one by growing more but all the infections I had caused it irreparable damage.

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Ruthy35 in reply to Lu8910 months ago

I am in similar situation but at moment my egfr rate is 26 my renal clinic has said if it drops to 23 or under I will be called in to discuss next stages treatment etc. It has made me anxious but I am having another blood test next week and hopefully things will look better. I had suffered an infection nso maybe this reflected in last results

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MAS_Nurse4 years ago

Hi Lu69 and welcome to this caring forum. It may be helpful for you to ask for advice and support from a Renal Nurse Specialist at the hospital. He/she works alongside the medical team to ensure good renal health management. They provide information and support so that you can make an informed plan. The Renal Nurse Specialist will support patients and their families when making treatment decisions, management plans and future care decisions. It maybe useful to prepare a list of questions to take to your next consultant appointment. Perhaps the Renal Nurse Specialist would be able to attend the appointment with you?

The aims of the supportive low clearance clinic are to ensure that you are receiving the most appropriate treatment to slow the decline in your kidney function and to monitor and manage effectively the symptoms associated with chronic kidney disease. Other members of the medical team are also available at the low clearance clinic [eg, Renal Pharmacist, Renal Dietician, etc]. Please stay on this caring forum where you will be supported by other members. Thank you and best wishes.

Lu89 in reply to MAS_Nurse4 years ago

Hi MAS_Nurse, thank you for your time replying to my post. I really appreciate it. I was wondering if you could tell me how to get in touch with a Renal Nurse? Will this be part of the low clearance team or do I have to ask my nephrologist?

Thank you, I hope you have a wonderful day.

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Socky4 years ago

Hi Lu89,

My GFR is 16. I was diagnosed with CKD in June after I went to see my primary doctor for foamy urine, my GFR was 30 at that time. I had a biopsy in mid September and was diagnosed with IGAN. I will have more labs drawn this weekend and will follow up with My Nephrologist next Friday.

I was referred to transplant in November and I will meet the transplant team in February. I have not started dialysis. My plan is to do Peritoneal Dialysis. I already toured the dialysis center I was referred to. Besides being a bit tired and having mild gout I am not very symptomatic. My nephrologist basically told me that they don’t only look at lab values, they also look at how the patient is feeling. What I have been told at a Kidney Smart class and at the dialysis center is that I should start dialysis before I’m really sick to try to preserve some kidney function. I have a strong a feeling we will be talking about PD and possible PD catheter placement with my next appointment. I anticipate that my GFR will drop to 15, that will place me at End Stage kidney failure. My GFR has been dropping by 1 every 4 weeks 😖 As you said, every case is different.

Lu89 in reply to Socky4 years ago

Hi Stocky, thank you for taking your time to share your experience with me. I wish you the best for the future.

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lolls29 in reply to Socky4 years ago

Hi, sorry to hear about this. i pray it all works out for you. My hubby is on stage 4 as well, his egfr is 17%. we also dont have a live donor and dont have much help with nephrologist. we live in South Africa. i am really concerned about his well being as he is always tired. i will add u to my prayer list daily. best of luck

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Lu89 in reply to lolls294 years ago

Awww you are so kind. I wish the best for husband. Stay strong.

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rabbit014 years ago

I am assuming you live in UK? I was diagnosed at 18% eGFR four years ago and aside from seeing the nephrologist every four months and having blood tests and blood pressure checked every couple of months no other treatment was given to and I have never been referred to a renal dietician or low clearance clinic. The only advice I have had was to cut down on salt. Like you I don't have the option of a live donor. I was told it was normal to go on the list once your eGFR reaches 15% or you are within 6 months of requiring dialysis.

When my eGFR dropped to 15% in Q1 2018 that is when the nephrologist started to talk about getting on the transplant waiting list. I don't know if different health authorities have different steps but all I can say is that in the south east there are six steps required. These are 1) doing an exercise test on a treadmill, 2) a special set of blood tests 3) echocardiogram, 4) a chest x-ray and 5) an ECG as well as 6) an interview with the transplant surgeon. By the time that the process actually started (i.e letters being sent out requesting appointments etc) it was July 2018 and I was down to 13%.

I can only talk about my experience but I have found that the whole process is onerous and I was given no "map" at the start of it. I was not made aware of a "Renal Nurse Specialist" and I wish someone had offered me help understanding what was involved and getting through it all. I have found that these steps have taken several months to complete as there are long waiting lists to get appointments with the various facilities. For example there was a three month waiting list to have the treadmill test. Also (again just based on my experience) the correspondence between the nephrologist and the other departments moves at a glacial rate.

I have not had the meeting with the transplant surgeon yet so therefore am still not on the transplant list. Now my eGFR is down to 10% and I have had to give up work and am having to start dialysis soon.

It may be different where you live but my advice would certainly be to follow the advice given by the administrator below as if you can see the Renal Nurse Specialist perhaps he/she can accelerate the process to get you on this list or at least provide you with the help that the administrator has outlined. I do wish you all the best.

Irelandy in reply to rabbit014 years ago

Hi Rabbit, I have just read your post and I agree with everything you said. It is appalling how CKD is treated in the UK. Nobody tells you anything until it's too late and then we are put on a box ticking conveyor belt. I think it's about time there was a campaign to raise awareness of it and reform the way the NHS treat suffers. Good luck with your treatment!

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Bunkin4 years ago

Hi! When I found out my disease was really bad, was 3 years ago. My GFR was 12. I worked really hard to maintain that. Was put on transplant list in 2017. I have no living donor either. My GFR is down to 7 now. My labs were bad this time, my appointment is today and I expect him to tell me it’s time for dialysis. I think you have a long way to go before you face dialysis and even transplant list if you can maintain your numbers now. Hope this helps you. You’re in my prayers. God can do anything😀

phoenix454 years ago

Hi Lu 89. As you have said, every case is different. I was diagnosed with CKD stage 3 some 12+ years ago. As my EGFR was declining quite rapidly (then around 30) I was given a fistula and also referred for tests ready to go on a transplant list.

Personal circumstances, some 2 – 3 years later, brought about a move to a different health authority and after a few months I was taken off the ‘transplant pending’ list as it was felt that my condition had stabilised somewhat.

Moving on, my EGFR was still declining but then reached a stage where my nephrologist thought it advisable to prepare for dialysis, and as my original fistula had been recently compromised in an accident, it was arranged for a new fistula – now 2 years ago. I had one appointment with a dietician – it turned out I knew more about what I should be eating than she did!

A further change in circumstances meant another change of hospital/health authority. My EGFR is now, again, steady around 10% and while I suffer no effects other than minor fatigue (I’m 74 in a few months time) my nephrologist is content just to monitor my condition.

I’m frequently being asked if I’m on dialysis and people express some surprise when I say that I’m not. I’ll admit to being fairly active – I have a young, high energy dog that I walk (well, he runs) several times a day and I’m sure that this exercise helps me as well.

rabbit01 in reply to phoenix454 years ago

Thanks for sharing your story and I hope you continue to remain stable.

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lolls294 years ago

Hi Lu89, i know exactly how u feel. My hubby is also on stage 4 with egf of 17%. He is 41 years old has hypertension as well. We also dont have a live donor with little help from nephrologist in answering questions. we live in South africa. i try my best to research as much as possible from the net. I wish u everything of the best on your treatment ahead. Please feel free to email me as i think we could help each other. Stay strong!!!

Raystoke4 years ago

I have 14% kidney function left and not on any waiting list. It will largely depend on your state of health. My consultant tells me I qualify for the list at 15 eGRF, however, as I am quite well, he'll wait until I am 13% or less before placing me on the list.

Personally for me that suits as once I am on the waiting list I cannot regularly travel and will be restricted to the UK which will be very inconvenient.

JOJOSMITH1234 years ago

My mother was diagnosed stage 5 back in Nov 2017 at Egr15. She quickly went down to Egr8. She starts PD diaylis in May 2018 and did ok. She was told in November 2018 that she could have a break from dialysis for 2 weeks...She has been off Dialysis for 9 weeks and her PD tube is due to be removed. They say she is stable??. She is 80 this year. She at have to go back on in the future but she had just amazed me. It seems the dialysis kick started some of her kidney function which can happen apparently...I wish you all the best on your Kidney journey..

Bunkin4 years ago

Hi. I was diagnosed in 2003, kind of by accident. Had gone to ER for something else. They told me did you know you have PKD? I said no is there a treatment they said no so I just blew it off thinking no big deal. Then in 2015 went to ER for diverticulitis, they said did you know you have PKD? Yes I know, sorry I forgot about it! Well by then my GFR was 11 I think. That was at thanksgiving. In December, started a kidney program with supplements, exercise and diet. Saw a nephrologist in February 2016. Got my GFR up to 17. Went on transplant list in 2017. Don’t have a live donor. Now my GFR is 7 and doctor says will probably have to go on dialysis this year. I watch closely the new technology that’s in progress. I do believe that the bionic kidney will be available. I can do dialysis until it is. Hope this helps you. Prayers for you. God can do anything 😀

sharonlyn4 years ago

i just recently joined a facebook group...natural kidney journey...everyone who has ckd needs to join this group...i have been eating the way that is outlined in this group since the beginning of march...i have lost a considerable amount of weight...i have gotten off my blood pressure meds...losartain and hydradraline...and a diueritic lasix...i have been working on getting rid of my diabetic med from 2 times aday to 1/2 a day and sometimes not even that...i was a stage 4 ckd at 26 now i am stage ckd 3b at 41...i have gained 15 points...it is similiar to vegan but you cut out sugar...oil...salt...potatoes...tomatoes...no processed food at all...mainly a plant based diet... water and herbal teas are fine...low potassium...low phoshorus...i feel really good...the people who started this group were able to get her husband off of dialysis...and he has been off of dialysis for 14 months...there are a couple of people onsite who have accomplished that...others are raising their gfr's dramatically...all with diet...it is a great group and i am so thankful that i found them...i mean 15 points is terrific for just a month of dedication...i am working to get to stage 2 or better...now this is my experience with this way of eating...everyone is different but i found out i ckd not because my doctor told me but that i looked at my labs...if you are really serious in having better kidney function at least check out this group...

sharonlyn in reply to sharonlyn4 years ago

i have been vegan since 2016 june...but vegan helps some but this way of eating is amazing...i am no longer on the edge of the cliff by my fingernails...i have hope now...you will too...this group is so encouraging and supportive...

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Twinkie1 in reply to sharonlyn3 years ago

Interested in this group. How do I get added?

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