One kidney with multiple peripelvic cysts - Early CKD Support

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One kidney with multiple peripelvic cysts

Badnews4me2 profile image
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I am a 74 year old woman born with one kidney. I have recently been diagnosed with stage 3 kidney disease, which might be considered fairly normal for one kidney but Ultra sound and CT scan showed multiple simple peripelvic cysts. I had creatinine of 1.05, Bun of 27 and eGfr Of 50 in Jun. Kidney function test showed some protein in urine.

Doctor asked me to take a non-fasting blood test in Sept. which showed creatinine of 1.50, bun 25 and eGfr of 34. Fasting blood tests used to determine stage as I understand. eGfr was 66 in 2013.

My doctor has not given me any suggestions on how to preserve the function I have now. What are others doing to help themselves in this regard?

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MAS_Nurse profile image
MAS_Nurse

Hi there,

Welcome to our community. In the first instance, I would urge you to ask your doctor to refer you to a kidney specialist as you need professional medical advice to help preserve your remaining kidney function. Here are some links to research-based medical evidence and advice that should help you get to grips with your situation and inform you of what you need to ask your doctors about to help you. A key factor is going to be reducing high blood pressure and getting it under control by medication and diet. Making any dietary and lifestyle changes suggested below will benefit your kidney health.

Kidney Research UK:

1) Chronic kidney disease: kidneyresearchuk.org/condit...

2) CKD stages: kidneyresearchuk.org/kidney...

3) Living with kidney disease: kidneyresearchuk.org/kidney...

4) Edinburgh Renal Unit:

1) CKD stages: edren.org/ren/gp-info/ckd-m...

2) Blood Tests: edren.org/ren/edren-info/bl...

Kidney Care UK – Polycystic kidney disease: kidneycareuk.org/about-kidn...

Hope this helps.

Best wishes,

MAS Nurse and Moderator

Badnews4me2 profile image
Badnews4me2 in reply to MAS_Nurse

MAS_Nurse,

Thank you so much for your response, it is very informative. It appears that most of what can be done now is under my control, such as eating correctly, losing weight and exercising to keep my blood pressure down. This diagnosis was unexpected as no one in my family has had kidney disease, (all of my brothers are older by at least 8 years) the youngest is 82, the oldest one being 92.

RickHow profile image
RickHow

Hi.

I can relate. I am 70. I too have one kidney. I have been called stage 3 CKD but it must be understood, as you seem to. The CKD staging is based up a formula which consider what an average, normal person of our age, sex, race should be, with "normal" creatinine. It does not take into consideration so many things it should. For example US! A person with one kidney, in their 70's, is NOT normal and in fact being called stage 3 CKD IS normal for such a person. Yes you are right about how our egfr can be different (I am told to just monitor my creatinine level and ignore egfr) based upon fasting or not. When you fast, you creatinine level will be higher than if you do not fast and drink a lot of water. So which is a more accurate measurement is debatable. How many people live their daily life fasting? None. So is this a good way to measure creatinine? It's a debate. It is another flaw in the CKD formula. My personal experience with egfr, lets say over the past 2 or 3 years, is I range from 38, up to 52. No rhyme nor reason. I will get a higher result (52) then for no change in my life, the next one 3 or 4 months later is 40 or less. As my doctors tell me, CDK stage 3 is MODERATE kidney disease. So do not go into a state of panic. And as we age, even perfectly healthy kidneys will decline in measurements over time.

Protein in urine. You did not say how much. But all people have some amount of protein in urine. SMALL amounts are normal.

Now the cysts. On my one kidney, I have a single clear cyst which is so large it practically covers my entire kidney. All my doctors (kidney, primary, urologist, oncologist) tell me just to not pay attention. As long as it remains clear, all is okay. There is no treatment unless it becomes so large it presses on another part of the body and causes pain. At that time it would be drained a little. But it will just eventually refill again.

What do they tell me to do to preserve function as much as possible. The standard things. Avoid too much salt, beef, soda. Get moderate exercise (walking) daily. Drink plenty of water. Basically just keep your diet within the normal daily guidelines of how much to consume in salt, etc. Having the occasional beef, or soda, or pizza, etc. will not kill you. IF there is measurable beyond normal amounts of protein in urine, to keep my protein intake more limited.

Badnews4me2 profile image
Badnews4me2 in reply to RickHow

RickHow, Thank you for your response. Not having a conversation with my doctors left me not knowing the severity of my situation, I like to know what I am dealing with, so this has been very unsettling for me. You comments have reassured me and I appreciate the time you took to respond. My creatinine rose and EGfr dropped fairly fast, but now seems to have stabilized, maybe as a result of Cipro, which was prescribed several times for recurrent bladder infections or from the actual infections.

With regard to drinking water, should we be drinking as much water as people with two kidneys? Doesn’t that put extra stress on the one kidney?

My diet is pretty good, but I have been trying to limit the amount of protein that I eat and also have been taking my blood pressure on a daily basis.

RickHow profile image
RickHow in reply to Badnews4me2

Hi. Understand that IF your Creatinine increases, your eGFR will lower. So no need to pay attention to both numbers. I watch just my Creatinine. Here is an example why. My last Creatinine level was 1.5. This was top of the range considered NORMAL by the lab that tested my blood. BUT this gave me a low Stage 3 CKD level. So on one hand they are saying my kidney is functioning okay (top of normal range, but for one kidney this is great), but then labels me CKD. My doctors yell at me to pay attention to my blood results for Creatinine, Bun, etc., etc., not EGFR. Concerning water. I take in about 64 ounces (some days such as in summer a bit more, some days when busy a bit less) daily. It does not stress the kidney as one might think. Think of the kidney as a filter. It has a series of small filters inside it through which the blood flows. These filters take out (or are supposed to) toxins, etc. They "monitor" how much water to keep in your body and how much to take out. You are not putting stress on it by higher consumption.

As for protein, don't go crazy by avoiding too much. Your body still needs protein. For a woman the recommended about is 46 grams per day. Try to stay in and around that level. Going over a few grams here or there won't ruin your life. I keep a piece of paper on my counter. For whatever I eat I write down the amount of protein. Then total at end of day. After this process for 2 or 3 weeks you can easily identify where you are going too much, or if you have cut out too much.

Badnews4me2 profile image
Badnews4me2 in reply to RickHow

RickHow, Thank you again for your response. 😊

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