Any Advice Welcome! : Hi I'm new to this... - Kidney Disease

Kidney Disease

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Any Advice Welcome!

Hi

I'm new to this forum and I'm not sure whether I should be on here or not!

In April 2018 after a routine blood test I was informed that I have an unknown autoimmune disease which my hepatologiest has been monitoring for the last 20 months!

I decided to join this forum as my previous CT Scans highlighted that I have multiple small cysts in both kidneys which are of no concern! My right kidney has 1 2cm hyperdense cyst, again of no concern!

I know no one is medically qualified to give advice but is there anyone on this forum who's has multiple cysts who's improved the health of there kidneys by natural remedies or by healthy eating?

I do have a collapsed bladder and a history of reocurring water infections since 1994 and at one point was admitted into hospital as an emergency! Since then I've had two bladder stretch operations to reduce infection travelling to my kidneys and many many years of daily antibiotics

Any advice welcome?

Marietta1772

18 Replies

On your recent blood labs do you have results for eGFR and creatinine?

in reply to

Hi Mr Kidney

Firstly thank you for your reply!

My GFR calculated abbreviated MDRD 60 ml/min

Serum Creatinine 86 umol/L

Regards Marietta

in reply to

One test result usually isn't enough. It is usually the average of your labs over a few months. Make sure that all of the people on your Care Team know all of your medications and various health issues. Keep us informed.

Bet117 profile image
Bet117NKF Ambassador

Hi Marietta!

Welcome! We are happy to have you!

This is a great community with many wonderful, supportive and knowledgeable people.

I can understand your frustration and debate.

First, I would put together a medical team who communicates openly with you in plain language as well as the other members of your team. This is so important to promote the best plan of action and health care for your individual needs. If you are pleased with your hepatologist, I would print out your labs checking off any areas which flag and discuss them with him/ her. Ask the nature of your autoimmune disease - even if it appears to be idiopathic or unknown.

If you are also seeing a Urologist for your bladder issues, I would do the same as well as your PCP and have the three of them consult.

If you are being referred to a nephrologist, I would include him/ her.

It appears that you have several issues going on at the same time, which diet and food choices may be very different for each.

Autoimmune disorders are based on an overactive immune system where your doctor can determine treatment such as medications or any homeopathic supplements to best benefit you.

My thoughts, see your doctors and ask for a referral to a dietician or nutritionist who deals with patients who have the medical concerns that you do.

A good dietician will be able to look at your labs and medical issues and make good food suggestions as well as choices which will be nutritious, appetizing as some foods which are beneficial for your hepatology issue may not

be kidney- friendly.

Seeing someone in the know for all issues is the best place to start.

I am sure that this may feel overwhelming, but reach out for suggestions from those in the know.

Please let me know how things go for you.

Stay positive, advocate for your health and stay safe.

In my thoughts.

Bet

in reply to Bet117

Hello Bet

Many thanks for your indepth response which I must say has thrown me a little especially your comment about putting together a medical team who will openly liaise with me! I've noted that your the Ambassador for NKF, what does this actually mean in laymen terms?

My Hepatologiest and Nursing Specialist both lovely ladies thought I had PBC but unfortunately my later monthly blood tests in 2019/2020 did not support this theory! As time progressed my health was up and down like a yo!yo! Last September /October my LFT's shot up and into the red causing my GP to call me at home, it just so happened the following week I saw my consultant who requested more blood tests and a further CT Scan! By the time all the results came through my bloods for the very first time had almost returned to normal delaying a possible liver biopsy. My lastest flare happened just before the lockdown and all future blood tests have been delayed.

My ongoing water infections I manage myself by drinking lots of cranberry juice and pearl barley recommended by my urlogiest who I saw at the end of last year, he was trying to avoid a third bladder stretch operation which was suggested by a private urologiest!

In 2015 my gallbladder was removed. I've already undergone fibroscan/ ultrasounds CT and MRI. The latest CT scan was to check some exisiting growths on my lungs are not related to possible Sarcoid which has not yet been rules out by my hepatologiest.

I seem to get discomfort pains in both keeping dney areas from time to time which in most cases seem to follow a water infection!

Like I said earlier I wasnt sure whether joining this site was the right thing or not to be doing as my urologiest said the small cysts in both kidneys are nothing to be concerned about which I came to terms with. I was just wondering how to improve the health of my kidneys, hence joining your forum!

I already eat fairly healthy and have lost 3 stone in weight and until the lockdown attended the gym almost daily. I still have a further stone to loose which I'm currently focused on.

Oh, forgot to mention that I have high chorestrol of 6.3 and awaiting appointment to see Lippy Consultant! Note! All of my family have similar chorestrol readings so could be a family gene !

Presently, health wise I'm not to bad but would like to improve my kidneys health! Is there anykind of detox to clear these multipal cysts? What actually causes them?

Regards

Marietta

Bet117 profile image
Bet117NKF Ambassador in reply to

Hi Marietta,

Gosh you have been through a time of it and have shown strength to take care of yourself.

I suggested a Health Care Team who will openly liaise with you means that that your team explains laboratory and test results, discusses causes for conditions, answers questions and makes suggestions to you in plain language rather than just the clinical medical terms. The point is that you leave the appointment with knowledge and a plan best for you so that you don't wonder what the issues or recommendations mean and why they are suggesting them. Many consultants braise over the issues leaving the patient wondering what was meant. Where your cysts come from and how best to treat them. Also, to stress the importance that each consultant and your GP share laboratory/ scans and test results so that each area works together to best treat you.

Each prescribes medications which the other need to be aware of to avoid interaction.

Your Hepatologiest and Nursing Specialist both sound lovely, but what reasoning did they give you for your diagnosis and did they repeat labs to confirm your diagnosis and share their findings with your GP?

As far as the kidney cysts; I would ask your urologist what he/ she recommends to treat them and what foods would be beneficial to you. Remember that you have had a gall bladder removal where your liver is adjusting adding kidney cysts.

Typical kidney patients consume a diet which is low sodium( 1500- 2000mg per day) involves no red meat, but chicken, fish and eggs are better choices. Processed foods as canned soups meats as sausage, bacon and cold cuts as well as salty snacks and crackers are discouraged.

Diets rich in fresh fruits such as strawberries, blueberries and apples are suggested as well as vegetables such as onion, peppers, cauliflower, zucchini squash, eggplant cabbage and salad with cucumber and lots of onions and peppers and drinking plenty of water.

Potassium and phosphorous are monitored. So lab monitoring is important and keeping records to reflect changes. Each person is different with different needs.

I appreciate and applaud you for seeing to your kidneys, but recommended that your hepatic consultant be involved as she will know foods good for the liver as well.

So best to initially speak to your consultants.

I hope that this helps and answers all of your questions.

Please take care of yourself and reach out to me or any other members at any time.

We are here for each other.

Warm thoughts,

Bet

in reply to Bet117

Hi Bet

Wow your fingers have been busy which I truly appreciate. Unfortunately I'm not sure when I shall be seeing my hepatologiest again due to the lock down but I shall endeavour when possible to use one of my 4 LFT blood test forms supplied by my consultant when it's safe to visit the hospital again as I'd like to know how things currently stand.

Re my urologist ...no follow up appointments have been discussed therefore I guess it's all down to when another kidney/bladder flare up happens, therefore in the meantime I will carry on with my healthy life style and browse your website for further advice.

Many thanks once again and have a nice day/week

Marietta 1772

Bet117 profile image
Bet117NKF Ambassador in reply to

Any time, Marietta.

If I can be of further support, please let me know.

Bear in mind, the purpose of this forum is for support, not medical advice.

Your best bet is to call your consultant even for a Tele call.

Take care of yourself and please stay safe.

Bet

KristiS_NKF profile image
KristiS_NKFAdministrator in reply to

Hi Marietta,

To answer your question about NKF Ambassadors they are folks who have a great deal of experience with kidney disease, dialysis, transplantation and/or living kidney donation that make them uniquely qualified to help us build and maintain this online community. :)

Best,

Kristi

in reply to KristiS_NKF

Hi KristiS

Many thanks for clarifying my question!

I wish you a pleasant evening !,

Kindest Regards

Marietta1772c

I think you have answered your own questions. A healthy person is encourgaed to have a healthy style of living and be under regular observation , how much we who have issues. There is a very popular psychological theory - SDT - Self Dtermination theory . It posits that when people's basic psychological needs for 1 autonomy = being intentional , volitional , doing things that are congruent with your inner core values, endorsing what you do at the highest level of reflect 2 competence 3 relatedness = sense of belonging, being supported , supporting others , people flourish , internalize learning and are intrinsically motivated . Your diet , exercise, lifestyle is not just for your getting good blood tests , good health but inherently enjoyable or at least you identify with their value. So how we are motivated is important , how competent we are dieting, getting exercise , getting help . and how much support we are getting. This place supports all 3 needs

in reply to Allank

Hi Allank

Many thanks for your reply which I appreciate!-

Since being diagnosed with an unknown autoimmune disease I've managed to keep fairly fit and have lost 3 stone in weight with only a half a stone to go to be in my healthy weight range, however I'm aiming to loose just over another stone!

Before the lock down I attended the gym daily which made me feel good about myself and took on nunerous challenges to raise funds for a couple of charities.

I class myself as fairly fit for my age but unfortunately this unlnown autoimmune disease flare's up from out of the blue which can last for days or weeks.

I'm not asking you to answer this question but I was wondering whether these small multiple cysts can disappear with detoxing my kidneys of over a period of time?

Again thank you

Marietta1772

Sunflowers2005 profile image
Sunflowers2005 in reply to

My kidney dr. Said to not worry about them and I have them in both kidneys

in reply to Sunflowers2005

Thanks Sunflower for reply! Keep well 🙂

I was wondering what is the cause of these cysts

I don't know about detox , but I guess surgery , maybe radiation, cancer therapies might help.

in reply to Allank

Hi Allank

The multipal cysts I have are of no concern so I'm informed by my urologiest, in other words there's nothing to worry about, there not cancerous! I just wanted to know if there was away of get rid of these cysts by a different healthier eating plan which I'm not expecting you as a person to answer but maybe Bet can give me some guidance!

Take care in the meantime and keep safe

Marietta

What is your age. That can also be a factor in determining ckd.

I'm 67 but look young! 😉👍 lol

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