CKD new diagnosis

[mackes]

Hello All. I am a Mum of two and the GP just diagnosed me with CKD. Filtration rate is 55 ml and my createnine is 96. I am so worried that I have cried myself to sleep. I have no high blood pressure, nor have I got diabetes. I am really worried that there are other reasons causing this and the GP just wants to monitor this via blood test and refer on when it is getting worse. Has anyone bounced back their filtration rate and how do you do it? I do not want this getting worse.

[WinJ3]

I'm not a doctor, but I can try to provide some general information that might be helpful. It's important to consult with your healthcare professional for advice tailored to your specific situation.

Chronic Kidney Disease (CKD) is a condition where the kidneys are not functioning as well as they should be over time. The glomerular filtration rate (GFR) is a measure of how well the kidneys are filtering waste from the blood. A GFR of 55 ml/min suggests a Stage 3 CKD, which is classified as moderate kidney damage.

Creatinine is a waste product that is normally filtered by the kidneys. An elevated creatinine level can be an indication that the kidneys are not working efficiently.

It's positive that you don't have high blood pressure or diabetes, as these are common risk factors for CKD. However, other factors such as family history, age, and certain medical conditions can also contribute to kidney problems.

It's important to work closely with your healthcare provider to manage and monitor your kidney health. They can help you understand the specific factors contributing to your CKD and develop a plan for managing it. Lifestyle changes, medications, and monitoring are common components of managing CKD.

Remember, anxiety and stress can also impact your health, so it's crucial to discuss your concerns and emotions with your healthcare team. They can provide guidance, support, and potentially refer you to a counselor or support group.

Again, consult with your healthcare professional for advice tailored to your specific situation. They can provide the most accurate information and guide you on the best course of action.😊

[mackes in reply to WinJ3]

Thank you for the info, very useful. I will need to keep my anxiety in control. My children are still young and I am thinking the worse. I have cardiovascular problems running I my family so really worried about a stroke/ heart attack😔

[userotc]

My mum (aged 68, CKD3) was able to almost double her eGFR from 36 to ~60 in 5-6y via a Nutritional Therapy protocol with the added bonus of successfully weaning off a BP drug. As youve experienced, medics dont have a clue how to do this so do nothing until ckd worsens. They generally only consider drugs until then if hypertension and/or diabetes are diagnosed.

If youd like some options for qualified Nutritional Therapists, let me know and Ill send.

[mackes in reply to userotc]

Userotc , thank you that would be really helpful. I have no idea where to start with the diet.I am worried I am eating the wrong food and ended up not eating at all, which is not good- I would be very grateful if you could send the details over🙏

[userotc in reply to mackes]

See below from which you can select eg specialism. Good luck.

theanp.co.uk/member-directory/

[Pisces101]

Ask your doctor to check albumin in a urine sample, too. That can be an option to learn more - and Get a full panel test of blood (check all the other values eg potassium, phosphate etc.) you will get to know what the normal range is and can compare. I was recently diagnosed at CKD3a (GFR= 50-53), and was utterly shocked. No diabetes, no high BP .. no symptoms. I have made some changes: exercise every morning (or whenever) for 30 min and walk more, drink a lot more water, eat more plant based. No meat from 4-legged creatures (creatinine). Have had about 4-5 small glasses of wine the past four months.. a much healthier life style. My GFR was 58 last time we checked. Going for a new check up on 10 Dec. Hoping for the best!! Wishing you lots of luck!

[mackes in reply to Pisces101]

Thank you Pisces101. Your words mean a lot. Again no sleep last night- constantly worried. Did you get a CT scan on your kidneys to find out if there are any other causes??

[mackes in reply to Pisces101]

Just checking in Posces101- have you had your blood result? I am the same- no BP problem, no Diabtes and no protein in urine. Do you have any protein in urine? If you have seen a nephrologist what did they say?

[Pisces101 in reply to mackes]

No protein. Really strange, but then there are cases like us. The nephrologist said it could have something to do with the membrane or a low graded inflammation. A biopsy might give an answer to that - will see what the nephrologist at the hospital says on 18 Dec. Whether I should do a biopsy??

[Willowdene in reply to mackes]

I was,diagnosed,with 3;CKD earlier this year and had to laugh. Fit and healthy good B/P always and for 75 very active no health issues so yes I laughed. My GP reassured me everybody’s kidney like all our organs in our body deteriorate as we get older. I’m only borderline. Stop worrying. My husband had a kidney removed for cancer early this year and his one kidney functions well of course you can live well with one kidney. Remember kidney cancer is Silent and takes years to grow without symptoms. It was only on a scan for something else they found it.

Enjoy your life stop worrying salt low but don’t go giving up that you enjoy we just don’t but of course don’t binge on bad foods all the time.

[Pisces101]

I am going to on 27 Nov.

[mackes in reply to Pisces101]

Fingers crossed for you🤞

[Pisces101 in reply to mackes]

Everything looks perfect!

[mackes in reply to Pisces101]

Fantastic- so I will put more energy into making lifestyle changes and fingers crossed🤞

[mackes]

I would love you to keep in touch with me. I feel so alone with this. I am becoming tearful just thinking about that I may never see my children growing up. I am determined to make changes to my life though- I have read (not sure if it’s true - but if you follow strict diet you may never progress to stage 4/5. Silver lining? Do you eat any dairy products or have you gone into plant based with everything?

[Pisces101 in reply to mackes]

I have always loved milk.. could drink 4 glasses per day! But i also love cheese. Since my blood values all show very normal values for everything except creatinine, i don’t think I have to be on any specific diet other than avoid red meat. But: I have reduced dairy products by not drinking milk, but still eating pizza with cheese topping (I make the dough myself now to avoid salt) and I have bread with cheese once in a while. My breakfasts are mostly oatmeal porridge made with water and a sprinkle of cinnamon with a fresh apple cut up ir a handful of blueberries - to avoid store bought breads a bit (but not completely). I don’t eat chocolate … but I really have no idea if this is necessary. I guess I need to feel I’m in control - but don’t know if I am! I am very anxious about the new tests on 11 Dec. If they show a positive change, I will relax a little. Oh!! The doctor put me on a low dose of BP meds! Just because that can be good for the kidneys. I saw a nephrologist - he put me on them.

[mackes in reply to Pisces101]

Pisces101

I went shopping yesterday and honest to God , there are lots of gluten-free and sugar- free products but very little salt- free. Perhaps this is why CKD is on the rise. It sounds like that you have a good regime going and I am sure your test will be ok. It is so hard to cook for the family, but I separate out mine to season differently. I don’t know if you’ve heard of Mrs Dash seasoning, but people say it is really good… Amazon is selling it. Oh! I have researched that menopause can cause it too and research show that taking oestrogen can help to repair the kidney. ( it was a medical journal that I have read), not sure if this is true but def interesting.

[Pisces101 in reply to mackes]

Interesting about menopause! Will do a little search . Will also check MRS Dash. The neph I saw said to be very careful with salt substitutes because they can be harmful in other ways. Phosphates. My husband has always had to add salt on his own - I’ve never used much salt. All other seasoning is fine. I had some incredibly bland restaurant meals these past few months. When I asked them to avoid salt they avoided all spices!!

[mackes in reply to Pisces101]

🤢yes , some of the blend food is really not tasty at all. I do not know if I ever adjust to that. I will also check out the Mrs Dadh selection. People say you can add lemon instead salt but not sure how that would impact - so much to consider…

[lowraind]

I would request a retest. The numbers, "Filtration rate is 55 ml and my createnine is 96." make me wonder. Usually, the lower your creatinine, the higher your egfr.,

[lowraind]

As I wrote the previous person, "Even if you are diagnosed with Chronic Kidney Disease, you should be concerned, but not worried. There is much you can do to take control.

I was diagnosed in 2017, made changes in diet and liquid intake. My egfr was 36. Since then, it has been 54.0, 54.7, 48.4, 54.3, 61.2, 53.9, 42.9, etc. My Nephrologist as concerned that, at my last blood test, it was 42. I tightened the reigns again and brought it back up to 50.

I wish I could be religious about my diet control and liquid intake. Unfortunately, actual life does get in the way. I totally agree with, 'if you want to help your kidneys as much as possible, you should read up about lifestyle changes'."

[mackes in reply to lowraind]

Thank you lowraind. It does put my mind at rest. I am hoping to see a dietician and the nephrologist. I have a niggling feeling that my menopause/ cardio- vascular function might be the cause. Really appreciate your response, feel so much better. Hopefully I will be getting back to strict regime with running and cut out meat ( I am not a big meat eater anyway) urine results just. Ame back completely normal- no protein- phew😀

[Pisces101 in reply to mackes]

No protein is really good! Much better prospects! Just keep looking for all the positives

The "normal range" that you use in your country (?) is different from the one we use in Norway. Here creatinine values are considered within the normal range if they're 45-90 ... since about 2020. Before that again, they used 60-105.

[mackes]

lowraind- really?? I did not know…. Interesting. I think the creatinine is elevated though.on the lab results it says that the normal range is 45-84🤷

[lowraind in reply to mackes]

This may be helpful:

kidney.org/atoz/content/can...

"Remember, your eGFR number is calculated using your serum (blood) creatinine level. So, anything that causes your creatinine level to go up or down can change your eGFR number, even if it may not be related to your actual kidney health. In other words, your actual kidney function (eGFR level) may be higher or lower than what is reported in your lab results, although this is not very common.

Some factors that can lead to higher creatinine levels (making your eGFR number appear lower than it might really be) include:

Eating large amounts of cooked meats

Taking creatine supplements

Recent high intensity exercise

High muscle mass (very muscular body frame, bodybuilder)

Taking medications such as cimetidine, cobicistat, dolutegravir, fenofibrate, ritonavir, or trimethoprim

Some factors that can lead to lower creatinine levels (making your eGFR number appear higher than it might really be) include:

Following a vegan or vegetarian diet

Low muscle mass

Pregnancy

History of an amputation or muscle wasting disease

Severe liver disease (cirrhosis)

The actual effect that these factors may have on a person’s eGFR number is highly variable. In other words, everyone responds very differently to these factors. So, it is very important to talk with your healthcare professional if you have concerns about interpreting your eGFR number."

[mackes]

thank you for this info , very useful…I will keep it in mind. I wish I could wake up tomorrow and everything would be back to normal😔

[Pisces101]

From: kidneycoach.com/kidney-news...

The narrative that kidneys cannot regenerate and that once you have CKD, there is nothing you can do about it is invalid. We have several studies showing that the cells of the kidneys can regenerate and repair themselves. From a naturopathic standpoint, if you can treat the driver of an individual’s CDK, you stop the continued damage caused to the kidneys. That is step one. Once you have that under control, you can support the healing of the kidneys by reducing inflammation and oxidative stress, reversing fibrosis, and removing senescent cells. Sometimes, a patient may need two or more of these approaches to initiate an improvement in kidney function. Our point? If you treat the person as an individual and not just a disease, it is possible to reverse and improve kidney function.

[mackes in reply to Pisces101]

Hi Pisces101

This is interesting. I have done so much research, my head is hurting. I got my bloods redone again but not much change🙁. I am still very puzzled- blood pressure is ok, I have no Diabetes. It really does puzzle me what is causing this. I really need to get myself together , I am so worried about the prognosis it is just an unknown🙁

[Pisces101 in reply to mackes]

It took a couple of months before I saw any change - after one month my GFR went down.. then up …but I’m far from sure it will last. Will know more after 11 Dec. The ultra sound I had 27.Nov showed absolutely nothing. Everything looks fine. The nephrologist I saw on 10 Oct expected as much - he believes it might be due to a low graded inflammation - But he did put me on BP medication because that can help the kidneys. Just 4 mg. I don’t know if they’ll ever find out why.. just have to try to do my best… it’s far from easy. Will you be doing an ultrasound? Any other check-ups? I’m going to the kidney section at the hospital on 18 Dec. They’re the ones who want me to take a whole bunch of new tests on 11 Dec. I feel I’m in good hands and they’re doing what they can. That helps… wishing you all the best!!

[mackes in reply to Pisces101]

Sounds good that they are doing tests. My GP wants to do nothing but monitor which contributes to my anxiety level. I am having to go to a private nephrologist and will ask my GP to do an ultrasound (if he agrees). I will continue monitoring my blood pressure, just in case… I wish I could just go through an MRI telling me where the problem is. I don’t even know how long this has been going on. .. I was really hopeful that the test was not right and that I don’t really have it, but here it is in black an white. God knows how progressive it is🤷 I really have to get a grip as it is affecting my mood and makes me so anxious. I will see a dietitian too.

[Pisces101 in reply to mackes]

I saw a private nephrologist, too. It was so good to talk to a spesialist..

[RAJS1986]

First thing you have to do ,"Be calm", whatever has happned till now forget it, consult with GP what causing your kidney damage & plan it accordingly ,remember more you have anxiety lesser control you will be having, switch to more vegeterian diet & give family more time , Enjoy as much as you can , still you can live a healthy life, in my 2year jouney i made lots of research on web & learnt that people with CKD 3third stage still live normal life & never goes in further stage..... So it's my personal suggetion be alert , make choices while eating, drinking & think always positive that i will make it.... I am also having three small kids & only person who earns for them.... so you have to think out of box & have to start new life again.... you are going to win ...... Believe it.....

[mackes in reply to RAJS1986]

Thank you RAJS1986. I know I have to go past this stage- it has not really sunk in. I am devastated to say the least. Looking on the internet is not good for me- it scares me more and more when I am reading different things. The GP is not interested in investigating the cause which is mind blowing. I am now having to fork out money to see the Nephrologist, as Pisces101 said if they treat the cause you have more of an option. Just had my bloods repeated not much change😕You are right positive attitude although it is not easy. I really need to get grips of my anxiety😬

[Blackknight1989]

The comment:

“The narrative that kidneys cannot regenerate and that once you have CKD, there is nothing you can do about it is invalid” is IMHO misleading…here is the research from the SINGLE (not several Billy one study) study:

“This research tells us that the kidney is in no way a static organ,” said Benjamin Dekel, MD, PhD, a senior author of the paper and associate professor of pediatrics at Sackler, as well as head of the Pediatric Stem Cell Research Institute at the Sheba Medical Center in Israel. “The kidney, incredibly, rejuvenates itself and continues to generate specialized kidney cells all the time.”

Also:

This research tells us that the kidney is in no way a static organ,” said Benjamin Dekel, MD, PhD, a senior author of the paper and associate professor of pediatrics at Sackler, as well as head of the Pediatric Stem Cell Research Institute at the Sheba Medical Center in Israel. “The kidney, incredibly, rejuvenates itself and continues to generate specialized kidney cells all the time.”

And finally:

The research, which was done in mice, also shows how the kidney regenerates itself. Instead of a single type of kidney stem cell that can replace any lost or damaged kidney tissue, slightly more specialized stem cells that reside in different segments of the kidney give rise to new cells within each type of kidney tissue

Thus, very little similarity to Liver cer or skin cells AND those with stage 3B/4 CKD will have almost no kidney cells that regenerate…just need to be careful with giving false hope IMHO again…don’t mean to be confrontational just to clarify.