Stage four

[kaeyreed]

So my husband was told today he is stage four CKD! His gfr is 29 and his creatinine was 2.36. My question is can these numbers change for the better or is this just all around bad news! Also anyone else with stage four, how do I feed him? He is also a diabetic! Thank you!

[Charlene_Coxhead]

Hi Kaeyreed

This must have come as a shock and it's a lot to take in but please try ad stay strong and positive as I do believe remaining this way does help. Yes we have are highs and are lows and thst is natural. He will get angry and you will get frustrated but remember your not angry with each other just the situation you find yourselves in.

I was diagnosed at 20 with only a gfr of 20, I remained off dialysis till January 2019 so I did 19years. I was originally told I would need dialysis in 2009 but lasted another 10years and I credit this on my consultant and a lot of hard work on my behalf. I don't have diabetes so can't offer any dietary advice on thst bit I do have the added complications of food allergies.

I am no doctor so please I can not stress enough that you need to consult with a kidney dietician but these are the things I did.....

So to begin with he needs to maintain a well balanced diet, reduce his sodium intake so that means you need to stop adding salt to meals or boiling water etc, don't use pre made sauces, takeaways are high in sodium and ready meals too so these need to be limited, maybe a treat every now and again. You need to maintain a healthy BMI so if he needs to lose or gain weight now if the time to do it. Stop drinking dark sodas like Pepsi, or coke, drink plenty of water as at this stage he won't be on any fluid restrictions, also limit coffee too, I actually got into green teas which to begin with I thought I would hate bit now really enjoy. He needs to reduce his dairy intake as that can make his phosphate levels increase and cause itchying. If he has an issue with his potassium he needs to limit the high in potassium vegetables and fruits as important this stays under control. At some point he will need to reduce his protein level but that isn't until stage 5.

If ypur partner can stay as active as possible that would be good even if it's only a 10 minute walk it all counts.

I'm not saying you have to life like a monk but if you make these changes now they really might help prolong his renal function. Everyone is very individual and what works for one doesn't work for everyone.

All the best and there is always someone here to help and listen

Take

Charlene

[SN23 in reply to Charlene_Coxhead]

Very well said Charlene!

[lowraind]

Yes, these numbers can change for the better. The numbers fluctuate depending on many things. I found this on the National Kidney Foundation site:

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

It could be something as simple as dehydration, or it could be something worse. Other sources for information:

National education, support and advocacy organizations:

• DaVita Kidney Disease and Dialysis Forums is well known for their recipes but they also have a forum for patients too.

• Renal Support Network provides many support and advocacy services including a phone support line.

• AAKP is a comprehensive resource focusing on the quality of life for kidney patients through education, advocacy, patient engagement and the fostering of patient communities.

• National Kidney Foundation provides a portal for patients too.

Also, click on the posts and/or topics at the right and you will find a wealth of information. You can also click on the circle at the top of this post and find many of my posts and it will also lead you to many other posts from people who are dealing with ckd, including ckd and diabetes. My husband has both, and many times, I just skip the starches, especially in recipes that call for pouring something over rice or pasta, or I prepare the starch on the side and use it for myself. Particularly look for posts from Mr. Kidney on this site. He does have both and I am pretty sure that he has moved himself to stage 2.

Good luck,

lowraind

[Bassetmommer NKF Ambassador]

Hi Kaeyreed,

I too am at stage four with diabetes. Totally doable. The things that Charlene said is exactly correct. The big issue with being diabetic is that you have to limit your carbs which makes it tricky for a renal diet. Plant based foods are best. Pasta and rice are good for the kidney but not good for diabetic. So try replacing those with things like cauliflower and even zucchini noodles in small amounts. I got my husband to eat them also by adding lots of garlic and onions.

I have discovered that my home made bread does not raise my glucose as much as store bought. High fat meals also influence my glucose so I watch the fat in my diet. I do not eat meats at all and very limited chicken or fish. It is very important to get and maintain his glucose to as normal level as that has a huge impact on his kidneys. By changing my diet, I was able to bring my A1c down to 5.7 from 9.2 in less than a year. I use less insulin which has helped me to lose 35 pounds. (Insulin can make you gain weight, which makes it a nasty circle...more weight; more insulin and so on.)

You might be able to raise his levels depending on the cause but you definitely can hold on to what he has with proper diet.

[KidneyCoach NKF Ambassador]

The advice you've already been given is perfect. I would add that you could ask your nephrologist for a dietitian consult to help you personalize his dietary needs. Wishing you all the best. Blessings

[Hidden]

Best thing I ever did was go to a renal dietician. They can map out a plan specific to your husbands needs. I am also diabetic and once I knew what to eat it was pretty easy.

I had an acute kidney injury. I went to the ER and my creatinine was 2.6 and my gfr 15. I did get better with treatment and diet so I'm back to stage 3. It really depends on the individual and what's causing the failure.

In my case they think a combination of infection and antbiotics sent my kidneys over the edge.

[ILMA54]

Just to reinforce what others have said, keeping weight down and blood pressure under control (and in your case dealing with the diabetes) are the best things that you can do to preserve kidney function. I spent ~10 years with my GFR in the 20s and my creatinine at 2.4-2.8.

Over the last two years, I have been in a somewhat stressful job, so I did not exercise regularly and gained 10-15 pounds. I also had to switch BP meds, so there was a period where my BP was not consistently in the desired range. As a result, my GFR started to drop dramatically last year. I am now on a transplant list, but it appears I will need to start dialysis soon.

As the stock performance reports state, "Past performance is not a guarantee of future returns." Most of my blood levels for Potassium and Sodium and other minerals are still in the normal range, but were I able to go back, I would have been far more aggressive in cutting out sodium and limiting the alcohol I drink earlier in the process. Not saying either was the cause, but with the weight gain and unstable BP, they certainly did not help.

Hope that helps, and best wishes.

Regards,

Magdi

[Carosuz2016]

I m also a diabetic and eating has presented a problem with diabetes it’s limit your carbs and with CKD it’s no salt,limited protein , no caffeine , no dark colored sodas ! No dairy or limited really low and most everything has carbs, sugar, salt and it protein ! I’m actually wondering how people are expected to eat! Just get you a book or talk to. Dietian and do the best you can. I’m sorry ! I have stage three CKD! Best wishes!

[kaeyreed]

Thank you everyone! We have appt with dietician on the 8th and waiting for kidney specialist appointment! All your information helps!

[kaeyreed]

Hey everybody can I ask ya’ll one more thing? Does stage four ckd give your body a funny smell? My husband has never been one to have any real body odor but now he has this weird smell! It’s not like normal perspiration odor it very odd! Idk if it is ckd, diabetes or htn! But it is pretty strong! I know he can’t help what’s going on and he is very clean so idk why the odor! I’m just very worried that it’s not good!