Perplexed at GFR decrease after a month of changes???

[Ednamode]

I’m a controlled hypertensive, prediabetic 50-yr old female. No known specific kidney disease. I had GFR 13 for 3 years & the past month GFR was 7 and creatinine 6.6. After 4 weeks of gluten-free, dairy-free vegan diet, exercise, lemon apple cider vinegar nettle tea everyday, I lost 19 pounds BUT my GFR decreased to 6 and creatinine 7.9. I’m perplexed at why GFR did not improve. Am I not drinking enough water, is diet bad, or is kidney just bad?

[KelliC_NKF]

Kidney function may fluctuate but typically does not improve greatly by diet alone. Your GFR is very low, it is important that you see a kidney specialist (nephrologist) as soon as possible if you have not been seen already. High blood pressure and diabetes are the 2 main causes of kidney disease, so controlling those will be the most important factor in your kidney health. However, with a GFR of 6 or 7, it is unlikely that dramatic improvements will be made. Your doctor can discuss with you treatment options such as dialysis and transplant. For more information on GFF visit: kidney.org/atoz/content/gfr

[Ladybug_05]

Hello! Typically once you reach stage 5 CKD there is not much more you can do to improve your GFR. Like KelliC_NKF has said, it is important to see a nephrologist and discuss replacement options such as dialysis and/or transplant if you have not already. A great deal of change can also stress the kidney further, which won't help your GFR. Good luck!

[SaraEads]

You, if you have not done so already, need to see a nephrologist right away.

Do not try to self-treat.

[Cathy12156dsrjad]

I have no idea due to not being in the medical field but have u seen a nephrologist instead of just a medical doctor? He should tell u and also do ultrasound and other tests tofu d out to help give u answers. If not I suggest researching every possible avenue being extremely proactive in your health outcome. Sounds like from what u r eating u may not be getting enough of something needed in your body found out by blood tests. Have u had that done? Godbless u in your search and I’llbe praying for u to find peace in your answers

[TaffyTwoshoes27]

I also agree that, according to my Nephrologist, your GFR can fluctuate up and down a few points. You may want to know that whatever dialysis treatment you decide upon, it may take a month or two of preparatory work to start dialyzing. For example, if you choose PD, a surgical procedure will be performed to insert a catheter in you lower belly (and that will only be done if you are cleared by a surgeon as someone that does not have too much scar tissue and other issues that will detected by ultrasounds or other tests). I know people who were turned down for PD because of scar tissue That would not allow a catheter to freely move. After the catheter is inserted by a surgeon, it will be almost 2 months before you will start PD, which includes at least a week of training for manual (IV pole) treatments, and after 4 weeks of that method, you can go back for training on a dialysis machine (cycler) which allows you to do treatments at night.

Hemodyalysis is a whole different method that i know little about, but I know that a fistula is involved.

My nephrologist was emphatic that I not wait until the very last minute or I may have to be admitted via the ER, and the doctors will insert a chest catheter and start dialysis immediately. My neph says a chest cath is an infection waiting to happen and is much more maintenance than a surgically inserted stomach catheter.

I agree, get a nephrologist. They know so much more than a GP or PCP does.

BTW: my neph says that dialysis gives your kidneys 20% function. Medicare allows you to start dialysis at 15%, and, unfortunately (save a miracle from God), you have lost your kidney function, are in End Stage Renal Disease and will stay there no matter how you change your diet. Sorry! I am in the same boat, and I am on PD six nights a week at home.

Good luck!

[jobeth in reply to TaffyTwoshoes27]

My GFR went to 9 about a month ago. It had been going down slowly, and I had been able to get it back up by eating better by a point or two, but now it does not seem to matter. I did blood work again yesterday and it was still 9, but my creatinine went to over 5. My doctor wanted me to get dialysis started three weeks ago, but I wanted to wait and see if I could get it up again. I go tomorrow and will also go to the dialysis clinic to talk to them. I will be doing PD. I hope it will work for me. I found out through talking to my insurance company that if I go on dialysis, medicare will be retroactive to the 1st of the month I go on dialysis. My doctor told me that they can start using the catheter about two weeks after the operation. If that is the case, I am hoping I can get the catheter and go on dialysis the same month so medicare will pay some of my operation. One concern about going on dialysis is that I have one or more hernias that will have to be repaired at the same time. I am hoping that by going on dialysis now, it will preserve whatever function my kidneys have now instead of waiting until they are completely shot before doing something. I have polycystic kidney disease.

[Ednamode in reply to jobeth]

My kidney failure cause was never found so the dr just said glomeronephritis. I have a blood test next Mon & see dr on Tue. I’m sure they will tell me to start PD dialysis. I plan to write a letter about myself to seek a living donor since I’m still waiting on a transplant list (2016). Praying my numbers improve a little and praying for you to have a successful surgery. As your GFR went down, did the frequency or color of your urine change?

[jobeth in reply to Ednamode]

I noticed more bubbles in the urine. I seem to have more urine come out each time than I did before. I get up probably every couple of hours to urinate. My color hasn't changed. If there was any change it might be a little lighter than before. I had blood for one or two days, but then it went away. I have only had urinary infections once or twice a couple of years ago. I still feel good except I have leg cramps every night. If I stretch my leg and ankle, it usually cramps. I see the doctor today and will be taking a tour of the dialysis facility. I figure that if I start now, it will help preserve what function I do have of my kidneys and maybe they will work better with a little less load on them.

[TaffyTwoshoes27 in reply to jobeth]

Usually the leg cramps are caused by high Phosphorus in your diet. Try cutting back. My calves (especially), ankles and feet cramped up too. My sister (a massage therapist) said to put a bar of Ivory (only Ivory) soap under the bottom sheet at the bottom of my bed (on my side). I really did see a difference in the cramping.

Some people who are not prescribed a Phosphorus binder yet will use Tums. Look on davita.com to see a list of high phosphorus foods (especially breads, commercial cereals, milk products, etc.). The FDA does not require food manufacturers to put the amount of phosphorus in foods. Actually, I read that even chicken has some phosphorus in it.

There is some type of _______ Therapy (cannot remember first word) that Dr. Drew advertises as being very helpful for cramp relief -- especially in legs.

Also, cramping can be cause by dehydration.

[TaffyTwoshoes27 in reply to TaffyTwoshoes27]

It is called "TheraWorks" (for leg, ankle, calf cramps) and seems to have good testimonials. But, i do better if I watch out for dehydration and phosporus.

[TaffyTwoshoes27 in reply to jobeth]

BTW (and I know I am answering late):. Hospitals are required to have some sort of Financial Assistance Program to get Federal Dollars. I applied for Financial Assistance and my catheter surgery was paid in full by Medicare and the hospital. Look at the directory for your hospital and locate Financial Assistance Dept. When I have been approved -- 3 times -- (b/c I have no assets, single and am on SSDI), the assistance lasts for six months. I have had two hip replacements and other tests and have paid zero to the hospital.

[Ednamode in reply to TaffyTwoshoes27]

What was your gfr & creatinine when you had your PD surgery? I’d rather do PD than HD too.

[TaffyTwoshoes27 in reply to Ednamode]

My neph looked back in my records and I was 15 GFR. My creatinine was like high 4.0? I had other health issues (like mild COPD from smoking --I have quit since) and I was 60 yrs old, so the kidney failure was wearing me out (tired and shortness of breath) more than maybe someone who may be younger.

[TaffyTwoshoes27]

I am sorry, I do not recall Creatinine, but I have appt tomorrow with nephrologist and can ask. I believe my GFR was 15. It had gone down from 26 to 15 from CKD diagnosis in Jan 2013 to Dec 2015 (when I had catheter surgery). My nephrologist recommended I get surgery early Dec 2015 because lots of doctors go on vacation during holidays. He was going to Texas (from GA) for 2+ weeks. I started training on PD manuals in mid January 2016 (catheter was healed and ready for use). Started PD at home (manuals) around 3rd week of Jan. I prefer the cycler, but dialysis center makes you keep both in case of electrical outage. They also recommend you contact your Electricity Provider to get on a list of High Priority Electrical restoring (my electric provider has a form, and I have to renew it every year. It has to be signed by my Nephrologist). If electricity goes out b/c of storm or something, they get to High Priority people first to restore.

[Ednamode in reply to TaffyTwoshoes27]

Thank you for all your info/help. I have another blood test Monday & see my nephrologist Tuesday. Hoping for the best & preparing for the worst. Do you still work & active in sports like tennis with PD? I’m going to ask to be put on another transplant wait list.

[TaffyTwoshoes27 in reply to Ednamode]

Another transplant list? Do you know the info about being accepted by the transplant center to be put on the UNOS list? I will watch for your answer in the next couple days b/c you may just be wasting your time (and I don't want to waste my time typing the info if you already know)...

I try to keep somewhat active, but with the two hip replacements in one year, the mild COPD, six days a week of PD dialysis, cooking & cleaning on my own, I dont have much energy to do anything else. I also have to do my yard work sometimes. For awhile (during recovery and rehab from hip replacements), I signed up for Senior Services with my local county gov't and got some help for a few months with housekeeping. I qualified for Meals on Wheels, but they do not provide a CKD or dialysis diet -- only diabestic.