Hi everyone. I’m a new member who have recently been diagnosed with stage 3 Chronic Kidney Disease ( CKD ) and besides prescribing Statins for my High Cholesterol (which is 5.5) my doctor will not offer any further help at this time. He says my Chronic Kidney Disease is not at an advanced stage for him to refer me to a Nephrologist and a Dietitian. My GFR is 45 and my Creatinine 111 and I really want to improve and prevent my CKD getting worse but I’m struggling to do this on my own.
I’m trying to do my own research but some of the information I’ve heard and read is contradicting. Can anyone recommend source of helpful information backed up by research and personal experience? Also, does anyone take and notice any improvement with supplements and herbs such as Co Enzyme Q10, Vitamin D, K2, Alpha Lipoic Acid, Nettle tea and
cinnamon? I am Vitamin D deficient so i’ve being taking 25mg daily for many years now. I’ve only recently found out that I need to take K2 with it. However, I’ve read that K2 clots the blood so I’ve NOT started taking it due to my family history of blood clots. Does anyone know If these supplements work? Thank you.
Hi
First, begin to look for a new doctor. It's your health and if he won't abide by your wishes then you need to find a physician who is more receptive to your wants and needs. Not only should you see a nephrologist but you should also seek a referral for a Renal DIetitian. The sooner you begin the longer you can put off kidney failure.
To help clear up the way you are currently feeling, go to the website davita.com and register for a free, 90-minute Kidney Smart class in your area if you are in the USA. It will give you a lot of information on this illness and provide you with resources to help you maneuver through this. If you aren't in the USA or for even more information on CKD go to kidneyschool.org and you'll find a series of learning modules that will help you as well. Both of those sites will also help you develop questions to ask your new PCP and nephrologist about what else you can do to slow down the progression of CKD.
On the DaVita website I first mentioned, you can also look at their recipes for helping to slow the progression. Basically, you cut out beef, (all red meats), processed foods, eliminate smoking, and cut significantly back on alcohol. Also, cut back on sodium, protein, potassium, phosphorus, and calcium. None of these things should be completely eliminated but a renal dietitian will help you develop the correct plan for you that will help greatly. Gather up your last years worth of blood and urine labs and bring them with you for the RD to help develop your kidney-friendly meal plan.
Also, avoid any supplements that weren't prescribed by a physician. They aren't regulated and you can't be sure of the actual content in many of them.
This will get you off to a good start but begin by cutting out your PCP.
Thank you very much Mr Kidney for your encouragement. I will be changing my General Practitioner in the near future but that probably won’t make a difference as I live in the U.K. and medical treatment protocol is basically the same regardless of doctors but I will definitely ask again.
Hi GFR 45,
I am in total agreement that it is time to seek another GP.
One of my closest friends lives in the UK and has Minimal Change Disorder; also an autoimmune kidney problem, so I know the protocol.
She has a wonderful GP who listens, makes suggestions and works with her and her consultant; that is someone that you need on your team.
I know that it is protocol not to be referred to a nephrologist right away, but the right GP will be able to treat you as well as possibly refer you to a consultant.
As these great people have so lovely stated, your diet is a key to stopping progression.
All areas have been covered, so I won't repeat them.
Stand strong and advocate for yourself.
Do let us know your outcome.
Bet
Mr. Kidney - Why do you you refer him to DaVita's web site while at the same time tell him to stop eating red meats?
"On the DaVita website I first mentioned, you can also look at their recipes for helping to slow the progression. Basically, you cut out beef, (all red meats), "
DaVita's website contains a lot of "kidney friendly" recipes that contain red meat for CKD non-dialysis people. They have a whole web page of recipes for beef/lamb/pork: davita.com/diet-nutrition/r...
I wasn't sure if you were already aware that DaVita's website contained a lot of red meat recipes for CKD stages 1-4.
Very simple Steve. Not everyone has the same restrictions. DaVita offers those recipes for some folks who don't have that restriction. Initially, many RD's will have new to CKD patients cut out the red meat for a time to help the kidneys. When I first met my RD I was unaware of the cause of my CKD. I was advised to cut out all red meats and limit the other proteins to 8 oz. per day. By the second time I met with the RD, my nephrologist had determined the cause and the RD said I could include a three-ounce portion of red meat, well-cooked, every couple of weeks. By that time, I was feeling better with the meal plan we developed and made the decision to get my protein from sources other than beef. When my GFR had moved from it's low of 32 to it's "high" of 65, the RD determined that if I wanted I could have a beef meal once per week.
I didn't make the change to include beef. About 2 months later it was determined that I had gallstones. Even the leanest cuts of beef were going to be a problem.
Basically, until you know all of the health issues you have cutting out red meats is the way to go until a more knowledgeable person, your RD/Nephrologist, advises otherwise. My gallbladder is being removed next month and I'll have to make more adjustments to my intake. Also, regarding beef, the cuts with the most fat are the tastiest and the leanest cuts are not as tasty. My kidneys are doing fine, as my last GFR, early this month, had me at 57. However, with the gallbladder being removed, beef is out, and so are some types of fish.
I understand, but DaVita's website doesn't mention anything about restrictions and implies that the recipes are OK for anyone with CKD stages 1-4. Even if someone has no beef restriction, anyone with CKD stage 3 or 4 should eat a minimal amount of beef as there is a correlation between the red meat consumption and winding up on dialysis. Also, DaVita's website doesn't mention anything about eating grass-fed beef which seems to be much preferred by the dietitians I've talked to, especially for someone with CKD. I would think that DaVita's website would be a little more "up to snuff" about what it labels as "kidney friendly". For instance, I need to really watch my phosphorus and it would be good if they had very low phosphorus modifications or versions of the recipes.
Sorry to hear about the gallstones. Good luck on the surgery next month.
I agree in part with what you are saying. Perhaps you need to direct those queries to DaVita directly.
When I recommend a kidney-friendly meal plan and a visit with a renal dietitian it is to establish a diet for someone based on their individual lab values. I use many of their recipes but I also advise you make adjustments and not to take them at face value. Many of their recipes also call for some salt. If I followed those recipes my problems with high blood pressure would be way out of control. You have to make adjustments for your own personal needs.
The same goes for your phosphorus levels. Look at the recipe, substitute where you can to tailor the recipe to fit your needs.
For someone who has not yet seen an RD, DaVita is a good place to start until you know what to zero in on.
Which types of fish won't you be able to eat?
The information given me was a copy of a chart that the nurse had but it didn't mention where the chart came from so I can't help with that. I copied the information here for you. My instructions from them were to go only with the Very Low-Fat fish for at least the first 3 months as I recover from the surgery and continue to monitor my labs and see if the pain returns or my labs climb in areas.
Fat Content in a 3 ounce cooked Serving of Common Types of Fish and Shellfish
High Fat (10 grams or more)Herring, Mackerel, Sardines, Salmon (Atlantic, Coho, Sockeye and Chinook)
Medium Fat (5 to 10 grams)Bluefish, Catfish, Rainbow trout, Swordfish
Low Fat (2 to 5 grams)Tilapia, Halibut, Mussels, Ocean perch, Oysters, Pacific rockfish, Salmon (Chum, Pink)
Very Low Fat (less than 2 grams)Crab, Clams, Cod, Flounder/Sole, Haddock, Hake, Lobster, Mahi-mahi, Pollock, Scallops, Shrimp, Tuna
Well put, Mr._Kidney!