My doctor said I could eat cheese! Etc.

[LorrieC]

As you can tell, I am newly diagnosed and I am freaking out. My doctor said I could eat anything I want but to avoid SALT. When I asked if I could eat cheese, he said I could. That doesn't make sense, for cheese is high in sodium which is salt, right? I practically live on cheese because I don't eat much meat and I don't cook that much. Also, I use Neil Med Sinus Rinse every night which contains baking soda. I am not swallowing it. Do you guys think it's OK to use? I have also drink baking soda in water for indigestion, but I don't drink this often.

[Charlene_Coxhead]

Hi lorrie

You say your doctor told you that you have kidney disease is this your GP or renal consultant? Did they say what your renal function is as restriction will be different depending on stage.

Everybodies restriction are very different and what is a no go for one is ok for another. I personally am not allowed any dairy but that isn't a problem for me as allergic to it. Do you have a dietican that you can discuss you renal diet with.

You need to mention those medications you are taking as I would personal think you should not be taking them but you need a medical professional view not just mine as have no medical knowledge other than suffering with renal disease for 18 years.

My advise is try and stay as active as you can make changes to the diet, lose weight if needed, stop smoking if you smoke all this will hel keep a stable blood pressure.

We are all here for you. It's the unknown that is scary so try and get informed about your condition. I really hope you in the early stages as you can delay things with simple changes.

Take care

Charlene

[LorrieC in reply to Charlene_Coxhead]

Hi, Charlene,

Actually, I wasn't told I had CKD, but I saw one of my diagnoses on the doctor's summary saying "renal failure". That is when I freaked and contacted him. He is an internist and not a nephrologist, but he is referring me to one. I am registering for the class at Da Vita and I asked my friend to go with me, for she has Stage 4 and was never told! What stage were you eighteen years ago when you found out you had CKD?

[Charlene_Coxhead in reply to LorrieC]

Thanks terrible you found out that way. When I was diagnosed I was 20years old and already in late stage of stage 4 renal failure with only 20% function. They thought I would get to 2009 before needing a transplant or dialysis but beaten the odds and that's because I've followed strict restrictions and listen to every little thing I've been told. It's been hard but worth the effort. I'm now at 4.5% which happened in August this year before that I was stable at 7.5%. I'm starting dialysis after Christmas.

Try and stay positive you've been caught early so can really deal and progression of this disease.

[LorrieC in reply to Charlene_Coxhead]

Good luck with your dialysis. Are you on a list for a transplant? I would not be most probably due to my age and even if I was younger, I'm sure it would not be indicated with my other health issues.

[Charlene_Coxhead in reply to LorrieC]

Hi Lorrie

Yes I am on the transplant list tried the live donor route but it didn't work out that way for us, neither the direct route or the exchange program.

Your only at stage 3a so make changes now and you may never get to stage 5. There isn't an upper age limit in the UK it's all about quality of life.

I hope you get a good kidney doctor and dietican that can help delay the decline. All the best

[lowraind]

My nephrologist also told me that I did not have to change my diet. I did and my gfr improved 20 points. Enough said, for me.

[LorrieC in reply to lowraind]

I can't believe a nephrologist told you that you didn't have to change your diet! I am waiting for a call for an appointment and I will see what mine says. He has been practicing for 40 years so I hope he is up to date on recommendations.

[Smokey2Gabby]

My nephrologist told me the same thing. I saw a nutritionist and was told that cheese is a protein and counts toward my daily protein allowance. I also have to count the sodium from the cheese to my daily salt allowance. I'm trying to find a "low sodium cheese." I am also going to get a new Nephrologist. I am looking for a kidney specialist who does not tell me that "I can eat anything." Since I've gone on a plant based diet with small portions of protein my number went from 34 to 38. Get another Nephrologist and certainly get a renal nutritionist. You're doing the right thing by questioning the advice you've been given. Do your research. For some reason this disease is not always taken seriously by the medical profession. You have to put together a medical team that focuses on your needs and provides realistic, proactive advice. The goal is to slow down the progress of this disease and not to simply "pay lip service to it." This is your life and you have to take charge. Hope this helps. You are on point by joining this website!

[LorrieC in reply to Smokey2Gabby]

You are so right about this disease not be taken seriously by the medical profession. I go to several specialists who order CMP's for I have hypokalemia and if my K gets too low, I go into arrhythmia. Actually, I have been in tachycardia since I found out my diagnosis because I freaked out. No doctor has ever mentioned my GFR and when I inquire about my creatinine being a little high, several have told me I was just dehydrated and just drink more. I am so glad I found this forum. Everyone has been so helpful.

[Bassetmommer NKF Ambassador]

Hi LorrieC,

You are in a good place. We are here for you. First of all, don;t freak out, it doesn't help. Second of all, you are going to hear a lot of different things from different people. You need to work with a renal dietician if you can to see what is best for you. You said you were newly diagnosed, but did not say what stage you are in. If you are in stage 3 or above, you are at a place where you can make a big impact on retaining your kidney function. Stage four, you will need to become very diligent on what you consume. Become your own advocate by reading and learning as much as you can about CKD.

Learn what your labs mean. If you do not have access to them, ask your doctor for them. You need to understand where your disease levels are and what they mean.

My suggestions is talk to your doctor about seeing a nephrologist. The earlier you start your fight against this disease the better off you will be.

As far as the baking soda. I actually have stage four and was prescribed baking soda pills to help my kidneys. It lowers uric acid which is very harmful to the kidney and other parts of your body. I did not tolerate them, so he switched me to sodium citrate for the same reason. It has helped a lot.

Everyone is going to tell you what not to eat. Figure out what works for you. General rules for CKD are watch the salt intake. Watch potassium and phosphorous if they are elevated. And animal protein is difficult for the kidney to process so eating less is best. Cheese is an animal protein. But I do not eat meat and have very limited chicken and fish. So I do consume some cheese and eggs. Switching to more plant based foods is good if you like them but again, vegetables and fruits are high in potassium and phosphorous so I have to be careful. Its a balance game.

Write back, ask questions and let us know how you are doing.

[LorrieC in reply to Bassetmommer]

I am in Stage 3a. I think there are a lot more people who have this who don't even know. I called a friend yesterday to tell her I had CKD and she asked how I knew. I told her my GFR was in the 40's. She immediately went to her labs to look at her GFR and hers was also in the 40's! So, now she is upset with her doctor and she is going to jump him about it. It is the same doctor who never told another friend and he is now in Stage 5 and on hospice.

I am planning to see a nephrologist and a renal dietician. I am going to register for a class at Da Vita and maybe they or a nephrologist can refer me to a dietician. I don't have to worry about potassium, for I have hypokalemia.

I am wondering this: If my sodium, potassium, and phosphorus are within the normal range, do I still have to reduce foods containing these? I take 40 meq of potassium chloride a day, for if my level falls under 4.2, I go into afib. I have tachycardia since I learned my diagnosis and I have not yet converted. I have an appointment today to see a Ph.D. counselor so I can learn to deal with this diagnosis. I have (hopefully, had) Non-Hodgkin's Lymphoma and have been in remission since 2011. I've put that on the back burner since learning about CKD. Thanks for your input.

[Bassetmommer NKF Ambassador in reply to LorrieC]

No one here should ever tell you what to take or not to take. Always consult your doctor. I was at a 4O GFR for over 12 years. Become educated, which is sounds like you are doing.

Let us know how it goes.

[lowraind]

I am not a doctor and I agree that each person has different dietary needs. For me, I see how, once a person gets to stage 4, the doctors start telling people to limit potassium, phosphorous and protein. My belief is that if I limit those things now, I will not get to stage 4. So far that is holding true.

My greatest desire is to find a nephrologist who has ckd. I am pretty sure that their advice would be different from those who don't.

I also believe that the doctors look at where the money is:

1. When a person is first diagnosed, there are all kinds of test to run and money to be had;

2. When a person is at esrd, there is dialysis and/or transplant, again, money to be had.

In the middle of these two, not so much! Just my opinion. Also, my husband's nephrologist (my 1st one) told him there are so many more people who are so much worse off than someone at stage 3. Well, perhaps if more was done earlier, there might not be so many so much worse off. Again, just my opinion!

lowraind

[Smokey2Gabby in reply to lowraind]

I agree, the medical profession treats where the money is. There is little money to be made in stage 3 - 4. This is why we have to take charge of our health at these stages. I like your suggestion of finding a nephrologist who has cod. They would certainly be more committed and proactive.

[TaffyTwoshoes27]

My thought is that the Hippocratic Oath is "First, do no harm."

GPs, Internists, PAs and the like shld be looking at blood labs and watching out for their patient's GFR, creatinine, sodium....whatever.

I remember being told by an Emory University educated Internist during a general physical (at an Emory-owned facility) that my blood pressure was elevated. I told her it was "White Coat Syndrome" and she did NOTHING. No warning about long term physical problems (heart, KIDNEYS) with HBP; no prescription for blood pressure meds......nothing.

Forward 7 years, and coincidentally, at a free clinic I visited (b/c I knew I was very sick but had no insurance or idea of the diagnosis), I took my Labs and the SAME Internist was who I saw. She OVERLOOKED that my GFR was 23, said my electrolytes were high (didn't mean sh*t to me) and prescribed HBP meds. She said come back in 4 months for a follow-up. Meanwhile, the Nurse Practitioner told me to take 800 mg of Ibuprofen daily to help with my joint pain! I got that woman in a bit of trouble because #1: in GA, nurses are forbidden from prescribing or recommending medications, even OTC, to patients, and #2: Ibuprofen/NSAIDS are about the worst OTC drugs a person in CKD can take (but I wasn't told that I was in Stage 3/4 CKD, so I took the large doses of Ibuprofen).

I would be very leery of picking a Nephrologist who allowed his kidney function to get to CKD! It is like the shoe cobbler whose children have no shoes. Not all kidney failure is the result of disease/hereditary issues (like polycystic, etc.). LOTS of kidney failure statistics show that lifestyle choices of those in a higher risk situations, i.e., ppl with diabetes and HBP, are to blame.

I saw a GI Doctor whose father was on PD dialysis, and I told the GI doctor something about dialysis or PD that he didn't even know, and his OWN FATHER was on PD!

Listen, I worked as a paralegal in Medical Malpractice (plaintiff-oriented) for years. What I realized mostly is that people believe what a doctor says -- hook, line and sinker -- just because they have a MD degree!! I've seen ppl who went to the ER who were seen by the ER doc and told to go home. They died a couple hours later b/c the doc overlooked something.

As has been identified on here: YOU are your own, best health advocate. YOU need to do research, ask questions, get second opinions....whatever.

I am appauled that a doctor would write "renal failure" in their notes and not even talk to the patient about it.

Doctors are people. Their goals are to see patients, prescribe drugs, bill the insurance company and then go home to their family....period.

[LorrieC in reply to TaffyTwoshoes27]

This doctor was referred to me by my oncologist. He is a geriatric internist and very thorough. At my first visit, he ordered many labs, some of which I never heard of. He is the only doctor to even realize I had CKD, but why didn't he tell me? I would have never known if I did not read his notes. I am going to ask the nephrologist why doctors don't tell patients they have CKD.

I told my friend to look at hers and it was in the 40's. She had a doctor appointment in a few days and was going to ask him about it. Well, it fell to 28! She said something to the nurse practitioner that she did not know she had renal failure and the nurse told her she did not. I think when they hear renal failure, they think you mean end state. Still, the CNP did not tell her she had CKD. After she saw the nurse, she saw the doctor and he never said a thing, although he decreased her meloxicam from 15 mg to 7.5 mg. This tells me the nurse told the doctor my friend was questioning it.