New patient

[Ramyhatem]

I just found that im a kidney patient. My both kidnies are damaged in grade 3, I'm 33 years old. All what I need is a diet system or eating program to keep the undamaged part working as I can. If someone could help me with this I will be so greatfull.

[Hidden]

Hi and Welcome,

You have come to the best forum for all of your questions. My best suggestion would be to go to davita.com for recipes. Along their menu bar, you'll find a drop-down under Recipes. There you will find many recipes for all meals and many seasonal offerings. The best thing about them is that each menu tells you the breakdown of items like sodium, calcium, potassium, phosphorus, and protein.

Additionally, you might also go to kidneysmart.edmeasures.com/... and find a free Kidney Smart class in your area. That will get you started on answering all of your questions and let you know where to go from the point you are at now.

Come back here as often as you need to ask questions and you'll find a lot of great people here willing to share. Best of luck.

[Bet117 NKF Ambassador in reply to Hidden]

Hi..

I am new here as well. Thanks to Mr._Kidney for making us feel welcome.

I was diagnosed with Membraneous Neuropathy in April. It was quite a shock as I had no symptoms; had my endocrinologist not run urine tests on me with protein, we would never have known.

I agree with Mr_Kidney about checking out these sites. The NKF also has great suggestions and an area where they give you advice about eating out.

Google it..

I also saw the nutritionist from the hospital where I am being treated. The biggest key is to watch your sodium and protein.

I am a lable reader who eats alot of fresh and fresh frozen veggies. I eat fruit as apples. Also salad..but low sodium or oil and vinegar dressings. Wheat pasta with veggies and no sodium sauce..I add my own spices.

I love hummus but eat the lowest sodium brands. I was told eggs are fine as well as 30z of chicken or fish. 12 g of protein..more depending on your weight. No red meat, cold cuts.

This is all new to me as well. My kidney function remains normal but they are trying to reduce my protein spilling. I had to change nephrologists in August as the original one that I saw was resentful of my seeking second opinions among other things. It was a rough time for me.

You will do great! We are all here for each other and to support.

Hope I was some help and welcome sharing with all of you.

[Zazzel in reply to Bet117]

Welcome to both of you!

Hi Bet 117,

I also had large protein spills for awhile. I developed high blood pressure and had to go on lisinopril. It not only reduced my blood pressure, but stopped my protein leaks. It is certainly not a drug for everyone as it can damage kidneys further and can cause side effects, but it is working for me. I am on a very small dose (1.25 mg) as higher doses caused my bp to drop too much. It might be worth a talk with your nephrologist.

Another holistic option is a suppliment called slippery elm, but never take supplements without checking with your doctor first.

Also, my holistic doctor told me that apples are great for kidneys, but they should be peeled. I guess the skin is hard on the kidneys for some reason.

Hope you get your protein spills minimized soon.

[Bet117 NKF Ambassador in reply to Zazzel]

Hi Zazzel,

Thanks for your reply; hearing from you helped.

Presently, my protein spilling in Boston ranges from 2.4 to 2.9 and at home..PCP 2+ ..just under 3.

Boston made no changes to the 2.5 ×2 a day.

My PCP, who is also a nephrologist decided to increase the dosage to 5mg ×2. Boston nephrologist was fine with this when I notified him

My BP runs 102/70 ..100/60..65 normally.

All of my physicians are in accord with the Lisinopril..I read on it, but for now no choice. My brother is a severe diabetic,which I am not and has been on it for years.

Any thoughts? Diet suggestions on your end?

As mentioned I did see the dietician in Boston..she was pleased.

I don't have a holistic physician..but am open to talk to you.

Thanks so much for your support.

B..

[Zazzel in reply to Bet117]

So, I'm a little confused, are you on meds for the protein leak? So, because your bp is naturally low you cant go on lisinopril? I think that's why I wasn't put on it at first. My blood pressure used to be low normal, but then shot up this past year. If you don't already have a home bp unit, I'd get one and take your bp every week or so. Mine went up slowly, but then it just shot up. My CKD caused it.

If you'd like to private message me, I can give you more info on my holistic doctor. I think different types of CKD and different stages require different diets. Mine is autoimmune so I have to be careful of anything that causes inflamation. I have lots of allergies and intolerances that need to stay in check.

[Bet117 NKF Ambassador in reply to Zazzel]

Hi..

Please private message me as I am not sure how to do it!

I was put on the Lisinopril when my protein spilling went from 660 to 1.0. The nephrologist that I was seeing at the time did not put me on this prior due to the low normal BP.

I was initially put on 2.5 and then she increased it to 2x a day. I haven't had an issue. So this is to try to reduce the protein.

I did order a BP band and will monitor closely.

I have idiopathic membraneous nephorophy which is autoimmune.

Also hashimotos thyroid which is autoimmune and medication controlled.

I have normal kidney function and no edema.

They deem me a symptomatic.

Got to run..will check in later..

Thanks...so much..

[Sirrahbed in reply to Bet117]

Hi Bet117 My husband was diagnosed with Nephrotic Syndrome last fall. It was discovered at a random urine tests that showed protein. What a shock as he is very healthy! Then his ankles would swell but stopped when he quit Norvasc. To discover the cause, he had a kidney biopsy in Jan 2017 and the diagnosis was then Membranous Neuropathy. The treatment we chose was Cyclosporin. This medicine has greatly reduced the proteinuria but big side effects are high blood pressure and reduced kidney function. He is now 39.9. Now THAT is scary! But, he is now being weaned off of the Cyclosporin and the hope is his disease will be in remission. We were told that MN is common and oftens reverses itself, but husband had such large protein amount <600 that treatment was urged quickly. They explained that the treatment usually lasts about 6 months and side effects were expected. We are hoping he will again return to normal when the Cyclosporin is completely stopped. He has been told to avoid salt and that is all as far as diet.

I hate reading anytime a physician is resentful when we want another opinion...how arrogant! Glad you were able to change. We are retired military and receive care at a military hospital, so we take what we are offered but have been pleased. I am also a kidney patient. Our Nephrologist was stationed elsewhere this summer and now there are two replacements. My husband sees one and I will see the other tomorrow. Hope I like this new one! Debbie

[Bet117 NKF Ambassador in reply to Sirrahbed]

Debbie

Please message me again...i was writing to you and lost the message.

I genuinely care and promise to respond to all messages...

Bet

[Sirrahbed in reply to Bet117]

Hi Bet, I new at this forum and thought I posted to your thread lol guess it was a private message? Debbie

[Bet117 NKF Ambassador in reply to Sirrahbed]

Debbie..

Sent you a private message reply. Look at upper right.

We are both new at this.lol

Bet

[orangecity41 NKF Ambassador]

Maybe best to contact your Doctor about a diet for you, as everyone's situation is different an might have different requirements.

[Hidden]

I agree with OC41. Either your doctor or even better, a Renal Dietitian. I have seen one two times since I found out I had CKD. Just a quick note about some of the things previously mentioned. I lost a lot of weight over the last 21 months and then found out I had CKD. The RD told me that the majority of the foods I ate that helped me lose the weight were no longer any good for me. They are not kidney-friendly. A couple of quick examples are wheat products, multi-grain products, some (all for me) frozen fruits and veggies because of the phosphorus and other preservatives used.

I also had to change nephrologists and put together a strong care team that will give me the best information available and accept my decisions. That team includes my PCP, nephrologist, renal dietitian, urologist and a retinal specialist. I will accept all of their advice but I have to know that once I make an informed choice they will support that.

[Sirrahbed]

Hi Ramyhatem, I also was diagnosed as an adult - for damage that occurred as a young child between 3 and 12. I had the reflux disease that was repaired with two reimplants and they call it RN or reflux nephropathy. I know images have always shown small scarred kidneys and recall being told I had about 50% function but it was never followed after the reflux was fixed - I simply stayed on continual antibiotics to prevent UTI. In my 40's a random tests discovered the proteinuria and high blood pressure and I was sent to Nephrology. For about 15 years I have stayed the same and have been stable. I started meds for blood pressure and cholesterol as preventative, and told to avoid aspirin and salt. That was about it. Good luck finding diet info and plenty of stories here