Meeting a Renal Dietitian

Wow! What a long day. A couple of extra stops on the way home plus the 1 hour and 45-minute drive to the appointment and then back home. I want to say it was productive and perhaps when I wake up tomorrow it will look more so to me.

We spent about two hours speaking to the RD going over my med list, physician list, lab results and meal plan. Two meds I'm taking need to be adjusted so now I'll be calling or visiting a couple of doctors to see what they think. I knew that to lose the weight I've lost I would have to make changes in what I was eating. Portion control as well as the times I was eating and especially what I was eating. I actually did this successfully for the last 18 months but have hit another plateau over the last month and that will get this moving again.

However, the changes we went through today are going to drastically change what I'm eating. I'm having to give up a significant number of foods that I like but are not good for me. What's weird is that I've been eating healthy for 18 months and lost the weight but over the last 7 weeks I've switched to a kidney friendly diet and hit a plateau. Now with the changes, she has suggested maybe that will be the needed kick start to get my scale to show lower numbers. But, guess what? The new kidney-friendly diet may cause a slowdown in weight loss. Why? Because I'm not eating a lot of food. What I am eating will be enough to sustain me so it will be up to my exercise program to get my weight down any further.

I really don't have a choice in this. My GFR is at 32 and the first thing I was told was that with that number I could be evaluated and eventually be placed on the transplant list. More research. On UNOS.org I found a lot of information regarding everything you always wanted to know about kidney transplants (but was afraid to ask). Most were put out by the Mayo Clinic (in Minnesota). Now I know how I'll be spending my weekend. I hope all of you have good weather and get out and enjoy the weekend outside.

[Zazzel]

Bravo to you for being proactive. I know you can make the changes and lose the rest of the weight needed. Keep up the good work. Thanks for sharing your journey and inspiring the rest of us to stay focused. I need that right now as It appears I'm having a flare up of symptoms, so your post came at a good time to remind me to stay strong and focused on eating right and taking care of myself and to do everything in my power to take care of me, then offer it up and release the worry that is out of my control.

The thing is that you do have a choice. I have heard several stories of people just giving up and the inevitable happened more quickly than it had to, but that was their choice. What they chose to do - go on dialysis or not - eat a kidney friendly diet or not, was their choice, and there is no judgement in that. True, we can't control the outcome, but we do have a choice on our actions up to that point, and It is your choice to fight back and do what you are doing, and that is right for you, and we support you here in that fight. I'm writing this as much for myself as for anyone who wishes to read it.

Happy reading and many blessings to you.

[Hidden in reply to Zazzel]

As soon as I hit "submit reply" I realized I should have changed a few things in the post. There was never any doubt that I was going to follow her dietary instructions. I was completely caught off guard that what I was doing for 18 months to lose 130 lbs and tweaking it a bit about 7 weeks ago was going to be enough for just a tweak or two more to make it totally kidney-friendly. Surprise to me that there were still so many other things that I had been eating in moderation to be successful in weight loss that I now have to not eat to keep the kidney's working at optimum level. Does Purina still make a Rabbit Chow? Back tomorrow.

[Zazzel in reply to Hidden]

oh, I knew that I just have heard myself say the same words when people say my diet is so restrictive (since I have food intolerances as well), how do I live with it. I say,. " I have no choice." But the reality is I do, and there are times I choose not to follow it and I feel cruddy like today. I guess I was writing that more to me than you. Ha! Sometimes you need others to point out the obvious to you, so thank you!

[orangecity41 NKF Ambassador in reply to Zazzel]

Yes Zazzel know what you mean. When get off the diet you can feel the difference, and quickly get back on it.

[Kathryn471 in reply to orangecity41]

Yes so true.

[Zazzel]

Do tell what the foods are you need to cut out are. I'm curious as I've been told nothing.

[Hidden in reply to Zazzel]

I can tell what foods I have to avoid, but I want anyone who reads this post that that list is just for me. My situation is for me. Someone else may have to eliminate similar foods but not to the extent I have to. Of course, saying that there are some who may even have a more restrictive meal plan.

This is a short list of what I must now avoid: bananas, apricots, orange juice, dried fruit, sherbet, potatoes (unless I leach them), tomatoes, nuts and seeds, whole grains, bran cereals, wheat/multigrain bread, cheese, pancakes, waffles, brown and wild rice, rice mixes, beans, baking soda/powder (in baking), ham (any cured meats), condiments, sauces and dressings.

There are many other things to avoid, but I've cut them out in the last 18 months to lose all the weight I've lost. Things like bbq, bacon, sausage, hot dogs, pizza, chips, pretzels, lunch meats, and biscuits. On the very positive side, I have to avoid kiwi, brussel sprouts, artichokes, beets, okra, greens and spinach (It's a good thing Popeye didn't have CKD), chewing tobacco/snuff, and lima beans. (See Mom, I told you they weren't good for me to eat!)

I guess the biggest surprise was that I am supposed to eat 8 oz. of meat per day. This includes chicken, pork, seafood, red meat, and turkey.

There are a number of things that I can't eat but, I never ate them anyway. Candy, shortening, milk, grapefruit, wax beans, eggnog, cake, and sardines among them.

That's my list.

[taivin98 in reply to Hidden]

Sounds like the dietician is doing a good job. You don't mention that you should be drinking lots of water or do you need to? It all depends on what's going on.

I'm surprised they still recommend meat. Meat proteins are larger than vegan ones. I do veggie & fruit smoothies with a vegan combination pea protein powder formula so I know exactly how much protein I'm getting (you get used to it).

I got interested in changing my diet and lifestyle many years ago, so it's not such a shock for me to cut out things not recommended for CKD people (plus thinking vegan protein powder actually tastes great).

The thing with the rice is that brown rice is more dangerous than white since the arsenic from the ground it grows in is mostly in the husk. All this time people have been switching to brown for healthier. It also depends on where the rice is grown (parts of CA and India have rice lower in arsenic). When people boil white rice don't rinse it (or do); that powder is the extra nutrients added to the rice. But people are usually changed to a more bland diet due to another reason

My situation may be different than most; I have chronic kidney stones and need to monitor my oxalates due to the stones are calcium oxalate (going into my 3rd ESWL). My GFR is dropping and the urologist just shrugs. So proactive it is...

I had to cut chocolate...that cut my heart out. It is, what it is; so I look at eating as a chore to make my body keep going and concentrate on other things for pleasure...like living and watching my family grow. Good luck to you.

[Hidden in reply to taivin98]

Thanks for that input. I was shocked about the 8 oz. of protein she said I should have daily, but for now, I'm going to follow her directions. Everything in moderation.

From what I've learned, the only reason for cutting down on fluid intake is when you are on hemodialysis and I'm not there. Water is my only drink but I am from time to time allowed to have a cup of coffee or a glass of iced tea. Both are decaf and no sugar.

I changed my diet and lifestyle almost 2 years ago and lost 130 lbs. I'm currently on a plateau and have been stuck there for a long time. The dietitian said my weight loss may slow down because of the kidney friendly diet. I think the hardest thing for me to get my head to understand is that the foods I switched to that enabled me to lose that weight are now, by and large not good for me.

Continued good luck to you in your challenges.

[Hidden in reply to Hidden]

It is very interesting that you meeee told to avoid nuts, seeds, and whole grains. However I know not all doctors are completely up to date on studies. Those are things that were considered no-now due to their phosphorus levels. However, it's been discovered that we only absorb 10-30% of phosphorus from plant/vegetarian sources. This is huge, because now dietitians are advising that we are able to consume them, which in turn can allow us to reap the benefits that these food sources do have.

[Chequers in reply to Hidden]

That's interesting as my dietician has also told me I will need to cut out those phosphate foods.

[Hidden in reply to Chequers]

Actually, you shouldn't cut out any of those things. Phosphorus is something to cut down and if you are also diabetic you must cut down a lot, but not cut it out completely. Just something to keep in mind.

[Dixidude39]

Mr_Kidney: I first took DaVita's FREE "Kidney Smart" 2-hour course one Saturday morning in a nearby DaVita dialysis center, conducted by a staff RN. I left with some great handouts, and access to a solid web site. I also had one session with a renal dietitian, and frankly didn't feel like I learned anything really new. I'm frankly surprised that I have to eat white bread, white rice and other low/no fiber foods. I'm about to turn 78, and with one kidney, have an eGFR of 27-29. My right ureter & kidney were removed a year ago due to cancer. As for a transplant (if that becomes necessary), consider a small but growing practice I saw unfold when a healthy 50 year-old man donated one kidney so that a 72 year-old woman could get a kidney from a live donor. Twelve donors/recipients were involved in this "chain." They were from all over the USA. I believe the 12 procedures were done on the same day.

[Hidden]

My understanding is that the Renal Dietitian gives you specific information tailored just for you based on age, other health issues and their degree, gender, and race. I completed a Kidney Smart class about 10 days ago. What I learned there was valuable because it helped clarify some things I didn't realize I was confused about. It also gave me some vocabulary to understand what my lab values actually meant.

I had to go online to find a Renal Dietitian and had that scheduled before the class. It was beneficial to me because I had, over the last 18 months, lost 130 lbs and had made major changes to my diet and lifestyle. What I found out, and again for me, was that a lot of the foods I had switched to help me lose weight were no longer good for me to consume because they forced my kidney's to work harder. That's difficult for me to understand but I accept it because I don't have a choice (my apologies to zazzel). I don't wish to give up many things that an early and timely demise would bring so whatever I have to do, I will do it.

I do agree with you that the more information and research you do, the stronger you drive to hold off dialysis or transplantation, the better off you will be. For me, that really is no choice. I have to do it. I may hear things that I already know but there is something oddly comforting for me to find out something on my own, or through contact with others in similar situations, and then hear from an experienced professional who deals with CKD on a daily basis for years.

[orangecity41 NKF Ambassador]

Thanks for sharing. That is great news on your help from dietitian. Also good are adjusting your meds. I had to go back on daily Prilosec regimen per gastroenterologist, which read may not be good for kidneys, which makes diet more important. I had to choose between possible damaging kidneys more or preventing cancer.

I am sticking to my renal diet and exercise program and so far has stabilized. We are blessed with choices for our health.

[Hidden in reply to orangecity41]

Tough choices. Good luck and many healthy years to you.

[orangecity41 NKF Ambassador]

Thanks Mr Kidney. Many healthy years to you too. Keep sticking to the regimen.

[jobeth]

I have studied many diet protocols on the web that are plant based. Some specific to disease prevention or to heal from them. One doctor made the comment that if people would go with the plant based diet when in stage 3, or 4, they might never get to stage 5. But the doctors tell us that there isn't anything we can do, and that diets don't really make any difference until our kidneys are failing, so we don't do anything soon enough. Now I am at GFR 12 and being very strict. So far I have had much more energy and am doing better. Will take a blood test in a couple of weeks to see how it is doing.

[Kathryn471]

So you don't have to be at 15 to get on list ? Thank you so much for sharing this with us. Sounds like your in good hands! I will be looking up the web site .

[Frankie24]

Interesting that they told you you could be evaluated for the transplant list. My doc. who is a researcher at one of the big hospitals in Boston still has not made the recommendation to begin testing for the transplant list and my GFR is 20, my creatinine is still pretty good though. I guess it is different from place to place and person to person.

[Hidden in reply to Frankie24]

It's not like I'll be placed on the list by Monday. It's that I'm close enough to get the evaluation started and she did notice that my GFR is dropping quickly. I meet with the new nephrologist on the 5th of next month and I'll bring it up to him then. Right now I can say that I don't see myself taking those steps. I've done a lot of research since I was diagnosed and almost all of it is about CKD, modalities of dialysis and other related issues like diabetes and hypertension.

I've read that it's a long process but I haven't yet made the mental leap required to think beyond Stage 3.

[Frankie24 in reply to Hidden]

I think the fact that you are doing your research, taking good care of yourself and staying on top of things is impressive !