Finally, My First Dietician Consultation Yesterday!

[FlowerPreciousLover]

As another newbie to CKD diagnosis and to this group, Sassymom, our stories are very similar but from a great deal of reading, unfortunately not that uncommon.

A large, unexplained weight loss led to my PCP's ordering an ultra sound which reported: "suggestion of renal disease". My request to PCP for a referral to nephrologist resulted in being informed of my Stage 3 CKD with GFR of 54. I thought neph. knew that from the ultra sound report. Only home again, did I realize that the GFR score was from the initial blood test PCP had run but didn't mention even after I requested a ff-up visit with her for neph referral.

At both initial and second neph. visits, I requested referrals to a dietician, preferably renal. Was told to "eat more food".

A third visit to PCP along with test results and a typed list of concerns for her and me to review lead her to prescribe an appetite stimulant, a cancer screening lung CT scan, a referral to a dietician and a promise to look into what med. I might take when annual osteoporosis infusion, Reclast, was denied because of the CKD diag. I've not heard back on that yet. No cancer, thankfully, but CT listed I had kidney stones...Will inquire about that also with PCP.

Was informed by dietician's office that doc needed to add "renal failure" to referral in order for ins. to pay. Yesterday, my visit with diet. would have been well worth every penny of the $330 private pay charge I might have paid.

My goal was for a meal plan which included added calories while considering pre-diabetic and CKD issues. I'd taken myself off Metformin and want to regulate A1c with diet and exercise. I had made lists of healthy and restrictive foods for each but didn't know how to combine them for a plan.

Dietician was another new experience so I took the list of meals I'd been charting as well as the June and Sept lab reports' summary and BMI indicating underweight.

He used 2 handouts from the Academy of Nutrition and Dietetics: Type 2 Diabetes Nutrition Therapy and Diabetes and CKD Diseases Stages 1 - 4, Guidelines to help me develop a really "doable" meal plan.

He advised me to eat 8 carb servings/day and to eat a protein every time I ate the 2 main meals and 2 snacks we agreed for me to follow. For underweight, it is recommended to gain 1/2 to 1lb /week.

I cannot begin to express how valuable this experience was! He was not a renal dietician but a newly graduated reg. diet. with a masters degree. I now have a plan that I can manage and follow which gives me portion controls without having to do graduate study in calorie counting because serving sizes are given for each food group list as well as alternatives from the handouts.

The most constant recommendation given from this and other sites is the absolute importance of becoming one's on medical advocate. I will never again glance at lab reports casually nor rely solely on a doc. to alert me to changed values.

Finding this forum has been the most encouraging and hope giving source for me. There are true warriors in this HealthUnlocked group who are living a courageous and "good" life despite many challenges.

You and I have a found a great source for sharing and receiving valuable information. Imagine what it would have been like, just 10- 20 years ago!

[Bassetmommer NKF Ambassador]

Hi Flower,

Good for you. It is so great when someone wins a little in this battle. You too are a warrior. You post is a good example of why diets are not one size fits all. It always amazes me how much the human body can vary. I have your opposite situation with weight gain. But the ins and outs of what I can and cannot eat have become easier in time.

Keep up the good work and share how you are doing.

[FlowerPreciousLover in reply to Bassetmommer]

You are too kind! Maybe more stubborn than warrior? lol

Read a good suggestion that I'm going to try: Create a few good "core" meals in the beginning to ease the stress of so much time consuming creation.

[Hidden in reply to FlowerPreciousLover]

Hello how is your renal diet for weight going? Do you have to stay away from potassium phosphrus yet? I am trying to gain weight also

But can’t get any formal diagnosis yet for insurance to cover a dietian.. I am glad you found the cause. I am new here and learned a lot so far.. may i ask what is your core meal you eat? Thank you

[FlowerPreciousLover in reply to Hidden]

Hi, Jpod, So far my potassium, phosphorus, sodium and protein lab values are not abnormal but I am watching and charting much more carefully my intake of all four.

My continuing unexplained weight loss was what finally led to my CKD diagnosis.

Thanks for asking about my few "core meals" to make food transitioning easier in the beginning of my renal diagnosis. A renal diet is best when it considers lab report values so what might work well for one might not for another. The doc and dietician can best guide which foods to add or avoid in meal planning depending on your CKD stage and lab values.

Both the Davita.com and kidney.org sites provide a wealth of kidney information including lists of what to add or limit for needed wt gain or loss.

davita.com/diet-nutrition/a...

kidney.org/content/how-incr...

Before setting up a few core meals to rely on, though, I suffered an acute attack of diverticulitis and that put me on a very different recovery path and diet. Liquids only, with meds, followed by soft foods and only now am I slowly reintroducing more regular,high fiber foods. To avoid more flare ups, I am charting what I eat and avoiding inflammation provoking foods like dairy and animal protein so my present diet is still restricted.

Fortunately, my dietician really helped me with a diabetes/renal diet plan and I began gaining weight. Unfortunately, I've lost more weight from the diverticulitis a very restricted diet and slow recovery.

My insurance required a signed CKD diag. from my doc but even without the insurance, it was well worth what the out-of-pocket cost would have been.

Hope this helps and that you get to see a dietician. It took me four requests but was well worth the persistence.

[orangecity41 NKF Ambassador]

Great you are being pro-active and had a good dietitian experience. It appears you are headed in the right direction. CKD diet can be a challenge at times but is well worth keeping on it.

[FlowerPreciousLover in reply to orangecity41]

Thanks, OrangeCity. Maybe now I can begin to focus on suggestions received from dietician and stop printing out volumes of info from 'net.

Have others done as I with the shot gun approach in the beginning of assembling "too much data"???

[Hidden in reply to FlowerPreciousLover]

That is currently what I am doing.. there is only a few dietians here and only 2 kidney doctors so appt waiting is long..

[Bet117 NKF Ambassador]

Hi Flower,

Thanks for sharing your great news!

I am so delighted to hear that your experience was positive!

It is all a process; I promise that your new lifestyle will soon be very natural and you will be gaining the weight and feeling like a million dollars real soon.

I know that I will always be grateful to the renal dietician who spoke to me as well as my nephrologist. Amazing people!

Please continue to reach out to us and share.

You are among friends here!

[FlowerPreciousLover in reply to Bet117]

Thanks for your encouragement, Bet ! I am counting on your "promise" smiles ! that lifestyle changes will become easier.

You and other members here are the ones who are walking the walk and I am grateful to each of you.

[Bet117 NKF Ambassador in reply to FlowerPreciousLover]

Flower it is all a process that takes time! I even have my husband's diet altered and he loves it!

Sit tight and reach out!

Bet ❤

[WYOAnne NKF Ambassador]

Start a notebook with your labs each time they are done. You can do your own graph to see if things are stable or if things have gotten worse.

Yes, I think we have all learned that you must be your own advocate...this is your LIFE and your HEALTH! Go to doctor appts. with a list of questions, and don't leave till you get the answers. Doctor's are being paid to help patients. Although, some I think have forgotten this and concentrate on quantity, rather than quality. If a doctor is not willing to take the time with you, it's time to change doctors.

So glad you had a positive experience with dietician visit.

Take care. Keep us posted on your journey!

[Hopefultaw]

I set amount but have been trying to adjust according to labs. I have kidney stones present (both kidneys) and have visited a dietitian. I now eat very little animal protein (mostly vegan now)and use food tracker track all food and nutrient intake. How many calories do you have daily? I was not given set amount but they seem fine with 2000 to 2300 calories daily plus trying to adjust according to labs. I am low in blood sodium last two tests which concerns me greatly but am on Trileptal which is known to lower sodium so cut dose in half for at least a week now.

[Bet117 NKF Ambassador in reply to Hopefultaw]

Hopefultaw,

Hi!

Speak to your doctor and

the dietician that you saw about your calorie and protein intake- they should be your first line of command to guide you at this point.

If you can email the dietician your labs and see what is said - excellent. I and several members of the community do this.

I keep records of my labs and print out copies prior to appointments noting the prior numbers next to the current before I attend.

Go on line as Davita has a food tracker that has been an asset to many members here and bring your results and a food list to the appointment.

As far as the sodium, could be a million reasons for this; definately worth discussing with your nephrologist.

We are all different and our bodies respond differently to medications and diet.

He has me take a shot glass full ( tiny amount) of Gatorade zero in the morning to help my sodium levels; but that is me. This may not be best for you.

Give them a call and let us know the verdict.

In my thoughts!

Bet

[Hopefultaw in reply to Hopefultaw]

Btw, we print out and plot trends regarding all labs- Nephrolosist was inpressed. We do hours of research daily on topic to learn all we can and come to Dr with many questions but we also call and message Dr inbetween as well as questions arise that we cannot wait for appointments on.

[FlowerPreciousLover]

Thanks Hopefultaw. I wasn't told and am hoping for 2,000 cal/day and cutting back on animal protein. Diet, focus was on the # of portions of carbs and protein each time I eat for wt gain.

Read that adding lemon/lime juice to water helps break down kidney stones. This low oxalate diet from: drugs.com/cg/low-oxalate-di... provides lists of foods to avoid and to include looks helpful.

So many factors to consider with CKD plus any other condition, it is mindboggling to distill into a menu plan. Plan to focus on the diet. CKD & Diabetes handout with Low Oxalate listed until next lab report.

Can become overwhelming with the wealth of info available and some of it conflicting. I need to just stick with one and wait for next lab results. Will check with my pcp this week on kidney stone rept. and osteo rec's for any medication.

Has your doc talked with you or prescribed anything for your kidney stones?

[Hopefultaw in reply to FlowerPreciousLover]

I will first be doing 24 hr urine test and prior will discuss stones further. Neph had death in family so postponed next appt to 22nd...