Need Encouragement: I joined back in 201... - Kidney Disease

Kidney Disease
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Need Encouragement

Unicornlover
Unicornlover
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I joined back in 2018, but this is my first time posting. So feel like I am new here. I was diagnosed with Kidney Disease in 2018. Before that my PCP always did blood test and told me I needed to drink more water because my kidney count was down. Then told me to take another blood test a week later. This went on for at least a year. Finally sent me to Nephrologist and I was diagnosed with Stage 4 Kidney Disease. She tells me no salt and drink more water. I can't afford a new diet and have no support from family. I am scared - I don't want dialysis. Helpful advice and encouragement is strongly needed.

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Mr_Kidney

Welcome,

There is much to do so don't despair. You are going to have to switch to a kidney-friendly meal plan. I'm not sure what you mean by "afford a new diet.". You will have to shop differently and cook differently but there is no extra cost for special foods. Lots of fresh vegetables and some fruit. No more red meat, processed foods, smoking, alcohol, or smoked or cured foods. Sodium intake should be minimized, especially if you have high blood pressure.

Call your nephrologist and ask for a referral to a renal dietitian. When you go to that meeting bring as many of your previous lab reports with you as possible. The RD will use those to help you develop a kidney-friendly meal plan to fit your specific needs based on your lab values.

The medical office for your doctors will be able to make copies of any lab results you don't already have.

Go to the website for DaVita at davita.com and you can register for a free, 90-minute Kidney Smart class in your area. If you aren't in the USA, you can go to kidneyschool.org and view a series of learning modules about CKD. This a great place to get and share information with folks with similar issues.

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orangecity41
orangecity41NKF Ambassador
in reply to Mr_Kidney

I think since been on CKD diet, that there is a savings on groceries, as not paying extra cost for processed foods and even at restaurants, which go to less, food is cheaper as only get side order or a salad. The Davita Kidney Smart Class was a big help to me.

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Jayhawker

First, I’m glad you’ve posted, I’ve found this community to be a great source of support.

I am the last person alive in my immediate family. I’m 66 years old and have never married nor had children. So I’m traveling this journey with CKD solo as well...

Second, how is your renal data looking? Is it stable at this point or has it been deteriorating? Do you know what caused your CKD? If it resulted from either diabetes or high blood pressure or both, where are you with management of the(se) conditions?

Have you been to see a renal dietician yet? If not I’d strongly suggest that you request an appointment with one. I think you’ll find that there are numerous ways to eat a renal-friendly diet for persons with financial limitations.

If your insurance won’t cover an appointment with a renal dietician, I’d suggest that you talk with your medical team to get specific targets for your daily diet. For instance, has your nephrologist recommended potassium restrictions? Phosphorus restrictions? Protein restrictions? (BTW, tofu is much cheaper than meat for protein plus renal friendly.) I’d expect that you’ve been put on sodium restrictions. Most of us manage those by cooking everything from scratch; no processed food. As an aside, cooking from scratch is typically cheaper than relying on processed foods ...

(Although, I did have to really learn how to cook better after I was initially diagnosed:)

Once you’ve gotten specific dietary targets from your nephrologist, you can go to the Davita website to find renal-friendly recipes and so forth. Several of us will also be able to share various recipes we make that are renal friendly as well.

I shifted to a modified vegetarian diet about 6 months ago. Not only has that led to a modest improvement in my renal function, it has also lowered my weekly food bill. I’ve been eating tofu, whole eggs, and egg whites as my primary protein sources. Over the past 2 months I’ve also begun eating some tilapia two times a week. But even adding frozen tilapia to my weekly meal plan hasn’t caused a significant rise in my weekly food bill. So I think there will be ways to eat a renal-friendly diet. But the starting point is getting specific targets for the following from your nephrologist:

Sodium

Potassium

Phosphorus

Protein (ask about a vegetarian diet or meat-based)

Calcium

Also, I’m a type II diabetic so I have to pay attention to my daily carb intake as well as fat... But all of this can be done regardless of your financial resources. I’m sure we’ll be able to give you economical options for food once you know what your nutritional targets are from your nephrologist.

When I was still in Stage IV I focused on trying to stabilize my renal function. Many are able to successfully do that for many years. But it takes work and real focus.

Jayhawker

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Unicornlover

My husband and I live with another couple. They pay for the food in the house. She is VERY money tight. She says that fresh fruit and veggies cost to much. She doesn't look for the salt content, and can't afford a different diet from the rest of them. The family members here are not very supportive. Or just not interested in learning more about kidney disease. That is why I said I "can't afford a new diet". I have not even heard of a renal dietition until today, so no, I have not seen one. I have to be honest though... alot of the abbreviations used on this site have me lost. So have been trying to look everything up to understand.

I have noticed things saying Creatinine levals commented on... Mine is 1.71. What does that mean? My Nephrologist never mentioned any of my lab work results with me. Except to tell me that my number keeps going down in eGFR every visit. She tells me to drink more (which makes me have problems cause I am just not thirsty after drinking water), I no longer drink any soda and at my last appointment she said as she was walking out the door... NO SALT!!! With normal american eating habits - all the food has salt.

I find myself quite often just wanting to cry or break down. HELP Please!!!

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Unicornlover

Oops... forgot to mention, I am also type 2 Diabetic. I have been told that is what caused this. My PCP had me on Metformin for 18 years. She took me off once I was diagnosed with CKD. And told me to start taking 500 mg of Magnesium. I have just start to take insulin for my Diabetes... it is out of control also.

Have High blood pressure, high cholesterol, and on about 20 different meds for all my conditions.

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Jayhawker

Do you do any of the cooking in your house? If so, you can start lowering sodium intake by doing some of the following:

1. Strain all canned vegetables and then rinse them under tap water for about 60 seconds before cooking. That will remove some of the sodium in the canned vegetables.

You should also check into having this person by canned vegetables with low sodium or no sodium. Most cost about the same as canned vegetables with more sodium. When cooking, your servings can be cooked without adding more sodium. Everyone else in the house can add sodium to their portions if they wish as their portions are cooked or at the dinner table.

Cooking beans from scratch is both cheaper AND a much lower sodium option. So if you guys will get pinto beans, white beans, kidney beans, and so forth as dried beans, you can then cook them from scratch for recipes like chili and soup. My mom used to do this all the time. There are plenty of recipes online that show how to cook these dried beans from scratch. When doing this, the meals can be cooked with low sodium and then salt can be added at the table for those who can eat more sodium and prefer the taste with more sodium.

I’m going to link into some of my favorite Davita recipes. I often fix these and share them with company. My company have no idea they are eating renal-friendly food that is also heart healthy etc. I suspect that your house mates won’t know either. So it’s just a matter of having the needed items on hand.

Do you guys get any say in what is put on the shopping list each week? I’d certainly hope you do. I’ll post again in a minute with several recipes from the Davita website.

Jayhawker

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Jayhawker

davita.com/diet-nutrition/r...

I hope this link will take you to a crock pot chicken and white bean chili recipe.

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Jayhawker

davita.com/diet-nutrition/r...

Quick and easy ground beef doip

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Jayhawker
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Jayhawker

davita.com/diet-nutrition/r...

Barley and Beef Stew

Thus recipe is very filling. And pearl barley is an excellent grain for those of us with type II diabetes—it doesn’t lead to glucose spikes.

I’ll add a few non soup recipes in a minute. But you’ll notice when you go to this Davita web site that there are lots and lots of recipes. Most rely on fresh carrots, celery, and onions. All of these are very inexpensive fresh vegetables. They also use some frozen vegetables and some canned vegetables. These recipes have been created to be both renal friendly as well as quick and easy to fix. Many if us with CKD have pretty severe anemia so we do need food that us easy to fix.

I honestly didn’t find cooking these to be more expensive than cooking more processed foods.

Jayhawker

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Jayhawker
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Jayhawker

davita.com/diet-nutrition/r...

Slow cooker pot roast with low potassium potatoes

You could use any slow cooker pot roast recipe as long as it uses low sodium options. This recipe shows you how to create low potassium potatoes if you need to follow a low potassium diet. However, your nephrologist told you no salt only so you’re probably still able to eat a normal amount of potassium on a daily basis which is good news.

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Jayhawker
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Jayhawker

davita.com/diet-nutrition/r...

Chicken fajitas

These are one of my favorite meals. There are lower sodium flour tortillas

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Jayhawker

davita.com/diet-nutrition/r...

Chicken fajitas with pineapple salsa

I’ve made these for company. They loved them!!

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Jayhawker

So as you can see, there really are lots of renal friendly recipes. Most really are quite economical.

During the summer I grow my own herbs on my deck. That actually saves me money. Plus it’s both fun and relaxing for me.

But as I said earlier, you’ll need to be able to have the needed ingredients on hand to cook this stuff. I buy fresh vegetables when they are in season only. So in the winter I buy primarily carrots, celery, and onions. I also get bell peppers from the produce isle.

I don’t eat potatoes so never by them.

I hope this helps some. But you’re going to need to take some time to price these items out so you can show your housemate that cooking this way is truly not more expensive.

Jayhawker

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Unicornlover

Thank you both!!! I really appreciate those recipes Jayhawker!!! They do have ingredients that I can add to the grocery list. I don't do the shopping... psyche problems there. Haven't been a store for at least 5 if not more years now. Just broke down one day and can't go back in yet. She makes the list of meals, I make the shopping list , she does the shopping, I do the cooking. Sadly some of the favorite family meals I couldn't eat. Either to much salt or to much protein. Maybe I can look at that site tomorrow and see if there are things that I do like. (My major problem is that I am extremely addicted to salt. Could eat if directly out of the salt shaker) This no salt is killing me... aaarrrggghhh. I will also ask nephrologist on the 27th about the Renal Dietitian. She has a group set up to help in her office, problem is they start classes at the beginning of the month. I can't start before the 14th when I meet my spenddown for insurance. (Same as payment, just different lingo) I have tried to contact them but they never call back. Will let the doctor know about this problem. Bet I hear from them then.

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Jayhawker

I think that if you start using herbs instead of sodium when you cook, you’ll be able to get your salt intake under control. You definitely need a daily salt target from your nephrologist. It wouldn’t surprise me if she sets it at 2000 mg of sodium daily at first. I am eating no more than 1200 mg of sodium daily right now. In fact, I often come in at 900 mg of sodium daily. So it can be done but it takes a total overhaul of your diet.

I use an app which is free in my phone. It’s available for both iPhones and android phones. It’s called HealthWatch360. You can enter recipes into it and it will calculate the nutritional information per serving for the recipes. You can also enter everything you eat during the day. It will then give you your daily amounts of stuff like sodium.

I’ve entered several of my family favorite recipes in the app and found that with some minor tweaking, usually reducing sodium, they are renal-friendly. But at first I relied heavily on the Davita recipes. You’ll notice recommendations from renal dietitians at the bottom of each recipe to further modify it when needed for patients with potassium restrictions and so forth.

I agree completely with Mr Kidney’s recommendations. It’s important for you to learn as much as possible about CKD so you can take better care of yourself. There is much you can do. And, as you do more you’ll begin to feel better. You may also see a modest improvement in your renal panel data as you make these changes as well.

It’s good news if you do the cooking. You'll be able to cook your servings so they meet your nutritional needs.

I look forward to hearing which recipes you’ve tried from the Davita website. I’m also hoping you’re going to put yourself through low sodium boot camp to get sodium decreased dramatically in your meals. And I hope to hear that you’ve completed some patient education and have seen a renal dietician soon.

You can do this; we all have and have found that we feel better and some have also found that these changes improve their renal panel data🐶

Jayhawker

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Unicornlover

I have already made one step with the cooking - I don't add salt to anything anymore. I figure that if they want salt in the food, they can add their own. Most of them only add pepper, however things like fries and such they still add salt. I use to poor salt on things, I always got looks and comments on that. So now, I do add a small amount, kinda like a 3/4's less. And I don't add it to everything like I use to do.

I am curious and please don't think I am dumb - what is a renal dietitian? I think renal means my bowel movements. Am I wrong?

I will log into HealthWatch 360 and see what I can learn from that site also. Will be looking thru the Davita website and see what meals I can enjoy and eat. Thanks for this info. I will also let you know what ones I try out.

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Jayhawker

Good, if you rinse the canned vegetables before cooking them and then add no salt while cooking them, that will help a lot. Then just no additional salt for you at the dinner table🐶

Your food will likely taste bland at first. This May last for a few weeks. But then you’ll likely adapt. At that point I’d imagine you may actually be tasting the food rather than the sodium. Just keep telling yourself that you’re helping your kidneys and your heart every time you pass the sodium without adding sodium to your food...

Renal is your kidneys so a renal dietician is a dietician with expertise in kidney-related diet issues. You may have been sent to a dietician after your diabetes was diagnosed. I know that I was. That dietician has expertise specific to teaching us how to manage diabetes with diet and exercise. You may need another dietician with expertise in IC.

Jayhawker

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Bassetmommer
BassetmommerNKF Ambassador

Hi Unicornlover,

First of all I am glad you are here. It is a great resource and wonderful community. I have some other things to add to the sage advice of my peers.

Get your diabetes managed. It will make a huge difference in your kidneys. Take your meds as prescribe and do not forget to use the insulin as prescribed.

Getting off salt will help also to bring your blood pressure down. Make sure the what ever BP medication you are on is kidney friendly. You can find that out by asking the doctor. You can also check things out on the internet with Google or Drugs.com. Getting your BP (blood pressure) under control is as important as your sugar for good kidney health.

Make sure all your medications are safe. Many drugs for depression and mental issues such as lithium have been found to cause kidney damage. Simple OTC (Over The Counter) drugs and supplements such as Advil or Ibuprofen can cause severe kidney damage. If your doctor won't go through your medication list, take it to your local pharmacy and ask them. They will be happy to review them with you.

I am not sure, but do you have a case worker or a social worker who can help to support your needs? Often there is someone connected to the doctors office you use or a social agency you might use. Ask for a referral. I am not sure of your living situation, but you need to change your diet and it sounds like you do not have control over that. This is the one thing you can do to help with CKD ( Chronic Kidney Disease) The fact that your labs are declining is not good, but you can possibly slow the progression.

Breaking the habit of salt is tough. I know. I loved salt. But now, I can't take it when I eat something salty. Your taste will change over time. Try adding spices like pepper for flavor while you adjust. It is the same thing with cutting out sugar. A cruel trick is that many diabetics crave sugar and carbs making it hard to break. But it can be done. I found that over Christmas I did not enjoy all the sweets things like I used to and that included my favorite food, chocolate cake.

Please keep asking us questions and taking it one day at a time. We all walk with you and support each other. If you don't understand something ask, and that includes your doctor and health care team. Fight for what you need. Be a warrior, Ms. Unicorn.

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Jayhawker

Checking with the pharmacist to verify that all meds are not causing further problems is a great suggestion. I’ve definitely done that before—very helpful!

Great advice, as always🐶

Jayhawker

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Unicornlover

Thank you for adding this advice. Yes I do take my meds as prescribed. I don't want to get worse or out of kink again. I have just started taking my insulin about 6 months ago. My Endocronologist and I are trying to find the right amount yet. I have to say, I am still fighting with my body in trying to cut down to serving sizes and finding foods that I like. YES... I am a very picky eater. One spice I do not like at all is pepper.

And I also have what is called Interstitial Cystitis. So can't really eat many spices, or veggies or fruits. That caused me such horrible pain when I found out about it. I was in extreme pain for at least a year. I tend to follow that diet more than any other one.

My Nephrologist is controlling my water pills now. She knows what BP Pill I am on and doesn't think I need to change that. I have asked my Pharmacist many times if my pills interfere with my kidney disease. Each time he has said none of them do. I was told by both my Nephrologist and PCP doctors never to take aspirin or Ibuprofen any more. I only take acetominophin now. I do have prescription pain meds that I can take as needed.

I have alot of pain throughout my body and migraines daily. I am seeing a pain specialist for this problem. So far we can't figure out what the extreme pain is coming from. In just the last 6 months I have to walk with a cane, can't sit for very long, can't stand for very long and now can't really lay down for very long. COULD this be a side effect to CKD? I see my Neph on the 27th... will definitely be asking her if this might be a side effect of the CKD.

All these problems are why I am so scared. I stated that I am only 62. What is my future going to be like? Am I only going to have my body shut down more and not be able to take care of myself? I am so scared that I will only get worse. Wondering who would take care of me. Well this little bit I have no control over.

Thanks for letting me go on and on about my health. I know that I will get support here now.

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Bassetmommer
BassetmommerNKF Ambassador
in reply to Unicornlover

Hi Again,

Try to take it one thing at a t time. I understand about living with pain. A renal dietician is someone who specializes in diet and meal planning for kidney patients. Renal = kidney.

Becoming aware of your health is the first step. Having a health care team that you TRUST is imperative. Taking the time to learn about CKD is up to you and there is a lot out there. Don't get overwhelmed by it all.

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Jayhawker

You really need to see at least one dietician, a renal dietician. But you may need another dietician with expertise in IC. These two may need to work together to create a diet that will address both your IC and your CKD. There will be options but it will be a bit more complex.

Clearly, these two dietary issues together with the diabetes can be overwhelming.

It may also help to talk candidly with your doctors: Who will be the point person for your diabetes? For your IC? For your CKD? It may be helpful to have a doctor, a separate doctor, to focus solely on each medical condition... After this is settled it will then be critical for them to work together on your case.

Taking your medications as prescribed, getting a solid diet in place, and doing some light exercise daily will go a long way toward getting you turned around. I’m a member of my medical team. I do exactly what they tell me. I then let them know how it’s working. I give them tables with my glucose levels, my blood pressure, my daily fluid intake, my daily potassium and protein intake, etc. but it’s critical for me to do my part; they can’t be effective if I don’t do what they say.

Jayhawker

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lowraind

Just a couple of comments:

1. You have the experts responding and if you follow their advice you will profit much. I know they were very helpful when I was first diagnosed a little over two years ago.

2. Frozen vegetables are usually about the same in cost as canned, yet do not contain salt, and are as healthy for you as fresh.

3. Perhaps you can work out a way to use (or eat) less meat by making more meals that do not rely on meat as the main dish, such as chili or fajitas. Or, just do not eat more than a little meat in any of the meals.

4. In regards to your pain, you might want to have the doctors check for any autoimmune diseases. I also went through about four months of intense pain until they did diagnose and prescribe meds and exercise and have felt much better.

5. Be glad you came to this site. Next to your medical team, they will be your second source of help (sometimes more so than your first).

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Unicornlover

Thank you ... I have what I consider alot of physicians at this time. The only one that can't see the comment and results is my PCP. I am going to try and correct that, by signing the forms that allows it.

I like frozen veggies except for the green beans. They feel almost waxy and limp to me. Have to talk to friend to have her buy more of the frozen in place.

I am looking at DaVita for lower meat meals. Since I have high cholesterol, my doctor has been telling me for years to cut out/back on the red meat. I am sad to say that I never followed that up completely. But I did drain and rinse my red meats when possible. Thought that would be all that I needed. Guess that was wrong.

Which doctor would I have check for any autoimmune tests?

I am glad that I came to this site. And the help here was more than I expected and am very thankful to.

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Mr_Kidney

Actually, you should be cutting out ALL red meat. Poultry and fish is safe and on infrequent occasions, you can have a small portion of white pork. Red/dark meats are too problematic for kidneys to deal with and must be avoided.

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lowraind

Frozen beans can be great if cooked only until still crisp. However, to each one's taste.

In the past, I was able to get a regime of prednisone to help with the intense pain. This last time it did not, so I left a message for my pcp that I either needed to see her again, or I needed an appointment with a pain management doctor. Pcp set me up with a pain management doctor, who while working to relieve back, thigh and leg pain, also sent me to a rheumatologist who is the one who identified the lupus. I also saw an orthopedic surgeon, who sent me to physical therapy for my shoulder and I went to occupational therapy for my hand.

It took four months and I still keep up with the exercises I was given, but I am feeling much better.

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Mr_Kidney

You've been given a lot of information and advice. How diligent you are in following that advice and pushing your physicians for their best advice and then following that advice will greatly affect the quality and length of your life. It's not up to anyone but you. It's your health, your life, and your choice.

You also asked, "who will take care of me?" The first person to do that must be YOU!

I'm older than you. In addition to CKD, I also have T2D and HBP. If a blood pressure medication isn't working, I ask my cardiologist to change the dosage or the medication. I have my T2D under control with diet and exercise. I've had CKD for 2 and a half years. I started with a GFR of 32 and by meeting with a renal dietitian, a knowledgeable nutritionist on the function of the kidneys (among other things), and I developed a meal plan that works for me. I've had my GFR back up as high as 65 but more important over the past two and a half years my GFR has averaged 51. That is because I took charge of my health and do everything I can to keep stay off dialysis and live the life I want. I don't cheat on my meal plan and I don't have little celebrations for having good numbers. I stick to what has worked and plan on continuing that.

The recipes you were told about on the DaVita website are a good starting point. I make adjustments to those even though they say they are good for diabetics and those with CKD not on dialysis. I use different herbs and spices to flavor foods and never any added salt.

Based only on what you wrote, the problems you have are directly related to the life you lived to this point. Same thing for me. I had to make a complete lifestyle change in meals, exercise, and more importantly attitude.

You have been given a starting place to make the changes you need to obtain and maintain a quality life. I really hope you take control and do all you can to live a long and healthier life. Best of luck.

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KidneyCoach
KidneyCoachNKF Ambassador

I've been sick so this post is short. A new diet won't cost you money. It is scary to hear this. Try going to kidneyschool.org Ask your nephrologist for a consult to a renal dietitian who may be able to help. I've been on dialysis 18 years so it is doable. Hang in there. Chat by sending me personal message. Not up to writing a lot at the moment. Blessings

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Unicornlover

I want to thank all of you!!!! I have learned so much yesterday and today. I have also taken you words of advice and help in and plan on doing things that you have suggested. I have already joined DaVita, found a free class that I might attend. Just need to figure out transportation to it first. I have also already printed out a few recipes that I feel we would all like here. Since I take the menu list and make a shopping list for my friend, I think I will be able to add these items with ease.

I joined this site a year ago... I am so disappointed that I waited this long to read. Bad Unicornlover. LOL Anyhow, thanks for accepting my question and helping with it. I feel a bit more safe here now.

And thanks to all of you, I have a ton of questions to ask my Nephrologist on the 27th. I will be asking her for a referral to a Renal Dietitian. If she does, just have to find out if my insurance would pay for one. Will let you know what I find out.

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Unicornlover, I was diagnosed stage 3 CKD 4 months ago and have to tell you that the responses to your post are worth their weight in GOLD. Please read and reread and follow-up on each of them.

Lowraind's #5 sums up what this CKD group has meant to me. I go to the MayoClinic site for symptom checks; I come to this site with all questions regarding CKD issues. The most shocking event of 2019 for me was the CKD diagnosis; the most helpful, reassuring and best discovery was finding this group.

One other small tip: I write any doc questions and make a copy for doc and me to follow and discuss. Same for my lab report summaries. That way, I've learned that all my questions get answered and we are looking at the same info. for any notes. Learned this the hard way.

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Unicornlover

FlowerPreciousLover, Thank you for your comments and recomendation. I am also impressed by Lowraind's#5 comments.

What I want to say is that I have done what you said about making copies for questions I have. I did this only once and was very impressed meeting with the doctor that day. I will try to remember to do it whenever I see any of my doctors. It will help me get my answers instead of guessing and trying to remember what they say.

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Mr_Kidney

Something else that you can do if your doctor has a patient portal. If I have a series of questions that I need answered I submit them to the doctor on the patient portal about four or five days ahead of time. When I come in for my appointment s/he goes over the answers to those questions, we discuss any labs and then any additional questions I have. It's at that point when I make my own feelings known about treatment options and after we discuss that my time is usually up and I know what I have to do. It's worked very well for me over the last 2 and a half years, at least with the doctors still on my Care Team. I have made changes due to physicians unwilling to work with either me or my other physicians.

My PCP, nephrologist, cardiologist, podiatrist, urologist, and more recently the general surgeon I've worked with.

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Jayhawker
Jayhawker
in reply to Mr_Kidney

I submit my questions in advance too through my patient portals. That does seem to be the best way to facilitate conversations during my appointments. I also have my labs run about a week before each appointment. I can then review my labs before I create my questions and submit my questions through my patient portal.

Jayhawker

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Mr_Kidney
Mr_Kidney
in reply to Jayhawker

I also do that with my labs and they usually are posted to the portal so I can view and post to my spreadsheet.

Only my nephrologist wants to see the sheet even though he gets all copies of all labs.

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Unicornlover

I have a site on what all happens at my hospital doctors... Specialists. I can see what they reported on my visit, lab, radiology, path, etc. The whole works. There is also a part that I can text my doctors and their responses, and set up appointments. I really like that site.

ONLY one major problem, my Nephrologist isn't connected to it. She doesn't even show up on Search for a Doctor. So I will just have to stick with typing up my questions and make 2 copies. Leaving space in between each so I can write answers. She also doesn't connect with notes on the visits like all the others. Frustrating as all get out.

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Mr_Kidney

It's your right to have a summary of each medical apointment. Ask for one.

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Unicornlover

I already have that on my list of questions. <G>

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Sammi_n_Munk

Hello Unicornlover! You sound about as down as I am. Sorry to hear that. I know exactly how you feel. Honestly, I’ve known about my kidney failure since 2009. I was seeing a Nephrologist routinely then up until about 2012, then I just stopped going. I was given the same advice as you were given - no or low sodium foods only, low potassium, etc. Most of what I know now about failing kidneys and what to do and avoid, comes from online research. I do get bloodwork done from time to time and lately, the news hasn’t been the best for me. Pretty sure I’m heading into end-stage failure now. What I find to be awful is the fluid retention which brings on the breathing difficulties. Sometimes, my family doesn’t get it either. So, I know where you’re coming from, believe me. I’d be happy to lend a shoulder (an online shoulder) to you or anyone else who reads this post. God bless.

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Jessileigh

Unicorn lover,

My husband is in the same place you are. Diabetes and kidney disease, beginning of stage 4. Life gets busy and it seems easier to throw in a frozen pizza than to think about a recipe, especially when you are hungry.

Start small.

Breakfast. Always eat the same thing and dress it up differently. We are doing eggs. Done up different ways. Not too intimidating. Add fruit. Different kinds each day. Put eggs on a bed of spinach. You can do it. After a couple meals, you will love it.

Or start with oatmeal. Dress it up with berries, seeds, whatever.

After you have mastered breakfast for a week or so, work on snacks. Yogurt is lovely. Add all kinds of stuff. Always shave a bowl of fruit sitting out to grab while you are cooking or feel like throwing in that pizza.

Fall in love with ranch or another dressing. Use it to get accustomed to eating carrots, broccoli, celery.

And get salad in a bag. Have it along with whatever you eat for dinner. Small meals are best. Let your doctor know if diabetes isnt under control. That is directly linked to kidney disease, and they should be able to help you. You cant get in there and control the kidney, so start with what you eat.

It will get better, easier, over time. It feels super overwhelming to start. Just choose one thing. I got my stubborn carnivore hubby to focus on one thing. I know you can do it! Feel success and let yourself feel proud of your accomplishment. It will move you to want to do a second thing. Good luck.

I'm already proud of you for reaching out.

Jessi

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