I just found this site after being very disappointed in my last annual exam and needing help. The PCP doctor seemed to not care about my questions. She told me my phosphorus was high and all she could say was to stop sports drinks and fruit juices. I have spent many hours researching phosphorus and I'm worn out and like those who I need information and help from don't care. I'm not a doctor, but I have to do the research because they don't. I don't know where I'm going with this CKD life and feel alone about it. One doctor said I was stage 2 and another said stage 3. I'm going to my nephrologist next week and hope to find out more. I don't know whether to go to a nutritional person or what. I've been dieting all my life and now have to start all over. Sorry to go on for so long. Thanks for listening!
Need support, overwhelmed doing own researc... - Kidney Disease
Need support, overwhelmed doing own research, new here
Hi, welcome and relax. You have come to the right place. You're among like-minded friends who are willing to share lots of information with you. Let's get started.
First, if you are in the USA try the davita.com website. There you can register for a free, 90-minute Kidney Smart class in your area. The class is taught by a kidney professional and will have a number of folks like yourself in attendance. You can also look at their Recipe tab and find lots of kidney-friendly meals to look at. Each recipe gives you the breakdown of calories, calcium, protein, potassium, phosphorous, and sodium. I don't know what other health issues you have but the recipes will tell you that they are good for someone with diabetes and if you have any heart issues or not you should be cutting down on sodium. None of the recipes are designed to be taken at face value. When you meet with your Nephrologist ask for a referral to meet with a Renal Dietitian. If you're told you don't need one, find another Nephrologist. The kidney-friendly meal plan from DaVita or anywhere else is not a one plan fits all. Each meal should be tailored for the individual. For example, I only can have 8 oz. of protein each day and none from red meat or processed foods. I have T2D and have to be careful with any sugars so I watch my fruit and juice intake and with my Hypertension, I take one pill for that and reduce the sodium to nothing added and very little in the food.
Bring a list with you of all your current medications, including OTC supplements and vitamins. Go over each one with the Nephrologist and see if any of them are counterproductive to CKD, or is the dosage needs to be changed. If you want to do some of this yourself, go to drugs.com and read about each one.
When you meet with the RD bring a copy of all of your blood and urine labs for the last year or so and let them design the plan that will work for you. Stick to it.
If you are unfamiliar with some of the lab tests, use labtestsonline.org to research them. Once you open the site go to the Tests tab in the menu bar and then look for the Test Index. You'll be able to look up each specific lab and it should explain it to you in easy to follow language.
You'll need to do a lot of research after all that to learn all you can. The best way to reduce worry and anxiety is to learn and be proactive. Put together a Care Team of physicians and RD to help you. Make sure they are willing to work together to help you through this. They offer you knowledgeable advice and should be comfortable with you making the final decision. If they aren't, replace them.
Remember, there is no cure for CKD. All you can hope for is to slow down the progression and avoid dialysis for as long as possible. There are many folks here who can help and eventually you'll be able to pay it forward to others.
Come back often if you have more questions.
Thank-you SO much. It feels great just knowing someone is there to listen and give advice. I will follow through with your suggestions. I like that you said if they don't meet my needs to get another one. It gives me some courage. : )
I agree with Mr. Kidney and would add that it is important to stay hydrated and to exercise moderately. Many of us have been where you are and many of us have done the research to help us become our own advocates and experts.
Thank-you. It comforts me to hear you use the word "us"!
I wanted to ask, I'm having trouble with itching, and I think I read it's from too much phosphorus. Are you familiar with that?
Severe itching can be caused by a build-up of excessive amounts of phosphorous. If you have elevated levels of calcium they can bind together and create itching. This is more common with ESRD and folks on dialysis but is not limited to that. Keep in mind that your body does require phosphorous for good bone health. What you have to do with CKD is minimize the amount you take in.
In my case, I have eliminated red meats, dairy products, tomatoes, seeds (both pumpkin and sunflower) frozen foods whole grains. If you speak with a Renal Dietitian you can develop a kidney-friendly meal plan that allows you to have foods that contain phosphorous but not to overdo it.
What I would do is start making a list of questions for when you see your nephrologist. He can also refer you to a renal dietician. Many on this site can tell you that changing your diet to a kidney friendly one, can raise your numbers and keep you stable with your ckd.
Best of luck to you and let us know how things go at the nephrologist!
Thank-you so much. I will be looking.
I think Mr_Kidney touched on the important answers you are looking for.
I would like to add that when I was sick and had no idea what was wrong, an Emory University educated Internist looked at my blood labs and OVERLOOKED that I was in Stage 3 (or 4) CKD (when I asked her how many Stages of CDK there are, she didn't know the answer!!). She said my potassium was very high and that I should make a follow-up appointment with her and that if I didn't DIE FROM A HEART ATTACK in the meantime, I should reduce my potassium intake. How callous can you get? Isn't their oath "First, do no harm?"
The upshot is that there are good doctors and bad doctors. I love my Nephrologist (who takes all the time I need to answer questions). He said that MOST general physicians are not educated enough about the kidneys and what their part in controlling blood pressure, hormones, calcium distribution and filtering other toxins is. He said many doctors wouldn't even be able to diagnose kidneys problems from looking at labs.
Remember, you are your best advocate for your health. I worked in Medical Malpractice while a paralegal and it is true that people believe that doctors "know more than their patients." If you feel uncomfortable with the information you are getting from ANY healthcare person, find someone else. If you trust your PCP or Nephrologist, get a referral of someone they trust. This includes asking for referrals for dentists, GI doctors, etc. If you eventually need dialysis and get listed for a kidney transplant, you will need all kinds of doctors to be tested for the Transplant List.
Try not to stress. Kidney disease is not curable, it's true, but it is manageable and can be treated.
Good luck and God bless you! Ask any questions in this forum. Everyone is here to help.
Marcia
I have mentioned this on prior posts but again it feels appropriate. What do you call the person who graduates last at med school?
"Doctor"
Ha ha!!!! So true! 👏🏼😀😂
Thank-you so much. It feels great to have answers and support. I've been so depressed.
I just came in to ask another question and saw your comment. Your caring information is so helpful. I get zero support from family and friends, so this means a lot. My husband will not support diet changes. It's a huge challenge. I'm not very good at cooking and because of other issues I'm usually too tired. I guess I just have to take one step at a time. Thank-you again for your support.
Hi,
It never ceases to amaze me how the renal care does vary so so much.
I live in the Uk and can say that from day 1 when I had my first appointment at my renal unit I have have wonderful care and explanations all the way.
For the first few years (7) I think I had a regular clinic every 3 months, each time I saw a dietician after the consultant. Talked through the foods we eat, looked at my blood results and discussed any changes I would need to make. To me there is no special diet (unless you have problems with pottasium, phosphorus and iron deficiency)just good healthy food and no processed food!!
When my egfr was at 15% it was suggested we plan for dialysis, initially opted for CAPD but had to move very quickly to HD due to a regular infection of peritonitis.
My fistula was prepared by a wonderful renal surgeon, in fact you would not know I have a avfistula just by looking at my wrist area.
I was without dialysis for 5/6 weeks while my fistula matured, blood test every week to check my heamaobin levels.
I have gone from hospital to home had in a few weeks and within 4 months moved to nocturnal HD every other evening, I am getting 350-375 litres of clearance each week , which is as good a transplant would give.
I feel in really good health, still work full time at 72 and no plan to stop.
We all will have different experiences on dialysis, for me it has and continues to be good.
I am on the transplant list as wait for that to happen.
Our NHS is wonderful and I cannot praise them enough, work with your renal team and ask questions, they will respond.
In the Uk we have Patient View, an online site where I can see my blood results within a few hours of a blood test.
This enables me to ask areas I may be concerned about.
Remain positive and work with your renal te.
I, too, am developing a medical team. So far, I have met individuals like your kidney doctor. I will continue to search for committed medical professionals. It is worth the time and energy to find the right team. Keep up your efforts, it will pay off.
I'm about where you are Hugatree.... it's so frustrating. Why do doctors think this is a trivial matter? It's our LIVES.
I'm not sure that all doctors think it is a trivial situation, but, as I said earlier, my Nephrologist says that it is a travesty how little doctors are taught in Med School about the importance of kidney function to maintain a healthy body. If doctors don't specialize in nephrology, they seem clueless. I guess it is a bit like lawyers: please refrain from having a Family Law attorney handle your Capital Murder Trial!
Try Senegal Acia gum . We reversed ckd it from stage 5 gfr 12 to around gfr 30 now so it worked for us including diet management. Good luck .
Don't eat any packaged food. Dark sodas. Just no junk food.
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