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  • Was told stage 4 CKD but no referral to Kidney Doctor

    I went to my GP because I flunked a life insurance physical due to high creatinine/protein ratio. Plus I have been feeling pretty crappy lately. So he basically tells me I'm at stage 4. What? Do I ask him if o need to see a kidney doctor and he said no. Why not? Shouldn't I be given the best chance possible? He ran more extensive tests and as I read more about my disease, I keep finding that at stage 4 I should be seeing a nephrologist! Do I have to be referred or can I find one and make an appointment? TIA

  • #2
    At stage 4, you should be seeing a nephrologist regularly.

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    • #3
      yes absolutely get to a kidney doctor so he can monitor your situation. I wish you the best. as for a referral, ask your insurance company if it is a requirement. if it is, call your doctor as soon as possible and make sure he referred you.There are 5 stages to CKD and in stage 4 you need to be seeing your kidney doctor regularly . I'm in stage 4 as well. my GFR is 29. if you need to talk, I'm here for you. best wishes.

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      • #4
        Absolutely you should be seeing a nephrologist. As realsis said you can call your insurance and see if you need a referral. Even if you don't it might be easier to get into one if your doctor calls and sends your records. Stage 4 is nothing to mess around with. Don't wait on the nephrologist appointment because it could take time to get in and see one. Did you doctor give you directions on your diet, what your numbers were? (where in stage 4 you are) Keep in touch and lets us know how things are going.

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        • #5
          I was in stage 3 for over 10 years at GFR of 37 -30 and then one day my kidneys just shut down. Went straight down to stage 5 GFR of 4 without warning. You should certainly be seeing a nephrologist on a regular basis. I was at stage 5 for just a few days before I started dialysis. Now after a month and a 1/2 on dialysis I feel 25 years younger. I hate dialysis but love the way I feel after I am done with the treatment.

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          • #6
            As part of an annual physical in 2002, my PCP ordered a renal function panel. That panel revealed a creatinine level of around 1.7 against a max normal of 1.5. My PCP noted the "loss of kidney" function in a letter and ordered a CT scan of my kidneys. The CT scan revealed cysts consistent with polycystic kidney disease (PKD). Though I had no family history, I discovered some 10% of PKD sufferers have the disease through a spontaneous genetic mutation. I met with a nephrologist who explained the disease and what I could expect. While he did not establish a time table, I suspected at that time that in roughly 10 years, I would be facing dialysis or transplant. We managed the disease's progress through BP management and annual follow up appointments. As I got closer to the 10 year mark my kidney function steadily declined with GFR reaching 9 and creatinine in the high 6's by the time I had committed to HHD training. Some 9 months prior I had an arterio-venous fistula created and 10 months before that was listed with the first of two kidney transplant programs.

            I don't feel that my medical care was anything but routine, yet there are scores of individuals whose tales of kidney failure and eventual dialysis are far more traumatic. Kidney function can vanish virtually overnight, though in the great majority of cases it is a slow progressive loss of function that should provide plenty of time for personal education and planning for either dialysis or transplantation. Denial rarely leads to good outcomes and denial of loss of kidney function rarely results in a good outcome.

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            • #7
              Hi, my name is PJ. My husband was diagnosed with stage III kidney disease two weeks ago. I am not sure why the regular doctor didn't refer him to a nephrologist when he was at stage one or two because he has been watching it for a while now. In the past year my husband suffered with dehydration twice because he was working in the heat and evidently not drinking enough water. After the last dehydration our doctor referred him to a nephrologist who said he was not at a critical stage but it was imperative that he follow a very strict low-sodium, 74 g of protein per day and because he is also diabetic he has to watch his carbs. It has been a learning curve however I have researched everything I can and we took a class on nutrition for diabetics that we found on Davita.com which was a 90 minute class for free and extremely informative. When we found out I I stressed out and began worrying but after reading these posts I feel hopeful that with a strict diet we are, and I say we because I don't cook two different meals. Actually the stress of it all has remove my appetite, I guess it's my preoccupation planning and preparing his meals that I seem to not be hungry. There is an application for smart phones called nutrition. This is the best tool I have found as it has every food you can think of With all of the nutrients listed. You can set your allowances for all of your protein sodium and other things and track your water as well. It keeps you on track so that you can plan your meals even when you're out at a restaurant. The wonderful thing is you can back up your daily food plans to your computer or you can email them to yourself or your doctor. Quite honestly I don't know what I would have done without it. I think the hardest part is limiting the water to 50 ounces including liquids from foods and when working outside adding another 20 ounces. I have had to divide the water into coffee in the morning breakfast lunch dinner in between and the other coffee at night. I am keeping a journal of meals so at some point I will have a book of meals they give me the required calories, carbs, proteins and sodium .
              I have found that keeping my husbands calorie count up while limiting protein and carbs has been a challenge however I found on the website where you can use olive oil, mayonnaise, margarine and other vegetable based fats to raise the calories. The first week my husband lost 2 pounds and I didn't want him to continue losing weight at that rate.
              It's important for anyone with kidney disease to see you nephrologist immediately, you will find out what you can do to help yourself. I am praying that with this monitoring of his foods and waters we can elevate his GFR or at least keep it where it is.
              I am writing so much because I have so many feelings inside that I just needed to share with other people that understands what it's like for this diagnosis and to deal with this change of life. I say to God thank you for making it something that we have some kind of control over , there are so many things in life that could be much worse. I hope you will communicate with me, I will be happy to share any of the things that I have learned to make things easier. God bless you and may you control your kidney disease. Thank you for allowing me to share. Big hugs, PJ

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              • #8
                I'm appalled that you weren't referred to a nephrologist much sooner. I frankly would demand an urgent referral AND change primary doctors.There is a great deal of great info about kidney failure on this website which can teach you a great deal and get you started in the right direction. at this stage, there are extremely important changes you need to make to your diet while you still have the ability to make choices for yourself.

                Best of luck to you. We can do this together!

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                • #9
                  @PJ Most doctors don't refer you to a nephrologist until you hit stage 3 or later. It is not just your doctor.
                  Nephrologists are swamped with all the kidney patients and hard to get into. I am glad you are proactive in learning all that you can. Positive attitude is a good thing to have also. I hope you can stall his progression with his diet. But keep on learning as much as you can in the meantime.

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                  • #10
                    Originally posted by 1scaredycat View Post
                    @PJ Most doctors don
                    't refer you to a nephrologist until you hit stage 3 or later. It is not just your doctor.
                    Nephrologists are swamped with all the kidney patients and hard to get into. I am glad you are proactive in learning all that you can. Positive attitude is a good thing to have also. I hope you can stall his progression with his diet. But keep on learning as much as you can in the meantime.
                    Thanks so much for your response, things are a little easier going into the third week of tracking and planning meals. My husband is 77 years old And for the most part has experienced good health up until this diagnosis. He has been truly amazing and cooperative, eating what I prepare and following his dietary requirements .
                    I have found that I am staying very positive but I have a leveling anxiety that I am trying to deal with. I really appreciate the feedback from everyone and so happy that I found this forum.
                    Ellen to frolic just believes that the use of ibuprofen and Advil is one of the causes of my husbands kidney issues.
                    We have a very active life living in Nevada, we eat out frequently and our favorite casino and the best part is the head chef is working with us to allow us to order custom food prepared the way we need it when we come in .
                    We go back to the doctor on November 5 which will be three weeks since her first appointment.I am praying that we have good results, my husband seems to feel much better eating this wh I am praying that we have good results, my husband seems to feel much better eating this way, I try to keep His meals not boring. I have a question for everyone though, does it seem to you since your diagnosis your whole world seems to revolve now around kidney disease ?
                    I am hoping as we get further along into this change in our lifestyle that I will settle down and not be so hyper vigilant over what he eats and drinks.
                    Thanks again to everyone for your comments I look forward to hearing back support is greatly appreciated.❤️

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                    • #11
                      Originally posted by Pjdahling View Post
                      I have a question for everyone though, does it seem to you since your diagnosis your whole world seems to revolve now around kidney disease ?
                      I am hoping as we get further along into this change in our lifestyle that I will settle down and not be so hyper vigilant over what he eats and drinks.
                      Thanks again to everyone for your comments I look forward to hearing back support is greatly appreciated.❤️
                      I understand about the world revolving around kidney disease after diagnoses. That's the way I feel. I has been about a year since I was diagnosed and although I am more in a routine so I worry (a little less) than I used to. I am just now trying to make more kidney friendly recipes. But I personally never want to forget how I am eating or how much water I am drinking because it is easy to lose track. The hard part is not eating out because it's hard to find food that fits in the kidney diet or not eating at family's house because I know they have not prepared the food how it would be okay for me to eat. Eating lots of salad gets old. Keeping the kidneys well is a life change. But it sounds like your doing a good job fitting it in to your lifestyle. Good For you.

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                      • #12
                        I have found that doing PD has allowed me to eat in a manner that is way less restrictive. I have always drank about 2/3 of a gallon of water per day for the last 10 - 11 years per my nephrologist's orders, so now I am used to consuming mass quantities of water and PD allows me to do that. As long as I keep up my cardio and sweat a lot I only have to do PD twice per week and on a rare occasion 3 times a week. I view my PD as an adjunct to help my kidneys, not to totally replace them. I got my GFR back up to 21 from a low of 4. I am 53 years old and refuse to let CKD control my life.

                        One example is - my hemoglobin is in the range of a normal persons without taking epogen. Epogen can be hard on our/ your body and might cause blood clots if you are trying to keep your hemoglobin at normal levels by using epogen. I decided when I first had to go on dialysis that I would control it and that dialysis was not going to define my life for me. So far I am in more control of it than it is of me!
                        Last edited by Loganwon; 10-27-2015, 10:08 PM.

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