I was diagnosed with kidney disease 2 years ago. Now I’m told only 15% of my kidneys are working and I only found that out by calling and asking the gal who answered the phone. No bedside manner from dr. Also I live in a rural area and don’t have many specialists around. It already rakes an hour to get to the current one. He explains NOTHING. Last visit he took me off main bp pill that was combined with diuretic. I told him my feet and ankles were swelling and he said no to diuretic. I’m 77, live alone and capable of most things. My legs bother me a LOT at night and my sleep patterns stink. Also bothered with severe twitching to the point where my hand will snap or slap.
Can ANYONE answer or advise please.
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I'd recommend you use healthgrades.com/find-a-doctor and search for a different doctor. Enter the specialty and the city and check if they are accepting new patients and if they accept the insurance you have. You will have to travel to have labs taken but the visit a few days later might be possible using Telehealth.Additionally, you can go to davita.com and register for a virtual, free, 90-minute Kidney Smart class. You'll get a lot of information and resources and be able to develop questions to ask your nephrologist. If you aren't in the USA, or even if you are, you can go to kidneyschool.org and view the learning modules.
As we age your kidney function does decline. Your previous physician apparently did little to nothing to help you slow the progression of CKD. A kidney-friendly meal plan, and a medically approved exercise regimen are also needed to slow the progress. When you meet with the new nephrologist ask for a referral to meet with a Renal Dietitian. They will look at your lab results and help you develop a kidney friendly meal plan based on your needs and preferences.
The two leading causes of CKD are diabetes and hypertension. Since you stated you have HBP you should be on a medication for that. The new nephrologist will prescribe one that will help you and not bring harm to your kidneys.
I understand about living in a rural area. I live about 40 minutes from my doctors and have to travel that far for each appointment. If you are in the USA and on Medicare you may be able to arrange for transportation for appointments. It's worth a phone call or two to find out.
Reach out to this community as you have questions. There are many folks here who have traveled this road you are on and can provide support and advice, so ask away.
You're not alone with a poor medic. My mum's nephrologist has been useless so far re her ckd stage 3 so we've elected DIY healthcare. You'll find more support on this forum so good luck.
Basically, these doctors combined activated charcoal powder and a low-protein diet to help old end-stage renal disease patients. Activated charcoal powder should cost $5-10 per 100 gm and the patients consumed 30 gm per day, so that's fairly affordable. But be careful and take it with medical advice and monitoring: activated charcoal 'adsorbs' toxins and it treats most medicines as toxins, so it can interfere (lowers the efficacy) of your existing medicines, so you must be careful. Also, activated charcoal powder is a very fine dust and very easy to choke on -- you have to mix the powder really well in water or food.
Hi! I support you in your feelings about your current situation. Follow your instincts and take steps to stop your kidney decline now. If you can't see a neurologist quickly, you may want to see your primary doctor in the interim who will help lower and stabilize your blood pressure. High blood pressure destroys the tiny vessels in your kidneys and you'll want that to stop. Present your labs as you discuss your kidney situation and other matters with him or her. Then ask for a referral to a great nephrologist. This is an excellent time to assemble a quality medical team for yourself under the watchful eyes and guidance of a primary doctor who serves as your advisor and coach. A primary doctor has interest in your overall health; we have been very appreciative of ours who has often picked up the pieces when specialists have failed to do so. You, too, can have proactive doctors in your life. Sending encouragement your way.
I have have high blood pressure since my early 40’s treated with meds. Since everyone in family had bp problems I knew it had to be kept in check. After this last visit with the kidney specialist I’m going to see my primary and inform him of situation.Thank you. I appreciate the reply.
Your comments are very concerning. Does the doctor belong to a medical center, clinic or other body that governs him in anyway? You need a better doctor. And you need to report him/her. Please take the advice of my fellow posters and do some research on you own to see how serious your situation is. Then, go back to your rotten doctor and DEMAND better care. You and your insurance pay this person to help you. At this point, if you are having swelling and issues with your sleep and legs, you need more care. Taking you off the diuretic without telling you why and helping you with the symptoms you are having is negligent. Do you have other conditions such as high blood pressure or diabetes. Are they doing labs for you? I know you said you had no choice but I would search for another doctor, possibly one who is a nephrologist to help you. Contact the closest hospital and see what they can do.
Yes, lab work before each visit. Have had high bp for many years and it’s been under control with medication. It runs in the family, parents, grandparents, siblings, so I was aware of what untreated high bp could do and made sure I doctored for it. I plan to see my primary and ask him to recommend a nephrologist.
Thank you much for the reply. I appreciate all the suggestions and comments very, very much 😀
I also have Hashimoto's and CKD. All the doctors say they aren’t related but they are. I lowered my sodium content to below 2000 mg per day and my creatinine is just 1.02 now. Try that for a month and then test. Drink lots of water everyday. I am shocked at the sodium content of everything now that I am focusing on that instead of calories. Lol. Eating out is risky, especially if you order chicken which I used to prefer is filled with salt. They brine it. Beef is usually better, even though I was trying to limit beef for a myriad of reasons. Soups and canned foods are out, luncheon meats are terrible and any pre-packaged foods at all. Good luck to you,
Thank you. Yes, already cut out processed meats for a while because they always made me feel bad. Do drink water daily which was difficult because of drinking Diet Coke daily. Watch sugar being hypoglycemic. Did not use salt when cooking, and you’re right, salt in everything. I even bought low sodium crackers, but now I see the potassium levels, even potatoes. I’m losing any desire to cook much as EVERYTHING I love seems to be bad for the kidneys. Don’t eat canned or frozen foods either.Thank you for the reply
Fresh veggies is the best and healthiest way to go. Be careful because as you've found out it's not only added salt, it's the sodium in the foods. I've found that various herbs and spices can add flavor and taste to the food and I really don't miss adding salt.You can still have an occasional helping of potatoes if you leach them first. Sweet potatoes are healthier to begin with, but still have to be soaked/boiled first.
If for personal reasons you still feel like staying with the unhelpful physician, I've included below a copy of Patients Rights for you to know where you stand legally.
I would love to eat fresh fruits and vegetables but for the longest time have had to limit how much I can eat, wasn’t much, because it would screw up my gut. Some foods I had to do away with altogether like cabbage, beans in my chili, etc.Thank you for the information and reply
Come late summer, early fall, I will go and stay with my son in Tx. The area is outside Austin and has numerous hospitals, clinics and specialists. The way my kidneys declined, I’m no longer comfortable alone in upper Mi. Should things change and I’m no longer a basket case over this I have the option to come back during the summer. I use the term basket case because this past week I had crazy days.If I need dialysis, I would rather have family around.
That's a good plan. Have you investigated the modalities yet for dialysis? If you'd like to look at a good book that explains all of your options, I'd recommend looking at HELP! I NEED DIALYSIS! How to have a good future with kidney disease by Dori Schatell, MS and Dr. John Agar. I purchased it several years ago from Amazon at a good price. You can mark it up with important notes and go over it repeatedly until you decide which way will work best for you. My copy is dog-eared after going through it four times already and probably will have a fifth time coming up soon.You can use the healthgrades link I sent you earlier to search in advance for a nephrologist in the Austin area and have an appointment already set up for you by the time you arrive in the area. You can also have your medical records sent from the MI physician to the TX physician before you arrive.
Thank you so very much. Just got back from dr and got a referral to a nephrology clinic. They come north 3 days a week, so we shall see.Thanks again for the affirmation 😀
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