Hi, I have had stage 3 CKD since 2015 (?) Dr. James Norman of the Tampa general who does only parathyroid surgery was the one who informed me. My nurse practitioner who had been treating me for 15+ years never said a word about CKD. So I changed to a Dr. who was concerned about it. still he did not tell me about CKD. Since 2015 no one had told me the seriousness of CKD. Last week I was told my CKD was slightly worse. Still no recommendations other than, "Drink more water"
What does a body have to do to get a Dr. to tell you "hey your headed for disaster"
I took back my life looked up a few sites, cookbooks, the Kidney Foundation.
It looks like it going to be a long road, but after reading 2 of the books I got this week, things are looking up.
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Ladyofthelakes
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Things will look up! This is all a process; going forward that counts! CKD can't be cured but with a kidney friendly diet, exercise, a good communicative medical team, progression can be halted.
You have come to the right place being here; reach out share and ask for support!
Positive thinking!
You might get a lot more information by going to the davita.com website and register for a free, 90-minute Kidney Smart class in your area. You'll get a lot of information as well as a list of resources to get you the information you need. A referral to see a Renal Dietitian would help you develop a kidney-friendly meal plan designed for you based on your lab values.
Some other suggestions would be to put together a Care Team of physicians that will work with you. You have the right to be informed about all health conditions in a timely manner. If you aren't being proactive and learn about your rights you will be at the mercy of the physicians who don't think it's important, yet. It's your health, take charge. If you don't get timely information from the physicians, find a new one and right from the start, let them know what your expectations are. If they are willing to work with you, terrific. If not, say goodbye and continue to look. Good/great doctors are out there.
Make a list of all your medications and dosages and share a copy with every one of your physicians and keep your list and the doctors updated. I suggest you use drugs.com to check out any and all of your medications for interactions with each other and question your doctor about any issues you see. There are times when you have to take a medication for a short time to help with one issue that may have a negative impact on another, less serious health issue. If you sign up for a free account there you will be advised about new medications coming on the market and any alerts regarding health and medication issues.
To help you understand your labs I'd also recommend using labtestsonline.org to check on each lab. At the very least it will help you develop great questions as to why your physicians are ordering specific tests.
I am not sure WHY doctors, NP, and many other health providers are not alerting patients sooner to declining GFR's, but it seems to be a very, very serious problem.
All my doctor told me in June was, "We want to keep an eye on your kidney function". She did not mention the number, what a GFR was, or anything.
Something is seriously wrong in the medical community, when it comes to advising patients sooner.
Thank you MarBea, I had never heard of GFR, and it is not on the printout of my lab tests. I have received Lee Hull's book and have read it through, a little complicated with lots of nutritional terms not anywhere in my realm! Mr. Hull's other book is coming Friday, it is quite lengthy, but the video on it said not to miss it and read it through. I intend doing just that. Now I will address Mr. Kidney's post a bit more.
My doctor casually mentioned my dropping GFR (stage 3 was first time I heard of it), but said, " don't lose any sleep over it."
What is wrong with these "doctors" ? I am searching for a new primary and a nephrologist. I don't understand their reluctance to inform patients of what we have a right to know. I feel if they can't just hand you a pill they aren't interested in treating us.
To let you good people who are concerned for each other including myself I want to tell you a little more of my problems.
First, I live on an island, a ferry takes us across to the mainland in the Upper Peninsula of Michigan. We in the UP of Michigan are in a economically depressed area. We have only 2 Nurse Practitioners here on the island. They work with War Memorial Hospital in Sault (pronounced Sue) Sainte Marie, Mi. 65 miles from the ferry dock. Doctors don't like the UP and when we get a really good one it is only a stopping point for them until they get into a town where they can make some real $$$$$$$$$. We lost our Urologist over a year ago, the replacement starts in Jan. 2020, they won't stay either!
The next closes hospital is below the Mackinac Bridge in Petoskey, 110 miles from the ferry dock. Traverse City Mi a bigger yet town over 3 hours away.
My Endocrinologist! She lives in Mississippi, she comes to the Sault every 3 months for 1 week. the other weeks you can have a appt with her looking at a computer. I am a survivor of Parathyroid disease, it almost cost me my life when the "good doctor" in Traverse City Mi, took the wrong Parathyroid gland out, lied about it and sent me on my way. I was told by Dr. James Norman in Tampa Bay General, where he has the whol 6th floor just for parythyroid surgery, to go back to Michigan and sue the T. C. Michigan doctor for malpractice .
So finding a team of Doctors who will work together on my behalf is going to be a challenge.
Finding this forum is going to be a compass directing me to putting my diet where it need to be. A Priorty
In a huge way this almost Vegan diet is a relief. Having always been a carnivore, guilt in consuming large amounts of meat bothered me. Irregardless of liking it, all the warnings about it did concern me greatly. Liking vegetables is not a problem. Well, eggplant is a bit of a challenge! Sugar was a favorite food group of mine, time for that nonsense to end. Hubby still needs his large amounts of meat, he loves all the nitrate-laden stuff. I call it the NO-NO drawer in the fridge. I told him tonight he has to eat all of my veggies that I prepare, but I will still cook a piece of animal flesh for him. (tee hee)
I look forward to communicating with you all on this site and appreciate your help and advice.
The shining star out of this was that you went to Norman Parathyroid Hospital...They are amazing.
I knew I was stage 3 CKD when i went there...my bones ached constantly and felt very poorly...then one day while reading over my labs i noticed my increasing PTH Levels...i asked my Neph about it but his only comment was that its just part of CKD and there wasnt anything i could do about it...he considered it Secondary to CKD..and still does
I contacted Norman Parathyroid and was told to come to Tampa...they found 3 of the 4 glands were encourged with tumors and removed them...i immediately felt better. That was over 3 years ago and i still have a normal PTH Level and no bone pain
My kidney function was at 31% when i went and stayed there until recently it has been dropping...i had hoped it would halt it forever but at least i dont have to endure the bone pain as i go into kidney failure. So glad i went. It gave me a few years without dialysis that i would not have had.
Well, it took a while but you are on the right track. You have the right to be informed but if you are not proactive, it is your fault. The doctors do not take mind reading in med school. Prepare your questions in writing and if your medical care professional (there is no such thing as a health care professional), is not interested, find one who is. Always get printouts of your blood workups and learn how to read them. Question, Question, Question every one. It's Your life!
Life you, I do a lot of research and read a lot. I found out that our American doctors do not follow up on the newest methods. India and China are more up to date; however, they want you to travel to their country. I had Stage 3 for many years, never had to go on dialysis - Had to move to a different county and what do you know, I dropped dramatically to Stage 4, then 5 then 4 again. I am now on dialysis but wonder if I really need it. I don't believe the labs up north are correct and when I tried to get into my GFR file, I was told, I do not exist. I did start buying more of the Vegs and Fruits for reversing kidney disease and they help; however, I have always been a meat eater and will not give this up completely. I have gone for more than 3 days without my dialysis and feel great, better than on the days when I have dialysis. I am going to look for a different doctor with different set of labs, maybe I may go back to my previous county and have labs done there. Take care and I hope for the best for you.
I agree whole heartedly with Mr. Kidney on the free DaVita "Kidney Smart" seminar. I've taken it 3 times, and have learned something(s) new each time. Also, I highly recommend a book entitled "Plant-fed Kidneys" by Jennifer Moore, RD. Another member on this site recommended it, and it squares with one other book by an MD: "10 Ways to Avoid Dialysis."
I no longer eat animal protein, and supplement the (mostly fresh or frozen) plants and vegetables with an essential amino acid tablet. "Plant-fed Kidneys" can be purchased on Amazon.com -- $14.99 in paperback, $7.99 in Kindle form. Hey, if I guy who has just turned 80 can do this, so can you!
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