How join support group ?

@gingerw No one has talked to me about cause of my Kidney problem. I use to have high blood pressure but that seems to be better now. It's low more often than high. I just found out I was a 3 several months ago. ,and went to a 4 several weeks ago. I don't know how long it is between 4 and 5 . I don't know that much about Kidney disease. I'm still learning, I would rather get a transplant than to go on dialysis. Although I'm 90 so I'll have a good tug of war with my Nephrologist about getting a transplant at my age. . . I do a lot of praying; for a lot of things . Did I spell that right ? I would like to be able to join a discussion group. Either chronic Kidney Disease or Transplant group, to learn more. Thanks for listening . Ed

@eelatt01 Blood pressure issues are one of the top 2 underlying causes for chronic kidney disease.

Truthfully, you may have a pretty steep climb up that hill, finding a transplant center who will consider you, given your age. Do you have a living donor in mind?

You can join any discussion group! You are already a member here on Mayo Clinic Connect, and every support group offers many discussion threads. Jump right in!
Ginger

I joined this group to gain information for my son in law who is a stage 4 kidney disease. Should he get more tan one consult before proceeding with the fistula surgery for dialysis?

@rngobra Welcome to Mayo Clinic Connect! Thee are a lot of variables to consider, with dialysis. Has your son had any education on the different modalities: peritoneal, hemodialysis or home hemodialysis? If so, what is his desire? If it is peritoneal, has he been evaluated to see that he could do that? Here is a link from Renal Support Network that explains the different options: https://www.rsnhope.org/kidney-101-just-diagnosed/dialysis-treatment-options/
Ginger

@gingerw
Hello, I am Rick37. I joined the Mayo Clinic Site to find out more information about Chronic Kidney Disease. Information related to diet, exercise and lifestyle. I have been seeing a Kidney Doctor for 5 or 6 years. I am 74 years old and have several related issues. 1. I have had a radical ileostomy with my Colon removed about 40 years ago. I have type 2 diabetes with an A1C of 6.2
and my kidney level is 3b. I have had many dehydration episodes over the years which has contributed to make my kidney numbers get worse. Thank, Rick. I would like to join a Kidney Disease Support group. If anyone can help me get into the conversations and join a support group I would appreciate it. Thanks again, Rick37

@rick37 Hi, I wasn't sure where to post my questions, or ask about a potential diet for a stage 3b kidney condition.

One of my questions might call for a person with a wide knowledge of a kidney diet.
I have had many episodes of dehydration (I have had an ileostomy for 40 years with my colon removed.(for the first 25 years I felt great with few problems. Around 10-15 years ago I have been hospitalized for dehydration episodes where I would lose 10-15 lbs of weight thru my appliance that I wear. I didn't have a Kidney doctor until 7 or 8 years ago. They gave me blood tests for the kidney after each episode. my levels would get bad during and after the episodes. I was treated by given intravenous bags of liquid.(It stops dehydration 4 times faster than having water orally.) Usually the kidney numbers would go back up close to normal level. However each episode will leave the kidneys a little worse. After 7 years of having about 3 dehydration episodes a year my kidney level is 3b with an EGFR level of 31 after the last episode.
I had taken about 8 ounces of Pedialyte every morning and I didn't have an episode for 14 months. I started wondering if the salt in pedialyte(and different electrolytes including 280mg of Potassium could have caused problems. I hate to give it up because it has helped my to retain water and kept me out of the hospital for over a year until my last dehydration episode a few weeks ago.
If anyone has a knowledge of this situation I would appreciate some information. Thanks,Rick37

@rick37 @gingerw

You are minutes away from making video calls to Mayo Clinic to get multiple second opinions. It may be worthwhile to talk to a professional as we here are informed about our own experiences and try to pass it on. I would highly recommend that you follow @gingerw as over the years, her concern for helping others in the area of chronic kidney disease is quite valuable. Add to that is @cehunt57 and others. First, for a type 2 diabetic, your A1C is fine as long as you keep it less than 7, and test regularly at about every 3 months, and perhaps see an endocrinologist. Second, you have not said anything about your colorectal surgeon or gastroenterologist as this could be an underlying issue of your current chronic kidney disease. Also, the appliance that you wear may be outdated or not working as well now after 40 years. Dehydration is a leading cause of low eGFR. Third, seeking a dietitian could be quite valuable to you related to diet, exercise and lifestyle. Lastly, understand the different tests for checking the function of your kidneys and keep track of it. Docs look at trends and not one point in time. Understand the differences of creatine eGFR and Cystatin C eGFR, as well as iothalamate and iohexol testing to determine accurate kidney function in both kidneys. In my opinion only, you appear to have underlying issues which are affecting your kidney problems. Solve that first and best of luck to you!

@collegeprof Thank you for your comments. I appreciate it.
I do have a Kidney doctor and I see him 3 or 4 times a year. I haven’t really read up on what all of the numbers mean. When I was in the ER a couple of weeks ago my EGFR was 27. The kidney doctor talked with me on the phone and ordered another metabolic panel within ten days of the first tests and the egfr went up to 31. He explained to me that one low test won’t change my kidney classification from 3-4 or 2-3. He said I need a series of tests within a certain amount of time. It removed some of the panic from me.
I have seen a nutritionist for the last 2 years and most of the talk was about low fiber meals to avoid blockages regarding my ileostomy.
I will change the conversation to include as positive a kidney friendly diet given my other medical problems.
I have had different GI doctors since I got ulcerative colitis at 13 years old.
I try to see different doctors as much as my insurance allows me. I intend to be proactive (finally)regarding a kidney diet and lifestyle.
I appreciate any comments or information to guide me.
Thanks,Rick37

@rick37 Welcome to Mayo Clinic Connect. I'm so sorry that I failed to respond to you earlier. I had set your post to the side, and got distracted.

Having a nephrologist who is in communication with your specialists GI for the ileostomy and diabetes, is really crucial. Together they plus you can formulate the best course of action for you. That is how my team works, that is my nephrologist confers with my oncologist to make sure treatment plans and all are in alignment.

Being dehydrated is one of the bains of kidney disease, so using Pedialyte can help, but yes, be careful watching the labels. Gatorade is generally considered a no-no because of the ingredients. We are always warned to watch our sodium, calcium, phosphorous, potassium, sugars, while reducing or eliminating red meats/processed foods. Perhaps you can engage a renal dietician who can include your diet for the ileostomy and diabetes?

You have joined Mayo Clinic Connect by posting. Now, take some time to go into the Kidney Conditions Support Group, and Chronic Kidney Disease Support Groups. You will find many different discussions going on, and many concerning types of diets. When you are ready to post in one of those groups, do it! and voila, you're there! There is a lot of good information and tips from people.
Ginger

Dear Ginger,
Thanks for all of your good insights.
I will see my nutritionist next week and ask her about her knowledge on kidney disease and for any recommendations.
As far as getting my different doctors together on treatment plans it might be like pulling teeth. I do have a good relationship with my kidney doctor which is a plus.
I am planning on moving from Rhode Island to Jersey City to live with my sister so I can save more money for my future years. I will have to find a whole new system of doctors and health care professionals. I do have a good traditional Medicare plan with medigap and it has been very good (so far).
I will continue to try to learn as much as I can about Kidney disease and how to be as pro active about it as possible. I know that kidney disease, GI issues and diabetes are all connected and try to make sure that all of my doctors are aware of my different problems
Thank you, Rick37(Richard)