Chronic kidney disease (CKD) support: Introduce yourself and connect

@Jesussis
Hello I'm a CKD patient. Female age 70. Is there an alternative to dialysis? My GFR was 18 and Creatinine was 2.70. I was dehydrated and received IV fluids. I'm also have metastatic secondary breast cancer. Target Therapy. Taking a chem pill, Verzinio. It's very harsh on my system. It's effecting my labs. I Causing diarrhea and dehydration. Not considering Dialysis. What are my options? Thank you for your feedback.

Hi, I just joined. I was diagnosed with stage 3 five years ago at 56 Gfr. Its dropped to 44 stage 3b. I showed more concern than my PA. She referred me to a dietitian to watch my salt 200mg or less per meal. I think I was in denial until my numbers kept dropping. Now I am worried. I have an appt for an ultrasound and with a nephrologist in 3 weeks. What are good some questions to ask him? Thanks, Donna

@jesussister Welcome to Mayo Clinic Connect, Andrea, and our support group for kidney patients. It sounds like you have a lot going on, dealing with breast cancer and kidney concerns.

I would like to ask if you know the cause of your declining kidney function? Has your medical team explored this with you, and offered to figure out your best course of treatment? Are you taking anything for the diarrhea, like loperamide? The diarrhea and dehydration can indeed affect your kidneys, so it is important to stay hydrated and also monitor your electrolyte levels. A combination like this could really affect your kidneys!

What have you heard about dialysis that makes you want not consider it?
Ginger

Hi, I just joined. I was diagnosed with stage 3 five years ago at 56 Gfr. Its dropped to 44 stage 3b. I showed more concern than my PA. She referred me to a dietitian to watch my salt 200mg or less per meal. I think I was in denial until my numbers kept dropping. Now I am worried. I have an appt for an ultrasound and with a nephrologist in 3 weeks. What are good some questions to ask him? Thanks, Donna

@ddon Donna, welcome to Mayo Clinic Connect, and our kidney support group!

You're smart to be thinking of questions/concerns to ask your nephrologist. A basic thing to figure out is why you are experiencing the drop in kidney function. Possible reasons are long-term side effects of medications, or diabetes, or high blood pressure, or lifestyle. Once you have an idea, you will be more aware of how to move forward and treat it.

My suggestions of things to ask is how best to advocate for yourself, best diet plan for your circumstances, what future actions can you take as a patient. Remember, we are all here for you, and as you read through the conversations, you will want to filter information as it might pertain to your own circumstances. For example, I had to tailor my diet plan to include the fact I have gout, so there are things approved for a kidney diet that I simply cannot have because of the gout. Things like that.
Ginger

@ddon Questions to ask. Hopefully this may help. I had my own visit with my nephrologist yesterday. My own journey is into its’ third year with CKD and post-surgery to remove one kidney. My eGFR dropped from 51 to 41 in past six months. I always ask: 1. What should I be doing? 2. What should I not be doing? The answers always center around A. Control your blood pressure B. Reduce your salt intake C. Drink water, stay hydrated D. Stay active, exercise as you are able. As I stay close to these ideals my numbers (eGFR) will go up when I see the nephrologist again in a few months. Blessings.

@gingerw Wow! Thank you Ginger for your reply. I love this group! I wrote down those questions you suggested. When I was first diagnosed 5 years ago I attributed it to Aleve I took for back pain, so I have stopped. I did have my appendix removed, surgery, I took strong pain meds for a week and Tylenol. For at least five years I kept myself on a high protein diet to keep my hypoglycemia balanced and weight loss. Maybe it's a combo? I hate to ask but is it important to ask a nephrologist my prognosis about when or if I would have to have dialysis?

@ddon Donna, good for you for having stopped Aleve. Ibuprofen and aspirin are also NSAIDS to watch out for. Unfortunately, the medical community offers acetaminophen as a good thing to use, but most of us find that doesn't touch our discomfort. I myself am told no more than 1500 mg a day of that.

There are so many meds that can cause side effects later. My cousin had a cardiac medication that 10 years later was attributed to his kidney failure.

Indeed, it certainly could be a combo of things! Let's see what your nephrologist says about the base cause of your sliding function, and what course to take to stabilize it. Dialysis is oftentimes discussed as we get to about 15% function, and many people don't start it until below 10% function. There are several factors to consider here. Do you want to think about a transplant? If so, once your function is at 20% you can start the evaluation process and be listed.

Although you didn't ask, I started peritoneal dialysis at 14% eGFR, in Aug 2022. I was already on treatment for blood cancer since Aug 2021, and moving to dialysis helped give me a better quality of life. My awesome medical team and I had discussed the realities of things. Starting treatment for multiple myeloma meant I would be on it the rest of my life, as I am not a candidate for stem cell transplant to put it in remission. Starting dialysis meant I would also be on that rest of my life, as I am not transplant eligible. Besides the blood cancer that rules out a kidney transplant, I am O+ blood type, and would require that same type in a transplant! That is my reality.

You will come up with questions relating to your own journey. Look at the responses here and in our support group. Write anything down that comes to mind. You can edit it later. If you want, keep a journal to chronicle your path; that can be mighty helpful. And let us know when you have more questions. Reach out to me, we're here to be a support system for each other!
Ginger

Hello - I joined MCC because of my CLL, which was diagnosed nearly 2 years ago. However, I then found the heart rhythm group due to my AFib. Now I have discovered the Chronic Kidney Disease support group. I was diagnosed with CKD (IgA Nephropathy) about 38 years ago via biopsy. Through the years I have seen my GFR steadily decrease. Right now it is about 25. At one time when I was in the hospital for heart issues, my GFR was down to 12. Among other things, I was dehydrated. My nephrologist said she has never seen someone bounce back so well! A recent blood test showed my GFR to be 45 - she had me repeat the labs, certain that could not be accurate! The new results were in the 30's. Anyway, I am holding my own, while managing multiple other issues. I am a few weeks short of my 80th birthday (very hard for me to believe), and I hope to celebrate many more without going on dialysis. My nephrologist follows my BP closely; I am on a remote monitor, and I get calls if things are not as they should be. I am careful to stay well hydrated and not to eat much protein - particularly red meat. I NEVER touch an NSAID, no matter how badly I ache. If any other doctor prescribes a medication, I always check with my nephrologist before taking anything. Right now she would like me to start on Jardiance or Farxiga. I am working with multiple agencies trying to obtain it for a reasonable cost because it is just unafforable. I also take Irbesartan and Metoprolol. Like Rocksology, I was diagnosed with HFpEF. A recent echo called it Stage 3 Severe. Hopefully, Jardiance or Farxiga will help that, as well. Many friends have discovered they have CKD - however, no one has had it as long as I have - so I hope that I am an example that someone can LIVE with CKD. Obviously, I recognize that things can change in a heartbeat, but for now - while my kidney function is not good - I am stable. I am glad I have discovered this support group.