How does GFR move up and down so dramatically?

@mrainne As you may have already read in other discussions here in the kidney and bladder support group, there are many causes of kidney disease. Diabetes and uncontrolled high blood pressure are the two main causes. Included beyond that is genetic diseases like PKD [polycystic kidney disease], medication side effects, lifestyle choices, and autoimmune diseases, and other organ shutdown.

When our eGFR is tested, the hydration level we are at plays a role, as can the different machines used to analyze the blood specimen.

What is your eGFR now, and how long has it been falling? We tend to look at trends, rather than a specific lab test.
Ginger

Hi Ginger,
Here are my past results. My Nephrologist says these are just numbers, all depends on how I feel.
12/6/2016 - 46 9/8/21 - 36 Creatinine, steadily worse: 12/16/2016 - 1.2
7/31/2017 - 42 4/7/22 - 29 4/12/2023 - 1.9
8/20/2019 - 36 10/10/22 - 33
9/16/20 - 38 4/12/23 - 26
3/2/2020 - 35
9/21/2020 - 36
3/22/21 - 34

Rather than look at blood specimen results, I'm hoping for ways to reverse or improve, or at least stay stable. My Nephrologist says to drink more water. Honestly, I feel waterlogged quite often.

Appreciate your concern and opinion, Ginger!
Marianne

What is your protein intake? Johnmacc

@mrainne Marianne it looks like your eGFR is about 26 right now. Is that correct? If you have concurrent health issues, that can affect your kidney function. Diabetes and high blood pressure are the main culprits for CKD, but medication reactions or genetic factors can also play into it.

Making sure your diet is as free of processed meats as possible is good, as is quality protein, fresh fruit, low potassium/sodium/calcium/phosphorous foods. Diet plays a major factor in CKD.
Ginger

Yes, Ginger, GFR at 26. The diet you mention is my mantra and has been for 10 years. I'm beginning to think PKD is simply deteriorating my kidneys. Maybe that's just the disease and it progresses regardless. I just took my BP and it stays in this range every time I take it, no matter the time of day. 114/75, 105/73, 111/73...I've also checked it with my nephrologist's machine and it is accurate enough only varies slightly. The two meds I take are lorazepam as needed and lamotrigine which should not affect kidney function, it is processed in the liver. Only Tylenol occasionally. Never NSAIDS. I'll see Neera K Dahl at Mayo this month.

@mrainne Absolutely, PKD [polycystic kidney disease] is hereditary, and from what I have learned about it, it does not get better.

Are you being evaluated for transplant, yet? Looking for a living donor?
Ginger

I'm guessing that's what Dr. Dahl will determine this month. I'm not sure my GFR is low enough to go on the transplant list, but as you say, PKD is not going to get better. My hope is that I will go on the list and that my kidney function GFR stays above 15 for...maybe 5 years? I'm probably being overly optimistic. The last thing anyone would want is an emergency situation.

I read stories on Google about people who had no idea their kidneys were failing until the last minute. Then it becomes do or die. In a weird way, I feel fortunate my GFR started gradually decreasing and my docs were alerted and finally I was diagnosed with PKD and nephrogenic diabetes insipidus. Since there are no symptoms, some may happily go along in life with no clue of kidney disease.

@mrainne Our bodies are a miracle machine. How so many different systems work together everyday is astounding! We learn to adapt to slow changes, not realizing something might be wrong. That often is the story with kidney disease, as it often comes on very slowly. It is not until we start to get treatment that we understand or realize that we haven't felt 100% for a while [sometimes a long time!].

I know many people who have started the search for a living kidney donor before they are officially qualified to be listed. 20% eGFR is the magic number to get listed on the transplant list. But getting a preemptive transplant can happen before that level. There is a lot to do to be active on the transplant list, physical/mental/lifestyle evaluations to be done. Have you considered looking for a living donor?
Ginger

Yes, my husband wants to be tested to see if we're a match. This makes for a conversation with Dr. Dahl about the drugs I'd need to take after a transplant. I understand Mayo is on the cutting edge of new research and medical solutions to difficult health issues. I have a number of family and friends who've been treated at Mayo with successful results. One involved Parkinson's disease, another MPA vasculitis, and another with rare cancer. All these were treated successfully at Mayo.

@mrainne I will be most interested to hear how your appointment goes! Good luck, and please let me know if I can be of any help/answer concerns.
Ginger