1. < Kidney & Bladder

CKD-I'm scared

Posted by jaxd67 @jaxd67, 3 days ago

I recently found out that I have chronic kidney disease (CKD). My eGfr was 26. I have an appointment for a consultation with our local kidney center. I'm not ashamed to admit that I'm scared. I've been diabetic for 15-20 years, I can't remember how long. My A1c- 6 months ago was so high my doctor said it didn't register. She said the labs test capped out at 15. She put me on Mounjaro which has done wonders. My A1c- in April was 7.5. It was to late for my kidneys, I guess. I'm scared because I don't know what happens next.
Thanks for letting me vent.

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Mentor
Cheryl, Volunteer Mentor | @cehunt57 | 3 days ago

I have been diabetic for 50 years and I have a history of high blood pressure. Those are the two most common causes of kidney disease. I was also diagnosed with CKD in 2016. My eGFR has bounced around between 14 - 42. It is currently 38. The best thing you can do is to get the diabetes under the best control you can and learn about kidney disease. It sounds like your diabetes is already improving based on the drop in A1C of 15+ to 7.5, This is a great start!
My worst A1C was 13 something. It is currently 6.6
Do you have an endocrinologist to oversee your diabetes and a nephrologist to care for your CKD? A dietician who knows diabetes and renal nutrition requirements is helpful too. It is important to learn about the types of dialysis there are and to learn about kidney transplantation. I also had a kidney
pre-transplant evaluation when my eGFR was less than 20. I was approved and accepted for kidney transplant and was listed with UNOS (United Network of Organ Sharing). My listing has since been changed to “inactive” when my eGFR improved to 34, thank God. (“active” listing is 20 or less). I also learned about living kidney donation and have been looking for a living kidney donor. Most people have two kidneys and you only need one (healthy one) to survive. Now that you have vented, try not to be scared. Be active to learn and do everything you can to take the best care of yourself that you can.

REPLY
1 reply
Mentor
Ginger, Volunteer Mentor | @gingerw | 3 days ago

@jaxd67 Welcome to Mayo Clinic Connect. Please don't be scared. As @cehunt57 Cheryl commented, getting control of your health is important. You have a job ahead of you, focus on that!

Diabetes and high blood pressure are the two leading causes of Chronic Kidney Disease [CKD]. It is a sneaky thing, our kidneys learn to accommodate the disease process, and offer us little warning or indication that there is a problem. Then, it seems out of nowhere, we find out yes, indeed, there is a problem! Now is the time to work on educating yourself, and gathering information that will help you in your own journey. As Cheryl said, getting both your endocrinologist for diabetes, and nephrologist for kidneys, to help you. Remember, you are also part of that team! A sound renal diet is a great thing. For me, and many others, that means watching your intake of sodium, calcium, potassium, phosphorous, sugar, processed meats.

Yeah! for your decrease A1C after taking that medication! No one said it will be easy, but you got this! And we here on Connect are right there beside you to help and cheer you on!
Ginger

REPLY
1 reply
jaxd67 | @jaxd67 | 2 days ago

Thank you for your encouragement. I'm trying to shake the internal pity party. My consultation is on the 12th. I'm going to find a dietician to help me stay on the right track. Again, thank you.

REPLY
jaxd67 | @jaxd67 | 22 hours ago
In reply to @cehunt57 "I have been diabetic for 50 years and I have a history of high blood pressure...." + (show)
@cehunt57

I have been diabetic for 50 years and I have a history of high blood pressure. Those are the two most common causes of kidney disease. I was also diagnosed with CKD in 2016. My eGFR has bounced around between 14 - 42. It is currently 38. The best thing you can do is to get the diabetes under the best control you can and learn about kidney disease. It sounds like your diabetes is already improving based on the drop in A1C of 15+ to 7.5, This is a great start!
My worst A1C was 13 something. It is currently 6.6
Do you have an endocrinologist to oversee your diabetes and a nephrologist to care for your CKD? A dietician who knows diabetes and renal nutrition requirements is helpful too. It is important to learn about the types of dialysis there are and to learn about kidney transplantation. I also had a kidney
pre-transplant evaluation when my eGFR was less than 20. I was approved and accepted for kidney transplant and was listed with UNOS (United Network of Organ Sharing). My listing has since been changed to “inactive” when my eGFR improved to 34, thank God. (“active” listing is 20 or less). I also learned about living kidney donation and have been looking for a living kidney donor. Most people have two kidneys and you only need one (healthy one) to survive. Now that you have vented, try not to be scared. Be active to learn and do everything you can to take the best care of yourself that you can.

Jump to this post

Thank you Cheryl. I'll be meeting my nephrologist next Thursday. I don't have an endocrinologist yet, but that'll be my next step. I have a follow-up with my doctor and I'll talk to her about that and a referral to a dietician as well.
I've been deep diving into information but I'm trying to look at multiple sources.

REPLY
jaxd67 | @jaxd67 | 22 hours ago
In reply to @gingerw "@jaxd67 Welcome to Mayo Clinic Connect. Please don't be scared. As @cehunt57 Cheryl commented, getting control..." + (show)
@gingerw

@jaxd67 Welcome to Mayo Clinic Connect. Please don't be scared. As @cehunt57 Cheryl commented, getting control of your health is important. You have a job ahead of you, focus on that!

Diabetes and high blood pressure are the two leading causes of Chronic Kidney Disease [CKD]. It is a sneaky thing, our kidneys learn to accommodate the disease process, and offer us little warning or indication that there is a problem. Then, it seems out of nowhere, we find out yes, indeed, there is a problem! Now is the time to work on educating yourself, and gathering information that will help you in your own journey. As Cheryl said, getting both your endocrinologist for diabetes, and nephrologist for kidneys, to help you. Remember, you are also part of that team! A sound renal diet is a great thing. For me, and many others, that means watching your intake of sodium, calcium, potassium, phosphorous, sugar, processed meats.

Yeah! for your decrease A1C after taking that medication! No one said it will be easy, but you got this! And we here on Connect are right there beside you to help and cheer you on!
Ginger

Jump to this post

Watching my sodium has been an issue. With my rapid weightless came a drop in blood pressure. Most days it's low-yesterday it was 90/51. It's been lower. At those times I have to increase my sodium.
I do have a question. I've read that CKD can be reversed. I've also read that it can't. Which of these is true.

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1 reply
Mentor
Ginger, Volunteer Mentor | @gingerw | 14 hours ago
In reply to @jaxd67 "Watching my sodium has been an issue. With my rapid weightless came a drop in blood..." + (show)
@jaxd67

Watching my sodium has been an issue. With my rapid weightless came a drop in blood pressure. Most days it's low-yesterday it was 90/51. It's been lower. At those times I have to increase my sodium.
I do have a question. I've read that CKD can be reversed. I've also read that it can't. Which of these is true.

Jump to this post

@jaxd67 Sardines or pickles will give your blood pressure a boost, with all their salt!

As to your question about CKD being reversed. A tricky question. Seeing that CKD can be caused by diabetes, high blood pressure, medication side effects, life style, etc., by getting a handle on those you can "better" your situation. Sometimes it is a combination of factors that led to the CKD. Taking an active role in your own individual situation, will help you. I'm not going to say it will be reversed, I am saying that with hard work and knowledge on your side, you can better your kidney function, better how you feel. I hope that does not sound like I am skirting around your question!
Ginger

REPLY
jaxd67 | @jaxd67 | 1 hour ago

If doesn't. I have read while it can't be reversed, it can be"maintained." I've also seen people speak about their eGFR numbers fluctuating. Cheryl is one example.
I want you and Cheryl to know that, while I'm still a little scared, I no longer have that blinding fear. Just being able to talk to y'all and your quick and thoughtful responses have gone s long way to put me in a "next step"frame of mind. Thank you Ginger and thank you @cehunt57

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