1. < Kidney & Bladder

Am I wrong to be concerned about my Stage 3a CKD?

Posted by quiltergirl2 @quiltergirl2, May 18 11:34am

My eGFR took a drastic drop from 44 to 36. My doctor seems to be very blasé about. I asked if I needed a Nephrologist, or go on a renal diet, she just says “you’re not there yet”. WHERE?? My father lost a kidney to a renal cell carcinoma, and his sister had nephritis I don’t want to get to that point of losing a kidney or needing dialysis. Am I wrong to be worried? Any opinions out there?

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quiltergirl2 | @quiltergirl2 | May 22 10:48am
In reply to @mwendt54 "I see a nephrologist for what was originally diagnosed as CKD 3b then went to 3a...." + (show)
@mwendt54

I see a nephrologist for what was originally diagnosed as CKD 3b then went to 3a. I’ve not been given any medication other than Olmesartan which was added to my other two BP medications. My eGFR fluctuates going into the normal range and then dropping substantially. I had a heart attack and had to have 5 stents placed. I too have asked about medications and nothing else has been prescribed. She has never spoken to me about diet. My major problem is that my protein intake my 24 hour urine is in the high 600’s. Nephrologist wants to do a kidney biopsy to check for lupus nephritis but my cardiologist will not let me stop my 2 baby aspirin per day to have it done due to the stents. I do have rheumatoid arthritis and see a rheumatologist. I’m just so frustrated because I feel something needs to be done to make sure I don’t have lupus nephritis. Anyone have any suggestions. I’m frustrated with every specialist I’ve seen for what seems to me to be inaction. I’m 70 years old.

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I’m sorry you’re going through that. It’s so difficult when your medical team are at odds with your treatment. Wishing you the best of luck with your treatment. Perhaps second opinions with another cardiologist? I understand the doctor not wanting you to be off the aspirin but is it that dangerous for a short time? I’m no doctor but I wouldn’t think it would be that serious for just a few days—only my opinion. Take care and I’m hoping for the best for you.

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maggieinfp | @maggieinfp | May 22 12:20pm
In reply to @endelfam "He did not prescribe any medications. He cut my existing medication of Hydrochlorothiazide down from 25..." + (show)
@endelfam

He did not prescribe any medications. He cut my existing medication of Hydrochlorothiazide down from 25 mg to 12.5 mg. He sent me to a dietician and I have made definite changes in my diet. Basically, I am leaning towards a vegan diet now--not completely but meat has been sharply cut; eggs, cheese, and fish in limited amounts; and my overall consumption of protein is much lower. I also try to be careful with the amount of sodium I take in. If I have more problems in the future, I am assuming he would consider meds at that point.

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There really aren’t any meds for CKD or to lower eGFR.
Just drink lots of water ( and that means water, not any liquid) low potassium, low phosphates (nothing from a deli) and no brown drinks except for coffee.
Good luck!

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Mentor
Cheryl, Volunteer Mentor | @cehunt57 | May 22 12:34pm
In reply to @mwendt54 "I see a nephrologist for what was originally diagnosed as CKD 3b then went to 3a...." + (show)
@mwendt54

I see a nephrologist for what was originally diagnosed as CKD 3b then went to 3a. I’ve not been given any medication other than Olmesartan which was added to my other two BP medications. My eGFR fluctuates going into the normal range and then dropping substantially. I had a heart attack and had to have 5 stents placed. I too have asked about medications and nothing else has been prescribed. She has never spoken to me about diet. My major problem is that my protein intake my 24 hour urine is in the high 600’s. Nephrologist wants to do a kidney biopsy to check for lupus nephritis but my cardiologist will not let me stop my 2 baby aspirin per day to have it done due to the stents. I do have rheumatoid arthritis and see a rheumatologist. I’m just so frustrated because I feel something needs to be done to make sure I don’t have lupus nephritis. Anyone have any suggestions. I’m frustrated with every specialist I’ve seen for what seems to me to be inaction. I’m 70 years old.

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I agree with @quiltergirl2 in that it is really “difficult when your medical team are at odds with your treatment”. That can be a more likely problem when you have more than one condition to deal with. I have made a point of using a large health system where the specialists all have access to the same records, can collaborate and generally are supportive of each other. Unfortunately sometimes a specialty has the opinion that their area should have highest priority. In your situation hearts are very important but so are kidneys. I like the suggestion to get a second opinion. Could you do that? Could you ask the nephrologist if there are other tests to resort to besides kidney biopsy to get answers regarding lupus nephritis? (I’ve had kidney biopsies; they aren’t fun!). I’ve never had any heart problems, thank God! But I did join the masses of people that started a low dose aspirin to protect myself from heart problems and stroke. I think that was many years ago at the advice of my nephrologist. A few years back the same nephrologist told me to discontinue it because the new thinking is that the risk of hemorrhages is greater than the risk of heart attack or stroke! It is hard to be a compliant patient when scientific opinions change over time!

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1 reply
fromthehill | @fromthehill | May 23 11:37am
In reply to @gingerw "@quiltergirl2 Welcome to Mayo Clinic Connect! Here is a link to a post I just did..." + (show)
@gingerw

@quiltergirl2 Welcome to Mayo Clinic Connect!

Here is a link to a post I just did yesterday, to a fellow member about our diets and how to handle a new diagnosis: https://connect.mayoclinic.org/discussion/doctor-never-told-me/?pg=1#comment-1307736

Be your own advocate, and don't let a doctor tell you, "it's nothing to worry about"!
Ginger

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I agree with Ginger....it's your body and your kidney and your life...get a second opinion....go to reliable sources for info...like Mayo Clinic, American Kidney Foundation, ...good luck....and good health.

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maggieinfp | @maggieinfp | May 23 4:46pm
In reply to @quiltergirl2 "Oops, I’m 80. Maybe doctors don’t worry so much about old people, but I’m the sole..." + (show)
@quiltergirl2

Oops, I’m 80. Maybe doctors don’t worry so much about old people, but I’m the sole caretake4 for my 85 year old husband..I can’t get sick!

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Cannot tell you how surprised I was to get a transplant at age 78. They do care!

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mwendt54 | @mwendt54 | May 27 9:57am
In reply to @cehunt57 "I agree with @quiltergirl2 in that it is really “difficult when your medical team are at..." + (show)
@cehunt57

I agree with @quiltergirl2 in that it is really “difficult when your medical team are at odds with your treatment”. That can be a more likely problem when you have more than one condition to deal with. I have made a point of using a large health system where the specialists all have access to the same records, can collaborate and generally are supportive of each other. Unfortunately sometimes a specialty has the opinion that their area should have highest priority. In your situation hearts are very important but so are kidneys. I like the suggestion to get a second opinion. Could you do that? Could you ask the nephrologist if there are other tests to resort to besides kidney biopsy to get answers regarding lupus nephritis? (I’ve had kidney biopsies; they aren’t fun!). I’ve never had any heart problems, thank God! But I did join the masses of people that started a low dose aspirin to protect myself from heart problems and stroke. I think that was many years ago at the advice of my nephrologist. A few years back the same nephrologist told me to discontinue it because the new thinking is that the risk of hemorrhages is greater than the risk of heart attack or stroke! It is hard to be a compliant patient when scientific opinions change over time!

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I am only on the 2 baby aspirin a day because I have 5 stents and the cardiologist doesn’t want them to develop cord and block up again. I do wish physicians would speak to each other too. My nephrologist actually did speak to my cardiologist about the biopsy and he flat out refused to the idea of holding the aspirin. I asked my husband’s cardiologist in a different system and he didn’t understand why it couldn’t be held but stated he wasn’t familiar with my case. I see my cardiologist in a couple of weeks and will ask him again. I also see my nephrologist this summer and will ask her as well about other testing along with my rheumatologist. Too many different specialists which I wish would try to work together.

Thank you for taking the time to respond.

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scpartain | @scpartain | May 29 8:02am

Your experience is very similar to mine. I was diagnosed less than a week ago with stage 3a CKD and my PCP doesn't think it's any big deal and said I didn't need to see a nephrologist. When I expressed a desire to see a specialist, he agreed to make the referral, however. I don't have any family history of kidney disease. Until I can see a nephrologist, I'm trying to work on my diet and also fluid intake.

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quiltergirl2 | @quiltergirl2 | May 29 8:38am

Unbeknownst to me my doctor has sent in a referral to a nephrologist, I have an appointment next Tuesday. The nephrologist may confirm my doctors opinion, but at least it will give me peace of mind. I’m having a kidney ultrasound today, hoping nothing will show up.🤞

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amu45sin | @amu45sin | May 29 9:36am
In reply to @amu45sin "Get a different doctor NOW!! Be proactive and take care of YOU. Your doctor sounds incompetent." + (show)
@amu45sin

Get a different doctor NOW!! Be proactive and take care of YOU.
Your doctor sounds incompetent.

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##reply

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quiltergirl2 | @quiltergirl2 | 19 hours ago

Update on my post. I had an appointment with a nephrologist. She was very encouraging. My kidneys are functioning at 38%, given my age (80 yrs)I could go another 15-20 years. She suggested I see a dietician to assist with a good dietary program. The biggest concern is to watch my sodium intake. My dietician appointment is on the 30th, I’ll keep you posted on what she says. All the last dietician I saw showed me a plate with food distribution on it, I need more, hoping this new one will help with meal planning etc. besides CKD I have non-alcoholic fatty liver so losing weight and proper nutrition is very important!🤞

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