My precious mom was diagnosed with kidney disease around 10 years ago. Her "Dr" has never been concerned until I started going with her to see him. Unfortunately my mom , age 74, was raised to never complain and always tells him she's "fine". Her symptoms have gotten where she's short of breath after walking from her bed to the bathroom. I was Finally able to get her in to the Cardiologist and he did an echo on her heart which was fine. After multiple different meds it seems like we have her blood pressure under control. I've been fighting this Dr for over a year now insisting on blood work. Finally got him to start getting results and her latest eGFR was 39 compared to 47 a month before. After doing my research I've found she is at stage 3b. Yesterday I insisted he do a renal ultrasound. My frustration is simply off the chart. My mother refuses to see another doctor. Her Dr did refer her to a Nephrologist but he refused to see her because she isn't "sick enough"! After doing more research I realize she needs to see a dietitian that specializes in kidney disease. That's my next step along with talking with her Dr about the different medications she can still take since she's in stage 3b. I am so thankful to be here and be able to express my feelings! I look forward to reading all your stories and learning everything I can!
My mom: My precious mom was diagnosed with... - Kidney Disease
My mom
It's tough when you think you cannot speak up with a Doctor. I am just the opposite. Have her doctor run CBC and renal and see if she is anemic. That will make her short of breath. Look for the hemoglobin level. She needs to be up around 10. Below that, she is anemic. She might need some medication to fix that but it is doable. Find a doctor who cares.
I will absolutely do that!! Oh thank you so much! My problem is getting her to agree to go💔 However I'm learning different techniques to get her to agree. Thank you again!!
Check out kidneyschool.org NKF.ORG
AKF.ORG
AAKP
I read your other post and it said she had stage 3B LIVER disease. Can you clarify?
Blessings
It's my understanding that because her eGFR is 39 she is classified as having 3b kidney failure. Please accept my apology if I'm wrong! I'm new to all of this and am reading everything I can get my hands on!! Only one month before her eGFR was 47.
One thing you should know, GFR fluctuates. It can down and up depending on how hydrated she was, how she is feeling, what she ate. So don't panic. It may reverse and come up. Make sure she is drinking plenty of fluids. And 77, she is still very young. There are a lot of us out there and many who are older who live well with CKD.
Thank you so much!
Just a tip about fluids. I was making sure to drink plenty of water but it turned out to be too much and sent me to the hospital. I was experiencing shortness of breath but all is well now that the doctor advised no more than 1.5L including all liquids. That's still an adequate amount for the kidneys but keeps me out of trouble.
I just turned 78 and have been 3A for several years which is one reason I mention it for your mom. Never would have guessed I would have an issue with drinking too much water, it didn't seem like it was.
It's all a delicate balance but pretty easy to handle once you get familiar with what works.
Thank you for bringing that to my attention! I've fixed it
Thank you for bringing that to my attention!
hi there, you should edit your profile - it says "liver" when it should read "kidney".
There are a lot of us at Stage 3B (me! me!) so your mom is in good company. It's a good idea to get the ultrasound - the only reason I got one (actually two) was because I was also complaining about lower back pain. I had one where they look at the kidneys & measure them, the second where they map the blood flow through the kidneys.
You said your mom finally has her blood pressure under control. If her pressure was previously not being controlled that could be part of the cause of the drop in her eGFR. There is a direct connection.
I wonder why your mom gets winded going from walking from bed to bathroom...is her weight in a good range? Is she getting enough exercise? What is her oxygen saturation?
It's frustrating that you don't like the doctor but your mom seems to like him so the best thing to do is figure out a way to work with him productively. Doctors HATE being challenged, so I find the best way to deal with that is not to challenge but to ask questions that steer them in the direction you want them to go.
Is your mom on original Medicare or does she have Medicare replacement? Some of the replacement plans allow you to see any specialist you want in network for a minimal copay without any referrals needed.
My mom has severe back pain. She kept all of this from me until over a year ago I saw her ankles looked like dark red tree trunks I took her to ER and her blood pressure was over 200. Took them through the night to get it normalized. She has had high blood pressure for years and has been on different meds to control it. I will say that they do seem to have it controlled now. But as you said I have no doubt it has damaged her kidneys. She's probably 10lbs overweight. Certainly not enough to cause her being out of breath. Her O2 has never gotten below 95. Unfortunately all the nephrologist demand a referral.
Sorry to hear about your mom.
I’ve included several links for you.
They will provide helpful info to help you better understand key factors and some suggestions that you might consider to expedite you getting the help you need.
My sweet mom had it too. It was hard to deal with at the time. I didn’t realize it was hereditary until recently when I was diagnosed (stage 3A) so I’ve been educating myself about it and reading lots of current books.
It’s good that the doctor discovered her disease now and even better that you are acting as her advocate.
My advice is try to expedite the process because she is not feeling well and it may be related.
I found appealing to my doctors and asking them for their help on improving the quality of my life because my health issues were so debilitating helped.
The first stage that doctors can discover the disease is 3A.
Being at stage 3B you definitely want to proactive to help your mom. You can still stop the progression before it does more damage.
Your best resource is the National Kidney Foundation I’ve included key links to their site for you to relevant topics
Educating yourself will go a long way at working with the doctors to get your mom the help she needs in a timely fashion.
BTW, my experience is that to get an appointment with a kidney specialist often takes 3 months or more. Just read your note if she was diagnosed 10 years ago she should qualify to go to a kidney specialist?
If not, during that 3 months you can accomplish a lot .
Like any disease the best course of action is catching the disease early and treating it.
Here is more info about the stages:
kidney.org/atoz/content/gfr...
Here is info for the newly diagnosed:
kidney.org/atoz/content/abo...
What I’ve read is that kidney disease is progressive and the earlier you detect it and take action the better chance you have of maintaining the quality of your life.
The biggest risk is not necessarily having to go on dialysis (which you definitely want to avoid) but the chances of CKD harming your heart.
Sadly with kidney disease until the last 15 years or so research wasn’t available about the ability to slow or stop the progression of the disease.
As a result doctors did nothing but wait for patients to go on dialysis. That is what happened to my mom. I don’t recommend that approach.
My recommendation is to gather all of the key information that you can from your mom’s health records.
Specifically get a hold of all of your mom’s blood tests and any recent urine tests to see what her test results have been that relate to her kidneys.
Here is information on the two key tests that they perform to determine if you have Chronic Kidney Disease (CKD)
kidney.org/atoz/content/kno...
There are other more specific tests that may indicate that there are kidney problems.
I was able to go back and look at some of my previous blood tests and notice various trends in other blood tests related to the kidneys that showed an earlier progression.
For example the BUN test is one that shows you have too many toxins in your blood due to your kidneys not functioning properly or too much protein.
Here is information on what your lab work numbers show:
kidney.org/atoz/content/und...
You might find that your mom’s previous tests showed her declining kidney function.
Knowing this data might help you build a case for an earlier referral. It also might support a trend of the problem already having been present for 3 months before they did the kidney specific tests and estimated my GFR.
Also if she’s having heart problems or other related kidney symptoms it might be possible to ask her doctor to make the referral and then get the additional tests.
Since kidney doctors are scheduled so far out if her tests miraculously improve before her appointment she could always cancel.
Currently research suggests that changes to diet and lifestyle can slow or stop the progression depending on how early you can make changes.
The National kidney Foundation just recently updated their recommendations from studies done in 2017-2020. They say that you can slow or stop the disease through diet.
That’s why it’s beneficial to educate yourself and be proactive.
Sadly, even now many doctors, nurses and patients aren’t up to date with current best practices.
To get a referral to a kidney specialist you typically you need to have tested positive for chronic kidney disease for 3 months before they act.
I would think that with stage 3B and your mom’s other risk factors that you might ask for a referral until he can do the subsequent tests.
Currently in most places to get an appointment with a kidney specialist takes at least 3 months. If you can request that your doctor work in parallel the timing should work out that if the tests miraculously move her back you can cancel the appointment.
I was diagnosed at the first possible stage 3A
and my doctor gave me a referral to a kidney doctor after my second test. I’ve since had all 3. Still waiting for my appointment. When I called to make my appointment They asked why I wanted an appointment and I said my tests showed that my kidney function was declining. That was it.
Perhaps you can also get a referral to a dietitian from her doctor. Especially if she also has heart disease. The diet for heart and kidney are similar.
If you are in the US Medicare will pay for the dietitian.
That way you can help get her started with changes to her diet if she’s willing to do so. Another major issue with kidney patients is malnutrition so it’s important to manage diet.
Best wishes to you and your mom.
I can't thank you enough for all the information you have given me! I will be looking at each one and learning as much as I can. Thank you THANK YOU!!!!!
Check out kidneyschool.org and
this book is available as an ebook on Amazon.com best information available IMHO.
BLESSINGS
Thank you so much for sharing your story with us! Im newly diagnosed with 3b kidney disease and your experiences have really helped me. My dr acted like it’s nothing! Told me to drink water and he changed my BP meds- see ya in 2 months for another blood draw. I’m going to make an appointment with a dietitian to teach me how to eat for people with kidney failure. Thanks again!!
Some will take take your urine and blood for lab reports, but most don't. So bring your latest lab report with you. I suggest you examine that report yourself and see for yourself which items are flagged as being too high or too low. You can then address those directly as you talk with that dietician. Hoping your meeting will be helpful!
I will do that! Thank you for the suggestions. I hope your Mom will become healthier with her new way of eating. She’s very fortunate to have you Darlenia!💕
It's so frustrating I want to scream. I've read that depending on certain things ( still learning) you might need to limit the amount of fluids🙄 Take care BarbWire0406. I'm looking for a dietitian that specializes in kidney disease for my mom as well
It’s a lot of information to take in for sure. I found a class at a hospital about 20 miles away for people new to kidney disease. I think they sponsor it so you’re familiar with them if and when you need hospitalization or kidney dialysis. Hopefully they will suggest or have a dietitian to suggest. Good luck with your journey. One day at a time! Thank you so much for reaching out to me 💕
CKD may not always progress at least not very fast, depending on what's causing it. I had one eGFR in the 20s which got me medical attention, but since then they've been in the 40s, then 50s, lately nearer 60 (the normal line for older folk). I'm always well hydrated for my blood tests now. Plus I follow the kidney diet pretty religiously for the last 3 years and am normal weight now. Protein in urine is a somewhat worse prognosis, and other conditions that people on this forum have, though the treatment is about the same for all, that is, just lifestyle changes. I'm 71, by the way. Good luck to your Mom, and bless you for caring so much.
Does your mom have protein in her urine?
I've got CKD stage 3A and my doctor does blood tests every 6 months. I'm also epileptic and have low sodium. My doctor limits my fluid intake to 1.5 litres and I'm on 6 salt tablets daily.
lgd333, I'm not sure of the difference between salt tablets and what I'm calling fluid pills. I take 1 'fluid pill' daily if I feel the need. Would you help me with that?
What's the name of the pill in question?
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