Living with Stage 4 CKD Program: If you've... - Kidney Disease

Kidney Disease
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Living with Stage 4 CKD Program

MarissaA_NKF
MarissaA_NKFAdministrator
30 Replies

If you've been diagnosed with Stage 4 Chronic Kidney Disease (CKD), we have a new program to learn more about CKD and how to manage your health the best you can. Some topics include treatment options, how to manage your health, coping and working with your healthcare team.

Enroll here: healthunlocked.com/programs...

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lowraind

With all due respect, I question why this is reserved for people at stage 4. Unfortunately, this sounds like so many in the medical field who say they cannot help us until we are in stage 4 or 5. This bothers me a lot!

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Mr_Kidney
Mr_Kidney
in reply to lowraind

I'm glad someone else noticed that as well.

1 like
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lowraind
lowraind
in reply to Mr_Kidney

:)

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WYOAnne
WYOAnneNKF Ambassador
in reply to lowraind

Really Marissa! SORRY, but Patients with CKD need help as soon as they are diagnosed, not when they reach stage 4! They need to know how to do something early when they can still change their diet, control their BP and make a difference in their GFR.

Sorry but have you been reading the posts? Many on this site have stabilized their GFR, etc. Just think if a patient with CKD could do this early, maybe they would not need dialysis or a transplant

Everyone needs help understanding CKD, etc early on, when perhaps changes can make a difference!

1 like
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Whitetail66
Whitetail66
in reply to WYOAnne

Completely agree!!! My nephrologist never used the words 'chronic kidney disease', just told me that my creatinine was high, and my function was at 60%. That was in 2016. No mention of kidney disease, that kidney function cannot be restored, or how to prevent losing more function. Never uttered the words 'renal diet', or that I shouldn't be eating certain things, like red meat. For the love of God, I was living on red meat! Now, 2 1/2 years later, my gfr is at 39. If I had been informed, or at the very least been told I had chronic kidney disease in the beginning, I wouldn't be in this situation now. Feel like I was blind sided! Early detection, and more importantly, explaining exactly what is going on, and how best to deal with this disease are key. I asked my nephrologist last week if I should restrict my phosphorous, and he said, "No need to do that until your stage 4." How about we prevent me from ever getting to stage 4? That's one huge problem with this healthcare industry... it's geared around treating, and not prevention!

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AnneEG
AnneEG
in reply to Whitetail66

My gfr was 55 in 2015 and 2016 but the Dr didn't call me in. Then in 2017 it was 57 and I was called in but was too scared to go! Had 3 blood tests done recently 53 in august, 46 in Sept and 47 in October. Doctors said they weren't at all concerned and that they see lots of older people with this condition. I'm 68.

1 like
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Whitetail66
Whitetail66
in reply to AnneEG

It makes no sense to me, that if someone reaches stage two CKD, that the doctors wouldn't take a proactive approach, and slow the progression as soon as possible. That's like noticing your car tire is low on air, but waiting until it's flat to deal with it. Each year, kidney disease kills more people than breast or prostate cancer. It's almost as if the medical establishment doesn't care until it's too late. The more I learn about this lack of urgency, the more disillusioned I become.

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WYOAnne
WYOAnneNKF Ambassador
in reply to Whitetail66

- I recently had an appointment with my nephrologist. We talked at length about how CKD patients on HealthUnlocked have been able to stabilize their condition by changing to a renal diet. He admitted to me that one reason most nephrologist's aren't sold on the renal diet as a means of stabilizing CKD is there really hasn't been any extensive study done with conclusive results showing that it works. I consider him an excellent doctor, but he does not routinely send his patients to see a renal dietician. He said if someone asked him about one, he would definitely help them with a referral. So, he is NOT sold on the renal diet! I still wonder what the results would be if someone began a renal diet when they were at Stage 2 or 3? as soon as they were diagnosed?

- I know someone whose doctor was ready to start him on dialysis back in Feb/March and he decided to see a renal dietician. His doctor wasn't sold on the idea either. The dietician helped him with a kidney friendly diet. He was able to stabilize his GFR and here it is December and is still holding his own - 9 months later. No dialysis!

- I think too, that is why it is so important that as a kidney patient we learn as much as possible about our kidneys and what happens when they do not function like they should. Being knowledgeable about our condition gives us power! Our kidney journey is not as scary when we know what is going on. I think too, we get more respect from our doctors' as we ask more questions and sound like we know what we are talking about. I found early on, that if my doctor was not willing to discuss my condition with me, he was NOT the doctor for me.

- I was diagnosed with CKD in 1992 and the only thing I was told as far as a diet change was "...NO ADDED SALT." 6 years later I was on the transplant list, having my "miracle" transplant the following year in 1999. So, you can see how well the salt-free diet worked! Sure wish I had known about the "renal diet" plan?@#$

3 likes
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Mr_Kidney
Mr_Kidney
in reply to WYOAnne

I'll continue to say that it's up to the patient to push the doctor on taking the path the patient requests. Unless that path is harmful the physician should concur.

I'm 100% certain that if I were told about having CKD five years ago when my first GFR dropped into the '70s, I could still be in Stage 2 and not just visit there occasionally.

Not informing a patient of their health status is a violation of the part of their Hipocratic oath that states. "First, do no harm."

With CKD, being silent is harmful.

4 likes
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Jayhawker
Jayhawker
in reply to Mr_Kidney

Agreed!!

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Bet117
Bet117NKF Ambassador
in reply to Mr_Kidney

Agreed!

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Whitetail66
Whitetail66
in reply to WYOAnne

This disease is confusing at best. I like your doctors attitude. Even though he isn't sold on a renal diet, he is willing to listen to his patients, and refer them to a renal dietitian if that's what they want. That's all I want from my doctor, which is why my PCP put in a referral today to see a new nephrologist, and ordered a renal blood panel and urine test. I'm a firm believer in being my own best advocate, and educating myself as much as possible.

It's interesting, that when I first started delving into CKD, the common sentiment was that kidney function cannot be regained once it is lost. Yet I read about people who have regained some, or a lot of their kidney function back. Some gaining 20 points or more, so that gives me hope. In any event, I will finally be changing my diet to a very healthy one, instead of the typical crap 'American' diet I used to have. I look back and wonder how I made it so long eating like I did. It explains my high blood pressure, that's for sure. I am bound and determined to eat way healthier, and hopefully raise my levels to avoid stage 4 for as long as possible.

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Mr_Kidney

I have been up and down the GFR scale over the previous 30 months. At diagnosis, I was at 32 and by watching my medications, exercising, staying hydrated and staying with my meal plan, I have averaged a GFR of 51 over that time.

Those numbers are just a snapshot of the time of the draw. What you need to be concerned with is your GFR average over time.

I track all of my lab values on a spreadsheet and highlight any numbers outside the normal range. It's ready to get an average that way and spot any trends that develop.

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Whitetail66

I track all my test results on mychart, which allows my to see a timeline graph of all mt results, which is a great tool. That's why I became so concerned recently when I looked at the graph, as my gfr has steadily declined over the 2+ years from 59 to 37. It actually went up to 39 over the past three months without me changing anything, and I'm hoping that now that I am on the right track, diet, exercise, and hydration wise, that it will continue to improve. It just irritates me to no end, that there seems to be NO sense of urgency until it's too late. Was it you who said that it seems like it will be up to us patients to make a difference in how the medical establishment addresses CKD? (something to that effect). It would be interesting to know how a nephrologist who develops CKD approaches their treatment. Hmm...

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Mr_Kidney

Being proactive regarding your healthcare is the prime way to stay focused as to your wants and needs. Right after that is putting together a Care Team of professionals who understand that you expect them to give you their best medical advice, help you understand your options AND then allow you to weigh those options AND make your decision AND THEN support your decision.

This is true in all cases but most especially when you have to deal with a chronic illness.

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WYOAnne
WYOAnneNKF Ambassador
in reply to Whitetail66

You are so right . The relationship with your doctor is so important. So, glad your PCP seems to understand that!

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Jayhawker
Jayhawker
in reply to WYOAnne

I couldn’t agree more strongly!

I was just at the transplant center today for more patient education. Two other patients there. Both are on dialysis. Once again they were shocked and dumbfounded to learn that I’ve been in renal failure since January of 2017 but am still not on dialysis. They were sure I needed to be on dialysis. I told them where my data is coming in at this point and that I experienced some additional improvement that is holding over the past 6 months since shifting to a vegetarian diet including eggs and egg whites as protein sources.

They literally asked me why I would bother. I said that it was my understanding that receiving s transplant with more residual renal function was better... also a transplant before you’re on dialysis is supposed to be better. I then said that when my nephrologist says it’s time for dialysis I’ll start PD dialysis.

This whole situation with the medical community and their treatment expectations for us is less than encouraging. My nephrologist knows I’m working hard to preserve renal function as long as possible. He’s supportive of my haul. I so greatly appreciate that.

Jayhawker

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lowraind

I would really like to see how the rest of the ckd community feels about this.

1 like
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AnneEG
AnneEG
in reply to lowraind

Well here in the UK they don't do anything til stage 4..just blood and urine tests once a year.

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AnneEG
AnneEG
in reply to AnneEG

I'm actually very scared about what they'll find in blood tests.

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lowraind
lowraind
in reply to AnneEG

That is why I insist on getting blood tests every three or four months. My nephrologist does not want to see me for a year, but my gp sees me every three to four months and is willing to write the prescription to have the blood tests done.

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lowraind
lowraind
in reply to AnneEG

I do not think that will change until patients become actively involved in advocating change. Here in the U.S., many doctors will let you know, but they say nothing can be done. As far as I am concerned, they want you to get to stage 4 and 5 so that they can start talking about dialysis and transplant and make more money!

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AnneEG
AnneEG
in reply to lowraind

What stage are you? I'm stage 3a and terrified. Only found out in October by a doctor who has the same condition. She doesn't seem at all concerned.

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lowraind
lowraind
in reply to AnneEG

I am in stage 3A. Briefly got it back to stage 2, but am back in 3A. I am not sure that you should be terrified. I think all of us have had some serious upset when each of us was diagnosed, but then, many of us have gone on to find out how to help ourselves. We have not done it all the same way, and the various plans offered are not right for each of us, but our job as the chief of staff of our own ckd is to find what will help us best. After two years, I am still finding things that I did not know and that might help me. I think once you find out that you are really the person in control, it will really help make you stronger. When I see my nephrologist, she gives no advice except to tell me not to be so strict with my diet. I nod and then go my own way. At least my gp sees me as a person who is on top of her issues, and respects me for it.

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Mr_Kidney
Mr_Kidney
in reply to lowraind

When I left on my last summer trip I thought I'd be returning to see my 2nd and best nephrologist one more time before he left the practice. I returned in July and had an appointment in August and found out that it would be with the new replacement nephrologist. The good one wasn't retiring or moving. He was going back to the teaching hospital and going to work with new physicians, especially new nephrologists to make them aware of the importance of informing their patients at the earliest opportunity so that the patient could begin to make lifestyle changes and slow the progression.

It's also one of the reasons why they contact other practices/groups when I let them know where I'm traveling to allow me to speak to groups about early changes to stave off dialysis and other options. That may even be in jeopardy now as the new replacement nephrologist isn't too supportive of that. To add insult to injury he's the only nephrologist in town and if I make a change it's going to be a two-hour drive to find another.

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lowraind
lowraind
in reply to Mr_Kidney

I can empathize with you. However, I hope you have a strong advocate for you on your team. At this point, you probably know more about your ckd than your new nephrologist. You travel a lot, so maybe you can find a way to find a new nephrologist to tie in with a visit somewhere relatively nearby. Maybe your old neph. can advise.

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Mr_Kidney
Mr_Kidney
in reply to lowraind

That is my hope as well. I don't leave on my next long trip until late summer and I'll see the "new guy" in February and perhaps by then, I can get him on board. The office manager is aware and hopefully, she will work behind the scenes, but if not I'll have from February through August to have this set in stone. If not, I'll have more time to spend photographing the southwest.

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Whitetail66

"As far as I am concerned, they want you to get to stage 4 and 5 so that they can start talking about dialysis and transplant and make more money!" Amen to that comment!!! That's EXACTLY what it seems like. Is there any other healthcare field in which a patient has a disease, and the specialist just sits on their hands until it's in the end stage?

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lowraind

Well, I have also been diagnosed with lupus and the horror stories that I am reading lead me to say yes.

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SunDays

I am sure there are acute medical situations that might cause a “sudden” diagnosis of Stage 4 CKD, but for many, if not most, of us who sign up for this website our first acknowledgment that we have this condition is when our PCP requests additional bloodwork to see why our GFR is trending lower. Bam! Suddenly we have a diagnosis of Stage 3a (or3b in my case) CKD! In my opinion this amounts to medical malpractice because the signs were there for months or years and it wasn’t mentioned to us!

In the nine months since my diagnosis, I have changed my diet, lost some weight and read everything I could find out about CKD. My GFR went from 42 to 53 but I know that it’s the long-term trend that I need to track (I now have a spreadsheet with 9 years of blood test results.) I so appreciate Mr. Kidney’s calm and meticulous comments and advice, especially about being in control of your health and working with a team of doctors. I had to request a referral to a renal dietician, but because she works with end stage patients who need very different advice, her recommendation to reduce salt and protein and stay away from high potassium and phosphorus foods was less than helpful as I had already read that.

Why don’t doctors advise patients about diet change when are kidneys are still healthy? I believe any GFR reading below 70-80 should be alerted to the patient. My cousin is an internist and she said they don’t worry about slightly declining kidney function because it’s normal in older people (I’m 72, but still very active and not ready to be tied to a dialysis machine!) My guess is that it’s similar to a doctor advising a patient to lose weight - we may hear and believe the words, but we don’t have the tools to carry it out. My latest find is Lee Hull’s Stopping Kidney Disease book - his diet is so restrictive, but it seems to be working for him. Knowledge is power, though, and I’m arming myself to win this “war” and not ever go on dialysis.

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