IMPORTANT CHANGES COMING THIS YEAR FOR CKD PATIENTS

The link to the article I received today is an important read for all CKD patients, especially for those future patients who will be told at a much earlier time than they currently do, in fact, have CKD and what steps they can take to slow it down.

mobihealthnews.com/news/nor...

[orangecity41 NKF Ambassador]

Thanks for sharing. Looks like many new advancements in the future.

[Bet117 NKF Ambassador]

Thanks for sharing! Lights the way for hope on many levels in the future.

[WYOAnne NKF Ambassador]

Thank you so much! Hope the future proves to be brighter for all with CKD!

[rabbit01]

Thank you for sharing this.

[Sammi_n_Munk]

Wow! That certainly inspires much hope for those on this journey. I appreciate that Mr_Kidney! It’s always good to know that advancements that will improve one’s quality of life are on the way.

And it’s also good to see that they are involving the patients as well. After all, it is the people on the front lines that know what it’s all about. They seem to be handling this very responsibly and respectfully. It feels as though we may be on the doorstep a truly valid solution.

Thank you for that. It’s faith-restoring. God bless us all. 😊👍

[DadviceTV]

I am seeing a lot of progress being made recently (since about 2008) - the progress is like a snowball going down hill, it gets even better as time goes by. It'll be important for everyone to stay on top of the updated dietary guidelines that are now being updated, and I'm really happy to see the recent findings about raising the HB (Hemoglobin) targets for kidney patients.

I feel we are at an important turning point in the treatment of kidney disease - more focus on nutritional therapy, better communication between doctor/patient, and improved recommendations that actually help patients delay or even avoid the need for dialysis. There are also a number of educational programs launching this calendar year that will really help those new to kidney disease, with a focus on maintaining and improving health instead of the outdated "Congratulations, you made it to Stage 5 - Now lets get ready for Dialysis" approach. Having a mom with kidney disease since the late 90s, it always bothered me how little helpful advice there was to maintain and improve health - I am so excited to see the shift. This will greatly improve the quality of life and outlook for kidney patients.

James @ Dadvice TV

[HealthBuddyMelissa]

I didn't see anything about diet modification. Education of primary doctors and the mainstream population is obviously important. I know for me I had symptoms just no one put them together to be from kidney disease until the kidney completely failed. AKF has a Kidney Coach volunteer grassroots effort to get kidney education into the public arena. I am one of the coaches. Unfortunately here in rural FL where Agriculture is king people have no desire to learn to eat less protein. I have had four classes and not one person has shown up. It is frustrating. Even at my church people openly make fun of Vegetarians or anyone who eats remotely different than they do. It is going to be a long hard process esp in rural areas but I am glad to see that something is being done.

[Hidden in reply to HealthBuddyMelissa]

When more public attention is given to CKD it will wake up some folks to the hazards of ignoring this chronic illness. Remember, you can lead a horse to water, but you can't make'em drink. My concern is for the word to get out to folks that they are in the early stages of CKD and there is a lot of things to do to slow down the progression of CKD. However, some people will still say, "Hey, I don't have any symptoms, so I must be okay."

Look at the facts below from a study completed at the end of last year.

Fast Stats

15% of US adults—37 million people—are estimated to have CKD.*

Most (9 in 10) adults with CKD do not know they have it.

1 in 2 people with very low kidney function who are not on dialysis do not know they have CKD.

Having doctors, especially PCP's make it known to folks at an earlier point will in fact save many from having to go into ESRD. Will everyone told this do anything about it? Sadly the answer is, "NO." For decades folks have been told about the dangers of smoking, and yet, folks still smoke. Yes, in much smaller numbers, but many think they are invincible and it won't affect them.

Keep in mind that notifying people they have CKD is only one part of the new initiative. Letting people know of the dietary changes, exercise regimens, staying off NSAID's, causes of CKD (specifically Diabetes and Hypertension), and getting them under control, and the types of dialysis available will motivate folks to do something, but since this is the USA, it won't force it on them.

I've attached a link to an article from the CDC that offers a wealth of information and stats on this, for those who are interested.

cdc.gov/kidneydisease/publi...

[HealthBuddyMelissa in reply to Hidden]

I agree with everything you said and of course the website is a good start. But it does not provide enough information and I believe more people have CKD then their stats show because it is not checked enough. Plus the government will not force companies to put phosphorus amounts on labels. Plus I saw in the first article you posted the government is more worried about the cost of CKD and Dialysis rather than more of an emphasis on prevention education etc and their main focus is designing an artificial kidney. I am not saying that is bad but I would like them to stress more on the prevention and education part. Just my thoughts.

[Hidden in reply to HealthBuddyMelissa]

I remember reading that you are in the healthcare field. Can you share your thoughts on why you think the numbers from the CDC and NIH are too low?

If in fact, you are correct, and the numbers are higher, isn't that make it more relevant that faster notification, easier access to transplantation for those seeking that, and physicians becoming more actively involved in their patient's care to slow the progression of CKD. I do agree that the plan as it now stands is not complete and far from perfect, but, it is so much better than anything that has come down from on high in the last 30 years.

Are you aware that HHD is cheaper and better for most patients on dialysis? More frequent dialysis has shown to be better for the patient and it allows them to do it from the comfort of their own home. This will be especially beneficial for those still working who, for whatever personal reason, chose not to do PD. And to add to that for people like me, it will allow me to travel and dialyze when I stop for the day. This allows me to continue with the lifestyle I've chosen and not tie me to an In-Center chair at a time of their choosing, and according to all that I've read and the folks I've met, the more frequently you dialyze the better you'll feel.

[HealthBuddyMelissa in reply to Hidden]

I think the numbers are low becuase so many people are undiagnosed and not even aware they could have kidney disease. I didn't disagree with you. I just feel they could be a little more aggressive in the awareness and education department. I mean the government. I am not against an artificial kidney being designed. I just wish people wouldn't have to get to that point. I guess I am just sad it isn't more. I try to inform people as much as I can to increase awareness. I am not a burn the house down and panic kind of person. When I was first diagnosed I was because it was scary and I was young. But the more I learn and realize I am stable and maintained it allows me to relax and learn the things I need to do and enjoy life with a disease I can manage. Sorry for the poor grammar my comma key has died.

[Hidden in reply to HealthBuddyMelissa]

I did not seek to disagree. I just wondered if you have access to other numbers. I'm loathed to accept a lot of stuff that comes from the administration but at this point, it's all we have. As to the artificial kidney, I'm not at all excited about it, yet. To me it seems too far off and at my age, I don't know where I'd be on the list of receiving one. I think we agree on wishing it was more, but as I said it's better than what we had and hopefully it's enough to get some folks rolling on slowing the progression. Plus the fact that it will (hopefully) prevent physicians from keeping quiet about the diagnosis until they feel the patient needs to know. It never should be up to them to keep information from the patient.

I had a call yesterday from my nephrologists' office. They were letting us know that by the end of spring they plan to have an in-house renal dietitian on board and when needed will do conferences with folks in more rural areas via the computer if they prefer.

When I first signed up here the members in this community numbered about 750. I'm pretty sure that before I hit 3 years here (July 27th) we'll be well over 3,000 new members. Part of me thinks that's sad, but on the positive side at least we are informing people about CKD and other related issues and that has to be a good thing.

[HealthBuddyMelissa in reply to Hidden]

I agree any amount of awareness is better than no awareness. These forums are awesome and I am so happy I found it. I used to work on a Dialysis unit way back in the 90's. So many of them lived hard sad lives. But a lot of that was due to their non compliance with diet restrictions which admittedly when on dialysis are difficult to follow and tolerate. I remember reading the article shared on this forum about doctors not telling patients until they felt they were ready. That makes me so angry. I feel like my kidney failure could have been avoided if even one doctor cared to investigate my foamy urine way back in 1999 instead of blowing it off. I had other vague symptoms also. I won't go into all of it but pre existing condition health care laws played a lot into my story. Live and learn. That is what I say. My goals are simple 1- raise awareness through my story 2- help others learn to advocate for themselves with doctors and other health practitioners 3- help others find reliable sources to learn about their illness and 4- never ever support a politician who wants to take away laws that protect people with pre existing conditions.

[Hidden in reply to HealthBuddyMelissa]

I agree with you on all of the points you listed. That's why I do the speaking engagements when I travel. When I was finally told I was at Stage 3, GFR of 32, I went back and ordered copies of all my previous labs and discovered that I was in Stage 2 and then Stage 3 a year before I was finally told. I never meet with any doctors now without first getting a hard copy of my labs and diagnostic test results. I may not understand all of the results written by doctors for doctors but a good medical dictionary, the knowledge gained through research, and advice/information from others has changed how I handle all of my health issues.

One lab test showing a patient in Stage 1 should alert the physician to re-test in a couple of weeks and then if substantiated by that draw immediately inform the patient and offer information on kidney-friendly meal plans, medications if warranted or referrals to appropriate specialists. I would hope too, that at that point, the patient would be informed of any and all programs on CKD education like the Kidney Smart class to give them more, much-needed information.

[HealthBuddyMelissa in reply to Hidden]

I do the same too and that what you stated about stage 1 is what I would like the policy to say. A plan to prevent further damage with the dietary and lifestyle choices to go with it. Plus proper labelling of food. I know I am asking a lot but is it really a lot to prevent kidney failure.

[Chucka]

Great article. Thank you for sharing it.