I am a social worker who has spent the majority of my professional career advocating for the welfare of military veterans. I thought with 20 years of working in medical settings I knew alot. Then, a year and a half ago I under went a simple abalsion procedure that went wrong. I ended up needing emergency open heart surgery, both kidneys shut down, I lost peripheral vision in one eye, and I suffered a possible mild stroke. In the matter of a few hours my life changed. I experienced several losses, and learned that what I thought I knew professionally, I didn’t. What I soon learned too, was that the medical community lists the educational needs of kidney patients low on their priority list. I’m stunned that with the prevalence of kidney disease, that it’s hardly written about. Going to the grocery store is a reminder of the massive limitations that someone like myself, now diagnosed with stage 3b, faces when up against products that are high in salt , potassium or phosphorus, not to mention the sugar. But where are the posters/ flyers/ advertisements about kidney disease?My liver is currently inflamed, a new symptom this week, which means I must further limit foods from an already short list. So I ask, where is the funding for research? Why is the food industry producing foods that so many living with kidney disease cannot have? If my memory serves, 1:7 people have kidney disease and 1:6 are veterans. I guess my post is more venting about the situation than providing solutions. Most of the time, i reflect on the gratefulness I have for so many people and experiences, but the disease and the lack many essentials can be demoralizing. How can our community raise the level of awareness and needs?
where is the funding?: I am a social worker... - Kidney Disease
where is the funding?
It is terrible isn't it. And what is worse is the medical field, doctors dismiss early CKD as if there is nothing to do about it. Many people do not see a nephrologist until they are stage 4.
I cannot imagine going through a life change like you did and come out on other side so positive. Glad you joined our community.
To answer your question, get involved. That is how change is made: Become a patient advocate for NKF or AAKP, the two big kidney organizations. Volunteer to sit on patient advocacy boards. Volunteer to work with legislatures and law makers to get the funding and change things. I work with two large pharmaceuticals as a patient advocate, and they are truly trying to make changes in early detection. One example of how patients impacting things was the addition of potassium on labels. Now we need phosphorous. Another example was the removal of race in the quotation of GFR. Two big examples. Things do change but the patients need to get involved. You will also find it helps you personally deal with your own illness.
But you are so correct in the limitations of CKD diet. Try adding being diabetic, which so many are, including me. I tell folks, there is about 7 things I can eat...... I limit salt, potassium, now phosphorous, carbs and sugar and no additives or preservatives. But believe me, I am not starving.
You are correct, as always. We helped make real changes!!! That ‘s a rare win. Even those of us known with sunny dispositions get down with the amount of idiocy out there in our big world today. But we can make a difference. Heck, there’s a whole lot of confusion put down in this board as well…one person at a time. 👍
I am a Cold War Veteran. Thanks for your activity for Veterans. I was diagnosed CKD 3b at age 76. Previous Doctor ignored my symptoms. I am on a CKD diet that is limited on phosphorus, potassium, sodium and protein. It is a challenge but well worth it.
I know exactly what you are talking about and I feel for what you are going through.
I had a tumor on my left kidney that required a full nephrectomy including adrenal gland. In recovery my adrenal artery opened up and I almost bled to death and went into acute kidney injury. I was on dialysis for a few months, a year later I’m at 30 eGFR.
All of the sudden I was in CKD and found it very confusing to figure it out. I had to ask the right questions to my doctors or search online, nobody really explained it very well. I remember being in the hospital and just surprised they didn’t have documents they give you informing you about CKD. It all was very piecemeal.
And then the food. I saw the statistics of how many people have CKD and there seems to be very little public awareness or options. I remember being surprised about the ingredients of most foods, even supposedly healthy ones.
I don’t have a solution other than empathy for what you are going through. This was my first surgery I ever had; there is no such thing as a trivial surgery.
3B here, pre-diabetic. I share your frustration. I was referred to a nephrologist by my gp who didn't realize nephs don't treat 3bs in Florida. I had just come out of a 4 day hospital stay for Erlichiosis where my Egfr went down to the 20s. When I went to my appointment he came in to meet me, sent his nurse in who stayed for a few minutes and as she left she said, there won't be any more appointments, we don't treat your condition. No explanations. Now I'm back to NC and my wonderful clinic has gotten a grant for 3 visits with a nutritionist. I had my first appointment a couple of weeks ago, and what I have gleaned is a plant based diet is the safest route as long as you get your necessary nutrients. I have decent potassium numbers so I can now eat tomates and avocadoes within reason. !! go to the National Kidney Foundation and see if they can connect you with a renal dietician in your area.
Thanks for the response. That is a sad condition of nephrology in Florida. At least I have a nephrologist with regular checkups, although I'm not to impressed with him.
You mentioned a plant based diet. I posted a thread with some information regarding a plant based diet. I had been vegetarian for 30 years already, started eating some chicken before my nephrectomy, but going back to plant based isn't a problem for me. Here is a link to my thread if you are interested.
I replied yesterday to a post here vaguely similar. In my experience the knowledge gleaned from research is in existence. Somehow medics don’t seem to get properly involved in providing patients with the information. Information is whittled down to practically nil. I am certain a whole book about care and ‘self care’ could be written and supplied to the patient. The same for many specialisms/illnesses.
Why not? It’s a culture of over reliance on medics who do not know nearly enough or perhaps just don’t have the time. There is a culture of too much trust in the medic and not enough respect for patients in return often.
It would take resources to do this (save the doctors repeating themselves). Perhaps a charitable based organisation could do this. Save us all studying for a medical degree ourselves to get the information.
There are books, and tons of information out there. National Kidney Foundation and AAKP also have a plethora of information. The patient must seek it out. Doctors are limited in their time with patients and other than steering them towards a dietician and information, they do not have the time, nor is it in their wheelhouse, to teach renal nutrition. Thier role is diagnosis, discovery and then medications. Many doctors are not privy to the new drugs out there, but it is getting better. It really is up to the patient to advocate and educate themselves.
Yes Bassetmommer. I agree. And yet the department would be the ideal place to pick up the info. It’s just when you are ‘shocked’ or ‘ill’ it’s a bit of help you need not hindrance. And hindrance is not having the information on hand and having to do the research and the study yourself.
yes I agree. But here is the situation because I totally agree with you and try to do something about it. So, I am connected to a medical center. It is the hospital, clinic and doctor offices. (My dialysis is with a different place) When I was diagnosed, I hooked myself up immediately with the local NKF and asked for pamphlets and info to leave int the nephrologist's office. She had agreed to it. The medical center, however said no way. Since NKF is funded with donations, they said it would be a conflict to put NKF info in, and not ALL the organizations that are non-profit. So they just said no.
Crikey! Why am I surprised?
I find this to be so true. One has to advocate and educate.
Clinical practice in any area, not just CKD, is decades behind research studies. My nephrologist is relatively young, early 40s. But he was never taught about the impact of diet on slowing CKD. When I said that I read an article citing clinical practice being at least 10 years behind the research he laughed and said it's actually more than 20 years behind.
Barbara, the nephrologist I went to one time didn't take seriously my questions about the best foods to eat for CKD. He kept stressing cutting out the salt, which I agree with, but needed more information. I asked my GP on my last visit which foods were best, and she became a bit flustered and said sweet potatoes are better than white potatoes. Fini.
I still want a renal dietician, but can't get any information. Thank goodness there is good information through DaVita and other sources. Do you think they don't care?
Mine told me he doesn't bring up a vegan diet since most people can't do it! I keep pushing eat to your labs here because not all of us are alike. I need salt and potassium. My CKD is from dehydration.
Accdg to what I’ve read here, doctors really do not believe any diet will help CKD. Have you found this not to be so?
At my hospital where I grew up—I was there so often—there were hundreds of pamphlets available all in one area of the hospital. I used to read them all. They had everything! Even kidney. But it was based on surgical or topical procedures—nephrectomy, repair, diabetes, PKD, lupus—but there were never any with nutritional information.
Anyways, took me back thirty years…
no, my nephrologist firmly believes in diet. And I was living proof. She told me in 2018 I would be on dialysis in six months. Changing my diet and lifestyle, I put off the inevitable for 6 years.
I believe it has a lot to do with insurance companies setting the bar and the docs just go along with it
I'm in dialysis go to the center 3 times a week. I also work full time and spend a lot of time talking to people about kidney disease and dialysis and the need for kidney donors. Most just get a glazed look on their face, some ask about how it affects me. I'm honest with people but I don't really see change. I work for a small Indian tribe and the rate of diabetes is astounding yet at least once a week someone brings in donuts, cupcakes, cake, or other dessert items. At least 60% of t he 33 people in my office are overweight. There is a really nice fitness center here that is free for us to use and we are allowed to go there twice a week during lunch. One person I know goes and he's not overweight. Most of them go out to eat and there is nothing healthy around here. Like they say you can lead a horse to water but you can't make it drink.
The number of CKD patients in this country alone is staggering. We don't know how to eat. But I'm noticing at least some of the restaurants are serving lo-sodium dishes, and some grocery stores are paying more attention.
Some of the smaller, non chain will make your order as you specify. As for grocery stores if you shop around the edges you can get more fresh foods. Farmers markets are good places for fresh fruit and veggies. You really have to know your labs though and pay attention. A one size fits all diet plan won't work for kidney patients and especially dialysis patients.
The dietician at my dialysis center pisses me off when I asrn cak to help she just gives me pre printed sheets with information I can find on the internet. My social worker and nephrologist are no better with what they provide. You have to do your own research and that's what trips up a lot of people. I hate to say it but they are lazy and don't want to do the work. And it's not exactly easy.
I tried plant based when I first found out I had CKD but I almost starved as I needed more protein and more calories as I have Graves Disease and I burn lots of calories just sitting there. I don't add salt to foods and watch what I eat but now my sodium is low...it's frustrating.
I feel the same, especially in many of the younger folks. I know, i sound ancient, but I’m 52. (Plant based doesn’t work for me physically, either.)
You are allowed to be confused, angry, hopeless even—but you cannot afford to be consistently lazy about your healthcare and its research! Once in a while? Ok, fine, be lazy. Ha ha.
When I couldn’t get any doctor to believe in my childhood pain and symptoms, my mom and I turned to the library. There was no internet. It took us years to comprehend…years. It was too late to save one kidney, by then.
Why can’t we write our own pamphlets, sell at cost to hospitals, 503CB and whatever non-profit-code-designations, and voila?
Do you know how many people won’t bother to look up CKD on the internet ? Not for themselves. Not even for their own mother. Astounding.
But the energy that goes into being on boards and the like, I do not have. I have adrenal failure (insufficiency) and I’m a devoted introvert. But I can write…especially about medical stuff. Just an idea—ya’all aren’t actually busy, right? Tee hee.
You know who to ask!
PS: I perhaps should not have had a second cup of coffee tonight…
IWhen I was first dx with Kidney Disease 25 years ago, it was shocking how very limited information was available...and most of that was redundant...I was not Diabetic and I did not have high B/P, and no one knew why my kidneys were failing.....lDiet helps...as long as you can read and trust the ingredient labels..
A "Dexcom Device" (the wearable device that reads glucose level)that could display your Phosphorus...Potassium and Calcium every 5 minutes would be great, except they dont make one......... I asked my Nephologist why one day and he said that they could easily make one , but right now all the research dollars go into Diabetes. .Wouldnt that be nice if we could check our readings before eating to help us stay in the reference ranges as we "eat to our Labs"
The Implantable Artificial Kidney would be a game changer...but not alot of Research Dollars go there either.....While the largest amount of U.S. Medicare Dollars go for Dialysis each year...amazingly no one seems that interested in finding a better solution fir Kidney Faulure !
I am now on Peretoneal Dialysis...after watching my kidney function decline for 25 years ...hoping for that magic cure that seems more distant every day...
I do PD on a Cycler at home while I sleep and do quite well on it for now...
After seeing the exorbitant cost of my PD...I finally now know why my Kidneys failed....I am just too damn lucrative for Dialysis Manufacturers not to...
Excellent points!
Yes, look at the NKF website kidney.org and find out how to get involved. I live in WY and I am a Kidney Advocate. In 2022, with the help of my local WY State Representative our Governor signed the Living Donor Protection Act into law. Ends discrimination and prejudice from insurance companies if as a living donor you wanted to give me a kidney.
Also, not sure where you live, but there are Donor Alliance groups throughout the country. I am almost 25 years post kidney transplant. I had my transplant at U of WI Hospital. I was active as a volunteer & public speaker with the Donor Network when I was living in WI. Now that I live in Wyoming I am an Advocate & public speaker for the Donor Alliance CO/WY. My advocacy efforts got our Governor Gordon to Proclaim Wyoming a Donate Life Community. April is Donate Life Month and our WY Med Center had a flag raising of the Donat Life flag on April 1st. As a Recipient I was there to raise the flag. The local TV station was there as well as a reporter from the Cowboy State Daily. The City of Casper on April 2nd proclaimed the city as a Donate Life Community! We have an Oil Derrick along the Platte River and this month it is lit in Blue/green spot-lights for donate life month.
Donor Alliance is raising awareness of the need for organ donation and the need to help with the health of those with kidney failure. The NKF says that 1 out of 3 have kidney disease and don't even know it. So anyway that we can get the word out and have others understand the problem.
Advocacy can be contagious! My donor was a 16 year old that was killed in a horrible car accident. And now his parents are driving kidney patients to their dialysis appointments.
Become active and be the VOICE in your community for Kidney Health!
Wow you sound like a wonderful ball of energy! Thank you for your effort and work. Amazing.
Profits rule in US health. Dialysis is dominated by two for profit providers. Both companies have a history of positions and actions designed to increase the reliance on dialysis to increase profits for their company owners. Sadly, the lack of regulations in the US have allowed dialysis companies to continue unethical and racist practices. Because the dialysis profits are so high providers systematically fail to encourage transplants and home dialysis options. The have lobbied and gotten rate adjustments to make home dialysis more profitable so some center now let people know about home options.
While individuals may have positive experiences at their dialysis center, however nationwide the unethical behavior continues to harm patients to maximize profits.
The profit the private dialysis companies make is ridiculous. I am still overwhelmed and not sure what, if anything anyone can do about this..... but they charge Medicare over $11K PER TREATEMENT and I am doing everything. The only thing is the coverage from NxStage, which is owned by Fresenius, to talk to when you are on. I do not call every treatment. They own the center where the nurses work, but I only see them once a month. She is supposedly reading my charts, which I write. Fresenius owns not only NxStage, who owns the machine, but the supplies like saks and paks and lines. Then the company that ships the saline and needles and stuff and the lab is also Fresenius owned. They wanted me to use their pharmacy, and they also own that. I used it for some of the drugs that are covered but not all. So, I am a cash cow to Fresenius. My Nephrologist gets paid also way more for the clinic visit than when I saw her in her office. Like over $500.00 more. Why would they recommend me for transplant?
Yep. Dialysis clinics control and gatekeep information. For educated, upper middle class folks who have their own access to resources - people who can work the system - we refer ourselves for transplant. For people in poverty, people who don't have internet access or research skills, people who don't have the education, skills or personality to ask questions, they never even learn about their options. I have a coworker on dialysis and when I met with him to learn about it he said no one had ever suggested transplant with him. I was shocked. He was way younger than me, thin and fit. He just wasn't the type of person who asked questions or researched. "Won't the Dr. or the center tell me if I can get a transplant?" The people on this forum and other CKD forums are not the norm. We are the outliers who have skills, access, motivation to gain knowledge and take control of their own health care. Most people just nod and smile or nod and cry at what Dr.s tell them. Many people see Dr.s as authority figures that shouldn't be questioned.
*faints*
jeez i had no idea that was going on.where can i find more info on this?this is making me have second thoughts about dialysis when the time comes
The thing about having second thoughts about dialysis, is there are only two choices. On or off and off equals death. We need to be grateful for those who went before us who fought for the coverage that we now have to end stage renal disease. I cannot imagine making the choice to have to sell my home to pay for dialysis. I know I am very lucky because I literally pay nothing for any of it. I do not like that Medicare is getting billed what they are and I am working on finding more about how can they charge so much for not doing anything.
i understand that bassetmommer but i still think its pretty low.i wish more people were aware.
Here's the worst, worse, worsest part..... I took my cost per treatment, just the treatment, no supplies or anything else, and multiplied it out and they make:
$1,716000.00 one million, seven hundred and sixteen thousand dollars for me, just me to do my treatment. BUT they pay the med techs who work the machines in the centers around $18.00 an hour. And my Med tech said they could not afford to pay her more.
horsepucks
why horsepucks?
i meant that if they made that much off you they could darn well afford to pay the person working with you more than 18 an hour .sorry i shoulda clarified but that made me mad.
Makes me mad everyday..... and it is one of the things I am looking into.
i meant that if they made that much off you they could darn well afford to pay the person working with you more than 18 an hour .sorry i shoulda clarified but that made me mad.
Sadly in most communities the only dialysis centers are owned by the two main players. DaVita and Fresenius. They have bought out all the small firms. In many areas you don't get a choice in clinic.
dirty pool.thanks barbara
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