Kidney News and Advocacy

I wanted to open up a space to talk about renal news in the TYT space. I believe TYT has only covered renal topics a couple of times. I just saw the segment that on October 6th 2021 with John and Adrienne about UCHealth’s requirement that people must be vaccinated in order to go through the kidney transplant process.

I think they hit all the key points of that story and I am not trying to cancel anyone. I am only one person but it really impacted me hearing them talk about the potential rejection of a kidney as a “waste of the organ”. That mentality implies that the person did something wrong when it happens even when the person does everything right. As well as, sometimes in kidney rejection, the person sometimes dies. My family has had family members die and be told to be great full that they did not receive an organ because it did not “go to waste”. And I don’t think either of them meant harm by saying it the way they did but I wanted to put this out there as a “coach-able moment”. It feels like a great way so begin to incorporate talking about kidney news.

Why do I and why I am talking about kidney news? I talk about kidney news because a lot of the policies that impact renal patients is left up to policy decisions, whether that be a good thing or a bad thing. Often people making decisions about kidney health, are folks that don’t have kidney disease or don’t know they have kidney disease therefore it isn’t a high concern to learn more information about. And why me? Because I am a fourth generation Autosomal Dominant Polycystic Kidney Disease (ADPKD or PKD for short) diagnosisee, I am an advocate and activist for people with chronic kidney disease, and it is critical to have someone who is apart of the kidney community talking about renal disease. Often the news media portrays a medical model of people with kidney disease. It can be very damaging, can quickly float into misinformation, or worse eugenics territory.

Lastly, there needs to be more Progressives engaged in kidney politics. Often I am the only progressive in these kidney spaces where I have to negotiate with people from a very conservative background. And it’s really hard when human life has is boil down to dollars and cents. 90% of people with chronic kidney disease in the United States don’t know about it. Some of the top reasons that people develop chronic kidney disease are from high blood pressure, diabetes, and genetic diseases like pollicis kidney disease. The best treatment and care to reduce chronic kidney disease is preventative action. But currently, about third of people crash on to dialysis with little to no care prior from a kidney doctor. The current average wait time for a kidney donation in the United States is five years, and an impacted areas (Los Angeles and New York) it can be as much as 8 to 10 years. People under the age of 65’s life expectancy exponentially declines on dialysis after three years. And the CDC is projecting the prevalence of people with chronic kidney disease in the US to raise 2% by 2030 which will be 16% of the population. And of course it goes without saying there are racial health disparities that also impact life expectancy outcomes. All this data isn’t showing the financial costs of what renal disease and kidney failure does to an impacted family and community or the mounting uncertainties with climate change, pandemics, supply chain failures, etc. Progressive policies and people fighting for basic healthcare could give people extra time so that their parents could see them graduate, meet their first grandchild, or have them be able retire.


Thank you so much for taking the time to write this. It’s definitely an issue that doesn’t get the coverage it deserves - thankfully you’re here to advocate for it, keeping us honest and informed. If you have any sources to add here so that people can read and watch more about this, please feel free to add. It sounds like you’ve been through a lot and I really appreciate that you find a way to stay motivated to help others.

I felt unsettled that kidney transplant denials started with the insurance companies purportedly making claim denials. As with all healthcare I don’t feel they should be driving the discussions.

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There are no words to describe how disgusting our for-profit healthcare system is.

Of course! I have so many. It wouldn’t let me post links but this should be enough to search from the article. Here are some of the ones that pertain to the information I talked about above.

Of course! I have so many links. Here are one that pertain to the information I talked about above.

Chronic Kidney Disease in the United States, 2021 from the CDC

Kidney Disease: The Basics from the National Kidney Foundation

Causes of Chronic Kidney Disease from the NIH’s National Institute of Diabetes and Digestive and Kidney Diseases

Chronic Kidney Disease Initiative; Prevention and Risk Management from the CDC

Simple Steps Can Prevent the Progress of Chronic Kidney Disease from the National Kidney Foundation

Unplanned Start on Peritoneal Dialysis Right after PD Catheter Implantation for Older People with End-Stage Renal Disease by Johan V Povlsen in NIH’s National Library of Medicine

Organ Type and Waiting Time from United Network for Organ Sharing (UNOS)

Transplant Waiting List from the American Kidney Fund

L.A.’s Poorest Patients Endure Long Delays to See Medical Specialists. Some Die Waiting by Jack Dolan and Brittny Mejia from the Los Angeles Times

Chronic Kidney Disease (CKD) Surveillance System; Indicator Details - Emerging Topics: Projected Prevalence of CKD in 2020 and 2030 in Adults Aged 30 Years or Older from CDC

Social Determininants of Racial Disparities in CKD by Jenna M Norton er al from NIH’s National Library of Medicine

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Thanks much!

You should be able to post link after a short period of time interacting here.

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What’s your take on alcohol consumption, genetic or chemical alterations to produce or food as a whole, and water quality related to this issue?

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That is a great question. First off, I am not a dr. So I can really only tell you about my experience and say that every person is different. Also there is a lot of information on each topic. I am totally down to going into further detail and research but as not to overwhelm, here is some brief information.

Firstly, alcohol consumption: the National Kidney Foundation in their article Alcohol and Your Kidneys (at updated on 06-29-21 says, “Always check with your healthcare provider to make sure it is safe for you to drink alcohol. Even if it is safe, it is important to drink in moderation. A good guideline is: no more than one to two drinks a day for men and one drink a day for women and people over 65.” Then the NIH’s National Library of Medicine had a journal article “Is moderate alcohol consumption a risk factor for kidney function decline? A systematic review of observational studies,” by Alessandra Buja, Andrea Vinelli, Camilla Lion, Emanuele Scafato, and Vincenzo Baldo (at Is moderate alcohol consumption a risk factor for kidney function decline? A systematic review of observational studies - PubMed), says “Although alcohol consumption in selected populations was inversely associated with renal impairment, a beneficial role of alcohol consumption on renal function has not been consistently demonstrated.” My personal take is to try to be mindful of how much I consume because it is going to go through my kidneys; but also, I am human and I have not followed this advice. Sometimes having a chronic disease, it can hard dealing with it. Some folks have been known to turn to alcohol and other maladaptive coping mechanisms.

Next, genetic alterations to produce or food as a whole: this is a harder topic to find sources on because the GMO debate can be less factual sometimes. I am definitely am down to continue looking into genetic alterations but not something I have a large knowledge base on.

Continuing on, chemical alterations to produce or food as a whole: This topic is pretty dense because a “chemical alteration” is the process of cooking. This is largely dependent on what stage of Chronic Kidney Disease stage a person is at. There is a Healthline has an article called Stages of Chronic Kidney Disease (Chronic Kidney Disease (CKD) Stages: Symptoms & Treatment). CKD stage 1 and 2, the most important things are to have a low sodium and low sugar diets. That is an almost across the board advice for CKD because the rate of high blood pressure and diabetes that cause CKD. There are also medical professionals that advocate for a low animal protein diet to reduce the impact on the kidneys. Then a dialysis patient will also have to be EXTREMELY MINDFUL on what their consumption levels of things like sodium, potassium, calcium, phosphorus. There are possibly others, but I am struggling to recall what they are and everybody responds differently. Therefore blanket advice isn’t always the most helpful.

Also, even though it isn’t food, NSAIDs are causing a lot of CKD. Again not a doctor but there seems to be a lot of discussion in the medical community of the use of NSAIDs in people with CKD. NSAIDs in CKD: Are They Safe? - American Journal of Kidney Diseases So, talk to a kidney doctor before using Ibuprofen long term about the impact to the kidneys.

Lastly, water quality: not something I have heard a lot from. I suspect it is because of the places I have lived, water contamination isn’t a huge conversation yet. Says someone who is in the early stages, they often push for me to drink 3 liters a day of water because dehydration also harms the kidneys. So I asume, contaminated water would also impact the kidneys. Again, it might not be as well known in the USA because the chronically under diagnosis’s rates of chronic kidney disease. I will do a deeper dive into this topic because I think that is a really interesting intersection that isn’t brought up in kidney spaces but totally makes sense.

Here are some quick finds on this topic. Dr. Leslie Spry wrote an article for the NKF called Environmental Pollution and Kidney Disease ( that touches on it. Then the rest are scientific articles, there is “Drinking water quality and chronic kidney disease of unknown etiology (CKDu): synergic effects of fluoride, cadmium and hardness of water” from Drinking water quality and chronic kidney disease of unknown etiology (CKDu): synergic effects of fluoride, cadmium and hardness of water - PubMed. And " Associations between Water Quality Measures and Chronic Kidney Disease Prevalence in Taiwan" from Associations between Water Quality Measures and Chronic Kidney Disease Prevalence in Taiwan - PubMed .

I hope this helps. I really appreciate your question because it was informative to look into and think about these topics. So let me know what else you got.


Wow this is amazing research. I use to work as surgical assistant so I use to delve in subjects and research to make sure I was always providing the best care. But I have a lot of ideas and input if you have any specific ideas I’d be more than happy to contribute !!! As far what you have and what I know off hand, there are additives in our current public foods to increase the longevity of its storage life, and as far as produce fertilizers, and certain fruit seeded have genetic mutations to make them more of appetizing visually and also increase their storage time as well.

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also the liver does have a large factor in this as well, most of the systems in our body are connected in some form, for example having poor oral hygiene, a.k.a the entrance into you body, contributes to bacteria loads your body has to filtrate, which comes also poses the question of what limitations to you specifically are pre-disposed based of f of your genetics, and the fact our body is a linked system, it’s only logical to apply the theology were only strong as our weakest link*

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Yes!!! This is a real struggle in more ways than I think most people realize. That is why I mentioned a low sodium and low sugar diet because they are often used as a preservative or additive. Often people worried about sodium intakes must make their own foods because cheaper/easier even though it takes more time which can be hard to do with exhaustion. Here is a pdf from the NKF about having a low sodium diet (if anyone needs it)

Also, on the sugar front, it drives me absolutely crazy how much added sugar is added to things. The foods my kids get from school always have more sugar than I would buy them. For example, the school yogurt ( LAUSD approved snacks pdf, Upstate Farms 8 oz strawberry yogurt) has 21 grams of added sugar in it’s Yogurt! But then the National Heart Association says children should have less than 25 grams of added sugar a day ( Or the WIC approved soy milks, that as young as 1 year old children are drinking, that have 7 grams of added sugar per serving when some non WIC approved soy milks have zero added sugars.


I have no doubt the liver has a large part to do with it. I haven’t done as too deep into a diver as the impact of the liver on the body but I have met people who needed both a kidney and liver transplant because of PKD and getting Polycystic Liver Disease. But PLD is a rare disease but has a higher rate of people with Autosomal Dominate Polycystic Kidney Disease. And as Dr. Anjay Rastogi, from UCLA Nephrology, says, “What’s bad for your heart is bad for your kidneys” ( It totally makes sense that everything is tied together.

I have had a dentist tell me that gum disease can lead kidney disease because the thin member of the gums can pass infections into the blood and to the kidneys quickly. I quickly looked into that. UCSF is studying the links (Investigating a Link Between Oral Health and Kidney Function | UC San Francisco) it is from 2013 but says that there aren’t many studies on the topic. And Medical News Today from 2016 ( talks more on the topic.

I see what you are saying. I don’t know if I totally agree. I personally view it more of a zone defense because of how complex the body is and how it works together. It can also led to the narrative of a person with chronic disease not doing enough when a lot of the problems are more systemic. But that is just from my point of view. I am just one person.

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you got it lol fFructose is a type of simple sugar that makes up 50% of table sugar (sucrose).
Table sugar also consists of glucose, which is the main energy source for your body’s cells.
However, fructose needs to be converted into glucose by the liver before it can be used by the huge factor for diabetes the sugar that is readily or easier to break down of glucose

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no your actually dead on, and that what I’m trying to convey, or body is a systemic entity, in sense of basis systems in our body that mutual contribute to whole system with multi variables, that’s why symptoms are hard to decipher to for diagnosis

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