4 ms·

It's a good read. I enjoyed the data analysis and his snarky wit about a few things. I enjoyed him finding out he could apply to another hospital and doing it "

It's a good read. I enjoyed the data analysis and his snarky wit about a few things. I enjoyed him finding out he could apply to another hospital and doing it "out of spite." I know he wants to encourage you to donate a kidney. I still wish we tried harder to heal the "original equipment from the manufacturer" we are all born with. I have been on the record a long time with this opinion. I get a lot of hatred for it, though I have a condition that frequently results in being a transplant recipient and my only wish here is for better baseline care for people like me instead of razzle-dazzle headlines about flashy "tech" solutions. Good solutions tend to be boring. I want a boring life where I just get to have good health and not an "exciting" one where I get to tell you how I was dying until some kind stranger died in a motorcycle accident at a shockingly young age and let me have their leftover body parts. (Because people like me need body parts that are a little hard to spare as an act of charity.)

jodrellblank 3y ago
Grant Generoux claims his chronic kidney disease ("incurable, fatal") was healed by his low vitamin A diet. We know from studying technical outages and systems failures that the more checks and balances we put in place, the weirder the cause of any outage will be - because only the weird things get through where the gaps between the checks all line up. Of course the claim isn't wrapped up in a simple package with conclusive proof and widely agreed on - if it were, it would be mainstream accepted knowledge. Why hasn't it been noticed? Because the damage is cumulative and long term - years or decades. Because it's fat soluble, so the effects are modified by the amount of fat eaten at the same time. Because the effects are diffuse - it's not showing up in one single organ. Because the effects look like other things - autoimmune attacks, for example. Because historic mistakes in studies have caused 'vitamin A toxicity' to get mixed up with 'Vitamin A defficiency'. Because it varies with different people with different liver storage capacity and historic retinol compound buildup. Because it may be masked by protective effects of Vitamin C or other dietary components. Because stopping eating it offers no quick fix, healing might be "wait years for damaged cells to die and new ones to grow". Because there's no money in telling people to eat less of somethings, so there's little industry funding incentive or research grants. Here for example, one of the other people who agrees with the claim of Vitamin A being harmful shows their working: https://ggenereux.blog/discussion/topic/biotransformation-of-retinol-finally-revealed/ https://ggenereux.blog/discussion/topic/biotransformation-of... - Under Discussion it says "It is now no longer difficult to imagine how retinoic acid [ed: Vitamin A/retinol related compound] could cause auto-immune disease, since the data appears to show that retinoic acid is essentially a pro-inflammatory cytokine that is stored in the liver and, once the liver is saturated, in different types of tissue all over the body, especially in epithelial cells that constitute blood–tissue barriers, and in adipocytes, both of which were shown to express STRA6 (Amengual, Zhang et al. 2014). [... explanation continues]" I am never going to study enough chemistry, biology, biochemistry, statistics, medicine, to be able to make a judgement call of my own about that page, let alone all the other studies people have linked to and pulled apart. At least it's cheap and relatively easy and low risk to try, but even if my health improves (I don't have kidney damage) it could easily be attributable to many other factors - placebo, for example.
tux3 3y ago
>I still wish we tried harder to heal the "original equipment from the manufacturer" we are all born with You know that this is hard. Are you saying we should just spend more in that particular area instead of spending on kidney transplants? Eventually research will improve and we may need less transplants, but in the meantime they're a great solution, and according to a quick search those transplants actually save the healthcare system money. Research is great. But the flashy solution turns out to be also great, pays for itself, and yields concrete results today. Sometimes I think there's too much of a reaction against flashy, to the point that people discount the flashy things that are good. We should judge things on the outcomes and the costs, not superficially on whether they feel boring or flashy!
bawolff 3y ago
> I still wish we tried harder to heal the "original equipment from the manufacturer" we are all born with I mean, i don't think its for lack of trying.
- DoreenMichele 3y ago
  I was bluntly told "People like you don't get well. Symptom management is the name of the game." I replied "It may be true that I will always be infected with something but this particular infection has to go as it's killing me." My doctor physically took a step back as if I had slapped him. I'm quite confident it's due to lack of trying. If you have zero goal of actually getting me better, please don't blame my condition for your failure to get me better. That seems blindingly obvious to me. I want to spit nails that it gets so casually hand-waved off.
  - bawolff 3y ago
    > "It may be true that I will always be infected with something but this particular infection has to go as it's killing me." > My doctor physically took a step back as if I had slapped him. Not to be cold, and I'm sorry, but what did you expect. You are talking to a doctor not jesus. Everyone with an uncurable disease wants a treatment but just because you want something doesn't mean its possible. If it did, nobody would die. And of course your doctor isn't trying to come up with novel treatments. Your doctor is not a medical researcher.
  - ryanbrunner 3y ago
    You're both sort of wrong. Solely symptom management should not be the recommended course of action for anything short of stage 5, and there is a ton you can do to slow or stop progression in the early stages, perhaps even avoiding the need for dialysis / tranplant altogether. But as much as you say kidney disease "has to go", it won't. Reduced kidney function from chronic kidney disease is permanent, and no matter how hard you try, you're not getting to the point where your kidneys get better. You can only pause progression.
    - 3y ago
ryanbrunner 3y ago
We can do both. I don't think anyone who encourages kidney donation wouldn't also advocate for encouraging healthy lifestyles and slowing down the progression of acquired kidney disease. I have a genetic disease that ends in kidney rejection 100% of the time, with no real way to prevent the progression of the disease. I'm healthy, exercise often, eat well. I've never been overweight or had the slightest whiff of hypertension, I run every day along with other exercise, and my kidneys still failed. Some percentage of kidney disease is going to be like me. I will say one thing that absolutely should change is better screening for kidney disease. A lot of times it's discovered because blood testing from some other thing coincidentally found a low GFR or high creatinine levels, and even then something like a 60-70% GFR is often dismissed by doctors. Fortunately we discovered the gene that causes my family's disease, so in our case we can be screened via blood tests, but for kidney disease without such a simple genetic cause we shouldn't leave identification and diagnosis up to luck.

jodrellblank 3y ago

Grant Generoux claims his chronic kidney disease ("incurable, fatal") was healed by his low vitamin A diet. We know from studying technical outages and systems failures that the more checks and balances we put in place, the weirder the cause of any outage will be - because only the weird things get through where the gaps between the checks all line up. Of course the claim isn't wrapped up in a simple package with conclusive proof and widely agreed on - if it were, it would be mainstream accepted knowledge. Why hasn't it been noticed? Because the damage is cumulative and long term - years or decades. Because it's fat soluble, so the effects are modified by the amount of fat eaten at the same time. Because the effects are diffuse - it's not showing up in one single organ. Because the effects look like other things - autoimmune attacks, for example. Because historic mistakes in studies have caused 'vitamin A toxicity' to get mixed up with 'Vitamin A defficiency'. Because it varies with different people with different liver storage capacity and historic retinol compound buildup. Because it may be masked by protective effects of Vitamin C or other dietary components. Because stopping eating it offers no quick fix, healing might be "wait years for damaged cells to die and new ones to grow". Because there's no money in telling people to eat less of somethings, so there's little industry funding incentive or research grants. Here for example, one of the other people who agrees with the claim of Vitamin A being harmful shows their working: https://ggenereux.blog/discussion/topic/biotransformation-of-retinol-finally-revealed/ https://ggenereux.blog/discussion/topic/biotransformation-of... - Under Discussion it says "It is now no longer difficult to imagine how retinoic acid [ed: Vitamin A/retinol related compound] could cause auto-immune disease, since the data appears to show that retinoic acid is essentially a pro-inflammatory cytokine that is stored in the liver and, once the liver is saturated, in different types of tissue all over the body, especially in epithelial cells that constitute blood–tissue barriers, and in adipocytes, both of which were shown to express STRA6 (Amengual, Zhang et al. 2014). [... explanation continues]" I am never going to study enough chemistry, biology, biochemistry, statistics, medicine, to be able to make a judgement call of my own about that page, let alone all the other studies people have linked to and pulled apart. At least it's cheap and relatively easy and low risk to try, but even if my health improves (I don't have kidney damage) it could easily be attributable to many other factors - placebo, for example.

tux3 3y ago

>I still wish we tried harder to heal the "original equipment from the manufacturer" we are all born with You know that this is hard. Are you saying we should just spend more in that particular area instead of spending on kidney transplants? Eventually research will improve and we may need less transplants, but in the meantime they're a great solution, and according to a quick search those transplants actually save the healthcare system money. Research is great. But the flashy solution turns out to be also great, pays for itself, and yields concrete results today. Sometimes I think there's too much of a reaction against flashy, to the point that people discount the flashy things that are good. We should judge things on the outcomes and the costs, not superficially on whether they feel boring or flashy!

bawolff 3y ago

> I still wish we tried harder to heal the "original equipment from the manufacturer" we are all born with I mean, i don't think its for lack of trying.

DoreenMichele 3y ago
I was bluntly told "People like you don't get well. Symptom management is the name of the game." I replied "It may be true that I will always be infected with something but this particular infection has to go as it's killing me." My doctor physically took a step back as if I had slapped him. I'm quite confident it's due to lack of trying. If you have zero goal of actually getting me better, please don't blame my condition for your failure to get me better. That seems blindingly obvious to me. I want to spit nails that it gets so casually hand-waved off.
- bawolff 3y ago
  > "It may be true that I will always be infected with something but this particular infection has to go as it's killing me." > My doctor physically took a step back as if I had slapped him. Not to be cold, and I'm sorry, but what did you expect. You are talking to a doctor not jesus. Everyone with an uncurable disease wants a treatment but just because you want something doesn't mean its possible. If it did, nobody would die. And of course your doctor isn't trying to come up with novel treatments. Your doctor is not a medical researcher.
- ryanbrunner 3y ago
  You're both sort of wrong. Solely symptom management should not be the recommended course of action for anything short of stage 5, and there is a ton you can do to slow or stop progression in the early stages, perhaps even avoiding the need for dialysis / tranplant altogether. But as much as you say kidney disease "has to go", it won't. Reduced kidney function from chronic kidney disease is permanent, and no matter how hard you try, you're not getting to the point where your kidneys get better. You can only pause progression.
  - 3y ago

ryanbrunner 3y ago

We can do both. I don't think anyone who encourages kidney donation wouldn't also advocate for encouraging healthy lifestyles and slowing down the progression of acquired kidney disease. I have a genetic disease that ends in kidney rejection 100% of the time, with no real way to prevent the progression of the disease. I'm healthy, exercise often, eat well. I've never been overweight or had the slightest whiff of hypertension, I run every day along with other exercise, and my kidneys still failed. Some percentage of kidney disease is going to be like me. I will say one thing that absolutely should change is better screening for kidney disease. A lot of times it's discovered because blood testing from some other thing coincidentally found a low GFR or high creatinine levels, and even then something like a 60-70% GFR is often dismissed by doctors. Fortunately we discovered the gene that causes my family's disease, so in our case we can be screened via blood tests, but for kidney disease without such a simple genetic cause we shouldn't leave identification and diagnosis up to luck.