My older sister had end-stage renal failure (from IgA nephropathy [0]) and was on dialysis, so I donated my kidney to her. If you want to make an incredible difference in someone's life, I can't recommend it enough!
There are cool computer science problems involved: imagine person A1 wants to donate their kidney to their partner A2 but they aren't a match. Now imagine many such pairs exist (B1/B2, C1/C2, D1/D2 etc.) and you start noticing that while A1 can't donate to A2, they can donate to B2, and B1 can donate to C2, and so on! Thus the kidney chain is born. You get everyone together and have them agree that if their partner gets a kidney donation, they'll pass on the favor to someone else. All that's needed is a single purely-altruistic donor to start the fire. The longest such chain has reached over 100 people! [1]
Anyway, the surgery is laparoscopic and has an extremely low fatality rate: around 1/10,000, which is an order of magnitude lower than the all-cause mortality rate for living a single year of your 20s. The kidney is a fairly isolated organ, basically only attached to you via the renal artery/vein, the ureter (which carries urine to your bladder), and some fascia (internal connective tissue). You can see a full video of the surgery at [2] (if you're into that kind of thing). I was walking within hours of the surgery, discharged within two days, and back in the gym within 5 weeks. My life is not any different than pre-donation, and if anything goes wrong with my remaining kidney I go to the top of the donation wait-list! If you're interested, you can see more info at [3].
Kidney donation may be one of the most admirable and heroic things many people can do for another. I too have had family with renal failure (though I was not a match), and the potential to simply fix it with a match is wonderful. But anyone considering it should internalize upfront that there are potential real long term risks, and a surprising paucity of data since long term outcomes are apparently not rigorously followed. See for example "At 18 years old, he donated a kidney. Now, he regrets it"[0]. It's very much not to discourage anyone, but it'd be a shame to not go in with eyes wide open and have what should be something to be proud of marred by any feelings of deception. I have definitely seen the lack of hard long term data on real risks of kidney donation downplayed, it's not fair to portray "we don't see high risks" when that's because we just don't see much period. "Going to the top of the donation wait-list" for example is good, but there is in fact still a wait list.
All that said, the positive vs negative ratio certainly still appears high depending on the situation. And developments like the one in this article could also reasonably factor into an individuals analysis, after all in 20-30 years it may be a solved problem with high quality synthetic organs, so a young person giving a kidney now is more helping to bridge the gap, and by the time they themselves might have an issue they'll have saved a life yet not have the same trouble. Even so, donators should fully recognize that, all of them should absolutely feel as good about it as you clearly do.
As for the guy regretting it, the only real issue is the possibility of getting kidney disease going up from 0.1% to 1.0%. He is greatly over exaggerating the risk. You are screened for potential kidney risk factors before donating.
a USA Registered Nurse colleague casually mentioned while we were driving past one of the many, many chain store dialysis locations, that the service is inefficient and literally unsafe for many patients, and generally is over-prescribed. I assume because the drive-through model of the service, and the chain store, franchise-type setup, and reducing face-time with MDs, that this factory-like practice fits more to billing models and automation, so is chosen in a pseudo-market evolution. disclosure- I have no direct experience with kidney dialysis, nor known anyone who goes there.
I was on dialysis in the UK - Um not sure what you mean though the US has less home dialysis and prefers Hemo vs CPD
Dialysis helps you both stay alive and also helps extend the life of the failing kidneys - and a better outcome for a trasplant
Normally based on my experience you are prescribed your dialysis based on your remaing kidney function.
Dialysis is ideally a long process starting years before you start, combined with going on the transplant list (ideally you get the call before you go on dialysis)
this is incredibly dangerous advice for someone already on dialysis. there’s no fluid restriction for ckd until you hit esrd, in which case 3 liters a day consistently will damage your heart.
Overall downvote me all you want i was just wanted to tell others that going uber healthy with your diet is a good thing (logically it is an no one can disagree with that) and it has helped me increase and continues to increase my function.
I'd like to second the diet bit, namely that it can be an effective tool in some cases. Specifically, I have a relative who has trouble maintaining healthy kidneys. The primary tactic she uses to mitigate things is to avoid meat.
I have seen it work for 1000s in the Facebook group Natural Kidney Journey and across the Internet. Many success stories daily seen on that group match my positive results like your relative's same results.
Not sure why there is such downvoting going on about suggesting becoming more healthy to better your life and or at least try it to see if it works. Those who are highly negative are you saying a kidney patient who goes vegetarian or vegan is hurting themselves? Love to hear your thoughts!
Well, I mean she's kept things under control. I don't know if she (a nutritionist/dietician by training) would recommend radical diet changes while on dialysis.
Also, your comment made it seem like diet change is a silver bullet, when it is not. My relative has had a couple of times where she's had to use medicine to keep her kidneys from going non-functional.
I'm aware that you might not have intended it to frame diet change, but that's how it comes off.
Decreased extreme workouts that raise creatine, stopped/will not take any form of meds or pills, started drinking 3 liters of water daily and started cooking all my meals At home. My diet was horrible before ..no water, chic fil grilled chicken each morning and outback/bar food almost nightly. Though it wasn't fried bar food I cut that out long ago but food prepared by you is always going to be healthier then eating out.
So far my plant based renal doc and I are seeing positive results. Further I no longer have fluid build up when sitting for long periods.
I was diagnosed in September and looking back at my 2016 labs I see I had been living with only 55 percent kidney function (had no idea .. no symptoms.. you may not until it's too late) for whoever knows how long.
Most doctors aren't helpful and just say it cant be reversed ... hogwash .. what you put in your body matters. If you feed it processed crap and crap that is harder to break down then water and a say a natural food like a carrot, apples, etc your no doubt stressing out your system more then you need to especially if you have kidney disease.
Overall I didnt listen to the various stupid doctors I met with rather joined a facebook group called Natural Kidney Journey. My kidney function is healthier then ever as i was at stage 3a kidney disease now my kidney function is 80 percent and climbing after 7 months of revolutionizing my diet.
If you were to join that Facebook group too you would see many similar stories like mine daily. Further the creator of the group along with others in the group are now dialysis free .. see Don Davis's story https://www.forksoverknives.com/from-3-percent-kidney-functi...
Who knows but it works if you want to keep the kidneys you have as healthy as possible best to change your diet...is it going to hurt you to change your diet from fatty American diet to an uber healthy one? Also and curious why is this being downvoted ... I am telling my personal story to help those who want to make their kidneys healthier too.
Again, its not just me many, many similar success stories seen in that FB group and everywhere on the Internet for those who revolutionize their diet.
Overall not sure why some doctors aren't onboard ... but personally Im going to follow the data of 1,000 success stories vs. three doctors. Crowd data is more powerful then a few doctor's who were trained in medicine vs. nutrition.
I don't want to discourage you, but please don't take your experience as a justification to ignore medical evidence and advice.
Kidney function is most often estimated indirectly, based on measurements of the amount of a chemical called creatine in the blood. Higher functioning kidneys lower creatine levels more effectively. But lowering the amount of creatine generated by your diet, by cutting out animal products, will also lower the creatine measured in your blood. That change in measurement does not reflect an actual improvement in your kidney function, I'm sorry to say.
At lower levels of kidney function, attempting to game the numbers in this way, by minimizing the creatinine you consume and by over-consuming water, could be dangerously misleading. And it shouldn't distract from measures that do stop the decline in kidney function, like blood pressure control and avoidance of certain kidney-damaging meds (e.g. high dose ibuprofen).
Uhhh the numbers are what renal docs use to determine dialysis soon or now. Is that not right?
Cause what your saying above is the numbers don't matter? WHich contradicts all renal docs usage of the numbers!
Further yes my creatine is down and my eGFR is up, as well the fluid symptoms i suffered in 2019 are gone. My renal doc advocates plant based diets and has patients who has thwarted off dialysis for more then 20 years. Please tell me why I shouldn't follow all this data including from my primary care who advocates such diet change?
>Kidney function is most often estimated indirectly, based on measurements of the amount of a chemical called creatine in the blood.
That's the money shot. What he is saying is that given the assumption of a normal diet and a well functioning kidney, creatine blood level is a useful proxy for indicating kidney health.
The problem comes in that your creatine level's usefulness as a proxy for kidney health is reliant on the assumption you're eating a relatively normal diet. If you eat one low in creatine, but also have failing kidneys, the low level of creatine intake masks the kidney health indicator because the doctor will likely assume you are eating a normal diet, and not calibrate the numbers to reflect your particular situation.
It's not that the numbers don't matter; it's that you need to understand how the mechanics of the measurement can be effected by violated base assumptions. Always talk with a physician, and try to give them as much relevant information with regards to your lifestyle as you can.
Sure and each month I get labs done and review them with my renal doc. She advocates a plant based diet and has seen her clients stave off dialysis for over 20 years through diet. It took awhile to find such a doc as all others said there's no hope or nothing can be done..getting ready to decline further. Nope those docs were fired!
I wasn't trying to imply the diet approach didn't work. I was just trying to make it a little more clear how the mechanics of the measurement could lead to misunderstandings occurring in the absence of sharing details pertinent to the process of conducting the measurement.
I too have experienced what happens when you have to run the gauntlet of physicians who seem to have stopped thinking upon receipt of their medical degree as well. Hence the encouragement to coordinate with a physician. Not necessarily the one who might not be doing a great job working with you to manage your health.
I'm not a doctor just spreading the word as to what has helped me and tons of others. It may or may not work for everyone but eating healthier is something every being on the planet knows that's the best thing to do for overall good health. I can't see how it can hurt you to eat healthier, but again I'm not a doc.
I thought diet intervention is the primary treatment prior to dialysis. With the goal of prolonging the time until mechanical intervention or replacement becomes necessary. But I've never heard of diet alone taking someone off dialysis and a quick search for papers on the subject shows mostly positive associations of a reduction in protein on kidney function but nothing suggesting a magic bullet.
*edit To add, I have a couple of associates at my office approaching kidney failure. They're all on diet interventions to reduce protein and potassium. Not sure how the potassium interacts with it but I'm not a doctor either.
diet plays a huge role in kidney disease management for sure.
potassium is a big deal since it is filtered out by the kidneys and if your kidney function is lowered, dangerous levels could build up and possibly lead to a heart attack.
on the flip side you generally have to start ramping up protein intake once on dialysis.
but agreed that this isn’t straightforward and if it was so easy, people wouldn’t be on dialysis and renal dietitians would be overjoyed. it’s infuriating to read the other comments suggesting it’s all some garbage american diet.
Why is it infatuating... im just telling what has worked for me and 1,000s of others.
What harm will come from someone who is stage 3a to change their diet to uber healthy and increase water intake?
Are you a doctor?
It is everyones choice to make the best choices for themselves .. try things to see what works. I get labs monthly and review my progress/success with my renal doc. I finally found one who preaches diet change cause she has seen many patient success stories herself.
would it matter if they were a doctor? In your other comments you said that you ignored the advice of multiple doctors and took advice from a Facebook group instead.
I think they also prescribe phosphate binders I was on "Sevelamer"
I suspect this may vary in the USA depending on your insurance it was costing the NHS about £300 per bottle (about a grand for two months) - I suspect the price in the US might be a lot more
There are cool computer science problems involved: imagine person A1 wants to donate their kidney to their partner A2 but they aren't a match. Now imagine many such pairs exist (B1/B2, C1/C2, D1/D2 etc.) and you start noticing that while A1 can't donate to A2, they can donate to B2, and B1 can donate to C2, and so on! Thus the kidney chain is born. You get everyone together and have them agree that if their partner gets a kidney donation, they'll pass on the favor to someone else. All that's needed is a single purely-altruistic donor to start the fire. The longest such chain has reached over 100 people! [1]
Anyway, the surgery is laparoscopic and has an extremely low fatality rate: around 1/10,000, which is an order of magnitude lower than the all-cause mortality rate for living a single year of your 20s. The kidney is a fairly isolated organ, basically only attached to you via the renal artery/vein, the ureter (which carries urine to your bladder), and some fascia (internal connective tissue). You can see a full video of the surgery at [2] (if you're into that kind of thing). I was walking within hours of the surgery, discharged within two days, and back in the gym within 5 weeks. My life is not any different than pre-donation, and if anything goes wrong with my remaining kidney I go to the top of the donation wait-list! If you're interested, you can see more info at [3].
[0] https://en.wikipedia.org/wiki/IgA_nephropathy
[1] https://www.beckershospitalreview.com/quality/nation-s-longe...
[2] https://www.youtube.com/watch?v=x8-YhyYrMsc
[3] https://www.kidneyfund.org/kidney-disease/kidney-donation.ht...