I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Pre-Dialysis => Topic started by: cocorenee on March 07, 2014, 04:31:32 PM
-
Hello! I recently returned from 3 months in Southeast Asia where I met a woman who cured her own blindness and put her MS in to "remission" using Chinese Medicine; primarily Chinese herbs. Has anyone here tried Chinese herbs to increase kidney function. I started googling, but all I get are links to nephs in China and I can't afford to go to China right now. I am studying Ayurveda as well, but am really interested to hear any Chinese medicine success stories or tips of where to start. Please no negative comments. Thank you!
-
*
-
There is a reputable company in the US manufacturing Chinese meds, WEI labs. They have 2 PHDs running the company and they also trained at Harvard andin Boston hospitals. Their products are useful as I have had luck with them for certain conditions . Their pain patches work well. Unfortunatly their other "meds" dont seem to work as well, at least from my experience. I tried some of their liquids on my wife for her kidneys and it never helped. Thier UTI liquid for bladder inflammation did help some.
I tied to get the company to do some double blind scientific studies on some of their products. They didnt seem interested. But they are reputable and at least have some useful products. I beleive some professional athletic teams use their patches. I used them on my knees with good success.
They probably cant help kidney disease . I wish they could . Their meds are also very expensive.
Be careful with most other Chinese meds.
-
A couple years ago I start this regiment found at Dherbs.com http://dherbs.com/news/4636/4669/Dialysis/d,ai.html#.Uxs3nD9dWSp (http://dherbs.com/news/4636/4669/Dialysis/d,ai.html#.Uxs3nD9dWSp)
Its a combination of herbs and juicing. I got lazy with cleaning the the juicer and a week turned into a month and 2 years later I'm finally starting it back up.
At the time I was making no urine, but with each treatment I was making a few drops more each day, which turned into streams, and a couple times a day. I was going through a lot still with my life, so I had to put it to the side, but I believe if I kept with it I may be ESRD free now.
I've most currently been doing a combination of herbs, diet, and ginger massage. I am going full force trying several things at once because I decided get off the transplant list, I knew it wouldn't work for me. and beside I believe healing naturally is possible.
So I've been doing the herbs from the link above.
As for diet, I'm not doing the juicing anymore, i'm doing a smoothie similar to what you see in the nutribullet infomercials. Mostly organic veggies and a little fruit to make it a little more palatable.
I still use celery juice in each smoothie because that is the best ingredient to wake up your kidney. I use fruits that are lower in potassium just so I don't get into trouble with the Neph. Like pineapple instead of Bananas.
Here's the massage I was talking about. Ginger Massage Therapy for Kidney failure: http://www.youtube.com/watch?v=ymsg0kS-0pQ (http://www.youtube.com/watch?v=ymsg0kS-0pQ)
that video seems to be a do-it-yourself version of "Micro-Chinese Medicine Osmotherapy": http://www.youtube.com/watch?v=JETVKmnkx8M (http://www.youtube.com/watch?v=JETVKmnkx8M)
If it was a sure thing I would just go to china, but that is a big investment, and who knows how long it would take, would I have to quit my job to go there?
I want to incorporate exercise and I do walk quite a bit everyday, but I can't do anything strenuous yet because I'll just get drained really fast.
I had to take a break because I caught the flu from a coworker last weekend. But I am starting it back up tonight. But I went from no urination to being able to make enough urine for me to want to go pee 2 or 3 times a day now. Everyday I see a little progress, it's small to notice, but it is progress.
I've only been doing this for 3 weeks. The weekends I actually still eat regular food. But I may go full force and totally just do the smoothies.
-
ban six, your kidneys may be 'asleep and need waking up', but for most of us, the nephrons are gone. No amount of chines herbs, medicines or smoothies, will undo the damage and restore the structure of these damaged units. Nice it that were the case, but it ain't.
-
ban six, your kidneys may be 'asleep and need waking up', but for most of us, the nephrons are gone. No amount of chines herbs, medicines or smoothies, will undo the damage and restore the structure of these damaged units. Nice it that were the case, but it ain't.
Touche!-
-
Only a damn fool would trust advice from some idiot spammer on the internet over their own nephrologist.
-
If anyone healed naturally then they would go out of business. So of course they want you to believe that.
-
Who wold go out of business and what do they want is to believe?
-
I am not negative, I am not at all negative, because I am in a pre-dialysis situation myself
...and it is so easy to cling to any hopeful idea to keep off dialysis... for as long as possible...whether it is Chinese herbs or European herbs...
or whether it is anything else...
...problem is though, there are so many different ideas of how to keep off dialysis...
....for as long as possible... with all sorts of promises etc....
... but there is no real honest way to avoid dialysis in the long run...
...and it is much better to face dialysis to really create a chance... a real chance...
and feel better as soon as our body gets used to dialysing regularly...
... because it creates a real chance for us to get feeling better soon...
-
Seriously, if "Chinese herbs" were any better at treating kidney problems than, say, "North American herbs" were, then why isn't there a lower instance of kidney problems in China?
What's happening here is that you people WANT to believe that some miracle is possible, and the scam-artists are taking advantage of your gullibility.
-
I watched a programme on tv a while ago about a woman diagnosed with cancer.
She believed if she followed a regime of juicing organic fruit and vegetables daily she would be cured.
She spent a fortune on a juicer and the organic fruit and veggies...
Yes it gave her hope (which I don't underestimate the need for) but
sadly she died a few months later.
I have four kidneys, two native ones, badly scarred and shrunk with glomerulonephritus and two transplanted ones,
which both ceased to work. I have a tiny amount of hormone production and a tiny amount of urine. If I truly believed
drinking celery and parsley smoothies everyday would improve things I would but I think it would be foolish to
believe it could reverse any of these factors ... sadly
-
Dialysis was hard when i had no control and my life was being ruined by in-centre short hours. However now I'm having a great time. Yes its a significant inconvenience at times but I'm better at my job now that i do 160hrs per month, and how many dialysis patients can rock up to a bank and ask for 1m to build a house. I have more professional success as a dialysis patient than previously and I wasn't sick until I was told to go to hospital as function was at 4%. One day at work the next in hospital with a tunnel line. Its been a long hard journey but im succeeding. Maybe the thought of not being around changes a person. Im in no hurry for a transplant as I'm exceeding world best practice so I'll be around for 30+ years regardless. Might look to get a new kidney when my daughter gets a bit older.
-
Not going to go deep into this here, so will just chime in with:
At one point in medical history, it was believed that any brain damage, was permanent, with no type of recovery.
Seems that now, with more sophisticated equipment, the bodies recovery functions continue to amaze the scientific community.
The brain creates new pathways when not severely damaged.
The heart develops new pathways, when certain veins to the heart are clogged.
Not all Chinese herbs are dangerous.
Over indulge on any herb (or food) will demand a a detrimental down period of good health.
During devastating periods of floods, earthquakes, in some counties, a product (aminophylline) was used in place of dialysis.
There are a few more goodies, so the bottom line would be:
don't give up hope,
expect a miracle,
pray as if you were going to die the next moment in time,
but live life as if you were going to live forever.
Be Well
talker
-
I prefer Live each day as if it's your last school of thought ... ;D
But pray tell what is aminophyline and how does it work?
-
I prefer Live each day as if it's your last school of thought ... ;D
But pray tell what is aminophyline and how does it work?
Not able to fully answer the questions.
The information came to me via my children , they being aware I was looking for info of this type.
Aminophylline was dated back in March of 2012, as being used on Turkish crush victims and in China, 2008, for earthquake victims.
Patent # 6998404, by GendMed. Was actually a bronchitis, lungs related drug originally, and some how was found to assist with those in need of dialysis.
Not able to verify those events or the drug for dialysis use. Info here in the US, seems all negative on it's use for dialysis.
I mention it only to keep the fires stoked in case some one, some where, finds it of value.
talker
-
Not going to go deep into this here, so will just chime in with:
At one point in medical history, it was believed that any brain damage, was permanent, with no type of recovery.
Seems that now, with more sophisticated equipment, the bodies recovery functions continue to amaze the scientific community.
The brain creates new pathways when not severely damaged.
The heart develops new pathways, when certain veins to the heart are clogged.
talker
I also draw inspiration from knowing that about heart disease & brain damage, to be quite honest.
-
I also draw inspiration from knowing that about heart disease & brain damage, to be quite honest.
Sorry if this comes across as negative. It's just how I think about this:
One of the first things my daughter's nephrologists explained to me was that nephrons, once scarred, do not heal themselves. I agree that there is a tempting analogy with all the other things I learned were non-regenerating, like brain cells. However, science still suggests that none of these things regenerate well enough to count on as a cure. Things aren't as cut and dry as once believed, but brain cells do not regenerate very much.
For certain kinds of illnesses, the best cure is to let the body heal itself, and there are some traditional cures that help (many others are placebos or harmful). That depends strongly on the body's capacity for self-repair, and sometimes that capacity is absent. Modern medicine often saves lives that were simply lost in the past.
Even the most ardent herbalist wouldn't expect to take herbs to grow back a severed fingertip. That's because something very visible has been removed and we can see that it does not grow back. It's also true despite the component cells all being very capable of regenerating. They still won't grow back into the require structure, which forms once during embryonic development. Nephrons, though microscopic and hidden from view, are also very complex structures. They might be able to recover from minor damage (not sure), but once scarred, new ones do not grow. Why? Well, nature gets a lot of things right on average, and kidney disease is infrequent enough that it somehow missed the cut for developing self-healing. To make progress, we have to go beyond what nature has given us.
Naturally, I'd be elated to find my bleak assessment above turn out to be completely wrong, but for now, I have to go with what seems to be the best scientific understanding and clinical practice.
-
I seriously doubt there is any treatment that will restore scarred tissue to its original state.
However, it may be possible for some measurable improvement of function. How? We don't know, yet.
I do believe that with proper treatment we may be able to slow, and in some cases actually stop the progression of the deterioration of the kidneys.
But we still have a lot to learn. I will agree that diet can be a major factor HOWEVER, we must always remember the old adage "All things in moderation." Over-dosing with anything, may not be a good thing. Just because herbs are organic does not mean that consumption of large amounts are good for us.
Herbal treatment should always be approached with a certain amount of caution as each of us are slightly different. What may be tolerated well by one may cause severe side-effects to another. As with some meds the beginning dose is small and has an increasing schedule so the body can acclimatize to the element.
Take Care,
Charlie B
-
I agree with Charlie, that there is still such a lot to learn about how to keep pre-dialysis for as long as possible...
... and ... what works perfectly for one person might not even be appropriate for another person...
... For example, my carefully worked-out kidney-friendly-vegetarian-diet served me extremely well for over 43 years to keep me off dialysis ...
... but that does not necessarily mean, that it is the right way forward for anyone else to keep pre-dialysis for 43 years as well ...
... Another point is, that it also could be, that during those 43 years whilst keeping myself successfully pre-dialysis ,
I also avoided to drink any alcohol throughout all those years and I also avoided to take any pain-killers (this is really true !!!)
and I made absolutely sure that I kept my kidneys cosy-warm and well protected from any draft at all times...
I even researched about the medical benefits of wearing Continental Angora-kidney-warmers and after finishing my research,
I began to wear one of those Angora-kidney-warmers directly over my kidney-region for over 43 years at all times ...
and I shall continue to always wear one of them at all times ... even though I have started dialysis on 13th December 2014 ...
... but I still believe these Angora-kidney-warmers have protected my kidneys very well in the past
and I do hope they continue to assist what is left of my kidney-function in the future as well ...
... and there is no doubt that I shall continue wearing them after my kidney-transplant...
... And for that reason I have always kept over five of these Angora-kidney-warmers to regularly wash and change them...
... and I made absolutely sure that my kidneys were always kept "snuggly" warm, protected ... and ...
... I have always avoided any draft on my kidney-region whilst being outside the house,
especially during the colder season and/or during the rainy-season ...
... and come to think about it, I don't really know whether it was any of these other points which I have just made above,
that kept my kidneys going for over 43 years and helped to slow down "my" kidney disease (Chronic Proliferative Glomerulonephritis),
so that I could delay my need for dialysis for over 43 years and my vegetarian diet during all those 43 years was just an added "icing of the cake" ?
-
Kristina
I've only just joined this site but I really find your life story and posts extremely interesting & inspiring. Wow, 43 years you've been living with CKD without reaching dialysis. You are exactly the person who I need to learn from. I don't know anything about chronic proliferative glomerulonephritis but it sounds as serious as what diabetic nephropathy is.
I was not trying to advocate for chinese herbs by any means but what I was trying to say is that maybe there are ways to do better to prolong our damaged kidneys than previously believed. I have a close family member who sustained a serious head injury many years ago in a car accident whose family was basically told that she won't live or she'll be left in a highly vegetative state. She ended up coming out of her coma recognising everything & after a long physical rehabilitation, simply returned to her normal life. The brain injury doctors told her they no longer need to see her. This real life true story does inspire me, even though it is not related to kidneys.
Your Angora kidney warmers now really intrigues me and I will look into this right sway. I do feel the cold very badly and it seems like commonsense to me to take extra measures to keep the kidneys warm. (I think the Chinese have traditionally practised this). Whenever I've had anyone offer to provide me a massage, I've instinctively asked them to apply warm hands to my kidney region.
As for diet, I am just as confused as the day I was when I was diagnosed. My nephrologist does not recommend a low protein diet because I suffer from iron deficiency anemia caused by another medical problem. I therefore desperately need the iron found in red meat. I can't go overboard of course but I do eat meat, eggs and dairy products like greek yogurt & cream. The only thing I've been told to keep to is a low sodium diet.
Kristina, thank you so much for being here. As pre-dialysis patients, we continue our search for ways to continue fighting for health.
-
Hello Athena,
Thank you for your kind thoughts and words and I do hope your diet works well for you
and provides you with many years of remaining pre-dialysis... (I keep my fingers crossed...)
... Perhaps "my" vegetarian diet and all the other kidney-friendly precautions I took over so many years,
were "only" applicable to slow down the detrioration of "my" Chronic Proliferative Glomerulonephritis...
... and I really don't know, how applicable my vegetarian diet
and all my other precautions could possibly be for any of the other kidney diseases,
because I have, from the very start, after my kidneys first failed (and recovered a little again) in 1971,
only ever concentrated in ways of how to slow down "my" particular Chronic Proliferative Glomerulophritis ...
... and to be honest, I don't even know, whether all these precautions I took did really help
to slow down the deterioration of my kidney-function, or whether I was just plain lucky...?
Over the years I have asked many doctors and nephrologists about this and they did not really have an answer either,
but they all agreed, that I was extremely lucky over all these years ... (whatever that may mean in medical terms...)
-
P.S. One of my “special tools” was - over many years - to check-up on everything I could possibly find and locate,
first in kidney-dietary-books and later on the Internet, what precisely to eat etc. to slow down "my" particular kidney disease...
... and then I always wrote down all the vegetarian fruits and foods, which were mentioned "everywhere"
to help me slow-down “my” particular kidney-disease ...
... and after having done that, I only ate the fruits and vegetables which all kidney-sites agreed upon .... (emphasis on "agreed")
This is of course a very time-consuming exercise, can become a little boring sometimes and it certainly limits
all the fruits and vegetables I can eat to a very tiny limited choice
but in “my case” it was worthwhile the bother ...
I am very happy that I could stay pre-dialysis for over 43 years, because during all those years the dialysis-treatment has gone strides
and that makes my needing dialysis right now much easier to take and with much less bother and very much kinder to my body...
... Since starting dialysis I have continued with the same vegetarian diet as before
and my blood-test have already shown, that I am still doing the right thing...
-
Hi again..love to know more about the warmth of the angora …is this like a mini fuzzy girdle around the waist and abdomen?
I had also read that that castor oil liquid, overlaid with pure unbleached flannel, with mild heat applied was supportive of the kidney. nothing can grow new nephrons or heal them but support of the lymph system is supposed to help the body overall.
I cut up some old flannel sheets, and I do NOT use an electric heat pad over my kidney, but do use my "bean sock" I have a long, fleece kittycat shaped bean or rice filled microwaveable 'sock', heat for 3 min, and lay against the PLASTIC protection sheet over over the flannel and let it rest on the kidney for 20-45 minutes.
http://www.healthbeyondhype.com/info/castor-oil-pack-instructions this is supposed to encourage the lymphatic system
also..this seems a bit funny. a Rebounder, mini trampoline helps the lymph too..bouncing gently on one 'shakes' up the lymph..when you think of how inactive most of us are, especially in office jobs this sorta makes sense? yes, no? I know That I can no longer bend over unless I have my cane or can lean on a counter or chair to pick up a dropped item.
I watched a bariatric surgeon gave the facts (long your tube video of a medical meeting) that MOST Americans walk EXACTLY 172 yards a fay..done. from bed to shower, shower to breakfast, to the car, walk around at work, drive home, walk in front door, eat dinner, and walk to the couch for TV time, then to bed. sad eh??? https://www.youtube.com/watch?v=XpyuslOwZSA
Obesity in America: Diet Drugs or Surgery?
https://www.wellbeingjournal.com/rebounding-good-for-the-lymph-system/
http://www.naturalnews.com/031159_rebounding_lymph_system.html
-
Kristina
I've only just joined this site but I really find your life story and posts extremely interesting & inspiring. Wow, 43 years you've been living with CKD without reaching dialysis. You are exactly the person who I need to learn from.
FWIW, I managed to "live with CKD" for 53 years before I had to start dialysis. and I neither adopted a total vegetarian diet (although I did have days when I did not eat meat), I didn't give up alcohol or painkillers, nor did I ever take to wearing strange garments over my kidney regions (Angora kidney warmers? Geez, add a big hat and a flouncy skirt, and you'd look just like Stevie Nicks...). So, you can choose who you would like to lean from, but in the end, if you want good, educated opinions, you need to consult professionals, not just some anonymous poster with dubious opinions on an online forum.
-
Kristina
I've only just joined this site but I really find your life story and posts extremely interesting & inspiring. Wow, 43 years you've been living with CKD without reaching dialysis. You are exactly the person who I need to learn from.
FWIW, I managed to "live with CKD" for 53 years before I had to start dialysis. and I neither adopted a total vegetarian diet (although I did have days when I did not eat meat), I didn't give up alcohol or painkillers, nor did I ever take to wearing strange garments over my kidney regions (Angora kidney warmers? Geez, add a big hat and a flouncy skirt, and you'd look just like Stevie Nicks...). So, you can choose who you would like to lean from, but in the end, if you want good, educated opinions, you need to consult professionals, not just some anonymous poster with dubious opinions on an online forum.
Alex, that is amazing to hear that you lived with CKD for 53 years. I do consult professionals all the time (I have 2 Nephs), have a physician turned naturopath/acupuncturist who has a special interest in kidney health, am about to see a renal dietician and read widely and profusely on everything relating to this subject. And let me tell you one thing - I still don't know enough, nor have any confidence about the future given the state of play with medical science right now! I am keen to hear from kidney patients about ANYTHING that they have found useful in preserving their kidney function. As my Nephrologists will freely admit at any time - they don't know enough about this disease!
-
Kristina
I've only just joined this site but I really find your life story and posts extremely interesting & inspiring. Wow, 43 years you've been living with CKD without reaching dialysis. You are exactly the person who I need to learn from.
FWIW, I managed to "live with CKD" for 53 years before I had to start dialysis. and I neither adopted a total vegetarian diet (although I did have days when I did not eat meat), I didn't give up alcohol or painkillers, nor did I ever take to wearing strange garments over my kidney regions (Angora kidney warmers? Geez, add a big hat and a flouncy skirt, and you'd look just like Stevie Nicks...). So, you can choose who you would like to lean from, but in the end, if you want good, educated opinions, you need to consult professionals, not just some anonymous poster with dubious opinions on an online forum.
Hello Alex C,
I am quite startled to read your dismissive message directed against me so very personally!
... IHD is a forum to exchange ESRF-experiences in a very civilized manner
and suddenly there appears this dismissive message from you directed against me personally ? How come ?
... If you take the time to look at some of the latest Continental/European medical nephrology-researches,
you certainly come across very interesting & encouraging medical research-results regarding a vegetarian diet in ESRF !
When consulting European/Continental nephrologists, you might also come across a recommendation to get one or two of those, as you say :
"strange garments around the kidneys" ... Why? Because they keep an even-levelled temparature and they also protect to keep-off drafts around the kidneys.
... These garments can only be bought in medically recommended/regulated Continental health shops, which are also used by medics.
BTW: These garments are of a very fine material and they are most certainly not noticeable...
You tell Athena and I quote: „So, you can choose who you would like to lean from, but in the end, if you want good, educated opinions, you need to consult professionals, not just some anonymous poster with dubious opinions on an online forum. So, you can choose who you would like to lean from, but in the end, if you want good, educated opinions, you need to consult professionals, not just some anonymous poster with dubious opinions on an online forum.”
... Startling words indeed! Your message almost appears, as if in your opinion IHD is not even needed?
...It goes without saying that I always listen very carefully what "my" nephrologist says ...
... He also overlooks my regular blood-test-results and has assured me that I am doing “all the right things” with my vegetarian diet etc.
I am also told that I should continue to do what I have been doing for many years, because it obviously suits “my” Chronic Proliferative Glomerulonephritis.
Your comments against me come over as if you wish to imply that my personal experiences with ESRF are unworthy of consideration ...
... What entitles you to write so very dismissively against me? I am amazed that you call my personal 43-year-ESRF-experiences “dubious”
and that you entitle yourself to pretentiously & presumptuously dismiss my experiences with kidney failure and Chronic Proliferative Glomerulonephritis ... ?
I would never ever dismiss anyone’s ESRF-experiences ... and I understand that on IHD we learn from each other, encourage each other,
listen to each other etc. and learn, how to survive despite ESRF... and all that in a very civilized manner ... and ... I do hope it continues like that...
Best wishes from Kristina.
-
Athena…. you can learn an enormous amount from the new resource of the internet, almost all of it in the positive. Of course only a too trusting unthinking adult would use any crazy advice they read without thought and verification.
I fully disagree that AUTHORITY is your only source of education to trust!!
:Kit n Stik;
In fact were it not for my own curiosity and research I would never have known I was untreated for High BP, and overdosing on aspirin DAILY
each day that went by my high BP was killing off kidney function due to high pressure, and the QUADRUPLE aspirin I was taking after a stroke..a 325 pill..vs the RECOMMENDED 75 gr aspirin daily. 75gr is the most safe and effective for stroke prevention, and all the extra aspirin was harming my kidney too. My urology NP just verified i should be taking lesser, 81 gr. baby aspirin, instead of 325. So even though all my Docs, in a VA clinic Ive gone to for 15 years knows I have one failing kidney…I was NOT treated correctly. and I see these people 2-3x a year, and they know I am intensely interested to keep my health. Many of the old geezer vets just shuffle along ignoring advice and scrips..they are too trusting, and uneducated to know what to ask.
I had a kindly but extremely passive MD, who was later fried front eh clinic after 12 years, I wonder why? I should have been on HBP meds after losing my let kidney to cancer, but no…I only figured it out 3 years later that 140/80 was too high for me, and I was always bouncing over 140..often 150!!…When I got the BP meds it was too low a dose. I contacted NKF.org and learned under 120/80 was ideal for me especially. I had to argue and demand the MD five me a higher dose of BPmeds as I was overweight, causing BP issues from that alone.
So ASK a lot of questions of your medical team, make them explain the why of what they are giving or doing to you.
-
Muddygurl, if you're saying that we should question and never blindly trust medical advice that we receive, I couldn't agree more! It sounds contradictory to say that but anyone who's been through the wringer with the medical profession certainly knows this plain truth. And where nephrology is concerned, they freely admiit that they don't have the answers. Not by a long shot. We're all pretty much let out to pasture and fend for ourselves with our weakened kidneys.
But having said that, I find that consulting widely with as many experienced medical brains as humanely possible, also confers extra safety and peace of mind (even if it doesn't help the wallet!). I also value hearing from experienced kidney veterans how they've managed to survive.
-
Kristina- the experienced one, and Athenea- the new one….I try to remember that most medicine came from plants and herbs people discovered on their own over thousands of years. When modern medicine mimicked these ingredients into 'chemical versions" some were much better, many adedd side effects that cost dearly.
I real scientist keeps an open mind…and observes or challenges or relooks at what has been done or written before. Mds rush to the fast answer, the groupthink to get peer acceptance, and not explore for their patient something else..( they call it "standard of care") fine..we pay our money and take our chances..most of the time it works out OK and we aren't killed off by modern meds..but…
A REAL scientist would hear about granny using an wee knitted kidney warmer and ask why?..then explore the idea and discover that raising the temp by 4 degrees actually supports nephrons, and helps them last longer under stress of workload.
So a person who chooses the 'silly old wives tale" and wrapped a long angora scarf around their belly before going off to work may be actually accomplishing something.
even the tiniest help we give our bodies can add up to it doing a better job FOR us. Ignorance at the new, and 'groupthink" abounds in our society, the scientist who doesnt go along with the party line does not get funded agin, is brought up by peers and punished or excluded. that's real smart.
I've been re-reading al the things wrong with all the studies on pushing Aspartame thru the FDA…and the continued ignoring of the significant problems with this chemical combo. But now it is in over 10,000 foods used by billions world wide, the horse it out the barn door for good. All one can do is not use it and not buy any foods with it..which is pretty much any food in a wrapper or bottle or can. (and 'soy' too..in everything…great marketing plan there)
The shop the OUTSIDE aisles of the grocery store is still the safest bet for the safer foods. plus growing your own, knowing a farm/rancher.
-
Kristina- the experienced one, and Athenea- the new one….I try to remember that most medicine came from plants and herbs people discovered on their own over thousands of years. When modern medicine mimicked these ingredients into 'chemical versions" some were much better, many adedd side effects that cost dearly.
I real scientist keeps an open mind…and observes or challenges or relooks at what has been done or written before. Mds rush to the fast answer, the groupthink to get peer acceptance, and not explore for their patient something else..( they call it "standard of care") fine..we pay our money and take our chances..most of the time it works out OK and we aren't killed off by modern meds..but…
A REAL scientist would hear about granny using an wee knitted kidney warmer and ask why?..then explore the idea and discover that raising the temp by 4 degrees actually supports nephrons, and helps them last longer under stress of workload.
So a person who chooses the 'silly old wives tale" and wrapped a long angora scarf around their belly before going off to work may be actually accomplishing something.
even the tiniest help we give our bodies can add up to it doing a better job FOR us. Ignorance at the new, and 'groupthink" abounds in our society, the scientist who doesnt go along with the party line does not get funded agin, is brought up by peers and punished or excluded. that's real smart.
I've been re-reading al the things wrong with all the studies on pushing Aspartame thru the FDA…and the continued ignoring of the significant problems with this chemical combo. But now it is in over 10,000 foods used by billions world wide, the horse it out the barn door for good. All one can do is not use it and not buy any foods with it..which is pretty much any food in a wrapper or bottle or can. (and 'soy' too..in everything…great marketing plan there)
The shop the OUTSIDE aisles of the grocery store is still the safest bet for the safer foods. plus growing your own, knowing a farm/rancher.
Thank you Muddygurl for your wise thoughts...
To be quite honest, I was informed about these "angora-kidney-protecters" by a medical Professor in the 1970's.
(That was in hospital, after my kidneys had failed and had just started to function a little again ...)
This Professor taught me then that our sensitive kidneys are usually not protected from the cold or draft
and if I keep them at an even body-temperature, I could assist to protect their function longer ...
That sounded very logical to me and as soon as I was discharged from hospital, I went to a medical health-shop
and bought two of these "angora-kidney-protectors", to make sure that I always have a clean one...
The Professor also told me that our kidneys are very sensitive to changes in temperature and season etc.
and those garments assist us to protect them ...
Best wishes from Kristina. :grouphug;
-
Kristina…see what I mean about people in the forums who have no compunction to tell you you are stupid? You will note than *some* are always negative, barking replies with the safety of anoniminity..people dont do this in person. because it is not tolerated. My answer is to not engage with or reply to such posters. Others who DEFEND their behavior are equally guilty. This is supposed to be a support site. We need to demand and expect civil discussion. Epoman wanted us to be free to share our pain, our research, but not tolerate an attack based message system. Just saying " I think you are wrong" is enough..
And Athena, yes. we MUST fend for ourselves. I did NOT say not to listen to Medical Pros. I call MDsand experts all the time..I gather info from everywhere… SOmetimes I get" WHO are you???" I say I am MuddyGurl, Private Citizen…here is what I want to know and why." Mds a re human, they make mistakes, communication goes wrong,
Here's my experience as an example" I've said my desire to heal from a major car accident before having surgery was met with shock.
I could barely lift my arms, walk or sit without pain, and they wanted to yank my kidney in a major surgery, ( we had no idea if it would be laprascopic or the "big cut" requiring WEEKS oof in hospital healing) then they'd send me home, where i lived alone…and had no worry for me once I left the OR table. sheesh
Once I learned I had kidney cancer I went to a vegetarian diet, consulted a Naturapathic doc, followed her advice, took supplements to aid in my HEALTH..not trying to grow a new kidney.. and HOW did the staff take this news I wanted to wait, and get healthy, lose weight with a good veggie diet? they said " She's trying to CURE herself with herbs!!" WTF!! I said no such thing..but this is how the MEDICAL pros took it!!
Poor communication all around. yes I took a risk to delay surgery, but they CAT scanned me regularly, blood tests, and the cancer did not grow or change, as soon as it changed slightly, 8 mo later I had the surgery, and I was fine..fully contained. I had to learn not to fear cancer, which helped enormously.
yes there are people who gulp down herbs, bay at the moon, etc and think they can cure themselves..but the medical staff never listened to ME an educated, sensible adult..treated me like any nutcase.
-
Kristina…see what I mean about people in the forums who have no compunction to tell you you are stupid? You will note than *some* are always negative, barking replies with the safety of anoniminity..people dont do this in person. because it is not tolerated. My answer is to not engage with or reply to such posters. Others who DEFEND their behavior are equally guilty. This is supposed to be a support site. We need to demand and expect civil discussion. Epoman wanted us to be free to share our pain, our research, but not tolerate an attack based message system. Just saying " I think you are wrong" is enough..
And Athena, yes. we MUST fend for ourselves. I did NOT say not to listen to Medical Pros. I call MDsand experts all the time..I gather info from everywhere… SOmetimes I get" WHO are you???" I say I am MuddyGurl, Private Citizen…here is what I want to know and why." Mds a re human, they make mistakes, communication goes wrong,
Here's my experience as an example" I've said my desire to heal from a major car accident before having surgery was met with shock.
I could barely lift my arms, walk or sit without pain, and they wanted to yank my kidney in a major surgery, ( we had no idea if it would be laprascopic or the "big cut" requiring WEEKS oof in hospital healing) then they'd send me home, where i lived alone…and had no worry for me once I left the OR table. sheesh
Once I learned I had kidney cancer I went to a vegetarian diet, consulted a Naturapathic doc, followed her advice, took supplements to aid in my HEALTH..not trying to grow a new kidney.. and HOW did the staff take this news I wanted to wait, and get healthy, lose weight with a good veggie diet? they said " She's trying to CURE herself with herbs!!" WTF!! I said no such thing..but this is how the MEDICAL pros took it!!
Poor communication all around. yes I took a risk to delay surgery, but they CAT scanned me regularly, blood tests, and the cancer did not grow or change, as soon as it changed slightly, 8 mo later I had the surgery, and I was fine..fully contained. I had to learn not to fear cancer, which helped enormously.
yes there are people who gulp down herbs, bay at the moon, etc and think they can cure themselves..but the medical staff never listened to ME an educated, sensible adult..treated me like any nutcase.
Thanks again MuddyGurl and I am very sorry what you went through :grouphug;
I agree with what you say... Perhaps I did not ignore this particular post,
because when my kidneys first failed in 1971 & recovered a little of their function again,
it took me quite a time to consult with this Professor (a heart specialist) whose medical hobby was preventative medicine
and - after having consulted with nephrologists who told me that nothing medically could be done for me to avoid dialysis -
this Professor was the first medical person who told me that something still could be done to avoid dialysis for a little longer with a vegetarian diet etc.
... I still feel very lucky that I consulted with this Professor at that time because I could avoid dialysis for another 43 years...
... Of course, it could be that my avoiding dialysis for so many years had nothing to do with my vegetarian diet and I was just lucky -
but I like to think that my vegetarian diet did play a part to avoid dialysis for so many years ...
... I first answered the above post, because I feel extremely lucky to have had a consultation with this Professor and I wanted to "spread his word"
because perhaps not everyone is lucky enough to consult with a very humanitarian medical Professor
whose medical hobby happens to be preventative medicine...
Best wishes from Kristina. :grouphug;
-
[/quote]
Thanks again MuddyGurl and I am very sorry what you went through :grouphug;
I agree with what you say... Perhaps I did not ignore this particular post,
because when my kidneys first failed in 1971 & recovered a little of their function again,
it took me quite a time to consult with this Professor (a heart specialist) whose medical hobby was preventative medicine
and - after having consulted with nephrologists who told me that nothing medically could be done for me to avoid dialysis -
this Professor was the first medical person who told me that something still could be done to avoid dialysis for a little longer with a vegetarian diet etc.
... I still feel very lucky that I consulted with this Professor at that time because I could avoid dialysis for another 43 years...
... Of course, it could be that my avoiding dialysis for so many years had nothing to do with my vegetarian diet and I was just lucky -
but I like to think that my vegetarian diet did play a part to avoid dialysis for so many years ...
... I first answered the above post, because I feel extremely lucky to have had a consultation with this Professor and I wanted to "spread his word"
because perhaps not everyone is lucky enough to consult with a very humanitarian medical Professor
whose medical hobby happens to be preventative medicine...
Best wishes from Kristina. :grouphug;
[/quote]
Kristina,
With regards to your experience with the medical professor whose hobby was preventative medicine, my second Neph is a Prof in Nephrology whose emphasis is on preventing CKD sufferers from needing dialysis. I felt so lucky to have found him late last year HOWEVER, I have to say that I really am not getting much insight or advice at all about how to avoid dialysis ... I've asked him time and time agaiin about how to best eat to avoid dialysis & he didn't really have any advice. He couldn't confirm that there was any benefit in severely restricting protein nor any benefit in avoiding animal protein altogether ... He did once upon a time did prescribe a low animal protein diet, as they all did back then, but they are consciously moving away from that now.
It seems dietary restriction is still only prescribed if there is any electrolyte imbalances. So far, my potassium, calcium and phosphorous levels are normal. I'm just wondering when you have your kidney failure in the 70s, whether you were left with any of the classic kidney imbalances that all of us struggle with? I ask because a vegetarian diet is usually one with higher levels of potassium so am just curious about your kidney experience.
I tell you Kristina, if a Prof told me to go vegetarian, I would in a heartbeat!
-
Kristina,
With regards to your experience with the medical professor whose hobby was preventative medicine, my second Neph is a Prof in Nephrology whose emphasis is on preventing CKD sufferers from needing dialysis. I felt so lucky to have found him late last year HOWEVER, I have to say that I really am not getting much insight or advice at all about how to avoid dialysis ... I've asked him time and time agaiin about how to best eat to avoid dialysis & he didn't really have any advice. He couldn't confirm that there was any benefit in severely restricting protein nor any benefit in avoiding animal protein altogether ... He did once upon a time did prescribe a low animal protein diet, as they all did back then, but they are consciously moving away from that now.
I tell you Kristina, if a Prof told me to go vegetarian, I would in a heartbeat!
That's exactly what I did ! This Professor's thoughts and his advise about eating a vegetarian diet
were the first positive up-beat medical thoughts I came across after my kidneys first failed in 1971
and I took his advise very seriously, because with my fragile kidney function I could certainly not afford to doubt or miss his thoughts ...
... and I have stuck to my vegetarian diet ever since...
Mind you, this Professor knew (after my kidney biopsy in 1972) that I suffered from Chronic Proliferative Glomerulonephritis
and I don't know whether he thought a vegetarian diet is beneficial to patients suffering from this particular kidneys-disease,
or whether he thought a vegetarian diet is generally beneficial to patients suffering from any kidney disease and/or ESRF ...
Unfortunately he never published his theories and thoughts about preventative medicine and/or a vegetarian diet
and when I recently checked-up on him on the Internet, I read, that when he died he was written about in many newspapers
and he was given almost a State-Funeral, because he had saved so many patients with his great skills as one of the best heart-surgeons...
Best wishes from Kristina :grouphug;
-
Kristina..I am SO GLAD to see you JUST didn't wait around for someone to TELL YOU constantly you needed to follow a veggie diet. ANd you didn't have today;s advantage of so much info!
There is a learned helplessness in wanting to wait until approval from higher up comes. when any logical person can see, and research for themselves ( and so easy now with every medical report on PUBMED.gov) that one can LEARN for themselves.
and as a wise person knows if you keep doing the same thing ( i.e. normal meat diet) you will get the same results…but if one takes control and actually commits to a better diet they may see results. I am firmly convinced it is not one thing, it is every tiny thing we do to support our body to support out kidneys.
In the world of LCHF diets….we were erroneously SOLD the high carb pyramid diet for 40 years…and look how that has turned out with 30% obese, 30% MORE overweight, and 50% with diabetes to come…but the FIGHT by doctors who committed to promoting the high carb diet isn't dying easy. who wants to admit they were wrong. and ENTOIRE NATION turn to agribiz foods..grains..because ofONE WRONG DOCTOR…the president mandated it, and voila… here we are.
The fact is high carb is NOT GOOD for millions, if you are healthy, etc you can eat carbs..not sugary processed packaged food as the MAIN, but some..and get away with health until older.
But for already ill, overweight the worst thing is to buy into the USDA 60% grains diet. yet there are HUGE fights by ignorant people who have no nutritional science knowledge, and insist they are fine.
OK, but those who try this food style, and IMPROVE health, lose weight, gain strength and mental clarity..they KNOW grains are bad for them. ANd a well respected Nephrologist, Dr. Jason Fung has changed the life of MANY severe diabetes and kidney sick people with a low carb, fasting diet. when most Nephs give the same old info… www.intensivedietarymanagement.com
If they waited until someone TOLD THEM to eat different…they would be the same in a year and 10 years. You can lead them to the LOW Carb plate..but you can't make them eat…right?
Keep spreading your message of how the veggie diet may have made the difference..hopefully some will listen, in time.
-
Thanks again MuddyGurl,
I agree, that our ESRF-survival consists of many tiny little things which all add up to keep our ESRF-riddled-body functioning
that little bit better and that little bit longer...
For example, my constant veggie-diet over 44 years (in 2015) kept my body always around my own minimum weight and I am sure it also helped
to keep my body going and "my two little fighters" functioning much longer ...
... It was also always very important for me to make sure I keep myself as fit as possible
and over many years I have gone for walks whenever possible... and I still keep up with it ...
... Perhaps all that has helped over the years, together with all my other precautions...
But I always made sure that I never let my health-matters "get out of hand" and over the years I added to my well-being
by studying philosophy, literature and the history of art and all that continued to give me a good balance to "my" SLE/MCTD and kidney troubles...
... Many thanks again for the links to PUBMED.gov and www.intensivedietarymanagement.com.
Best wishes and thanks again from Kristina. :grouphug;
-
Thanks again MuddyGurl,
I agree, that our ESRF-survival consists of many tiny little things which all add up to keep our ESRF-riddled-body functioning
that little bit better and that little bit longer...
For example, my constant veggie-diet over 44 years (in 2015) kept my body always around my own minimum weight and I am sure it also helped
to keep my body going and "my two little fighters" functioning much longer ...
... It was also always very important for me to make sure I keep myself as fit as possible
and over many years I have gone for walks whenever possible... and I still keep up with it ...
... Perhaps all that has helped over the years, together with all my other precautions...
But I always made sure that I never let my health-matters "get out of hand" and over the years I added to my well-being
by studying philosophy, literature and the history of art and all that continued to give me a good balance to "my" SLE/MCTD and kidney troubles...
... Many thanks again for the links to PUBMED.gov and www.intensivedietarymanagement.com.
Best wishes and thanks again from Kristina. :grouphug;
Kristina
Sorry to keep coming back to this topic, but it is an important one. I don't know whether you ever had to worry about your potassium, phosphorous, calcium levels as well as such things as renal anemia which the renal diet seems to be designed to combat, however I have to say from my perspective of being someone who still eats a normal diet, just following a grain & starch based, vegetarian diet (which you seemed to have followed) sounds so much easier and simpler to me. I assume you ate lots of fruit and vegetables in general, which most people with severe CKD generally wouldn't be able to tolerate.
As for avoiding meat as a way to preserve kidney function, I was told there is no scientific evidence that avoiding meat actually helps to preserve kidney function, and that it may cause more harm than good with lowered albumin levels as well as worsening anemia. Before CKD, I actually followed a vegetarian diet for a few years but developed iron deficiency anemia & rather than eat massive amounts of tofu to counteract this, I realised that the doctors were right about women of childbearing age needing enough iron through red meat. So I gave up vegetarianism.
-
Hello Athena,
Fortunately I had no problems with potassium, phosphorous, calcium levels etc. and my blood-tests have been perfectly alright so far
(touch wood it continues like that...!)
I also don’t eat lots of fruits or vegetables at once and my food-portions have always been rather small and varied.
...I was never told that a vegetarian diet would preserve my kidney function...
But I was assured that an easy digestible vegetarian diet would assist my body to cope a little easier despite my fragile kidney function...
... The point of an easy digestible veggie-diet in my case is really to avoid any aggravation to my body with “heavy” food...
I was also told by this Professor that it is important for me to keep my body as calm as possible with easy digestible food,
in order to give my body and my fragile kidney function a better chance to cope ...
I also avoid any food containing Soya because of my allergies and I also have always been allergic to garlic...
I do hope this information could assist a little and if you have further questions please feel free to ask...
Best wishes from Kristina. :grouphug;
-
As for avoiding meat as a way to preserve kidney function, I was told there is no scientific evidence that avoiding meat actually helps to preserve kidney function, and that it may cause more harm than good with lowered albumin levels as well as worsening anemia. Before CKD, I actually followed a vegetarian diet for a few years but developed iron deficiency anemia & rather than eat massive amounts of tofu to counteract this, I realised that the doctors were right about women of childbearing age needing enough iron through red meat. So I gave up vegetarianism.
I was diagnosed at 9 years old and reached ESRD at 49. I never followed a special diet, other than attempts to reduce sodium in adulthood. As a child, I was encouraged to eat a high protein diet. I think progression to ESRD and any effects of diet modifications, or anything else for that matter, are patient-specific. I was even prescribed high doses of ibuprofen as a teenager with no apparent affect on my kidney function, and my nephrologist has had me on a regular dose for many years, following a DVT about 15 years ago. What might make a difference for one patient might not matter for another.
I think this is why there are so many varying reports from the medical community. One professional might say to restrict protein because that person is following a patient(s) for whom it seems to make a difference. For another professional, maybe the same dietary restrictions don't show a difference in progression, just because the patient(s) react differently to identical dietary conditions.
-
Hello Athena,
Fortunately I had no problems with potassium, phosphorous, calcium levels etc. and my blood-tests have been perfectly alright so far
(touch wood it continues like that...!)
I also don’t eat lots of fruits or vegetables at once and my food-portions have always been rather small and varied.
...I was never told that a vegetarian diet would preserve my kidney function...
But I was assured that an easy digestible vegetarian diet would assist my body to cope a little easier despite my fragile kidney function...
... The point of an easy digestible veggie-diet in my case is really to avoid any aggravation to my body with “heavy” food...
I was also told by this Professor that it is important for me to keep my body as calm as possible with easy digestible food,
in order to give my body and my fragile kidney function a better chance to cope ...
I also avoid any food containing Soya because of my allergies and I also have always been allergic to garlic...
I do hope this information could assist a little and if you have further questions please feel free to ask...
Best wishes from Kristina. :grouphug;
Thanks again Kristina. You were/are lucky indeed to not have had to worry too much about those electrolyte imbalances ... These imbalances are so much about what kidney patients seem to battle with. It just goes to show how individual we all are.
When you described eating easily digestible foods that keep you calm & avoiding heavy foods, it reminded me of times in the past when I was ill and needed to eat this way as well. They were times of cold & flu with digestive complaints, when there was no possibility of eating fried foods or heavy things like meat and eggs due to a natural revulsion caused by a threat of nausea. It would seem then that being in a fragile state of kidney function may replicate that same vulnerable feeling? I find this very interesting. It doesn't sound like you've battled with much nausea or reactions as a result of your way of eating though.
Keep up the good work!
-
Thanks again Athena for your kind understanding of the logic behind my eating every day an easy digestible vegetarian diet in "my" ESRF.
Having started with dialysis last December, I still continue with the same vegetarian diet and - according to my regular blood-test-results - it still serves me well...
... When we are in ESRF, our body is chronically very fragile and needs special care and by eating an easy digestible (vegetarian) diet I feel that I can assist my body quite a lot ...
Being in ESRF is a similar scenario like the one you described when we are going through a cold or flu, the difference is,
that in ESRF our body is chronically very fragile and the situation is much more serious...
... and it serves us well to accommodate that situation to our best knowledge with whatever suits our frail body best......
You are right, I never had to battle with nausea and/or bad reactions (touch wood it continues like that!) and perhaps I am lucky there,
or perhaps it is due to my diet all along...? :grouphug;
Best wishes and good luck from Kristina.
Take care.
P.S. Before I forget to mention it:
My vegetarian diet has always kept me very slim through all those years
and my regular walks have kept my body over many years as fit as is possible in ESRF and perhaps that has helped ...
-
I'd say the ginger massage therapy is utterly worthless, but there are several peer-reviewed studies that suggest the oral consumption of ginger--say 500 mg/day--does have renal-protective properties.