Quote from: Athena on February 05, 2015, 05:45:08 AMKristinaI'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.
KristinaI'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.
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…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. sheeshOnce 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,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!
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.
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.
I Hate Dialysis Message Board
I Hate Dialysis Message Board
Author
