The change of nephrology over the years...

[kristina]

From when my kidneys first failed in 1971, I consulted with uncounted nephrologists ever since...
...There was a time when I feared them a little, because they all wanted me to do as they thought I should do and certainly not as I wanted to do...
...No nephrologist was prepared at that time to work with me in a partnership to keep my kidneys going for as long as possible...
... in their opinion there was nothing that could be done,  except for me to accept dialysis...

...Mind you, I did my own thing all the same and I refused dialysis as an option because I believed that by keeping to a strict vegetarian diet could assist me...
...Unfortunately, all the nephrologists I consulted with at that time, thought that I tried something completely impossible, unscientific,
without any scientific basis whatsoever and not quite “the thing to do”...

During those years I often felt that the nephrologists I consulted with, treated me with some contempt,
because of my stubbornness about believing that my strict vegetarian diet could assist me considerably to keep off  dialysis for as long as possible...
Nephrologists at that time believed, there was nothing at all a  patient could do to “stop the rot”, once the kidney function became fragile...
... and in their opinion q person had either healthy kidneys or they had to go on dialysis and that was it, because there was nothing else...

These days the nephrologists have changed completely. They now assist me to keep my little kidney function going for as long as possible
and they even encourage me to keep my vegetarian diet, because they have realized that the instinct and “gut-feeling” of a patient is as important as medical assistance
and that many patients know their body pretty well...

I am very happy about this development in medicine and believe that it has moved into a very healthy direction
because a good partnership between a medical doctor and a patient is best to look after the best interest of the patient...

What do you think?

[Deanne]

I agree. I was only 9 when I was diagnosed in 1972. I knew nothing about kidney disease until I was in my 20s. I was young and felt "owned" by my parents, so it never occurred to me to push for information and none was provided to me. The doctor didn't talk to me - he talked to my mom. I was sure I was going to die, but was afraid to ask and no one ever told me differently. My mom got all information in adult language, not child language and she was never the communicative/motherly type. I'm sure it never occurred to her to rephrase it all in language a child could understand. I wasn't sent to a nephrologist. I saw only a general practitioner until I was in my 20s. I do remember one of my first doctors telling my mom to push protein to make up for the protein I was losing through my kidneys, and I was forced to drink water, water, and more water for a few months until they gave up on trying to force it down me. Sodium wasn't restricted, either, and as a teen, I was prescribed high doses of ibuprofen for menstrual cramps (instead of anyone doing anything to get to the source of the cramp problem - endometriosis). I remember that same doctor stating that a lot of teens had cramps and he blew it off. I ate ibuprofen like it was candy for years. I'm amazed that my kidneys lasted for 40 years after diagnosis.

My nephew was diagnosed with the same disease a few years ago, when he was 13. The first thing his doctor did was to send him to a pediatric nephrologist. He was treated properly and is in remission now. There's no sign of kidney disease for him 9 years later.

The nephrologist I have now is awesome. We talk about my lab results and what they mean. When she prescribes a medication, I know why it's being prescribed. We've talked about diet and exercise. When my labs were off before I started dialysis, she had me talk to a dietitian. She's told me several times that her goal is to have me living a normal life.

It is all much different.

[kristina]

Well done, Deanne... you seem to be a lucky survivor just like myself...
...Just imagine, my current nephrologist has even congratulated me that I have been going for over 43 years
without any dialysis despite my frail kidney function and he said that we must now "do everything well" and make sure,
that I  continue to do well in the future, to make sure that my determined struggle to keep my kidneys functioning without any dialysis
but with my vegetarian diet through all these years, was well worth it...

...That is the kind of talk that was certainly the unthinkable 43 years ago...
... and the nephrologist I am consulting with now is quite awesome and we have become a team,
who work together to keep my "two little fighters" going without dialysis... for as long as is possible...
... My nephrologist even agrees with me, that is much better for me to administer my weekly Epo-injection myself at home,
instead of exposing myself to all sorts of infectious diseases at the GP-Surgery during the autumn/winter "coughing & sneezing" season
whilst waiting for the nurse to administer "my" weekly Epo-injection at the Surgery... much safer at my home...
... Times have certainly changed a lot... and it is very much for the better...!

[amanda100wilson]

Your two stories indicate that there is no hard and fast rule (and also bear in mind that there are multiple causes of kidney failure and management will therefore vary.  On one hand, there is Kristina who stuck to a vegetarian diet as a way of preserving kidney function, and you have survived 40 plus years on dialysis.  On the other hand, there is Deanne who, through no fault of her own, had a completely different approach; lots of protein and ibuprofen. Deanne's kidneys lasted fourty years from diagnosis.  So, yes, I agree that it is sensible to do things to try to preserve kidney function, but there are obviously so many other variables that interplay here.  You need to bear in mind that some more of kidney disease are rapidly progressive, and some aren't. There is also the factor that some people do not even know that they have kidney failure until it is so far advanced tht they do not have the percent of function at diagnosis, as others do.  Mind you, I would have hoped that advances in knowledge had come a long way since the 70's, since even having a treatment to prevent death was still relatively new.  Sadly, I don't think that it has come far enough compared to many other diseases, maybe in part due to the fact that there are so many underlying disease causes.

[jeannea]

Amanda, you are right. There are so many diseases and other causes of kidney failure. Some people need dialysis right away and some people wait years. I wish there was a magical formula.

[kristina]

You are absolutely right, Amanda...
Perhaps I was just lucky, because my particular kidney disease (chronic proliferative glomerulonephritis) was responding very favourably
to my strict vegetarian diet and careful life-style in my deliberate effort to avoid any dialysis for over 43 years...
... Mind you, I have no idea when my "two little fighters" might finally "give in" and whether or not I might need dialysis
or whether or not I shall "make it" and be lucky enough to remain pre-dialysis until my transplant...
.... But I  agree with you: I don't know whether or not my strict vegetarian diet and healthy eating habits/life style might have helped me,
or whether my vegetarian diet and healthy lifestyle might have only assisted to keep me off dialysis because of to my particular kidney disease...
... or perhaps I had simply good luck over the years, or perhaps it was, that my constant vegetarian healthy diet with the same vegetarian food
every day might have helped me to have succeeded just by chance to keep me off dialysis,
because of my effort to keep my kidneys and my whole body always very calm,
without any mentionable "digestory upheavals" to upset my body might have helped... and there again, I knew from 1971 onwards, that my pre-dialysis-days
may be counted... and this knowledge enabled me to take much more care in order to give myself a fair chance ...