I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: kristina on January 02, 2012, 06:18:06 AM
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Yajokha recently described her recovery from Dialysis and
I have thought about this remarkable event.
My own history of recovering from complete kidney failure in 1971 (uraemia & coma) and my current survival in ESRF,
though I have never had any Dialysis, may have a similar reasoning to yajokha’s recovery.
The only theory I can come up with which might fit yajokha’s case and mine is this,
for example, a patient who has just been put on Dialysis and still has some kidney function:
the water being expelled by the body can take two roots:
One route is through the Dialysis and the other route naturally through the kidneys.
If at this point the kidneys are discarded and left alone so the Dialysis takes over,
the kidneys, having no function, are considered by the body to be useless and they are left to “wither away”,
and gradually they reach a point where it is impossible to regain any kidney-function.
The Dialysis then takes over completely.
But, at this crucial point when Dialysis is introduced and some kidney-function still exists,
if the kidneys then receive stimulation on a very regular repetitive basis
the kidneys might keep alive processing “water”.
The kidneys, the body, will not “think” the kidneys have become superfluous
even though Dialysis has been introduced; so at this point both processes work together.
This situation allows the body, the kidneys, to “decide” if the kidneys have the strengths to recover or not.
If the strengths is there and the kidneys begin to work better and kidney-function improves,
then at the right point Dialysis might be stopped.
As for myself (I am not on Dialysis and never have been on Dialysis
& my kidney function has been “stable” at around 10 - 12.3 % for a very long time)
I might be keeping my kidneys alive through the stimulation provided by diuretic stimulants (Asparagus) in my diet.
My kidneys “have not yet decided” which way they are going to go,
unless “they have decided” to remain at a level of around 10 - 12.3 %.
This theory includes my taking in a generous amount of liquids each day,
because the diuretic-process of stimulation must be accompanied by enough water-intake
to satisfy the “output” created by the diuretic.
This is the only way that I can possibly explain what appears like an unusual phenomenon of kidney-recovery
whether on Dialysis or not. What do you think ?
It would be also interesting to know what nephrologists think of this ?
Thanks from Kristina.
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I know that that wouldn't have worked for me. When my kidneys officially kicked the bucket, I was still peeing at a pretty good rate, but it wasn't "productive pee". My GFR was slipping like there was no tomorrow. So, even though I was peeing, I was pretty much peeing water, while toxins were building up in my system. I went from 13% function in March to 6% in April. I ended up feeling better once I started D, and once my anemia was under control, I felt incredible! I was lucky in that D didn't make me feel sick and crappy, it actually made me feel better. I am now transplanted, and my anemia is back, so waiting for that to be resolved so I can feel incredible again!
KarenInWA
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The same was true for Carl. His urine output never decreased. But before dialysis he was feeling lousy. It had been a gradual decline, so he didn't realize how bad he was feeling until he started dialysis and felt years younger!
He did not become anemic again after transplant, though. :2thumbsup;
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Sorry, KarenInWA and Willowtreewren,
I thought I made quite clear the point I was making.
The meaning of my post is to find out if people when they are being put on Dialysis
are also given diuretics regularly to keep their kidneys working?
And, to see if this had some beneficial effect ?
Thanks from Kristina.
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The same was true for Carl. His urine output never decreased.
Same here. Diuretics would not have helped me in the least, I was constantly having to urinate.
I don't think there is any formula to follow to be able to get off dialysis, some people are just lucky that way. As Rerun pointed out in another thread, most people follow the diet and do whatever their doctor says and they do not come off dialysis. I remember the member who went by Maker coming off dialysis (and there was loads of suspicion that she just had an incredibly sleazy nephrologist who knew perfectly well that she didn't need dialysis anymore). I think it was Adam W who also came off dialysis for about 6 months. I also remember reading about one of the first transplant patients, and her transplant failed pretty quickly but then her kidneys decided to rebound and she lived another 8 years or so. Something like that.
I was around 12-15% function for years. It is really not that unusual.
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Kristina, I just did a Bing search of "residual renal function diuretic" and came up with loads of results. I haven't had the time to either read through them myself or post the links, but do the search and see what information you get. I'll read it all myself when I get more time. Let us know what you find out and what your thoughts are.
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Well, I'd like to *think* my renal function will return, but I don't think it will, even though I pee. And, I pee lots. I function at 12 per cent kidney function.
I could never figure out nor understand in the beginning of my dialysis days that even though I still pee, I need dialysis. I never understood it until someone told me, they aren't flushing 'out' properly even though I still produce urine.
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Different diuretics work on different parts of the nephrons. Giving diuretics will not reverse scarring of the nephrons. Scarring is permanent. Inflammatory processes which have not resulted in scarring are reversible which is why those with acute renal failure can regain function.
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I don't think anyone "recovers" or "doesn't recover". It's all a function of the disease you have. There are so many reasons people are on dialysis. When I was diagnosed my function was bad but not bad enough yet for dialysis. (medullary cystic kidney disease) It was a high throughput disease. I was thirsty and drank 9 quarts of water a day and of course I peed a lot. I took diuretics and other medicines and followed a low protein diet. I managed to not need my transplant for 6 years. But that was just the progression of my disease in my body.
I'm glad you're still doing ok Kristina but there is very little most of us can do to fix things. I belive my doctors did all they could to help me stay healthy. But genetics is a funny thing.
I guess this subject kind of pushes my buttons. I don't want to have anyone here blaming themselves for being stuck on dialysis. I don't want you to blame yourself if some day unfortunately your diet doesn't work any more.
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very interesting theory. I think it could be a possibility but only on a case by case basis.
I started PD over a month ago and don't have any fluid restrictions because I am peeing lots. So now I try to drink about 8 cups a day just to keep my urine going. I'm interested to see how this method will work for you.
Caffeine is also a diuretic if you want more ideas.
Has anyone read about the guy who "cured himself" from kidney failure by bathing in 1 tsp of vinegar every day for 9 months??
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Has anyone read about the guy who "cured himself" from kidney failure by bathing in 1 tsp of vinegar every day for 9 months??
I don't know about cure.. but add enough vinegar and he could be pickled.. *LOL*
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Thank you all for your kind replies.
It certainly is not as straight forward as one would hope.
Once again it has given me more to think about and I really appreciate your thoughts,
which I can see come from long experience and lots of thinking.
It would appear, as has been said before,
that there are many different diseases of the kidneys
which may react in different ways
according to the individual and their genetics.
And therefore each of us must see what may help us
from our shared experiences and ideas.
It sure is complicated.
Thanks very much again for your thoughts.
Kind regards from Kristina.
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A tiny tiny nitpick (sorry, but it's been driving me a bit nuts)... but you don't recover from "dialysis" - dialysis is not the disease - it's a treatment option :) As others have said we're more talking about a recovery of renal function or perhaps an improvement of renal function.
phew I'm so glad I got that off my chest !! :rofl;
I'll go back to my pedantic corner now. It's safe here and very square :)
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Yeah, Richard, I was thinking the same thing.. *L* Same as those who say they can cure kidney failure. I'd say once you were into failure, it's pretty hard to cure. I had this one guy on twitter once, who tried to tell me that he could reverse my kidney failure with diet. I thought that was hilarious, as I'm sure that my kidneys are nothing more than huge blobs of scar tissue by now, all 4 of them probably are.
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Of course the long time IHDers could never forget the "Sauna Cure" guy :) :rofl;
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Of course the long time IHDers could never forget the "Sauna Cure" guy :) :rofl;
Oh wow. I don't think I even want to know.. *LOL*
Well, it would get all the fluid out, if you didn't pass out in the process.....
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I remember the " sauna cure guy". He was really intense. What a crock.
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Thanks Richard, perhaps my wording was not perfect.
Of course, I wondered if there is a possibility for a recovery of the renal function...
By the way: when my kidneys first failed in 1971 I was being put on a diuretic,
but the water retention was still very bad and I assisted myself by taking my own “Kneipp-bed-saunas”.
(I was laying in bed, having 5 hot water-bottles placed in strategic places underneath a damp sheet
into which I was wrapped: i.e. one water-bottle under each knee, one on the stomach, and one each side of the body.
The water-bottles must not be too hot because of the skin...).
I then was completely wrapped-up to the neck and started to sweat after a while and then I took a shower.
This process was very messy and tiring, but it was a recommended “bed-sauna”, did not cost me any money
and was extremely kind to my body. (I was much too weak for a real sauna and it was not recommended).
I feel this helped my process of recovery at the time.
I have tried it again after my diagnosis of ESRF in August 2006,
but this time, my body did not like it and it did not work at all.
I have also written to many kidney-associations
in countries like Finland, Sweden, Norway, Germany and Russia
to find out whether or not sauna assists patients in kidney-failure,
but to my astonishment I was informed that there has never been any research done
whether or not it has any positive effect.
Thanks from Kristina.
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Jadey did you read about that in the Onion? LOL I don't think one tsp of vinegar would get anyone clean much less cure them of kidney disease. :rofl;
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Jadey did you read about that in the Onion? LOL I don't think one tsp of vinegar would get anyone clean much less cure them of kidney disease. :rofl;
Oh, that is a hoot!
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Jadey did you read about that in the Onion? LOL I don't think one tsp of vinegar would get anyone clean much less cure them of kidney disease. :rofl;
Oh, that is a hoot!
lol if you guys don't believe me... here it is!
http://www.kidneyrecovery.net/myopinion.html
It is basically some guy's personal website
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It looks more like someone trying to sell a book, trying to make a buck by raising the hopes of the uninformed
A few months ago, I peed for the first time in almost 4 years, and it wasn't just a little drop or two, I actually wet myself. I made a joke about it being the beginning of my miraculous recovery, but I knew that wasn't what was going on. It genuinely scared me. No one has ever been able to tell me what happened, and it hasn't happened again.
I know that my kidneys are genuinely dead. There's no regeneration going to happen to them. Those of us who make a point of informing ourselves (and a good many of us are here. It makes me happy to be among so many informed people. *G*) know that once they're gone, they're gone. This guy is akin to a snake oil salesman. I've seen sites like that one before.
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I remember visiting that site. The gentleman had kidney failure from IgA nephropathy. It's an autoimmune disease that sometimes goes into remission. And as others here have mentioned, there are people who may end up on dialysis for several months and still recover (it is VERY rare) I believe the man is sincere in his desire to help because he truly believes it might be possible to find a way to heal kidney failure. But without knowing why and how he ended up coming off of dialysis, it's not possible to say what might have helped.
When the kidneys fail, they often put out more urine because: one of the kidney's jobs is to conserve water when you don't have enough, and get rid of it when you have too much. It conserves water by "concentrating" the urine. When it can't properly conserve the water ("pull" it back into the body from the kidney so to speak) it will just let the fluid dump into the bladder and out.
You find you need to pee more often (and that sensation is increased by the protein in the urine, which your kidneys are also failing to keep in your bloodstream. Over time, the fluid output will decrease as that final function also fails (but at least then you are not losing protein anymore!)
With all the different causes of kidney failure, and all the different functions of the kidney - the progress of failure is very different from one person to another. And there are some causes that may progress to a certain point and then stop.
I am a realist. But I also believe in miracles. And sometimes i think that if you believe that something will work, it will work. But you've got to believe it so completely that no doubt enters your mind, and continue to believe it no matter what might dissuade you. Doesn't anyone but Jesus walk in such faith?
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Thank you, fearless for your thoughts, they are very much appreciated.
It is interesting that this gentleman had kidney failure because of an immune disease IgA-nephropathy.
I also suffer from Lupus/MCTD and chronic proliferative Glomerulonephritis and I believe
that my current kidney failure was induced like my first kidney failure by a Lupus-MCTD-flare-up,
and I am hoping, that if and when the flare-up goes into remission,
my kidneys might have a second chance to pick-up again.
It is true that with all the different causes of kidney-failure
and all the different functions of the kidneys
the progress of failure can be different from one person to another.
What may make a difference though is a positive realistic optimistic attitude
because this provides the stimulus to carry through
what is necessary to give one the very best chance of surviving
and possibly getting better.
Thanks again from Kristina.
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you're welcome Kristina!
It's true that a positive and optimistic attitude would always help a person to survive and get better. And fortunately for those of us who have total kidney failure, we have dialysis to allow us to survive. And dialysis requires a positive optimistic attitude too! (if you're going to carry on with a joyful life)
cheers and good fortune to you!
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you're welcome Kristina!
It's true that a positive and optimistic attitude would always help a person to survive and get better. And fortunately for those of us who have total kidney failure, we have dialysis to allow us to survive. And dialysis requires a positive optimistic attitude too! (if you're going to carry on with a joyful life)
cheers and good fortune to you!
I am a huge believer in this! I was more depressed for the couple of years *before* dialysis than I was when I was *on* dialysis! Once I slipped into stage 4, I was pretty depressed. I was afraid of D, and of what it might do to me. Once I got there, I emphatically told myself "I am NOT going to let this win!!!" and it didn't! Granted, I was only on it for 7 months, as I was lucky to receive a live donor tx from a very kind and generous relative. While I was on D, I continued to work FT, continued to go see musicals (not that that is an everyday thing) did the occassional day trip, went out to dinner etc etc. One day I like to tell the nurses, etc about was the day I got up early to do 3 hrs of D (did 4.5 the prev 2 days before that, to make up the time) then hopped into my car to make the 30-mile drive to the airport in morning traffic (in Seattle - ugh!), stand impatiently in line at the ticket counter and TSA-assault, walk real fast to the gate, made it in time (yay!!) to fly to Las Vegas for the IHD meet. Didn't go to bed until midnight or 1am. Had a blast the whole weekend!! As much as it sucks, dialysis enabled me to do this. I was one of the lucky ones. I did in-center hemo, and I felt pretty good, considering.
KarenInWA
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Thanks again for your thoughts, fearless and KarenInWa.
It is true that the thought of Dialysis is really scary for pre-Dialysis-people like me,
and it hardens my resolve to ward-off Dialysis for as long as possible.
If I have to have Dialysis, no doubt the shock will be significant
but I do hope my positive attitude will get me over the shock
and help me to survive and deal on a day-to-day-basis with this life-giving support.
Thanks again from Kristina.
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kristina, this may be a dumb question, but why do you feel the need to put off dialysis? I see many predialysis people wanting to put it off as long as possible, and some have put it off longer than their doctor thinks they should. I wasn't really given a choice, but I do remember what I felt like just before I started dialysis this last time. I was depressed because my kidney only lasted 3 years, I was angry because a doctor and a social worker together, and to my face, told me that they believed that I had deliberately sabotaged my kidney as a means to get attention, and I generally felt like crap. Once I was on dialysis for a month or so, at least the feeling like crap and some of the depression was gone.
I have a friend on facebook who lost his kidney about a year after I did, and he put off dialysis almost 2 years. He felt awful, but refused to start dialysis. He now has other issues that make him ineligible for another transplant. I can't help but wonder, if he had've started dialysis earlier, if he may have prevented some of those other issues.
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I agreewith you, Riki. I was about 12% when my doc started me because I was getting symptoms, severe cramp etc. ( he had to authorize it with Medicare). i was so relieved because within a week or so I felt so much better. I know that Haemodoc has said that it's good to delay to preserve residual renal function as long as possible, and I agree with that view, but that is possible with either extended HD or PD which are much more gentle regimes with respect to fluid removal. Fear of the unknown is usually worse than the reality.
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My kidneys have been failing for years, with gradually declining function, until one Monday in October 2010, I just stopped urinating. Bammo! Nothing. By the end of the week I was in the hospital getting fitted out with a permacath and on my first dialysis session. Went in-center for the next eight months, doing well and feeling fine. Function popped back up to 34% and I went off the Big-D last July. No transplant (I wasn't eligible.)
We're not sure why my kidneys recovered, but I am grateful both for dialysis and to be off, and have worked hard to stay off.
Good things don't generally happen to me, healthwise, but this was. Hopefully, it happens to a lot more people.
gary
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Thank you, KarenInWA, Amanda100wilson, GraphicBass and Riki for your thoughts, they are very much appreciated
and thank you, Gary (GraphicBass) for your comments. I wish you good luck and I hope your kidneys continue to function !
What are you doing to stay off “D”? .
Riki, your question is not dumb at all !
The reason why I fight to keep pre-Dialysis for as long as possible is due to an unfortunate chain-reaction:
1) I live in London & have been left for some years without any NHS-doctor/specialist to go to.
I have no NHS-doctor & no NHS-specialist to go to in my ESRF & I have to save-up money & pay for every blood-test.
I suffer from Lupus/SLE/MCTD & chronic proliferative glomerulonephritis.
Before my ESRF-diagnosis I was seeing a top-NHS-doctor in London for many years :
He took a blood-test every 3 months to check my kidney-function
because my kidney-function remained fragile since they first failed in 1971.
He “did not notice” the raise of my Creatinine & Urea & he failed to notice I was in ESRF.
My ESRF was only diagnosed when I went to Accident and Emergency (A&E) in August 2006
when I was informed I had 6 months to go ‘till Dialysis.
I have never had any medical talk/introduction about different methods of Dialysis,
I was not given a ESRF-diet-plan, saw no social-worker, had no NHS-medical help, saw no NHS-doctor,
no NHS-specialist and I was not evaluated and/or put on the transplant-list either.
I have not had the good luck of coming across a reliable/dependable NHS-doctor with medical integrity
and that is why I have suffered in the past cerebral haemorrhages, chron. osteomyelitis, a severe stroke and now ESRF.
The complaints-manager of my Health Authority (PCT) told me on the phone that my health-history is entirely my own fault
because in order to receive any NHS-treatment one has to have a private relationship with one’s NHS-doctor.
This complaints manager also told me that the NHS comes at a price. He went into details about it
and mentioned two Royals and some female MP’s as examples...
What he told me was confirmed by a PALS-manager (PALS=NHS-patient-assistance) who said the same.
There is no authority, no medical Ombudsman, no MP, no solicitor, no law and no pressure-group to assist me in my dilemma...
A letter from the medical adviser at my local Health Authority informed me on 11th April 2005
that no doctor/specialist can be found for me in the UK...
2) I hope my current kidney-failure is due to an untreated Lupus/MCTD-flare-up
and I hope this flare-up might stop in time & give my kidneys a chance
to get better again as they did in 1971.
3) I don’t have any ESRF symptoms now and my kidneys have been functioning 10 – 12.3 %
for almost three years and I hope I might have another chance...
4) I do hope my kidneys function long enough for me to have a chance and sort out the mess I am in...
...I am knocking on many doors and hopefully a door opens soon...hopefully I have a chance
to move to another country & receive medical treatment and/or medical assistance in my ESRF...
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Dear kristina, I am stunned by what you've written about your history of neglect and malpractice at the hands of the very ones who are supposed to help you. No wonder you're looking into alternative therapies...I have nothing practical to offer, but I wish you all the best on your journey.
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kristina, I too would like to say that I'm hoping dearly that some help will come your way. Your story is infuriating. And, as Traveller1947 said, explains your search for anything that will help and won't involve the standard medical care that has selfishly eluded you. You are a strong person. Please let us know how things are going as you go forward. It's not right that you should have to struggle so hard to get care when you're not well. I'm pulling for you.
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Thank you, Traveller1947 and fearless for your touching thoughts.
I was quite shaken when the complaints manager of my local NHS-health-authority (PCT) told me
I would have had a “much better” NHS-medical service if I had “entered into a private relationship”
with any of the NHS-doctors I had been registered with.
His remark made me wonder what the National Health Service (NHS) is all about ?
I then started to investigate and went through all the complaints-procedures up to the medical NHS-Ombudsman.
(They were by now aware that I was in ESRF with no NHS-doctor to go to for medical help...)
It shook me when the medical NHS-Ombudsman found I have nothing to complain about...
The medical NHS-Ombudsman office advertises itself very loud and clear as an independent body,
but of course, that is not true because they are funded by the Government...
...and they are bound by Government contracts and strict procedures...
The office of the medical NHS-Ombudsman is carefully watched by "Whitehall Government Mandarins"
who have their firm hands gathered around the NHS-Ombudsman’s neck
ready to apply persuasive pressure if necessary...hardly what I would call an independent office...
I then asked the British Medical Association (BMA) for an investigation because I wondered
if all those NHS-doctors I was once registered with
were actually professional doctors with a medical degree ?
When the BMA refused to investigate my case I realized it was all too late.
I feel very lucky that I am still alive...
Thanks for your thoughts from Kristina.
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You seem to think that there is some sinister connotation from the comment, which I don't. Maybe the comment was purely intended that you should be a private patient rather than as an NHS patient. Doctors in the NHS do have a finite time for each patient, wrong maybe, but that is as it is. As a private patient they would give youmore time.
Maybe if you stop looking for the fabled 'humanitarian' doctor, and simply get what you need from a consultation, egregular lab. Work then maybe you will find a doctor. You may be on a plateau now with your function, but that can change without warning. Should you require emergency dialysis, you will be allocated a nehrologist at tha time, but it would be better to get established with a GP and nephrologist now before the event. By law, you have to be able to get an access to a GP, but if you have a lot of 'previous baggage' with your encounters with GPs your opportunity to choosemay be limited.
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Thanks Amanda for your thoughts.
...It is true; I do take risks by not fighting any longer for my “right to receive an NHS-health-service in my ESRF” ,
especially with my pre-Dialysis kidneys function of 10 – 12.3 %...
... but...there also seems to be a stark contrast between the computer-reality and my actual reality :
...on IHD and on my computer-research I come across NHS-patients who say they had good luck with the NHS,
but in my neighbourhood & my district I have spoken to & come across many other NHS-victims...
...and I have been told by many of them that they were being misused for medical experiments & medical research,
instead of being given a medical treatment for their ailments...
...We must also not forget how vitally important it is to keep our dignity & self-respect despite our ESRF...
That is why I took the letter (11th April 2005) from the medical adviser of my local health-authority very seriously,
because he states very clearly in his letter that no doctor can be found for me in the UK...
This letter & my own unfortunate health-record (cerebral haemorrhages, chron. osteomyelitis, a severe stroke and now ESRF)
point out to me clearly that the National Health Service (NHS) is being used for medical experiments & medical research,
but there is no NHS-health-service available for me in my ESRF.
With all these points in mind and my hope to survive, I shall continue to knock on many doors and hopefully one door opens soon...
...That brings me back to my original thought about Yajokha’s remarkable recovery with the help of diuretics
and her not needing Dialysis any longer...
I am wondering what else can be done to keep pre-Dialysis-kidneys functioning for as long as possible ?
Thanks again from Kristina.
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kristina,
a pre-dialysis diet might help (some stave off dialysis by severely restricting protein, but need special food and nutrients to do so without endangering their health) But for anything more complicated than that, you'd really need a doctor to be involved: blood pressure meds, steroids (depending on the cause of failure), etc.
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Thanks again, fearless.
With the help of the Internet and IHD I have found a balanced vegetarian diet which is very kidney-friendly.
I weighed all the food to calculate their potassium content according to my own weight
and I also took into account the butter and carbohydrate content and I bake my own salt-less bread.
I also monitor my blood pressure regularly and I don’t take any risks with my diet.
At first this was a little daunting, but it was well worth the effort and the result is my current diet.
I also take – because of my sensitivity – children’s supplements,
and I drink each day the same amount of liquid and weigh myself every morning to check-up
whether water-retention might become an issue and I take regular little walks.
I also keep a positive attitude and I hope this plan keeps me going.
Thanks again from Kristina.
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i hope you go on forever without dialysis
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Granted, I was only on it for 7 months, as I was lucky to receive a live donor tx from a very kind and generous relative.
Karen, when you started D, did you already suspect that you wouldn't be on it for very long? Did you already pretty much know you'd get a tx soon?
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Karen, when you started D, did you already suspect that you wouldn't be on it for very long? Did you already pretty much know you'd get a tx soon?
MM, I didn't know for sure if I would be getting one or not. I had originally had a neighbor friend step up to donate. She went to the initial appointment, and she told me about it. Then she never talked about it again. I never wanted to ask her anything, because it just didn't feel right to. Then, Lynn emailed me her offer. I didn't put too much thought into it, because I felt if I did, I would have jinxed it. However, in the back of my mind, I started to think that yeah, this is going to happen! Granted, you still don't know if it's going to work out or not until you get the official word, so you have to be careful. Don't get too used to the idea, but just know that it's back there, and is a work in progress. I truly am very blessed.
If the whole thing didn't work out, I would have been disappointed, for sure. I didn't feel comfortable asking anyone for a kidney, and would have left that up to those who know my situation to step up and offer. To me, that is when it truly is a gift, (for live donor) when it is offered out of the blue. I have thought that for a while now.
KarenInWA
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Karen, did it make it easier for you to emotionally/psychologically cope with starting dialysis knowing that you had a possible living donor, even if it was a "work in progress"?
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Karen, did it make it easier for you to emotionally/psychologically cope with starting dialysis knowing that you had a possible living donor, even if it was a "work in progress"?
Yes, I think so. Although, the one thing I was happy about with being on D was the fact that I could eat protein again. I hate limiting things like that. Like you, the whole pre-D diet really pissed me off. So did the D diet, which I admit I didn't follow very closely. Now, I have freedom again! And, since I never liked sushi or raw meat or raw eggs, I'm not missing out on much!
KarenInWA
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Yes, I prefer food that has met with fire...
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And now I'm doing PD I have to up my protein intake. YUK! We rarely had meat/fish more than three times a week before the kidney ogre struck. The best part of my pre-PD diet was restricting protein. Fish is OK, but meat just sits on the plate looking at me.
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i hope you go on forever without dialysis
HEAR HEAR!
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Thanks again for your kind replies.
Karen, I do hope your transplant lasts a long time and MooseMom, I do hope
you stay pre-Dialysis much, much longer and good luck, Mary.
Thanks again, fearless for your wonderful lovely wishes and you are quite right
with your sentiments about being fearless.
Being fearless puts one in a state of calmness which is absolutely necessary
to weigh-up one’s situation correctly and make the best judgements.
Thanks Natalya for supporting the kind sentiments of fearless.
I am very touched and thank you all very much.
Mind you, I am a realist and I know that my “two little fighters”
might get tired & exhausted one day,
but I do hope they keep on going until I am sorted out.
Thanks again and kind regards from Kristina.
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Kristina, forgive me if you have answered this elsewhere and I've missed it, but what is your current status? Do you see a consultant nephrologist at all these days? A GP? Do you get regular labwork done to keep tabs on such things as K, phos and anemia status?
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Thanks, MooseMom,
Unfortunately I don’t have any NHS-consultant and no NHS-GP to go to, and, as I have mentioning before,
I was informed on 11th April 2005 by the medical adviser of my local NHS-health authority (PCT)
that no doctor can be found for me in the UK. The last time I saw an NHS-GP was many years ago
when I was told I should not bother them anymore. They also told me
they could not send me to an NHS-consultant because no consultant could be found.
I then tried to register with another NHS-GP in my district,
but they all refused to let me register with them and I cannot afford a private doctor.
NHS-doctors are being paid for every person who is registered with them.
The more people they have registered with them, the greater their income...
Many NHS-GP's have thousands of registered NHS-patients and they become very rich...
NHS-doctors want healthy people to be registered with them because healthy people don’t need health care.
Many NHS-patients who suffer from a chronic disease and need regular medical care
are not given a chance to receive NHS-health care.
There is no office in England to check the quality of NHS-medical care provided by NHS-doctors.
That is why I have to save-up money for my regular blood tests to check-up
my Creatinine, Urea, Potassium and Sodium
and I always decipher my blood-tests with the help of the Internet.
I also have to save-up regularly to pay for a private dentist
and I also have to save-up money to have once in a while a complete blood test.
Kristina.
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Kristina, I remember your history and your sad story all too well. I had hoped that perhaps things had changed for you and wanted to hear about your most current arrangement.
To whom do you go for your blood tests? Do you have a specific lab or hospital or clinic who you can pay privately?
When was the last time you tried to register with a GP? If it was more than, say, 3 years ago, do you think you could try again? Would you want to make the effort, or are you so fed up with the lot of them that you don't want to bother (I wouldn't blame you).
I just hate the idea of you having to be your own doctor. You have enough to contend with as it is.
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Kristina, I never had any problems registering with a GP.
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Kristina, I never had any problems registering with a GP.
Gosh, Amanda, that was very lucky, especially in your ESRF !
...NHS-GP’s are allocated with a certain amount of money for every registered NHS-patient
and it is not checked-up how an NHS-GP spends the allocated money.
It is my personal experience that NHS-GP’s are not keen
to let an NHS-patient with a chronic disease register with them
because providing health-care for an NHS-patient with a chronic disease
would cost a lot of "their" allocated money...
That explains the very high mortality-rate on the NHS...
MooseMom, I do hope that also answers your question and explains
why I cannot receive NHS-medical care in my ESRF which is caused by my chronic Lupus/SLE/MCTD
and why I have no NHS-GP/consultant to go to in my ESRF...
MooseMom, I would be interested to know how you keep your kidneys going ?
Are you on a special diet, do you also drink the same amount of liquid every day,
and/or do you drink a special water etc. ?
Thanks from Kristina.
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kristina, my experience with the NHS is very limited. I was diagnosed with fsgs back in 1992 while I was living in Britain, but I never received any treatment, per se. I was living in the Croydon area, and the nephrologist to whom I was referred had his practice in Cheam, I believe, and it was really difficult for me to get to him, and since he really didn't have anything to say, I asked my GP if I could just see him on a regular basis, instead. So, I saw my GP only about twice a year, and all he did was take a blood sample and take my bp. Eventually he put me on hypertensives, and I do remember him telling me my creatinine (although at the time, I didn't know what he was on about). You see, my son was beginning to display signs of autism, and my kidneys were not my priority. No one ever told me about what happens with CKD...high cholesterol, the dietary restrictions, etc. So I was blissfully unaware of my declining renal function, but no one gave me any indication that I should be monitoring anything in particular.
So, I had a chronic condition and didn't get kicked off the GP's register, but then again, he didn't do much of anything for me, either.
No, I don't do anything to keep my kidneys going. For about 5 years, my neph had me on cyclosporine (never steroids), but once my egfr went below 20, he took me off of those as we both knew that there would come time when this med would become renally toxic. I don't do anything in particular for my kidneys except to religiously take my bp meds as elevated bp will damage them more. I also watch my protein intake. I think those two things are the only things we can do to keep the kidneys from being "overworked". All of the other stuff...high K, phos, etc, don't hurt the kidneys, although they certainly hurt the rest of you! So yeah...prevent high bp and don't eat too much protein. I aim to keep my daily serving of protein to the size of a pack of cards like my dietician recommended.
I specifically asked my neph if I should be restricting my fluid intake, and he said "no", so I don't monitor such things. I don't drink anything "special", but I don't like either sugary drinks nor diet drinks as they both make me more thirsty...plus, I just don't like the taste...so I brew fresh iced tea every morning (it's a special blend from Hawaii; I drink it just because I like it, not because I think there's some special health benefit). Mostly, I drink ice water. In the morning, I drink 4 oz of fruit juice blended with carbonated water. I steer clear of mineral waters (Volvic, Evian, etc) because I don't like the idea of more minerals, probably ones I'm not supposed to have.
By what I have read on IHD and from other sources, fsgs presents and progresses so differently from person to person. I'm in my 21st year with this disease, and I am not on dialysis yet. I've surpassed all of the predictions of my neph, but I don't expect to escape dialysis forever and ever. I wish I could tell you that I know the secret of how to slow the progression of fsgs, but I don't. I'm sure other fsgs people have done the same things that I have done, but they've progressed to ESRD more quickly. On the one hand, I guess I'm lucky I've lasted this long, but on the other hand, I've been told for over 7 years now that I will end up on D sooner rather than later, so for 7 years I've lived through a particular kind of hell, and that doesn't make me feel particularly lucky.
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Thanks MooseMom for your kind reply and explanations.
I am very sorry that your NHS-nephrologist was unable to advise a constructive way forward
after your diagnosis with FSGS in 1992... and as a result you only saw your NHS-GP
and then your son showed first signs of autism and it all came to you at the same time...
that must have been a terrible time for you... :grouphug;
...it reminds me of the shock & trauma when I was diagnosed with ESRF in August 2006,
because from 1995 onwards I saw a top NHS-specialist every three months
and he “checked-up” my blood (including my Creatinine + Urea etc.) every time I saw him...
... and he never said a word... he “did not notice” or he “forgot to tell me”
that my Creatinine was rising and that I was heading for ESRF...
...and my ESRF was only diagnosed in Accident & Emergency (A&E) in August 2006...
Just imagine my shock and horror because I believed
this NHS-specialist regularly checked-up my kidney-function & my health,
but in reality my kidney-function or my health were not checked-up for my benefit ...
and he never said a word about the deterioration of my kidney-function or my ESFR...
... I then realized that I had wasted all my time and effort seeing this NHS-specialist for so many years...
Thanks for letting me know the medication (cyclosporine) and your protein intake etc.
I don’t touch any sugary or “diet-drinks” either because of their chemicals.
I was drinking peppermint- and camomile-tea since my kidneys first failed in 1971,
but in recent years these teas became mass-produced and my body suddenly
could not tolerate them any longer... I now drink “Brita” filtered water instead...
I do hope you surpass the predictions of your nephrologist for a long time to come
and I do understand that you don’t feel particularly lucky by living with the continual uncertainty
of not knowing if or when your kidneys give in. Basically I do feel very similar,
but at the same time I do hope that my “two little fighters” give me enough time
to sort out my situation...
Thanks again from Kristina.
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Hello, again,
Has anyone heard of a medication called “Renatrophin” from Standard Process, Wisconsin?
I have been informed that this medication might possibly assist pre-dialysis patients to improve their kidney function
if they take one “Renatrophin” tablet every day for a few months.
Could that be true or does it sound like “snake-oil” ?
Does anyone know if this medication causes any side effects for people with drug-intolerance
and does anyone know where the basic ingredients come from ?
Does anyone know anything about the reputation of the company who produces “Renatrophin”?
Thanks again from Kristina.
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Kristina, in the US the rules are a little lax for "nutritional supplements". This product has not been reviewed or tested for safety by any official agency. You have no way of knowing if it is safe or really what is in it. I wouldn't trust it.
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Thanks for your thoughts, jeannea.
There seem to be a few “nutritional supplements” around which advertise they help the kidney function,
but as you say, it does not look as if there is any solid foundation for the claims
and they don’t say exactly what is in it.
That is why I always like to ask others first for their experiences.
I don’t understand how such "supplements" can so easily be put on the market place
to possibly endanger vulnerable people.
Thanks again from Kristina.
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hi Kristina,
This is just my opinion on "nutritional supplements" I truly believe that the people pushing them are not renal dietitians or Neph doctors.
The people pushing them saying how they help the kidney function are talking about healthy kidneys not ones that are barely functioning, at least not stage 5 renal disease.
They push kidney flushing and all sorts of herbs and magic pills that are great for your kidneys but they have no clue really.
There is NO cure for scaring of the kidney filters, they will NEVER heal but you can slow the scarring down if you're lucky. Oh by the way, I've heard so many times to drink lots of water to help flush your kidneys, my Neph doctor said that that isn't true, he said drink water when you're thirsty but don't just drink it because some book says to drink 8 glasses a day or whatever. I'm talking pre-dialysis not people on dialysis.
That's my 2 cents :flower;
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Thanks Riverwhispering (love the name, it sounds very poetical), for your kind thoughts.
It sounds very true what you say, that people selling “nutritional supplements” are not renal dietitians or nephrologists
and it doesn’t seem they talk about a remedy for a damaged kidney function in ESRF.
I have also noticed information claiming that herbs, magic pills and lots of water “flushes the kidneys”
and assist patients in ESRF and the same amount of water is mentioned for every pre-dialysis patient...
When I was told in August 2006 I was in ESRF with 6 months ‘till dialysis I researched on liquids for ESRF
and came across a pre-dialysis patient who drank a huge amount of liquid every day.
I tried exactly the same and my body almost collapsed.
I then enquired about body-weight, height etc. of pre-dialysis patients
and found out that this person was actually twice my weight,
so, of course their body could tolerate much more liquid than my body ever could...
I just try to influence my future by keeping my "two little fighters" functioning
for as long as possible without dialysis
and I search for safe possibilities to do so.
Thanks again from Kristina.
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Hello, again,
Has anyone heard of a medication called “Renatrophin” from Standard Process, Wisconsin?
I have been informed that this medication might possibly assist pre-dialysis patients to improve their kidney function
if they take one “Renatrophin” tablet every day for a few months.
Could that be true or does it sound like “snake-oil” ?
Does anyone know if this medication causes any side effects for people with drug-intolerance
and does anyone know where the basic ingredients come from ?
Does anyone know anything about the reputation of the company who produces “Renatrophin”?
Thanks again from Kristina.
Not quite ready to deeply expound upon what you inquire upon here, Kristina.
I am aware of this company (Standard Process, Palmyra, Wisconsin) and have used some of their protocols .
Depending on what one wants to believe, there was an unfavorable event some while back.
The protocols are based on whole food, from organic farming.
The company goes back to the 1930's or so, and is unusual for any company to endure so long, if not on the up and up.
Will add that no way would 'one “Renatrophin” tablet every day for a few months' be part of their actual protocol. It would be substantially more involved than that.
Not sure yet, but will, once I've gained the full amount of data to satisfy my particular research, come back and make a full report. Don't believe the company calls their product 'medication', as it is basically a 'whole food' product.
Enough said for now.
talker
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Return of renal function depends on the mechanism of injury or disease. However, once the kidneys are small and scarred, recovery is very unlikely. Note I said unlikely, not impossible.
I do believe in medical miracles but not at the hands of the miracle workers if you know what I mean. I have seen people we thought wouldn't recover at all and others we expected to recover not make it. If you talk to enough surgeons, you will probably run into some one who had a patient that they opened up and closed because their cancer was too far gone yet the patient spontaneously overcame their cancer. Is it an unknown immune response or divine intervention? No way to tell for sure, but yes, spontaneous recoveries especially for folks with acute kidney injuries is actually not all that uncommon.
Residual renal function is one of the most important predictors of survival. I firmly believe that the manner in which far too many patients have dialysis diminishes their residual renal function with acute injuries to the kidneys with each dialysis session from excessive ultrafiltration. I never allowed them to give me high UF since I still pee quite a lot and fluid management is not an issue. That is why home hemo with extended sessions and more frequent sessions with lower UF is so important. No good studies to date, but one that I haven't seen published from my prior dialysis unit suggested that is the case.
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Thank you talker for your answer about “Renatrophin”...
... I was asking because a former student acquaintance of mine lives in NY and mentioned it in a letter ...
... I had second thoughts about it later and did not try it ... my thoughts were and still are, that if it could really work, it would be mentioned in the news everywhere...
Thank you Hemodoc for your explanation about recovery after kidney failure...
... Perhaps I was very lucky that my “two little fighters” made a part recovery after my complete kidney failure in 1971,
despite the fact that they remained scarred, very small and with chronic proliferative glomerulonephritis...
... I agree with you, I have also noticed some people with hardly a chance to recover, make it
and some other people with hardly anything wrong, deteriorate without a chance...
...perhaps it is connected with the different mind-set of people ?...I have always been known to be a “chronic optimist”...
... That brings me to another question: my “two little fighters” are functioning so much better ...
I received in hospital one iron infusion and later a handful of “Mircera” injections as an outpatient...
My Creatinine has the same readings, as it was in December 2013 before my kidney stone experience...
...after that painful episode in December 2013 my health deteriorated rapidly, not only because of anaemia,
but the kidney stone had a terrible effect on my whole body (especially because I could not take any painkillers during that episode...).
The nephrologist thought I should “enjoy my current honeymoon” with better kidney function and he thought that I should be on Dialysis soon ...
... I am in a quandary about this, because a continental friend of mine was told by her nephrologist years ago,
that her constant tiredness would disappear as soon as she starts with dialysis ...
and she started dialysis three years ago. (She had a similar Creatinine as I had three years ago...
...we were in correspondence because we both suffer from the same diseases i.e. SLE/MCTD, chronic proliferative glomerulonephritis and hypertension) ....
The last time we talked on the phone, she told me her regret to have started dialysis so early, because she remains as tired as she was before starting dialysis...
My quandary is whether I should wait longer whilst my Creatinine remains at 650, or whether I should start dialysis?
I feel well and don't have symptoms... mind you, I have been with a frail kidney function for over 43 years and I have never experienced a good health...
... I would not say "I am used to it", but my body has learnt to manage very well on very little for many years...
My nephrologist also told me that I should first receive dialysis at the hospital and think about NX stage later
and I was hoping to get “set up” first and then start with the training straight away...
To be put on the transplant list is impossible right now...
...I was told that because of the operation and radiotherapy I had two years ago,
my waiting to be put on the transplant list would be 5 years... that leaves me waiting to be put on the transplant list another 3 years...
... that is why I am in this quandary because I was wondering if my (frail) body could be “worn out” by dialysis
if I have to wait another three years to be put on the transplant list in the first place...?
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Thank you talker for your answer about “Renatrophin”...
... I was asking because a former student acquaintance of mine lives in NY and mentioned it in a letter ...
... I had second thoughts about it later and did not try it ... my thoughts were and still are, that if it could really work, it would be mentioned in the news everywhere...
Thank you Hemodoc for your explanation about recovery after kidney failure...
... Perhaps I was very lucky that my “two little fighters” made a part recovery after my complete kidney failure in 1971,
despite the fact that they remained scarred, very small and with chronic proliferative glomerulonephritis...
... I agree with you, I have also noticed some people with hardly a chance to recover, make it
and some other people with hardly anything wrong, deteriorate without a chance...
...perhaps it is connected with the different mind-set of people ?...I have always been known to be a “chronic optimist”...
... That brings me to another question: my “two little fighters” are functioning so much better ...
I received in hospital one iron infusion and later a handful of “Mircera” injections as an outpatient...
My Creatinine has the same readings, as it was in December 2013 before my kidney stone experience...
...after that painful episode in December 2013 my health deteriorated rapidly, not only because of anaemia,
but the kidney stone had a terrible effect on my whole body (especially because I could not take any painkillers during that episode...).
The nephrologist thought I should “enjoy my current honeymoon” with better kidney function and he thought that I should be on Dialysis soon ...
... I am in a quandary about this, because a continental friend of mine was told by her nephrologist years ago,
that her constant tiredness would disappear as soon as she starts with dialysis ...
and she started dialysis three years ago. (She had a similar Creatinine as I had three years ago...
...we were in correspondence because we both suffer from the same diseases i.e. SLE/MCTD, chronic proliferative glomerulonephritis and hypertension) ....
The last time we talked on the phone, she told me her regret to have started dialysis so early, because she remains as tired as she was before starting dialysis...
My quandary is whether I should wait longer whilst my Creatinine remains at 650, or whether I should start dialysis?
I feel well and don't have symptoms... mind you, I have been with a frail kidney function for over 43 years and I have never experienced a good health...
... I would not say "I am used to it", but my body has learnt to manage very well on very little for many years...
My nephrologist also told me that I should first receive dialysis at the hospital and think about NX stage later
and I was hoping to get “set up” first and then start with the training straight away...
To be put on the transplant list is impossible right now...
...I was told that because of the operation and radiotherapy I had two years ago,
my waiting to be put on the transplant list would be 5 years... that leaves me waiting to be put on the transplant list another 3 years...
... that is why I am in this quandary because I was wondering if my (frail) body could be “worn out” by dialysis
if I have to wait another three years to be put on the transplant list in the first place...?
First off, do you have a fistula yet? If you dont it is time to move quickly as it requires months to fully mature . If you wait and end up starting on a catheter it is much more dangerous.
If you eventually get onto nxstage it wont wear you out. I bet your friend is on standard 3 times per week dialysis that does no favors to the body. Going to 5 day per week nxstage is another world. Our dialyisis nurses are now pushing Nxsatage on all home hemo patients as they see the big improvement from stnadard 3 day per week on the way patients feel.
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Thank you obsidianom,
I don’t have a fistula yet and I have been told I should have a catheter first...
I thought I would get a fistula for NX stage first and then start with MX stage training and eventually start dialysis after the training....
... I had hoped NX stage would give me a fair chance not to “get worn out” too quickly... because of my long wait to get on the transplant list...
... at the same time I must say that I feel quite well again and shall have my next “Mircera” injection in few weeks ...
Thanks from Kristina.
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Thank you obsidianom,
I don’t have a fistula yet and I have been told I should have a catheter first...
I thought I would get a fistula for NX stage first and then start with MX stage training and eventually start dialysis after the training....
... I had hoped NX stage would give me a fair chance not to “get worn out” too quickly... because of my long wait to get on the transplant list...
... at the same time I must say that I feel quite well again and shall have my next “Mircera” injection in few weeks ...
Thanks from Kristina.
I dont understand why you were told to get a catheter first. All the research and articles indicate starting with a catheter is far riskier and patients dont do as well. A catheter should be used only when there are no other options and /or starting dialysis is an emergency before a fistula is in place. I relly question what you were told. Now is a good time to do a fistula as you have time to do it right and let it mature.
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Thank you obsidianom,
I don’t have a fistula yet and I have been told I should have a catheter first...
I thought I would get a fistula for NX stage first and then start with MX stage training and eventually start dialysis after the training....
... I had hoped NX stage would give me a fair chance not to “get worn out” too quickly... because of my long wait to get on the transplant list...
... at the same time I must say that I feel quite well again and shall have my next “Mircera” injection in few weeks ...
Thanks from Kristina.
I dont understand why you were told to get a catheter first. All the research and articles indicate starting with a catheter is far riskier and patients dont do as well. A catheter should be used only when there are no other options and /or starting dialysis is an emergency before a fistula is in place. I relly question what you were told. Now is a good time to do a fistula as you have time to do it right and let it mature.
My understanding of 'why' a catheter first, was to allow the fistula to properly mature, and when the fistula is 'ripe' do a series of dialysis runs, using only one (1) needle. So for each venous or arterial dialysis test, it would be one needle in the catheter and one needle in the fistula. This to check for a good flow in and out of the fistuls.
talker
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The fistula first initiative has made the goal to avoid that scenario as the staistics show increased morbidity with that approach. If the fistula is done far enough in advance and matures there is no need of that whole scenario . The fistula can be tested for flow in advance by ultrasound .
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Thank you obsidianom,
I don’t have a fistula yet and I have been told I should have a catheter first...
I thought I would get a fistula for NX stage first and then start with MX stage training and eventually start dialysis after the training....
... I had hoped NX stage would give me a fair chance not to “get worn out” too quickly... because of my long wait to get on the transplant list...
... at the same time I must say that I feel quite well again and shall have my next “Mircera” injection in few weeks ...
Thanks from Kristina.
I dont understand why you were told to get a catheter first. All the research and articles indicate starting with a catheter is far riskier and patients dont do as well. A catheter should be used only when there are no other options and /or starting dialysis is an emergency before a fistula is in place. I relly question what you were told. Now is a good time to do a fistula as you have time to do it right and let it mature.
My understanding of 'why' a catheter first, was to allow the fistula to properly mature, and when the fistula is 'ripe' do a series of dialysis runs, using only one (1) needle. So for each venous or arterial dialysis test, it would be one needle in the catheter and one needle in the fistula. This to check for a good flow in and out of the fistuls.
talker
Actually, most American nephrologists fail to place the fistula in a timely manner when the GFR is about 20-25 ml/min. Catheters have a high risk of serious vascular damage and should be avoided at all costs. The US does not adhere to this simple recommendation. So most dialysis patients start with a catheter but that is a very poor practice.
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Thank you obsidianom,
I don’t have a fistula yet and I have been told I should have a catheter first...
I thought I would get a fistula for NX stage first and then start with MX stage training and eventually start dialysis after the training....
... I had hoped NX stage would give me a fair chance not to “get worn out” too quickly... because of my long wait to get on the transplant list...
... at the same time I must say that I feel quite well again and shall have my next “Mircera” injection in few weeks ...
Thanks from Kristina.
I dont understand why you were told to get a catheter first. All the research and articles indicate starting with a catheter is far riskier and patients dont do as well. A catheter should be used only when there are no other options and /or starting dialysis is an emergency before a fistula is in place. I relly question what you were told. Now is a good time to do a fistula as you have time to do it right and let it mature.
My understanding of 'why' a catheter first, was to allow the fistula to properly mature, and when the fistula is 'ripe' do a series of dialysis runs, using only one (1) needle. So for each venous or arterial dialysis test, it would be one needle in the catheter and one needle in the fistula. This to check for a good flow in and out of the fistuls.
talker
Actually, most American nephrologists fail to place the fistula in a timely manner when the GFR is about 20-25 ml/min. Catheters have a high risk of serious vascular damage and should be avoided at all costs. The US does not adhere to this simple recommendation. So most dialysis patients start with a catheter but that is a very poor practice.
How should a patient start dialysis if their access is not developed yet? We are talking about 3 times a week for 4 hours in-center. Where should the doctor draw the blood from if there is no catheter and no access?
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If the patient is referred for access too late, then you are stuck with a catheter. Unfortunately, that is the norm in America while in Japan it is very much frowned upon. If you have CKD followed by a nephrologist, is there really any excuse for not placing an access in a timely manner? No, I don't think so. If you are a patient in that situation with the need for dialysis, you have no choice. But, you need to get the access working as quickly as humanly possible and pull the catheter to minimize long term risks.
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There is no way to know if you'll feel better with dialysis or not. Technically you should feel better but should is not always reality. Like your friend found, some people don't feel well after a treatment. Others feel great. I think starting should be your decision.
It is better for infection risk to have a mature fistula ready. I started with a catheter because it was an emergency. My transplant was working and then it wasn't with no warning. Others have lots of time to plan. I would at least question further why they advise against the fistula creation.
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Thank you very much obsidianom, talker, Hemodoc, cwbrooklyn and jeannea, your thoughts are very much appreciated.
When I was brought to the Accident & Emergency I had collapsed because of severe anaemia and ESRF .
Because of this and other medical considerations concerning “my” SLE/MCTD plus “my” Vasculitis and Antiphospholipid Syndrome,
the doctors could not give me emergency dialysis via a catheter at that time.
Since having had a series of “Mircera” injections I have surprisingly improved to such an extent, that I don’t need emergency dialysis anymore.
I have resumed my exercises, my little walks and my “old” diet and my blood levels are normalizing and slowly improving.
I feel much better and I am mystified about not really knowing where I stand with my health at the moment...
My body is still recovering from this severe emergency situation and my GFR has improved from 6.1 to 7.2 (Cockcroft-Gault),
Mind you, I am still building up but I feel better.
Does anyone know if it is possible to start off with NX stage (that is first having a fistula and later NX stage training at a centre)
without going through a period of regular haemodialysis at a dialysis centre before starting NX stage training ?
I try to avoid the catheter and I also try to avoid regular “standard” haemodialysis at a dialysis centre...
... and I try to take the “middle of the road approach” to get "my" NX stage fistula and NX stage training...
Is this route possible and has it been taken ?
I mention this because I also suffer from Vasculitis and Antiphospholipid Syndrome and other medical complications,
plus photosensitivity to ultraviolet lights in dialysis centres (visited one at the hospital...).
Perhaps I could endure ultraviolet lighting during the time of NX stage training,
but I must try to avoid ultraviolet lighting in order to avoid further medical complications (i.e. SLE/MCTD flare-ups) due to “my” photosensitivity...
Thank you from Kristina.
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Thank you very much obsidianom, talker, Hemodoc, cwbrooklyn and jeannea, your thoughts are very much appreciated.
When I was brought to the Accident & Emergency I had collapsed because of severe anaemia and ESRF .
Because of this and other medical considerations concerning “my” SLE/MCTD plus “my” Vasculitis and Antiphospholipid Syndrome,
the doctors could not give me emergency dialysis via a catheter at that time.
Since having had a series of “Mircera” injections I have surprisingly improved to such an extent, that I don’t need emergency dialysis anymore.
I have resumed my exercises, my little walks and my “old” diet and my blood levels are normalizing and slowly improving.
I feel much better and I am mystified about not really knowing where I stand with my health at the moment...
My body is still recovering from this severe emergency situation and my GFR has improved from 6.1 to 7.2 (Cockcroft-Gault),
Mind you, I am still building up but I feel better.
Does anyone know if it is possible to start off with NX stage (that is first having a fistula and later NX stage training at a centre)
without going through a period of regular haemodialysis at a dialysis centre before starting NX stage training ?
I try to avoid the catheter and I also try to avoid regular “standard” haemodialysis at a dialysis centre...
... and I try to take the “middle of the road approach” to get "my" NX stage fistula and NX stage training...
Is this route possible and has it been taken ?
I mention this because I also suffer from Vasculitis and Antiphospholipid Syndrome and other medical complications,
plus photosensitivity to ultraviolet lights in dialysis centres (visited one at the hospital...).
Perhaps I could endure ultraviolet lighting during the time of NX stage training,
but I must try to avoid ultraviolet lighting in order to avoid further medical complications (i.e. SLE/MCTD flare-ups) due to “my” photosensitivity...
Thank you from Kristina.
I dont see why you couldnt start with nxstage rather than regular dialysis. It would be up to your nephrologist and the training center. I dont see what you gain from starting in center and then switching. You need to be monitered initially but that could be done while you are in training for Nxstage for the 4 to 6 weeks . That is what I would push for. The sooner you get going on the fistula the better as you dont want to start on a catheter because you waited too long.
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If the patient is referred for access too late, then you are stuck with a catheter. Unfortunately, that is the norm in America while in Japan it is very much frowned upon. If you have CKD followed by a nephrologist, is there really any excuse for not placing an access in a timely manner? No, I don't think so. If you are a patient in that situation with the need for dialysis, you have no choice. But, you need to get the access working as quickly as humanly possible and pull the catheter to minimize long term risks.
Hemodoc, I do understand your posting above; however, most people do not realize they have kidney failure until the syptom starts to show. Most people do not go to the doctor once or twice a year if nothing is wrong. Usually, when a patient finds out he/she has kidney failure, he/she is in an immediately need. America is different from Japan and most of the time Americans do avoid seeing a doctor every year. Most patients are starting off with a catherer until they access is ready to use. Yes it can get infected but the goal is to use it until your access is fully ready. To tell patients its dangerous to use a cahterer is a little to much because catherers is what Amercia uses at first. Now if you choose to stay with the catherer then yes is can be dangerous because of infections.
See, what I'm starting to notice about you that if a patient does not do as you then he/she is doing it wrong or in danger.
I remember when I first started dialysis and I went to my primary doctor office for my yearly check-up, he told me that I will only live for five years because that's the expanded time for dialysis patients. I laughed at him in his face because he is not God and can't determine when I am going to die. It's going on 15 years I been on dialysis and I'm still kicking it live. I feel great better now then in-center. However, what I'm trying to say is that everything your read is not so. Sometimes it is good to have an open mind when it comes to dialysis because technology is changing every year. What happened back in the days is no more nowadays.
No disrespected attended, just letting you know how I am feeling.
Have a wonderful day.
-
If the patient is referred for access too late, then you are stuck with a catheter. Unfortunately, that is the norm in America while in Japan it is very much frowned upon. If you have CKD followed by a nephrologist, is there really any excuse for not placing an access in a timely manner? No, I don't think so. If you are a patient in that situation with the need for dialysis, you have no choice. But, you need to get the access working as quickly as humanly possible and pull the catheter to minimize long term risks.
Hemodoc, I do understand your posting above; however, most people do not realize they have kidney failure until the syptom starts to show. Most people do not go to the doctor once or twice a year if nothing is wrong. Usually, when a patient finds out he/she has kidney failure, he/she is in an immediately need. America is different from Japan and most of the time Americans do avoid seeing a doctor every year. Most patients are starting off with a catherer until they access is ready to use. Yes it can get infected but the goal is to use it until your access is fully ready. To tell patients its dangerous to use a cahterer is a little to much because catherers is what Amercia uses at first. Now if you choose to stay with the catherer then yes is can be dangerous because of infections.
See, what I'm starting to notice about you that if a patient does not do as you then he/she is doing it wrong or in danger.
I remember when I first started dialysis and I went to my primary doctor office for my yearly check-up, he told me that I will only live for five years because that's the expanded time for dialysis patients. I laughed at him in his face because he is not God and can't determine when I am going to die. It's going on 15 years I been on dialysis and I'm still kicking it live. I feel great better now then in-center. However, what I'm trying to say is that everything your read is not so. Sometimes it is good to have an open mind when it comes to dialysis because technology is changing every year. What happened back in the days is no more nowadays.
No disrespected attended, just letting you know how I am feeling.
Have a wonderful day.
You my dear are an inspiration for going on 15 years. Good for you. Keep it up.
I think what Hemodoc was writing was most patients know they are getting into near dialysis well before they reach GFR of 20 to 25 which is when he wrote fistulas should be done. By that point they have some symptoms and have to see a doctor. His point is the doctors should get things going sooner.
That happened with my wife. (I should have known better too). . Our nephrologist just watched her kidneys go downhill and didnt mention a fistula until we were just about ready for dialysis . We should have done it 3 months earlier.
WE also heard the line about dying soon on dialysis from the first vascular surgeon. He told my wife she had a 50% chance of dying that first year. REAL NICE!
Needless to say we went elsewhere for her fistula.
The staistics on people starting on catheters is not good. Even if they switch over quickly they seem to have very high % of fairly serious problems. So Hemodoc is correct it is not a good way to go and can be avioded if the nephrologists would move quicker to get patients to have fistula surgeries.
-
It's going on 15 years I been on dialysis and I'm still kicking it live.
Love it!
-
Okay, understood!!! Thanks.
-
If the patient is referred for access too late, then you are stuck with a catheter. Unfortunately, that is the norm in America while in Japan it is very much frowned upon. If you have CKD followed by a nephrologist, is there really any excuse for not placing an access in a timely manner? No, I don't think so. If you are a patient in that situation with the need for dialysis, you have no choice. But, you need to get the access working as quickly as humanly possible and pull the catheter to minimize long term risks.
Hemodoc, I do understand your posting above; however, most people do not realize they have kidney failure until the syptom starts to show. Most people do not go to the doctor once or twice a year if nothing is wrong. Usually, when a patient finds out he/she has kidney failure, he/she is in an immediately need. America is different from Japan and most of the time Americans do avoid seeing a doctor every year. Most patients are starting off with a catherer until they access is ready to use. Yes it can get infected but the goal is to use it until your access is fully ready. To tell patients its dangerous to use a cahterer is a little to much because catherers is what Amercia uses at first. Now if you choose to stay with the catherer then yes is can be dangerous because of infections.
See, what I'm starting to notice about you that if a patient does not do as you then he/she is doing it wrong or in danger.
I remember when I first started dialysis and I went to my primary doctor office for my yearly check-up, he told me that I will only live for five years because that's the expanded time for dialysis patients. I laughed at him in his face because he is not God and can't determine when I am going to die. It's going on 15 years I been on dialysis and I'm still kicking it live. I feel great better now then in-center. However, what I'm trying to say is that everything your read is not so. Sometimes it is good to have an open mind when it comes to dialysis because technology is changing every year. What happened back in the days is no more nowadays.
No disrespected attended, just letting you know how I am feeling.
Have a wonderful day.
You my dear are an inspiration for going on 15 years. Good for you. Keep it up.
I think what Hemodoc was writing was most patients know they are getting into near dialysis well before they reach GFR of 20 to 25 which is when he wrote fistulas should be done. By that point they have some symptoms and have to see a doctor. His point is the doctors should get things going sooner.
That happened with my wife. (I should have known better too). . Our nephrologist just watched her kidneys go downhill and didnt mention a fistula until we were just about ready for dialysis . We should have done it 3 months earlier.
WE also heard the line about dying soon on dialysis from the first vascular surgeon. He told my wife she had a 50% chance of dying that first year. REAL NICE!
Needless to say we went elsewhere for her fistula.
The staistics on people starting on catheters is not good. Even if they switch over quickly they seem to have very high % of fairly serious problems. So Hemodoc is correct it is not a good way to go and can be avioded if the nephrologists would move quicker to get patients to have fistula surgeries.
Okay, understood. Thanks!!!!
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It's going on 15 years I been on dialysis and I'm still kicking it live.
Love it!
Thanks Cariad!!!!!
-
*
-
My body is still recovering from this severe emergency situation and my GFR has improved from 6.1 to 7.2 (Cockcroft-Gault),
Mind you, I am still building up but I feel better.
Does anyone know if it is possible to start off with NX stage (that is first having a fistula and later NX stage training at a centre)
without going through a period of regular haemodialysis at a dialysis centre before starting NX stage training ?
I try to avoid the catheter and I also try to avoid regular “standard” haemodialysis at a dialysis centre...
... and I try to take the “middle of the road approach” to get "my" NX stage fistula and NX stage training...
Is this route possible and has it been taken ?
Thank you from Kristina.
Kristina - Theoretically, there is no reason why you can't start with NxStage when finally going on hemodialysis. When you get the training, you're also receiving treatment. HOWEVER, if you wait too long and are extremely ill when finally starting dialysis, then you might have to receive a few weeks worth of treatment incenter to become stabilized. And, if that is the situation, then you will probably be starting dialysis with a catheter for waiting too long before getting a fistula established. (BTW, just to make sure you understand, there is no difference in a fistula used for NxStage or any other form of hemodialysis treatment.)
What Hemodoc and Obsidianom fail to take into consideration with their advice is you are in the United Kingdom. NHS works in a totally different manner with gatekeepers and more red tape than here in the States. Also, NxStage is not yet offered universally in the UK, so depending on where you live, there actually might be a waiting list and you will have to do incenter dialysis for awhile. For these reasons alone, it is imperative to be more proactive and get things lined up.
If the GFR number mentioned above correlates to U.S. measurement, you truly are treading on thin water with kidney function of less than 10% - at least in the ability to clear toxins from your body. I don't recall reading anything about how well you are still making urine, so don't know if you are retaining fluid. However, the vast majority of esrd patients start dialysis when GFR falls to 10-15.
So PLEASE go ahead a schedule an appointment with a vascular surgeon who has experience working with patients who have compromised vascular systems and get your fistula placed! With all your additional medical complications, you do not need to deal with the potential problems that can come with a catheter. Yes, in the short term it might not give you any problems or cause infection. However, why chance it? Do everything possible not to have one!
Kristina, you've given this a better fight than most ever could. However, in terms of the grieving process towards the death of your kidney function, you seem to be in the bargaining stage. Yet, please realize it's now time to take the next step by getting your fistula placed and maturing. Yes, it will be depressing, but will go a long ways in helping you to get to acceptance of needing to be on dialysis. And, as I've stated before and believe with all my heart, if you expend the same amount of pre-esrd energy into learning to live well with dialysis, I have no doubt you will once again enjoy activities you have had to give up over the last couple of years.
All my best ~ Noahvale
AS usual , excellant points Noahvale.
Listen to him Kristina.
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Hello, I wanted to quickly thank you all for your great thought on my predicament.
You gave such a lot of valuable practical advice which is very much appreciated.
The next time I see my nephrologist I will be in a much better position to discuss
how matters will go forward from here.
Thank you very much again from Kristina.
-
Kristina, if you want to avoid a catheter and dialyzing in center, you definitely need to move forward with getting your fistula made. It it is not just a case of having a fistula made, and away you go. It takes time to mature to be useable. This can be anything from a few weeks to as much as a year. Mine took the latter. The longer that you delay, the more likely you are going to end up being dialyzed in center through a catheter.
-
If the patient is referred for access too late, then you are stuck with a catheter. Unfortunately, that is the norm in America while in Japan it is very much frowned upon. If you have CKD followed by a nephrologist, is there really any excuse for not placing an access in a timely manner? No, I don't think so. If you are a patient in that situation with the need for dialysis, you have no choice. But, you need to get the access working as quickly as humanly possible and pull the catheter to minimize long term risks.
Hemodoc, I do understand your posting above; however, most people do not realize they have kidney failure until the syptom starts to show. Most people do not go to the doctor once or twice a year if nothing is wrong. Usually, when a patient finds out he/she has kidney failure, he/she is in an immediately need. America is different from Japan and most of the time Americans do avoid seeing a doctor every year. Most patients are starting off with a catherer until they access is ready to use. Yes it can get infected but the goal is to use it until your access is fully ready. To tell patients its dangerous to use a cahterer is a little to much because catherers is what Amercia uses at first. Now if you choose to stay with the catherer then yes is can be dangerous because of infections.
See, what I'm starting to notice about you that if a patient does not do as you then he/she is doing it wrong or in danger.
I remember when I first started dialysis and I went to my primary doctor office for my yearly check-up, he told me that I will only live for five years because that's the expanded time for dialysis patients. I laughed at him in his face because he is not God and can't determine when I am going to die. It's going on 15 years I been on dialysis and I'm still kicking it live. I feel great better now then in-center. However, what I'm trying to say is that everything your read is not so. Sometimes it is good to have an open mind when it comes to dialysis because technology is changing every year. What happened back in the days is no more nowadays.
No disrespected attended, just letting you know how I am feeling.
Have a wonderful day.
Actually, you have misunderstood my information. I am not stating everyone needs to do as I do, but instead what the medical literature reports. That is what I am relaying to you, not my own personal choices.
In addition, I have met many dialysis patients with long standing CKD who started with catheters because of failed attention by their nephrologists. That is the reason I have relayed what is the optimal approach to renal access. And no, a significant number of patients with known CKD also end up with catheters which is simply wrong.
Lastly, I have discussed the international norms. I no longer treat patients so if folks don't want to take the information I have learned from international studies especially, then that is up to them, but I am not in the business of telling patients what is right and wrong. I will on the other hand take issue with the way American nephrologists treat their patients for sure.
-
If the patient is referred for access too late, then you are stuck with a catheter. Unfortunately, that is the norm in America while in Japan it is very much frowned upon. If you have CKD followed by a nephrologist, is there really any excuse for not placing an access in a timely manner? No, I don't think so. If you are a patient in that situation with the need for dialysis, you have no choice. But, you need to get the access working as quickly as humanly possible and pull the catheter to minimize long term risks.
Hemodoc, I do understand your posting above; however, most people do not realize they have kidney failure until the syptom starts to show. Most people do not go to the doctor once or twice a year if nothing is wrong. Usually, when a patient finds out he/she has kidney failure, he/she is in an immediately need. America is different from Japan and most of the time Americans do avoid seeing a doctor every year. Most patients are starting off with a catherer until they access is ready to use. Yes it can get infected but the goal is to use it until your access is fully ready. To tell patients its dangerous to use a cahterer is a little to much because catherers is what Amercia uses at first. Now if you choose to stay with the catherer then yes is can be dangerous because of infections.
See, what I'm starting to notice about you that if a patient does not do as you then he/she is doing it wrong or in danger.
I remember when I first started dialysis and I went to my primary doctor office for my yearly check-up, he told me that I will only live for five years because that's the expanded time for dialysis patients. I laughed at him in his face because he is not God and can't determine when I am going to die. It's going on 15 years I been on dialysis and I'm still kicking it live. I feel great better now then in-center. However, what I'm trying to say is that everything your read is not so. Sometimes it is good to have an open mind when it comes to dialysis because technology is changing every year. What happened back in the days is no more nowadays.
No disrespected attended, just letting you know how I am feeling.
Have a wonderful day.
Actually, you have misunderstood my information. I am not stating everyone needs to do as I do, but instead what the medical literature reports. That is what I am relaying to you, not my own personal choices.
In addition, I have met many dialysis patients with long standing CKD who started with catheters because of failed attention by their nephrologists. That is the reason I have relayed what is the optimal approach to renal access. And no, a significant number of patients with known CKD also end up with catheters which is simply wrong.
Lastly, I have discussed the international norms. I no longer treat patients so if folks don't want to take the information I have learned from international studies especially, then that is up to them, but I am not in the business of telling patients what is right and wrong. I will on the other hand take issue with the way American nephrologists treat their patients for sure.
Okay, fair enough.
-
Yup, got the usual warning:
Warning: 'this topic has not been posted in for at least 120 days.
Unless you're sure you want to reply, please consider starting a new topic. '
:shy;
I do go through a full string of topics / posts and find them quite informative.
Yes, I could start a new topic and post a link to this topic.
Wonder how many would actually follow through, and read all of the comments !
Regardless, I've not given up hope of getting off dialysis, and do various protocols.
Some help, some don't.
Unless one actually does a protocol, they will never know if 'they could of been helped'.
We are each and every one of us, very different, each with our own set of 'what is or is not ailing us'.
Maybe I have a 'fool' for a doctor (me) , yet I was not happy with how my health was going that first year on dialysis.
(now four (4) years, one (1) month and ten (10) days, or some thing close to those numbers)
Is when I decided to look into dialysis, as an electronic 'troubleshooter' (from my past career days) instead of as a patient on dialysis.
Whether I succeed and successfully get off of dialysis or succumb to old age first, (few month shy of 90) is irrelevant,
Did endeavor to explain my protocols to the doctors, but was met with skepticism.
Do use 'how I feel' and the report card given each month, to adjust any protocol used.
I'm no longer 'questioned' by those that 'supply' answers to patients, as I reply back 'How does my report card look ?'.
How can they argue with the overall good set of numbers THEY supply each month, based on my blood work?
So like that old time radio program by Major Bowe's , 'round and round she goes, where she stops no one knows'.
Good Lord willing and the creek don't rise, be seeing ya.
-
Thank you again talker for bringing back this topic.
It was most interesting for me to read again, how hard I did try to keep off dialysis
whilst I went through these traumatizing dilemmas, having come across so many unprofessional medics in the NHS-Health-service ...
... My luck finally changed the moment I was life-dangerously unwell with ESRF and was quickly brought to an emergency NHS-hospital
where I was instantly put under the medical care of a most humanitarian specialist and he kindly steered me into the right medical direction...
... and for the first time in many years I suddenly started to come across kind, understanding and very helpful NHS-medical staff
who were all working very professionally and in unison under this most humanitarian and very kind NHS-specialist...
... It just goes to show, that if there is one kind, humanitarian and understanding top medic running a hospital,
all other medics follow suit and the patient is wonderfully, properly and medically very professionally being looked after from then on ...
Let's hope things won't change in a hurry and I can continue to take a rest from these horrific former experiences
and continue to receive my dialysis-treatment in this most professional, very clean and wonderfully humanitarian dialysis-unit ...
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Our dialyisis nurses are now pushing Nxsatage on all home hemo patients as they see the big improvement from standard 3 day per week on the way patients feel.
Home patients on the BabyK/2008K should consider asking their MD to prescribe either every other day or 4 day a week home treatment to get some of the same benefit.
-
Yup, got the usual warning:
Warning: 'this topic has not been posted in for at least 120 days.
Unless you're sure you want to reply, please consider starting a new topic. '
I do go through a full string of topics / posts and find them quite informative.
Yes, I could start a new topic and post a link to this topic.
Wonder how many would actually follow through, and read all of the comments !
Hello again, talker,
... Whilst it might be interesting to bring back topics from the archives,
it also can be very upsetting to read the thoughtful support of lovely people, like for example dear Traveller1947
who sadly is no longer with us because she has lost her battle with ESRF...
... or ... re-reading the support and lovely thoughts of IHD-members, who have not been on IHD for a considerable time
and the reader is left guessing what might have happened to them ... whilst hoping they are alright ...
... It can be quite upsetting to come across it completely unprepared,
and it certainly "brings home", how very vulerable and fragile ESRF makes us ...
-
Yup, got the usual warning:
Warning: 'this topic has not been posted in for at least 120 days.
Unless you're sure you want to reply, please consider starting a new topic. '
I do go through a full string of topics / posts and find them quite informative.
Yes, I could start a new topic and post a link to this topic.
Wonder how many would actually follow through, and read all of the comments !
Hello again, talker,
... Whilst it might be interesting to bring back topics from the archives,
it also can be very upsetting to read the thoughtful support of lovely people, like for example dear Traveller1947
who sadly is no longer with us because she has lost her battle with ESRF...
... or ... re-reading the support and lovely thoughts of IHD-members, who have not been on IHD for a considerable time
and the reader is left guessing what might have happened to them ... whilst hoping they are alright ...
... It can be quite upsetting to come across it completely unprepared,
and it certainly "brings home", how very vulerable and fragile ESRF makes us ...
Hello Kristina,
Sorry if I had caused you any upset.
The perils you mention were addressed in some of my earlier posts.
Does quite often bring on a sadness wondering what has / had happened.
When I found that some had passed, A prayer was offered.
Other instances were responded to by other IHD members, with 'what had happened to that person'.
Often with out further information available about a 'missing' person, I again offer a prayer to the Universe, giving thanks for their having been here.
Brings to mind an old saying ' Gone , but not forgotten'.
So in a hundred years, perhaps some one will ask ' Hmmnn, wonder what happened to that Talker guy'.
-
.................. (few month shy of 90) is irrelevant,.............
Good Lord willing and the creek don't rise, be seeing ya.
I never would have taken you to be near that old. I guess it is just further proof that wisdom is acquired through age.
Creeks were out of their banks here last week.
This week they are frozen.
Mid-Missouri. They have a saying about weather changing.
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.................. (few month shy of 90) is irrelevant,.............
Good Lord willing and the creek don't rise, be seeing ya.
I never would have taken you to be near that old. I guess it is just further proof that wisdom is acquired through age.
Creeks were out of their banks here last week.
This week they are frozen.
Mid-Missouri. They have a saying about weather changing.
Best of luck with the Mod job Charlie B53.
Thanks for the 'wisdom' complement, guess you IHD Mods haven't received the email from my wife yet.
When I was a Mod awhile back used to sign notices as 'The Mod Squad'. That got attention.
Also had demonstrated to my family. my ability to 'walk on water'.
Course was as you had mentioned 'frozen', at the time. Ha.
Well now, gotta go and dust off that reserved bottle of Guinness, reserved for that day I can successfully get off dialysis.
Twenty one bottles of beer on the wall................................
-
I usually average less than one bottle of Corona, a year.
This year I've actually had TWO, in one day!. I totaled 11 for the year.
Still have a couple on the bottom drawer. and a lime in the top drawer.
I'm ready for Summer to get here.
-
Yup, got the usual warning:
Warning: 'this topic has not been posted in for at least 120 days.
Unless you're sure you want to reply, please consider starting a new topic. '
I do go through a full string of topics / posts and find them quite informative.
Yes, I could start a new topic and post a link to this topic.
Wonder how many would actually follow through, and read all of the comments !
Hello again, talker,
... Whilst it might be interesting to bring back topics from the archives,
it also can be very upsetting to read the thoughtful support of lovely people, like for example dear Traveller1947
who sadly is no longer with us because she has lost her battle with ESRF...
... or ... re-reading the support and lovely thoughts of IHD-members, who have not been on IHD for a considerable time
and the reader is left guessing what might have happened to them ... whilst hoping they are alright ...
... It can be quite upsetting to come across it completely unprepared,
and it certainly "brings home", how very vulerable and fragile ESRF makes us ...
Hello Kristina,
Sorry if I had caused you any upset.
The perils you mention were addressed in some of my earlier posts.
Does quite often bring on a sadness wondering what has / had happened.
When I found that some had passed, A prayer was offered.
Other instances were responded to by other IHD members, with 'what had happened to that person'.
Often with out further information available about a 'missing' person, I again offer a prayer to the Universe, giving thanks for their having been here.
Brings to mind an old saying ' Gone , but not forgotten'.
So in a hundred years, perhaps some one will ask ' Hmmnn, wonder what happened to that Talker guy'.
Many thanks for your apology talker and ... your understanding of my sensitivity is very much appreciated.
... To re-read thoughts of members who have left and especially Traveller1947 who sadly lost her battle with ESRF,
is very touching and extremely upsetting... Thanks again for your kind understanding from Kristina. :grouphug;
-
Hello kristina,
While not as severe as you have experienced, my entry into the 'kidney' problem area had renewed my 'questioning' of the 'WHY', of it .
Yes, I actually venture into these seemingly unanswerable areas.
(quoted from my blog)
So here we are, experiencing.
While in spirit, we choose the actual what and how’ of each of the twelve (thirteen) incarnations. We did the deciding, to set the ‘learning curve’ involved, into action, to get a full range of experiences.
-------------------------
(Remove the @, then copy and paste.)
@http://www.thetalker.org/archives/401/20-talker-on-the-high-self/
-------------------------
Pondering the imponderables has been for me, lessons in logic, annoyance, and the at times frustrations of 'what is the reality of how one experiences and why'.
Questions like:
1 - Why is one so sensitive to certain events?
2 - Does one really 'ask' for certain experiences?
3 - Who in their 'right' mind would even ask for multiple illnesses and problems?
4 - Is reincarnation true or not?
5 - Is anything regards the Zodiac and reincarnation factual?
6 - Is my 'Personally, I tend to believe that the a soul, is experiencing at least (12) twelve, simultaneous physical life manifestations' right or incorrect?
7 - Is my 'So, as I see it, what one is feeling / experiencing at this moment in time, is by our choice to experience it. However horrific, beautiful, dull, or exciting as it may be, in the experiencing, one needs to consider that ‘We’ our-self, may have actually written the script for the current drama involved in our life.', right or incorrect?
8 - To what extent 'do we / can we' control our fate?
9 - To what extent do we actually have' free will' ?
10 - If I'm responsible for any of my experiences, can I undo it?
11 - Do those souls that have passed on say ' Wow was one hell of an experiencing ride'.
Reason for this edit: Should have added that I was speaking 'rhetorically' in this post.
-
Hello again talker...
You ask some very serious and personal questions... and I am not quite sure whether anyone else could answer them for you?
Perhaps the only way to answer such questions is to go into oneself and try to find answers which correspond with one’s conscience?
... According to Schopenhauer, people are sensitive to certain “things” because of former experiences which are associated with negative feelings which again are to be avoided from then on..
2. “One” does not ask for certain (medical) experiences, but because of inherited genetics, certain medical experiences can hardly be avoided.
3 No one would ask for multiple illnesses and/or problems, but because of inherited genetics it was - in the past - practically unavoidable... These days couples (future parents?) are given a much more varied choice whether or not they wish to “pass on” inheritable diseases...or not...
I cannot even suggest any answers to questions 4 & 5 & 6 & 7 & 8 & 9 & 11 because I am not quite familiar with "Zodiac", "reincarnation", "fate" etc. etc., in fact I have not come across any practical evidence for the existence of any of it, in short, it all seems to be very much connected with what one chooses to believe ... or not...
10. According to Schopenhauer, if we have conducted our life that there is nothing to be ashamed of, it should be hoped that, if we have tried our very best, it really should be good enough. If however a life has been conducted to be harmful to others, the harm has been done and the consequences are to be faced...
... All the above questions remind me a bit of Oscar Wilde’s “Dorian Gray” ... not a recommendable situation to be in, to say the least...
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Questions like:
1 - Why is one so sensitive to certain events?
2 - Does one really 'ask' for certain experiences?
3 - Who in their 'right' mind would even ask for multiple illnesses and problems?
4 - Is reincarnation true or not?
5 - Is anything regards the Zodiac and reincarnation factual?
6 - Is my 'Personally, I tend to believe that the a soul, is experiencing at least (12) twelve, simultaneous physical life manifestations' right or incorrect?
7 - Is my 'So, as I see it, what one is feeling / experiencing at this moment in time, is by our choice to experience it. However horrific, beautiful, dull, or exciting as it may be, in the experiencing, one needs to consider that ‘We’ our-self, may have actually written the script for the current drama involved in our life.', right or incorrect?
8 - To what extent 'do we / can we' control our fate?
9 - To what extent do we actually have' free will' ?
10 - If I'm responsible for any of my experiences, can I undo it?
11 - Do those souls that have passed on say ' Wow was one hell of an experiencing ride'.
I will give these a shot....
1. Certain events may reverberate through your life as lessons you need to learn or lessons you are teaching to someone else.
2. I think when you are talking with the universe you decide the things you will learn in your life lessons while in this plane.
3. I do not think it is a"right mind" set when you are deciding these things. Lessons that are learned by your soul can often be learned or taught quicker through experiencing difficult things in your life.
4. I think souls progress through different realms here on earth. I do not think our souls become animal souls. Maybe animal souls progress into humans souls.
5. I do not know enough about the Zodiac to give an answer here.
6. 12 physical lives may be a possibility. We do experience things in our lives on different levels as we learn throughout life.
7. Yes, I think we decide for ourselves.
8. We can make choices to change things in our lives, so yes fate can be changed
9. We have free will in all of our life decisions. However free will stops when it intersects with another person's life.
10. I think once you have experienced something as a life lesson and truly understood what it was all about you will not have to experience it again. If you want to change experiences I think you can by changing your decisions.
11. Oh hell yes. My soul will say it I am sure.
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Questions like:
1 - Why is one so sensitive to certain events?
2 - Does one really 'ask' for certain experiences?
3 - Who in their 'right' mind would even ask for multiple illnesses and problems?
4 - Is reincarnation true or not?
5 - Is anything regards the Zodiac and reincarnation factual?
6 - Is my 'Personally, I tend to believe that the a soul, is experiencing at least (12) twelve, simultaneous physical life manifestations' right or incorrect?
7 - Is my 'So, as I see it, what one is feeling / experiencing at this moment in time, is by our choice to experience it. However horrific, beautiful, dull, or exciting as it may be, in the experiencing, one needs to consider that ‘We’ our-self, may have actually written the script for the current drama involved in our life.', right or incorrect?
8 - To what extent 'do we / can we' control our fate?
9 - To what extent do we actually have' free will' ?
10 - If I'm responsible for any of my experiences, can I undo it?
11 - Do those souls that have passed on say ' Wow was one hell of an experiencing ride'.
I will give these a shot....
1. Certain events may reverberate through your life as lessons you need to learn or lessons you are teaching to someone else.
2. I think when you are talking with the universe you decide the things you will learn in your life lessons while in this plane.
3. I do not think it is a"right mind" set when you are deciding these things. Lessons that are learned by your soul can often be learned or taught quicker through experiencing difficult things in your life.
4. I think souls progress through different realms here on earth. I do not think our souls become animal souls. Maybe animal souls progress into humans souls.
5. I do not know enough about the Zodiac to give an answer here.
6. 12 physical lives may be a possibility. We do experience things in our lives on different levels as we learn throughout life.
7. Yes, I think we decide for ourselves.
8. We can make choices to change things in our lives, so yes fate can be changed
9. We have free will in all of our life decisions. However free will stops when it intersects with another person's life.
10. I think once you have experienced something as a life lesson and truly understood what it was all about you will not have to experience it again. If you want to change experiences I think you can by changing your decisions.
11. Oh hell yes. My soul will say it I am sure.
Many thanks kitkatz for your input, especially "point 9" : "We have free will in all of our life decisions. However free will stops when it intersects with another person's life." ... Many philosophers have stated, that as soon as people start to consider "point 9" seriously, that is the start of civilized society ...
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"We have free will in all of our life decisions. However free will stops when it intersects with another person's life." ... Many philosophers have stated, that as soon as people start to consider "point 9" seriously, that is the start of civilized society ...
The problem with free will is in those persons with no common sense. They that care not for their fellow man, but only for themselves.
Thus, we have Politicians.
I don't think I like which way this is headings. So I'll bow out.
Take Care,
Charlie B53
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"We have free will in all of our life decisions. However free will stops when it intersects with another person's life." ... Many philosophers have stated, that as soon as people start to consider "point 9" seriously, that is the start of civilized society ...
The problem with free will is in those persons with no common sense. They that care not for their fellow man, but only for themselves.
Thus, we have Politicians.
I don't think I like which way this is headings. So I'll bow out.
Take Care,
Charlie B53
Hello CharlieB53,
Could you please help me to figure out what you have written ?
Thanks from Kristina.
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LOL
I was agreeing with your 'Point 9'.
I must have jumped a bit too far too fast.
Many believe that a civilized world' needs Government'. I'm not so sure. A truely 'Civilized' person will consider how his/her actions impact his/her fellow man and will ensure NOT to negatively impact anyone. That would only occur in a 'Perfect World'.
An 'UN-civilized' person cares not for anyone but themselves. However when this UN-civilized person feels imposed upon they they immediately want redress. Want Laws and Courts to impose penalties on whom they consider the 'oppressor' Thus we have Governments and Politicians, which for the most part really haven't made a lot of improvement.
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Hello Charlie,
I do appreciate your explanation, it makes it much more comprehensible.
It is amazing that - as you write - many people believe that a "civilized world" needs Government,
whereas many philosphers have explained in detail, that, the more people become aware
and ready to be educated (and as a result civilized), the less Governments are necessary...
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Exactly. People fail to realize the immense costs of Government. All these people now within the 'Ruling Elite', no longer employed in trade or production. The salaries, and benefits are imposed, increasing an already serious burden of taxes on the rest of the people. Spending 'public tax money' on needless 'projects and measures', all to get more and more tax money spent within their own district, overdrawing an already obscene budget, increasing this massive 'public' debt for generations yet to be born. Further devaluating the currency and actually lowering the quality of life of the general public that they pretend to serve.
I hate to start quoting scripture, but I'll make the exception here.
John, the Baptist, the Harbinger. Depending on which version of the Bible you read. John was quoted in the Aquarian Gospel of Jesus the Christ;
24 "Your priests have bound upon the people burdens far too great to bear; they live in ease upon the hard earned wages of the poor."
25 "Your lawyers, doctors, scribes are useless cumberers of the ground; they are but tumors on the body of the state;"
26 "They toil not, yet they consume the profits of your marts of trade."
27 Your rulers are adulterers, extortioners, and thieves, regarding not the rights of any man."
This was two thousand years ago, and yet his words are still true today.
I better stop right here as this is beginning to open a whole can of worms that may be better addressed in a Political/Religious forum.
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Exactly. People fail to realize the immense costs of Government. All these people now within the 'Ruling Elite', no longer employed in trade or production. The salaries, and benefits are imposed, increasing an already serious burden of taxes on the rest of the people. Spending 'public tax money' on needless 'projects and measures', all to get more and more tax money spent within their own district, overdrawing an already obscene budget, increasing this massive 'public' debt for generations yet to be born. Further devaluating the currency and actually lowering the quality of life of the general public that they pretend to serve.
I hate to start quoting scripture, but I'll make the exception here.
John, the Baptist, the Harbinger. Depending on which version of the Bible you read. John was quoted in the Aquarian Gospel of Jesus the Christ;
24 "Your priests have bound upon the people burdens far too great to bear; they live in ease upon the hard earned wages of the poor."
25 "Your lawyers, doctors, scribes are useless cumberers of the ground; they are but tumors on the body of the state;"
26 "They toil not, yet they consume the profits of your marts of trade."
27 Your rulers are adulterers, extortioners, and thieves, regarding not the rights of any man."
This was two thousand years ago, and yet his words are still true today.
I better stop right here as this is beginning to open a whole can of worms that may be better addressed in a Political/Religious forum.
Hello Charlie,
... it just goes to show that not that much has changed in c.a. two thousand years time...
... and even before that time, one can read (between the lines) similar thoughts by Sokrates (~470/469 – ~399 BC)
and Plato (~428/427 or 424/423 – ~348/347 BC) about the very same matters...
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.................. (few month shy of 90) is irrelevant,.............
Good Lord willing and the creek don't rise, be seeing ya.
I never would have taken you to be near that old. I guess it is just further proof that wisdom is acquired through age.
Creeks were out of their banks here last week.
This week they are frozen.
Mid-Missouri. They have a saying about weather changing.
When I read in the newspaper about events of this nature:
Creeks were out of their banks here last week.
I do invoke and plead to the Universe that there is enough hardships and deaths by mankind, and to vent what it will, but please spare the death part from your overflowing waters.
Did call a friend in your area, only their mothers basement was affected.
Edited: Took red color out of post- kitkatz,Admin
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Questions like:
1 - Why is one so sensitive to certain events?
2 - Does one really 'ask' for certain experiences?
3 - Who in their 'right' mind would even ask for multiple illnesses and problems?
4 - Is reincarnation true or not?
5 - Is anything regards the Zodiac and reincarnation factual?
6 - Is my 'Personally, I tend to believe that the a soul, is experiencing at least (12) twelve, simultaneous physical life manifestations' right or incorrect?
7 - Is my 'So, as I see it, what one is feeling / experiencing at this moment in time, is by our choice to experience it. However horrific, beautiful, dull, or exciting as it may be, in the experiencing, one needs to consider that ‘We’ our-self, may have actually written the script for the current drama involved in our life.', right or incorrect?
8 - To what extent 'do we / can we' control our fate?
9 - To what extent do we actually have' free will' ?
10 - If I'm responsible for any of my experiences, can I undo it?
11 - Do those souls that have passed on say ' Wow was one hell of an experiencing ride'.
I will give these a shot....
1. Certain events may reverberate through your life as lessons you need to learn or lessons you are teaching to someone else.
2. I think when you are talking with the universe you decide the things you will learn in your life lessons while in this plane.
3. I do not think it is a"right mind" set when you are deciding these things. Lessons that are learned by your soul can often be learned or taught quicker through experiencing difficult things in your life.
4. I think souls progress through different realms here on earth. I do not think our souls become animal souls. Maybe animal souls progress into humans souls.
5. I do not know enough about the Zodiac to give an answer here.
6. 12 physical lives may be a possibility. We do experience things in our lives on different levels as we learn throughout life.
7. Yes, I think we decide for ourselves.
8. We can make choices to change things in our lives, so yes fate can be changed
9. We have free will in all of our life decisions. However free will stops when it intersects with another person's life.
10. I think once you have experienced something as a life lesson and truly understood what it was all about you will not have to experience it again. If you want to change experiences I think you can by changing your decisions.
11. Oh hell yes. My soul will say it I am sure.
Hello kitkatz , were I to be 'grading' your answers to the posed rhetorical questions, you would have received a very good and high rank number. Now that you've stopped blushing, I'll venture on.
While my post might seem out of place here, to me it was not out of place.
Well maybe a bit much for the IHD forum that is strong regards kidney health and light on metaphysical aspects.
Did notice one recent new IHD member had objected to 'bringing in the God mentions'.
Were I, PC, I would shun mentioning energies of prayer, and God things. While I don't emphasize prayer, and God things, no way will I totally avoid using them when I feel they need to be used.
Where was I !
Oh yes, as I read through old posts, reading of how 'hurting' so many are, I do at times rattle my beliefs chain, on just 'How' it all fits together.
There were 11 posed questions, yet to me, each question (in my mind's eye) is striving for how a posters comments fits into the overall scheme of that persons life and the metaphysical aspects as I'm aware of it!
Ha, will wrap it up as I'm well into the Talker mode, and 'who' is actually ready for that!
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I have IgA Nephropathy and am on PD for three years now. I still urinate quite a lot, and although my kidneys do not filter as well as they need to the residual kidney function is helpful and something my doctors want to continue. Have been on lasix (a strong diuretic) ever since I started dialysis, although I usually do not take it during the winter. Oddly enough I never have any fluid retention unless I am out in the heat for extended periods of time. Because I still urinate a lot I am able to drink more fluids and stay well-hydrated, which is good for my kidneys. It also means my clearance is higher on PD than it would be if I didn't urinate. Because I still put out about 2000ml per day my dialysis prescription is still the same as it was 3 years ago and I am on the lowest concentration of dextrose at the minimum rx for PD exchanges. I am able to skip dialysis about 1 or 2 times per week without any adverse side effects.
From what my doctors tell me, my residual function is making my life on PD much easier to handle. I still take Lisinopril, an ACE inhibitor that helps us IgA patients retain some kidney function and also helps preserve the peritoneum.
I think you might be onto something with the idea that not doing as much dialysis could stimulate the kidneys to work harder, although I don't think that necessarily means they will filter adequately. I do notice that when I skip a day of dialysis I urinate a lot more. I suppose it's because the dialysis isn't there to remove any excess fluids, so my kidneys take up the slack. I wish that meant they'd filter like they're supposed to, but I know that if I stopped dialysis I'd be miserable after a while. It might be a few weeks or a few days, but I'd feel the difference.
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I have IgA Nephropathy and am on PD for three years now. I still urinate quite a lot, and although my kidneys do not filter as well as they need to the residual kidney function is helpful and something my doctors want to continue. Have been on lasix (a strong diuretic) ever since I started dialysis, although I usually do not take it during the winter. Oddly enough I never have any fluid retention unless I am out in the heat for extended periods of time. Because I still urinate a lot I am able to drink more fluids and stay well-hydrated, which is good for my kidneys. It also means my clearance is higher on PD than it would be if I didn't urinate. Because I still put out about 2000ml per day my dialysis prescription is still the same as it was 3 years ago and I am on the lowest concentration of dextrose at the minimum rx for PD exchanges. I am able to skip dialysis about 1 or 2 times per week without any adverse side effects.
From what my doctors tell me, my residual function is making my life on PD much easier to handle. I still take Lisinopril, an ACE inhibitor that helps us IgA patients retain some kidney function and also helps preserve the peritoneum.
I think you might be onto something with the idea that not doing as much dialysis could stimulate the kidneys to work harder, although I don't think that necessarily means they will filter adequately. I do notice that when I skip a day of dialysis I urinate a lot more. I suppose it's because the dialysis isn't there to remove any excess fluids, so my kidneys take up the slack. I wish that meant they'd filter like they're supposed to, but I know that if I stopped dialysis I'd be miserable after a while. It might be a few weeks or a few days, but I'd feel the difference.
Hello beckums70 and many thanks for your positive thoughts.
... since starting my dialysis-treatments in December 2014, I have continued to learn as much as I possibly can (as a patient) about my treatments and I have noticed, that when being in need of dialysis-treatments, it is much better for me to stay "on it" for as long as possible, in my case 3 times a week for 4 hours each time.
I have also continued with my kidney-friendly vegetarian diet and still go for my regular walks and all that keeps my body (and intellect) as healthy and as positive as I possibly can be under the circumstances. Being in need of dialysis-treatments, it seems to matter quite a lot for my well-being to try hard to combine my dialysis-treatments with a very healthy life-style in order to create a much better quality of life i.e. reading interesting books, learning new pieces on the piano and enjoying life as much as is possible under the circumstances.
... One of my favourite (political) poets (Nazim Hikmet) wrote once from his prison-cell:
Being captured is beside the point : The point is not to surrender...
Kind regards and best wishes from Kristina. :grouphug;
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P.S. Since I habe brought Nazim Hikmet (1902 - 1963) into this discussion above, I feel that I should add that Nazim Hikmet has done nothing, except writing very powerful poetry
and for doing so, he was incarcerated for many years in prison... His poetry has always inspired people to fight back against political and social oppression and that explains his prison-sentences... But ... since he also suffered from a very disabling heart disease, I, as a chronic kidney-disease-sufferer (chronic proliferative glomerulonephritis), have always taken his poetry as an inspiration to carry on with what I wanted to achieve despite my shortcomings as a kidney-disease-sufferer... i.e. studying at University, writing my own poetry, having exhibitions with my paintings, learning how to read music and to play the piano etc... :grouphug;