A theory of recovery from Dialysis.

[amanda100wilson]

Kristina, I never had any problems registering with a GP.

[kristina]

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.

[MooseMom]

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. 

[kristina]

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...   

...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.

[kristina]

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.

[jeannea]

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.

[kristina]

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.

[Riverwhispering]

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 

[kristina]

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.

[talker]

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

[Hemodoc]

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.

[kristina]

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...?

[obsidianom]

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.

[kristina]

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.

[obsidianom]

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.

[talker]

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

[obsidianom]

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 .

[Hemodoc]

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.

[cdwbrooklyn]

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?

[Hemodoc]

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.

[jeannea]

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.

[kristina]

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.

[obsidianom]

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.

[cdwbrooklyn]

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.

[obsidianom]

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.