A theory of recovery from Dialysis.

[KarenInWA]

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

[kristina]

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.

[Riki]

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.

[amanda100wilson]

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.

[GraphicBass]

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

[kristina]

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...

[Traveller1947]

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.

[fearless]

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.

[kristina]

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.

[amanda100wilson]

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.

[kristina]

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.

[fearless]

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.

[kristina]

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.

[fearless]

i hope you go on forever without dialysis

[MooseMom]

  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?

[KarenInWA]

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

[MooseMom]

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"?

[KarenInWA]

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

[MooseMom]

Yes, I prefer food that has met with fire...

[MaryD]

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.

[natnnnat]

i hope you go on forever without dialysis

HEAR HEAR!

[kristina]

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.

[MooseMom]

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?

[kristina]

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.

[MooseMom]

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.