How do nephrologists treat kidney patients?

[RichardMEL]

Jenny your post reminds me of something one of my D nurses said awhile ago.. basically "We've seen it all. Whatever you think we haven't seen - don't believe it" - and well after over 3.5 years in that place I'm beginning to see that. Now don't get me wrong *I* don't see it (thank God!) - they always pull curtains or put "special needs" folks in isolation rooms, or whatever but like Jenny says they're less interested in her girlie bits than doing their jobs to make her better. At some pioint you just have to realise that that is all part of what we have to deal with.

Heck maybe I'd quite enjoy it if a nurse remarked on my privates - in a positive way of course - and if she was female and hot!!!! OK, I can dream can't I?!! 

[kristina]

Quote; I am very disapppointed by the audacity of KICKSTART trying to imply I am not telling the truth.
She has made fun of my situation in the past & later denied it.
She has not been telling the truth about another matter either.

Kristina quit while you are ahead , before i really DO start to speak my mind . I have had the good decency to say i will not post replies to your posts in the future as i find them so far out there ! So please revert from directing the attention to me and by doing that manage to divert the many questions asked of you . I can expect many on the forums from abroad to take you at your word as they dont have any first hand knowledge of the NHS but YOU forget , i do !!!! This is my last word on the subject and any other subject you write about !

My efforts to exchange experiences with other patients
have been ridiculed, manipulated and bullied here on IHD.
 
I am very shocked that KICKSTART tries to imply I am not telling the truth.
Why should I not tell the truth? I came to IHD to exchange experiences with other ESRF-patients
& I believe it is most important to tell the truth. Life is too short & ESRF shows us the fragility of our lives.

Everything I have stated on IHD is true. I have not had any constructive NHS-medical care for over 30 years,
& that is why I suffered cerebral haemorrhages, chronic osteomyelitis, a stroke and now ESRF.
My kidney function is only 10% and I do not receive any NHS-medical care.
I have to pay privately for every bloodtest & I only can afford bloodtests of Creatinine, Urea, Sodium & Potassium
which I decipher myself with the help of the Internet.

An acquaintance of mine, whom I asked for help, had a look at IHD & my posts
& they thought I asked a very valuable question when I tried to find out which NHS-Dialysis-Centre KICKSTART attends,
so that I might have a chance to avoid this horrible NHS-Dialysis-Centre, if & when I need Dialysis myself.

KICKSTART deliberately misconstrued my question, avoided answering & continued to bully me.
This acquaintance of mine told me that cyber-bullies often live a very isolated existence,
they are often avoided by their own family & use the anonymity of the Internet to bully others
& take revenge on other people for the inadequacies of their own existence.
 
This acquaintance of mine (and yes, they also have problems to receive medical care on the NHS)
thought it odd that Cariad "diagnosed" me & thought I should have a "therapy".
Such a recommendation sounds particularly odd, since Siegmund Freud's
ulterior motives have been so publicly exposed in recent years.
I came to IHD to exchange experiences with other ESRF-patients,
not to be "diagnosed" by people I have never met or seen.

I was informed about cyber-bullies who try to manipulate
& embarrass genuine & vulnerable people on Forums like IHD.
The gift of these bullies is their deviousness which allows them to prosper
& they certainly come into their own by using the anonymity of computers to bully others.
 
If it is not possible to be an IHD-member without being bullied,
targeted or being ridiculed, then I cannot afford to be a member any longer.
My kidneys only function 10%  & I need every possible help to survive
& I certainly must avoid unnecessary aggravation.
 
This acquaintance of mine thought it odd that no one of the IHD-owners/monitors
stopped KICKSTART bullying me & picking on me over such a long time.
They thought it odd that no one gave me the benefit of the doubt
or at least check-up on my well documented NHS-history.
 
If it is not possible to be an IHD- member without being bullied,
targeted or being ridiculed, then this is not the site for me.
I need a site where ESRF-patients have a chance to exchange
their honest experiences without any fear of being bullied or ridiculed.
My kidneys only function 10%  & I need every possible help to survive
& I need to find a way to receive medical care in my ESRF.
 
If it is not possible to be an IHD-member without being bullied, then
I would like to donate the $30 which I had already paid for my 2nd year of IHD-Premium-membership
to the excellent work of anti-war activist & Vietnam-veteran Mr. Ron Kovic.
 
Thank you, Kristina.
 

[Romona]

Kristina, I would hope that you stay and continue to ask questions. I wish I could help more. I do think there are many people that could offer some suggestions. I am not familiar with NHS. From reading other threads, I think that you have tried contacting many groups to assist you. You have managed to preserve your kidney function for many years. I hope that you can find some help soon. I may not be able to help you much, but I do offer you moral support.

[Sunny]

I am so sorry you are feeling this is no longer a good place for you to get information.
I wish you would stay anyway and do your best to ignore unhelpful posts. Most of us do our best to provide helpful support and I think we all worry about your health issues. At times, it's not easy to provide useful analysis because we only read part of what's going on in your life. Everyone's life is so much bigger than what is posted on this site. I wish you the best in getting medical support in your future. You have done well for yourself all of these years in trying to stay healthy, but there comes a time when very low functioning kidneys just wear out after straining to work so hard for so many years. It's sounds like that is what you have run up against at this stage of your health issues. Give yourself a pat on the back for lasting this long. I'd say you've done very well. Good luck.

[cariad]

KICKSTART deliberately misconstrued my question, avoided answering & continued to bully me.
This acquaintance of mine told me that cyber-bullies often live a very isolated existence,
they are often avoided by their own family & use the anonymity of the Internet to bully others
& take revenge on other people for the inadequacies of their own existence.
 
This acquaintance of mine (and yes, they also have problems to receive medical care on the NHS)
thought it odd that Cariad "diagnosed" me & thought I should have a "therapy".
Such a recommendation sounds particularly odd, since Siegmund Freud's
ulterior motives have been so publicly exposed in recent years.
I came to IHD to exchange experiences with other ESRF-patients,
not to be "diagnosed" by people I have never met or seen.

I was informed about cyber-bullies who try to manipulate
& embarrass genuine & vulnerable people on Forums like IHD.
The gift of these bullies is their deviousness which allows them to prosper
& they certainly come into their own by using the anonymity of computers to bully others.

Kristina, where did I diagnose you and with what? And I must say that I find it the height of hypocrisy that you would say I diagnosed you, and then go on to say Kickstart or I (I cannot tell to whom you are referring in your rambling post) are cyberbullies and that your "acquaintance" gave you a full psychological profile on what that means about our lives. I am entirely certain that I have never met your "acquaintance". It is laughable that you say you do not come to IHD to be diagnosed by people you've never met, then proceed to do that very thing to others.

It is not my job, nor any other member's, to solve your problems for you and take up your cause. I was interested in hearing more about your claims, but you balk at clarification questions. As the daughter of a German/Russian Jew, I personally find it ridiculously offensive that you compare your situation to living under Hitler.

Did it ever occur to you that doctors are people too, and that your attitude toward them could explain a lot about their desire to help you or not?

It is becoming increasingly obvious to me that you do not want suggestions on how to solve your problem, but rather want to use this forum as a soapbox to spew anti-NHS rhetoric. I carefully explained my suggestion that you see a counselor of some sort, but it seems that you will continually find ways to feel victimized and persecuted. Therefore, I also will refrain from offering any further comment or advice to you, and I trust you will show me the same courtesy.

I will close by vehemently renewing my suggestion that you get to a nephrologist and/or A&E immediately.

[KICKSTART]

Quote from Kristina ; KICKSTART deliberately misconstrued my question, avoided answering & continued to bully me.
This acquaintance of mine told me that cyber-bullies often live a very isolated existence,
they are often avoided by their own family & use the anonymity of the Internet to bully others
& take revenge on other people for the inadequacies of their own existence.

Answer from KICKSTART ;     ROTFLMAO   Analize that !

[Romona]

Several people suggested help and counciling to Kristina to overcome past experiences. Somethings are hard to get over. I do think that there are cultural differences that I don't understand without knowing her personally. If you read some her posts on other threads she has appealed to advocacy groups. The stroke she had may have made things harder for her to be understood. I would not want to be in her shoes and going through this.

[Lisa]

I am new and after reading this entire thing 2x so I fully understood before I spoke all I have to say is...

 

It is becoming increasingly obvious to me that you do not want suggestions on how to solve your problem, but rather want to use this forum as a soapbox to spew anti-NHS rhetoric

[-Lady Noir-]

Lisa.. spot ON. 

[chiefsfan301]

Kickstart get off the floor before you hurt yourself! (ROTFLMAO)

[RichardMEL]

I'm not too sure that I want to keep feeding the flames of this thread, but I have had a thought about this whole thing which I thought I would share.

Kristina shared the email she sent to Dr. John Agar, who is here in Australia requesting help. I am not sure if she got a response, but the thought came to me the other day that really how could ANY doctor respond to that note, from someone in another country no less, in a serious way? She's given a few scant details about her medical situation, but he does not have access to her history, test results, scans - anything - to make any kind of informed and qualified opinion about her situation. I don't think ANY doctor would want to proffer an opinion on a patient they do not have a full history on - and clearly in Kristina's case there's a LOT to absorb over decades.

I don't know about the whole "cyberbullying" thing - I'm honestly sorry Kristina feels that way - for my point of view I think there's a general feeling of frustration more than anything else. Many people have tried to give constructive suggestions that seem to be ignored in favour of yet another rant about the NHS and it's failures. I think that Kristina needs to focus on her own health - that is paramount - and stressing about events in the past and a fear of poor treatment(which may or may not be justified - I am not in a position to comment on that) - but all this stress is NOT going to help her kidney function and if she's refusing treatment this is even more worrysome. Kristina claims to be doing everything she can to get treatment for her problems, yet she also admits to refusing things like the biposy. At some point you have to take stock of your own decisions - the system can only do so much if you're unwilling to work with it.

Remember these opinions are based all on what Kristina herself has written in various posts - we have no way of knowing the full story though.

I also note Kristina's latest post against KS and Cariad - yet she didn't answer my own polite question about her previous post - I'm still trying to figure out what exactly she meant by this quote:

Richard, why don’t you check-up in Australia?
A group of patients deal with health-care accidents in Australia

I'd really like to know. This is not being a bully - this is an honest and sincere question.

[okarol]

None of us can truly know what's going on with another person life. I do agree that making one's way through medical problems can be a lonely and frustrating road, and I am not even the patient. We are often highly sensitive to our own sufferings but oblivious to the pain of others. I am hoping I can be kind, understanding, empathetic, compassionate, and be encouraging to others, even when I am dealing with my own challenges. I love you guys.

[kristina]

Carol: your sentiments are very much appreciated and I thank you for them.
Richard: the Australian group I was referring to is called: “Medical Error Action Group”.

Two weeks ago I talked to a volunteer about my struggles and I showed him the above. He was surprised that some IHD-members thought I needed counselling. He thought I needed a reliable health service much more urgently. He was surprised to read how some IHD-members tried to malign what I said whilst our UK-newspapers can be read everywhere in the world & they regularly report about patients undergoing similar experiences. He agreed that my only chance to receive medical care in my ESRF is to continue my applications for medical help in other European countries, continue to pay for my blood tests here and hope for the best. He agreed that patients with a chronic disease who try hard & do all the right things, are not encouraged or assisted on the NHS anymore.
He understood my concern to be brought to a NHS-hospital in an emergency with my ESRF, because when I was hospitalized at St. Thomas Hospital with the stroke I never saw a consultant whilst being there. I was told the consultant was on holiday and because of this I was only seen by a registrar & some students. That is why the medical reason for my stroke and my Systemic Lupus (SLE/MCTD) was never diagnosed in the UK even though St. Thomas Hospital is well known for its Lupus-Clinic.
 
He understood my concern of being in a NHS hospital with my current ESRF & not being seen by a consultant.
He assured me that it is normal practice to save money (as St. Thomas Hospital did) by stating the patient suffered “parathaesiae” and not a stroke. Doing this, stroke-rehabilitation does not need to be provided on the NHS. I told him I did not understand that so many millions are spent every year on NHS-health care & he said that the money often does not reach patient-care &  gets often swallowed up by administration etc.
He also came across that NHS-GP’s treat patients with chronic diseases badly to make sure they won’t come back again and that is why I was unable to be seen by a NHS-GP for over six years now.

He understood that with my kidneys only functioning 10% I might be able to travel for health care, but I am much too unwell to move. He seemed very honest with me and I believe him because he explained everything in a very logical way.

I expressed my hope that after the election there might be some change, but he thought it very unlikely because NHS-healthcare has not even been mentioned during this election campaign & there might be further cuts and hospital closures etc. He explained everything very logically & I am very grateful because I could not comprehend.
 
Talking to him has reassured me that the problem is not with me.

[MooseMom]

Kristina, many, many people with chronic illnesses...especially ESRD...suffer from anxiety and depression and would benefit greatly from counselling.  There is a lot of medical literature on CKD and depression, so much so that this malady is seen as a common side effect of renal disease.  So if someone here mentioned couselling as something that might be helpful to you, please do not take that as a personal put-down.  I am a bit skeptical of anyone with a medical background who is surprised that such a suggestion was given to you.

I am also skeptical about this volunteer to whom you allude.  Who is this person exactly?  You seem to have been let down by so many in the medical field that I can't help but wonder about the qualifications and/or motives of this "volunteer".  If you trust him, then go ahead and follow his advice and try to get medical help in another EU member nation.  The World Health Organization rates France's health care system as the best in the world, so it might be an idea to explore the possibility of treatment there.

While I can understand your frustrations, perhaps your energies (which, I assume, are ever diminishing) are better directed toward getting treatment than toward trying to justify your position regarding the NHS.  On the other hand, have you contacted your MP?  I write to my congresspeople all the time!

[murf]

The best aspect of IHD is that someone can have a rant and a rave without any discriminations. So if someone in our community has a beef with their neph, then let them get it off their chest without fear of contradiction from other members. Once i wrote that I mucked a my friend's holiday as I constantly vomited on a houseboat trip. Someone replied that it was just sea sickness and nothing to do with my renal disease. That hurt. For the record, I just love my neph and trust him completely.

[KICKSTART]

She's back ? What prompted that i wonder?

[MooseMom]

kristina, my apologies if you have posted this information in this thread (I've reread it all and couldn't find the answer), but why do you not have a GP?  Oddly enough, HMOs in the US (and I have an HMO, so I know this to be true) work in much the same way as the NHS in that you go through a primary care provider (your GP) to access specialists (consultants).  Your GP should be able to help you find a nephrologist with whom you can work.

I understand that we all need to rant without fear of retribution on IHD...fewer people rant more than I do.  But even I recognize that for the most part, IHDers are pro-active people and want to help a fellow member sort out a problem.  Kristina's difficulties stem from much more than a neph she doesn't get on with, and we recognize that ranting on IHD might make her feel better for a while, but not in any way that is truly worthwhile.  The bottom line is that she needs treatment, feels she is not getting it, and we're trying to help her find an answer to that.  And while we are all discussing the pros and cons of the NHS, our fellow IHDer is probably getting sicker and sicker. 

My neph is a human Eeyore.

[RichardMEL]

So you've found a friend who supports your point of view.. that's great, but I don't see how it really helps your struggle. You've still not really addressed the core issues, to me anyway, of why you won't accept a biopsy and things like that which would only (surely!) help them to help YOU.

I hope you can get better treatment. It still seems odd that our other UK residents do get specialist care. It might not be great (I am thinking of poor KICKSTART here) but it does seem that things to (eventually) happen under the NHS yet you claim to be left out in the dark with no support? I wonder how much of that is to do with your refusal to co-operate with things like getting a biopsy. As I wrote a few months back it's very hard for them to help you within the confines of the system if you won't let them do some of the things they want.....

[talker]

What an interesting study of the Pro and Cons, interpretations, misinterpretation, communications, compassion and personalities. Yes, I actually do read some topics from start to endings.
Only a few rare Souls will understand 'why' I do so.

[kristina]

What an interesting study of the Pro and Cons, interpretations, misinterpretation, communications, compassion and personalities. Yes, I actually do read some topics from start to endings.
Only a few rare Souls will understand 'why' I do so.

Hello talker,
I have noticed that you have specialized in taking up old - and in some cases mercifully forgotten - posts of IHD-members like myself
and I would like to tell you now that I do not appreciate your action because it hurts me very much.
I refer to my post: "How do nephrologists treat kidney patients" from 1. March 2010, almost 6 years ago.
Being pre-dialysis in 2010 was an extremely hard time for me to struggle through and it is not nice to experience now
that another IHD-member (yourself) re-heats these hurtful experiences of mine and throws them at me again after all these years.
Fortunately I have had a chance to move on but I would very much appreciate if you can refrain from re-heating such hurtful experiences of mine in the future.
Your cooperation in this matter would be very much appreciated.
Kristina.

[Charlie B53]

Kristina,

I really don't believe that talker meant to 'throw' anything in your face.  Only that the thread was long and convoluted and never had a resolution posted. 

Somehow you have managed to overcome a terrible situation and move on.   Others may learn something from you but the thread simply died off.

I am sure that most are glad that you are managing and are still with us today.

Take Care,

Charlie B53

[kristina]

Kristina,

I really don't believe that talker meant to 'throw' anything in your face.  Only that the thread was long and convoluted and never had a resolution posted. 

Somehow you have managed to overcome a terrible situation and move on.   Others may learn something from you but the thread simply died off.

I am sure that most are glad that you are managing and are still with us today.

Take Care,

Charlie B53

Hello Charlie, I have read your thoughts with great dismay and I am very disappointed that - as an IHD-moderator and as a gentleman - you gave ”talker” the benefit of a doubt – but unfortunately not to me ... and I still wonder why these traumatic experiences of mine should be of any interest to “talker”, unless there is some sad sensational curiosity behind it all?
And furthermore: Why should “talker” be allowed to pick on me? Please bear in mind that this is already the second time that “talker” has taken up one of my ancient threads ...
... But why?  After all, “talker” does not appear to suffer from a very rare inherited variation of SLE/MCTD etc. ... and “talker” does not appear to have come across any hazardous life-dangerous problems with medics either... ?
... Nevertheless ...  giving the benefit of a doubt etc. : if anybody here happens to suffer - just like myself - from a very rare inherited variation of SLE/MCTD with several medical catastrophies as a result ... and if, during their enormous struggle to survive they happen to come across abusing doctors who, for reasons of their own, try to misuse a humanitarian health-system for their own warped pleasure, all the appropriate authorities should be made aware of this ...  and there may be a very positive outcome of it all, if documented evidence can be provided for the investigation ...
... Fortunately, in my case, all the necessary documented evidence was fully provided for the investigators ...

[cassandra]

Dear Kristina please don't be dismayed or disappointed by posts which are trying to be nice and complementary. I'm sure nobody is/out to hurt you, and as Charlie said already are happy you are still here, and left an interesting thread.

Take care my darling, love, Cas

[talker]

Interestingly, bringing back 'old threads' was actually part of my early posts.

Wow, six accusations leveled against me for reviving an old post thread.

Here is what I had said, regards that thread:

from: talker on February 14, 2016, 02:39:37 PM
What an interesting study of the Pro and Cons, interpretations, misinterpretation, communications, compassion and personalities. Yes, I actually do read some topics from start to endings.

I've revived many old threads, and some were greeted with 'needed to be brought back, glad you found it' comments.

Am sorry Kristina for any hurt caused, by my reviving an old thread.
There are no hidden undertones or intents to cause pain, to any poster, in any thread.

[Charlie B53]

Kristina,

I am sorry that you feel that I failed to give you the benefit of doubt.   I made it very clear that somehow you did manage to overcome a very difficult situation.   Only you know how you accomplished that, and I am sure it took serious determination and effort.

Experiences such as yours can be a learning tool for others that lack willpower and determination.

Unable to know one another except for what little we each post, I somehow sense that past events, or persons  has given you cause to feel ?? persecuted??? Is that a good word?  Whatever the reasons, no one should be traumatized by others.  No excuse.  Such experiences have lasting effects causing much ?? suspicion? distrust of others motives?  History can't or shouldn't ever be forgotten or we may be doomed to repeat it.   How you manage to overcome situations, and fears, those are the commendable traits that you have accomplished.  You have chosen to keep those accomplishments to yourself.  That is your choice and do not let anyone force you do do, or say, anything that you are not comfortable with.

Take Care,

Charlie B53