How do nephrologists treat kidney patients?

[Malibu]

The Neph we had up until a week ago treated us very poorly and his office staff were the rudest people I have run across in a very long time.  Mind you we were paying in CASH when we became patients there.

We dumped Dr Dumdum as soon as we could and interviewed a new Neph, discussed our concerns and issued with the previous guy and his office.  This new Dr actually looked at us and discussed things with us!  The other guys all but said NO, YOU don't get to talk and I'm only going to ACT like I am looking at your chart.  He didn't even know what medicines my husband was on.  My goodness.......it was awful.  But now this new guy shows promise. 

Twirl -- it worked out!!!! 

[RichardMEL]

I do not allow you to make fun about my situation!

I do not believe anyone here has "made fun" about your situation. Many people have tried to offer helpful suggestions and support. I don't see anyone making light of your situation - I certainly haven't. Yes, I questioned some things and made some suggestions from my point of view - but that's just an opinion - for right or wrong. Certainly not making fun.

(oh and Ramona - I DO appreciate your point about me picking apart kristina's post and making comments. Yes, perhaps I could have phrased things better I absolutely accept that and I'm sorry if kristina was offended - that wasn't really my intention - I guess I wanted to stress my view (and it's just an opinion, and I specifically said I've never been treated under the NHS so clearly I have very much an outsiders viewpoint) that I feel perhaps kristina is being her own worst enemy at this point with a distrust of the system and professionals whoose job it is to look after her.. and that's upsetting because clearly she is someone who NEEDS help - and quickly).

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

I'm sorry but I actually don't understand what you're saying here. I'm not trying to pick apart your post to be mean or anything. I seriously don't understand what you're suggesting. I have been treated by the Australian medical system (public) for all of the 39 years of my life so far, with obviously much more since I was diagnosed 17 or so years ago.

If you're suggesting that I don't know what I'm talking about with regards to the Australian system.. well I can't speak for ALL Australians and how they are treated (let's not forget poor Jessup's dad and what he went through in Darwin) but I most certainly can relate the care that I and my close family have had here - and I've never experienced anything close to what you've suggested.

I'd be happy to respond further if you explain more clearly just what you meant. Again I'm not making fun I'm honestly confused by what you're saying to me.

[Deanne]

Kristina,

I'm sorry you've had such a rough time of it. The past is gone. A lot has changed since 1971. Medical technology has changed. Processes have changed. No one can set the clock back to undo the wrongs you've lived through.

You mentioned that you're Muslim. I don't know anything about living as a Muslim woman, but I suspect it's a very conservative lifestyle, and it might be that part of the problems you're experiencing are due to cultural misunderstandings. Is it possible that part of the problems are due to cultural differences? The people you've worked with in the medical community might not understand your conservative needs and you don't understand their less conservative ways. Can you find another Muslim woman who can recommend a nephrologist that she's comfortable with? Perhaps a Muslim nephrologist?

The good news is that the future is still available to you. Is it possible for you to let go of the past to give yourself a better future? If you can, put everything that happened behind you, make an appointment with a nephrologist and talk to him with the attitude of "This is where I am today. Where do we go from here?" Don't worry about what he's wearing (black leather jacket, etc). If your eyes can't handle the lighting in the medical setting, go prepared with a pair of dark glasses. Since you say communication is sometimes a problem because of your past stroke, write down the questions you have before you go when you aren't stressed out and hand the list to the doctor.

I wish you well.

[paris]

Deanne, that is an excellent post with many postive suggestions.  Thank you.   Thankfully, doctors and medical care has advanced in the past 30-40 years.   Kristina, start fresh.  Just worry about the kidney function right now.  Take care of this problem and the rest will fall into place.   One step at a time.  We all want you to find good medical care.  And I always take a list when I go to the doctor, because I know I will forget things when I am with the doctor.    Good luck.  We know there is a doctor out there that will see you and treat your kidney disease.   

[Romona]

Deanne, I agree with Paris, great suggestions. I think what Kristine was trying to get across about what happened in the past is why she doesn't know where to turn. She had tried to summarize why she feels the way she does. I haven't lived her life or anyone else's life. I am not going to judge the way she feels. Everyone experiences things that shape their personality. Some people can overcome things with no ill effects. What is traumatic for me might be nothing to someone else. I am just so surprised at some of these reactions. She reached for support from people that are experiencing the same disease and instead so many don't believe her. She needs to heal and like Paris said start fresh. Reaching out and asking for help is a great start. I don't know what kind of support or resources she has. I don't know what cultural differences are an obstacle for her. But this isn't the only post that she has made where I can not believe the reaction.

This thread has been a real eye opener to me. It is a reminder that I should be more tolerate and understanding to those suffering what ever life has thrown their way. You never know the impact you have on someone's life. A kind word or a smile might be the lifeline some one needs at that moment to restore hope.

[RichardMEL]

Thanks Deanne - great post.

I think I must have missed that Kristina was Muslim. Not that that is an issue for me personally but I think Deanne raises very valid points about cultural misunderstandings. I think also the UK has probably come a LONG way in the past 30-40 years in this respect - there are now so many faiths and cultural groups living there I think understanding in the medical (and other) communities would come along way and certainly if Kristina requires extra levels of privacy to make her comfortable then I do not see why they would not be afforded to her if she just explains why a particular setup may not be comfortable for her. I think a lot of folks these days are sensitive to such things.

Thanks for the post.

[Sunny]

Kristina posts in her March 2nd post that she is not Muslim.
Though it doesn't matter what religion she is to me. I have just suggested that if she is from another culture, medical treatment in England might be different for her. Cultural differences can influence so many things. Heck, I have culture shock just visiting the Deep South here in the U.S. It's not that it's any better, or any worse, it's just that it's different and I have to adjust and self reflect when I am there. ( They are super nice in the Deep South with excellent manners and I try not to be an abrasive loud mouth Californian).

[Romona]

I didn't want to upset anyone with my pervious posts. But I feel now it is going in the right direction. Positive suggestions and reassurance is so helpful. Hopefully someone will help Kristina understand that things have changed. Maybe she won't feel so alone and continue to seek help. I just think she has concerns that some might feel aren't valid. I hope she finds a way to be more confident and less reluctant. I hope she doesn't feel alone.

[RichardMEL]

Good point Romona. It doesn't matter if anyone else thinks Kristina's concerns aren't valid - what matters is that she feels them and they are important to her and in order to get the treatment she needs - either she needs to come to terms with her concerns or explore options with the medical professionals to allay those concerns so she can get the help she needs.

One thought occurs to me though. Clearly Kristina is getting some sort of medical care because she's aware of her kidney function - that suggests she's seeing at least some sort of renal professional (I suppose a GP could order the appropriate tests, but I'm sure they would prefer to defer to a specialist anyway).

I just hope that Kristina can find a way to satisfy her concerns and get some help.

[jennyc]

Hi Kristina,

Look i want to say a couple of things, pretty much just re-itterating what i've said to you before. You know i feel for your situation but i really think you should let bygons be bygons and take care of your health first. As my mother would say, "you're cutting off your nose to spite your face". I really like talking with you but you kind of remind me of my brother, he was (YES PAST TENSE) diabetic and refused propper medical treatment he died before his 40th birthday. DON'T let that happen becuase of your row with the NHS.

Look from experience i know that not all NHS Dr's are bad becuase i'm under two british expats now in the transplant team and they are fantastic. It's trial and error to find a Dr you like. I'm guessing you'd be more comfy with a female Neph, but then they don't always have the same bedside manner as the men.

From personal experience once your admitted all dignity goes out the window. After my son was born i became quite used to Dr's lifting my shirt and just doing what they wanted (not in a bad way) becuase they are more interested in figuring you out than worrying about your privates. I even had a male nurse hike my shirt up (very recently) to do a heart check, it made me a little uncomfy but he wasn't interested in anything but getting the tabs in the right spot.

As for meds, it's trial and error i've been on quite a few over the years and had some bad reactions and nil reactions. i finally found two that work for me (perivasc and metropolol- for high heart rate.... my resting heart rate is 115 BPM). As to nurses in a neph appt, i've never had one present both of my nephs are male and the appt has always been just with them.

Without a neph you wont get on dialysis or onto the transplant list, please let go and just worry about getting your health on track, you really need to be under  a neph at 10%. It really doesn't take much to go from 10% to 4% (look, thanks to the high heart rate my kidneys totally died in the space of 3 months i was voiding 1.5 lts and that dropped to 150mls from October to December) and it can happen without you realising. Just having your bloods done wont tell you everything.

Jenny

[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)