How do nephrologists treat kidney patients?

[Romona]

I think you are very wise not to go alone. I have had a few uncomfortable experiences too. I understand your frustration. And I like you try to learn from past experiences. I hope you can find the kind of care you are comfortable with. You are right IHD is where we learn from each other. 

[RichardMEL]

Gee Kristina I can't help but agree with some of the others here. Your assertion that "most often" a gyno exam is done in a essentially public place smacks to me that you had one unfortunate experience at some point and can't let go. Your other posts at times back this idea up - for example your whole thread about being taken off the transplant list in the 1970's. You *appear* to hold a grudge for a very long time. Why is that?

It seems that you may be your own worst enemy at times because *I* think you are letting the demons of your past guide your actions and reactions - for example you won't have a gyn exam because of whatever happened years ago that you weren't happy with? Your health is the one losing out there.

Australia runs to a fairly similar system as the NHS - Not the same though as we tend to pay for some things that would be free under the NHS in the UK, but in our public hospitals everything is provided free. My dialysis, for example, is provided with no upfront cost to me (apart from a few meds, which are subsidised by the govt anyway). Anyhoo what I'm trying to say is that I find it hard to believe some of the things you're suggesting to happen. True, I have never had to visit a NHS hospital in the UK (despite being there on many occasions) but as I say we follow a very similar system here and while many MANY things could be improved the care is the best they can do. OK I haven't had a gyn exam, but whenever I've had any kind of scan or thing it's ALWAYS been behind curtains, in private rooms, whatever. Even on dialysis if I've had to be examined at the VERY least they pull a curtain, and more often than not use a private room. I can't see how it would be any different in the UK (or most other parts of the world for that matter).

btw I have seen my file which has been active since 1993. It's big too - full of test results, examination write ups, x rays, biopsy results, God knows what else. So what?

I don't mean to sound rude or offensive but it does appear to me from the many messages you have written that you have an axe to grind. I am NOT saying you have not been treated poorly in the past - but it does seem that a lot of your experiences happened perhaps decades ago, and you are still holding the system liable for that.

I worry that your own health is suffering because you won't even consent to a lot of care you SHOULD be having because of injustices (perceived or real) from the past. For example you refused a second biopsy for whatever reasons. That is your choice - but you seem to hold the system accountable for your choices.

I really don't get how you can claim the NHS says they have nobody that can treat you. The only reason I can think of this is that somehow you would not be eligible for NHS care. However you seem to suggest you are a UK citzen at this point, so you should have it and don't tell me there are no nephrologists left in the UK - that's plainly silly. In another post you suggested they claimed they had no experts in your specific condition. Maybe so, maybe not.. but even still why can you not receive the best care they can give (ie: nephrologist at the bare minimum). You mention a number of times that you're not originally from the UK - there's almost an insinuation that you're being discriminated against because you're not natively born - is that true?

As a side note I will relate that my mother had a very serious condition - a pulmanry embolism caused by a DVT which moved from her leg up to her lungs. Nobody in Australia was expert in this particular situation, as it is quite rare - however there was(is) a team doing the latest work at UCSD in the US. The oz govt. actually paid for my mother to fly over to San Diego and be treated by the team there in the hopes to fix the problem. They were apparently prepared to spend over $600,000 for the procedure (because it could not be performed in oz). Unfortunately when she got there the US team declared her case was too severe for them to treat, and so she was sent home with nothing (and she passed away 5 years later). As far as I am concerned our health system did EVERYTHING they could, and then some to help her out...

I don't know if the UK authorities would do something similar but I tend to think they would do all they could to support one of their citizens.

If you're that unhappy with conditions in the UK why do you not either return to your original homeland, or perhaps find somewhere else in the EU to seek treatment?

[Romona]

I don't understand why everyone has to be so judgemental of someone else. If I recall this a place to vent and rant about experiences, share knowledge and be supportive. This post has been picked apart by so many. So what if something has made someone leary and question if they have gotten proper treatment. So what if someone is holding a grudge. If you find posts hard to believe then don't read it. I would be afraid to ask questions here if I got these kind of responses. I admire all of you that are so assertive and are able to get the care you like. Not everyone is like that.


I would be highly offened if people picked apart my posts like this one has.

[cariad]

And if we institute the type of health care "reforms" that President Obama wants to see, our health care system will start to resemble yours: Bureaucratic, the arrogance of government civil servants, the whole nine yards.

 

As opposed to the modesty and humility of the typical American MD? RightSide, just because you have a good nephrologist, you cannot possibly believe that this somehow represents the superior state of US health care. I can still remember the arrogant, effed-up statements that doctors made to me 20 or 30 years ago. From my decades of doctor experience, I have met some that believe they are gods and act accordingly, many that were forgettable for their mediocrity, and some that I would happily put in my will. That is what I would expect any average person to report after meeting a large number of doctors or any other professionals in any country.

Kristina, where to begin? First of all, when I suggested counseling, I did not mean in lieu of seeing a nephrologist. I meant see both, like most of us who see several doctors in a typical month. I agree with Richard so strongly. These grudges are ruining your health, and I think counseling may be the only way you can start to unpack what actually happened over your life and move forward. I am sure much anger is justified - I would be amazed if anyone could receive chronic illness health care for as long as you have without a horror story or two. However, by my count, you have run across three sexually inappropriate MDs (one of whom was female) and at least one violent maniac who introduced himself as such (the black belt). What did the person who accompanied you on these appointments have to say about all of this? Why did they not intervene? Do they agree with your interpretation of events? 

I think it's fairly clear that solicitors won't take your case because they don't think you have one. It works the same way here. If you make a criminal complaint, the DA would need to consider whether or not your case is strong enough to pursue in court. That does not mean that whatever you are claiming did not happen, but solicitors look at everything in terms of whether or not it can be proved in court, and whether or not the actual letter of the law has been violated. I find it difficult to believe that you have *never* met a decent, competent NHS doctor. I find it equally implausible that you have all of this evidence of serious ethical violations, and still no attorney will touch your case. I often read the BBC site, and have seen doctors found guilty of misconduct that does not come close to your claims.

From what little I've read about Lupus UK, they administer grants for research on lupus. Lupus is an incurable autoimmune disease, so the best hope is to continue researching ways to manage, and maybe even cure, the condition. Perhaps they urge their own members to participate in this research because they feel it will benefit them. When I asked for links, I meant can you provide Internet links to articles or blog pages from people who have also felt pressured and bullied by Lupus UK? I would be interested in hearing more about what exactly the organization is saying or doing to make you feel this way. As I said, I am a research participant in a government funded study, and I certainly had to fight for years to find a doctor who would allow me to participate. My experience is that it is quite difficult to get into medical studies because they broadly exclude so many individuals. I cannot think that you would qualify for most medical studies because unfortunately, you have so many co-morbidities.

Richard, that story about your mother. Oh. My. God. I could barely read the words "$600,000" to my husband. Yours is truly an incredible country.

Ramona, I don't mean to be cruel to Kristina, nor "pick apart" her posts. I think most people are trying to help her, but when the answer is "see a nephrologist" and she argues that she cannot, what is everyone supposed to say? Her GFR is 10! Also, I am personally fed up with people using horror stories from Britain/Canada/France/Australia/Mars to argue against desperately-needed health reforms in the US. I think Kristina is well aware that this is a sensitive and highly political topic for many, and tempers may flare. The assertion that the whole of the NHS is corrupt and incompetent is going to spark a debate just as surely as saying we should open up Medicare to the entire US.

[KICKSTART]

Oh Kristina , i wash my hands of you ! One thing i am not is a bully , i have explained that ive asked where you originate from because maybe A) You have trouble understanding what doctors are saying or B) In your country you got different health care. and if asking someone where they are from is such a big issue ..then so be it ! Obviously for reasons only known to you you wish to hide this.

Convienient that your proof fell through the net isnt it ? Alot of people have very very thick files with lots of papers in them , but a complaint is a complaint and especially one with PROOF in it !

I dont ever recall you asking me about my centre ? but once again is this a diversion from answering my questions? I doubt very much you would end up at my centre as you have already stated numerous times that no one will treat you.


And as for anyone that thinks im attacking Kristina for her posts , im not. I just think they are so far out there and to be honest i need to justify the NHS , being both British and a part of it all my life , i think im quite justified in doing so. Oh and just on a final note ..Lupus ? My mums best friend has Lupus and gets the best of treatment on the NHS.

Anyway at the risk of getting banned i will stop posting replies to Kristinas posts and let the rest of you do that . I just would like to state that although not perfect , the NHS (or the people in it) is not a placed to be feared , full of stalkers , private research, no privacy and no treatment. It is no different from most other places except we may have longer waiting times! I in fact dont have the problems half of you have, that pay for your treatment ! I get Aranesp (epo)weekly without question , i get all the latest drugs without question , i get the most expensive brands without question and when on PD i got Extraneal without question. Yes ive had run-ins with doctors but that was more a conflict of personalities or disagreeing with a treatment or an attitude problem from a nurse, but then i bet so have a lot of you and you pay !

[billybags]

Like Kickstart, I have complete confidence in the NHS, and ok things do not always run smoothly, what hospital ever does, but I would not like to be treated any where else in the world. I have been in hospitals in Greece, lets say they do there best with what they have, but their people deserve better. Hand on heart I would not call the NHS.

[MooseMom]

I have calculated that over the past five years (which was when it was discovered that my fsgs was far more advanced that I had thought), my husband has spent over $10,000 in out of pocket costs for co-pays on my meds and trips to the neph, and I'm not even on dialysis yet.  We HAVE insurance, but the bills are still steep.  And I use generics if they are available.

I left the UK about 7 years ago, so things might have changed, but when I was there, you paid a flat rate for any prescription your doctor gave you.  I'm sure the price has gone up, but the last I recall, it was about $10.  However, you did not have to pay if 1. you were under the age of 16, 2. If you were over the age of 65, 3. if you were pregnant, 4, if you had given birth within the past year, 5. if you were on income support, 6. if you were in the military.  (Anyone here from the UK, please let me know what the current rules are; I'd be curious to know).  I never paid to see my GP nor any consultants on the NHS.  However, through my husband's employer, we did have private insurance (BUPA...does that still exist?), so a couple of times, I saw a consultant privately and was charged about $100.  So, people in the UK DO have access to private insurance if their employer offers it.  It works well for acute illnesses, but the NHS is generally better for chronic illnesses (in fact, I don't think private insurance companies in the UK will cover chronic illness, anyway.  Someone please let me know if that is still the case.)

[MooseMom]

The reason I posted the above was to illustrate that there are different ways of doing things.  I am curious...how many of you who are American know how much it costs to see your nephrologist?  I used to see mine every three months, but now that my kidney function is worsening, I see him every 6 weeks.  I pay $30 each time I see him, but I have no idea how much he bills the insurance company.  Does how a neph get paid influence how he treats his patients?  That seems to be the underlying question here.  Will a neph give you better care if he receives reimbursement from Corporate America or from the socialist/fascist/communist/"Big Government" NHS?  That's something to ponder.

[KICKSTART]

I have calculated that over the past five years (which was when it was discovered that my fsgs was far more advanced that I had thought), my husband has spent over $10,000 in out of pocket costs for co-pays on my meds and trips to the neph, and I'm not even on dialysis yet.  We HAVE insurance, but the bills are still steep.  And I use generics if they are available.

I left the UK about 7 years ago, so things might have changed, but when I was there, you paid a flat rate for any prescription your doctor gave you.  I'm sure the price has gone up, but the last I recall, it was about $10.  However, you did not have to pay if 1. you were under the age of 16, 2. If you were over the age of 65, 3. if you were pregnant, 4, if you had given birth within the past year, 5. if you were on income support, 6. if you were in the military.  (Anyone here from the UK, please let me know what the current rules are; I'd be curious to know).  I never paid to see my GP nor any consultants on the NHS.  However, through my husband's employer, we did have private insurance (BUPA...does that still exist?), so a couple of times, I saw a consultant privately and was charged about $100.  So, people in the UK DO have access to private insurance if their employer offers it.  It works well for acute illnesses, but the NHS is generally better for chronic illnesses (in fact, I don't think private insurance companies in the UK will cover chronic illness, anyway.  Someone please let me know if that is still the case.)

Yes you are pretty much spot on ! All you say is generally true ! (and you will also be able to vouch for how you were treated and the conduct of the staff and the privacy you were given during any treatment or consultation !!!! )

[MooseMom]

Whenever I needed an exam of any sort, I'd just pop down to my GP's surgery and see either him or Sally, his nurse.  She would do my annual pap smear, and yes, it was done in privacy.  The surgery was actually a converted detached house, and my GP's office overlooked the lovely garden.  My neph here in the US works out of a nasty old clinic.  Blech.

Oh, I have to relay this story about my current neph.  He's a human Eeyore.  A couple of months ago (remember, this is an emotionally fraught time for me as I am essentially waiting for my kidneys to fail...), he told me that I wouldn't die of kidney failure, rather, I would die of complications of kidney failure.  I knew this was probably true, and I never expected much handholding from him, but I thought this was a bit OTT.  Not too sure this would fall into the "care and compassion" category.

[kristina]

Stop!

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

Shame on you!

I was going to ask you to give me the benefit of a doubt or show some kindness & compassion, but I shall not bother.
 
Why don’t you check-up what I have said?

Why don’t you complain to the UCH in London saying there is a distressed female in ESRF (kidney function10%) ,
who has no NHS-GP/doctor/nephrologist/rheumatologist to go to & she was put on the wrong NHS-road at the UCH
by two NHS-nephrologists, one Dr. C  (the stalker) and one Dr. O .?

Why don’t you write to the Prime Minister complaining there is a female in ESRF
who for over 30 years was badly let down by the NHS
& she received by post a medical letter dated 11th April 2005
stating there is no specialist in the UK to treat her Lupus/SLE/MCTD?
Why don't you complain she has had no NHS-GP to go to for medical help for many years?
Why don’t you complain that she has written to the Prime Minister by fax (0207 9250918)
(i.e. 25th September 2008, 20th October 2008 etc.), but not received any help or answer?

Richard, why don’t you check-up in Australia?
A group of patients deal with health-care accidents in Australia
& I talked (on the phone) to a very kind and understanding lady & she helped me to understand
that the gynaecological chair was not put in front of the door to humiliate me personally.
She helped me to realize that I have to pay privately if I wish to have a decent & dignified gynaecological examination.

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.

Finally I wish to thank you Romona. It is so good to know that you are here.
You obviously have had similar experiences & you are sensitive &understanding & I thank you for that.

[Romona]

Kristina, I have no knowledge of the NHS system. I just know things here. But I learned more from this board than anywhere else. I have passed my positive experiences to others at my workplace and others living around me. I was fortunate to have people I could ask about things. The National Kidney Foundation has been helpful to me. You reached out for help, people that know the system weren't able to direct you to helpful places. If someone knows a great place to help you with Lupus, it would have been nice if they shared that information. I am fortunate to have some very good doctors now. I can ask questions and be referred to people that can help me. I am changing my PCP because I feel I was referred to a better practice that will work with my transplant team and other doctors I see. Not that they were bad doctors, they don't feel comfortable with some issues that have come up. I often tell people to join this board because of the knowledge and support.

[KICKSTART]

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 !

[Sunny]

Kristina,
Regardless of all this, please find a nephrologist for treatment. You owe it to yourself.

[-Lady Noir-]

I'm pretty sure most kidney patients have had bad experiences with hospitals & the like, some of corse, as i have been reading, worse than others.
I'm sorry to hear Kristina, of yours 

I do, hate to assume here but, you sound like a stubborn person, and with that trait alone i'm pretty damn sure you can give your health another chance. 

[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