How do nephrologists treat kidney patients?

[MooseMom]

It is unfortunate that this particular thread was the one chosen to be resurrected as it was a particularly painful discussion which became somewhat personal.

Kristina, you know that you should feel incredibly proud of yourself for sticking to your guns and for doing what it took to find specialists who were actually able to help you.  I am so grateful that you are now getting the good treatment that you (and we all of us) deserve.  Well done!!!

[kristina]

Many thanks again Cassandra for your kind encouragement and thank you talker for apologizing, because re-heating this thread did hurt very much and brought back the trauma my husband and I went through at that time... and thank you Charlie for “ironing out” an oncoming feeling of discomfort and last but not least, many thanks MooseMom for continuing to be such a good friend. It is very heart-warming ! ...
... Yes, it is true, my husband and I went through a very long and extremely difficult battle at that time and despite the very good outcome, I don’t really feel proud about the fact that we both so stubbornly had to stick to our guns until a very good result was assured... and I am very relieved that against all the odds I came out of this battle still very much alive and I have certainly received very good medical treatment ever since.

... "It" all was finally sorted out, when someone “very high up” in the administration became curious about all the noise my husband and I were constantly making and they investigated not only me but also my husband and realized, that we both enjoyed a good reputation, we both enjoyed very promising careers and, despite my debilitating chronic diseases and medical disasters, I had already achieved a very good reputation in my profession with many exhibitions etc.  ... and then, all of a sudden and due to medical negligence I suffered - at a very young age - a debilitating stroke and my whole life was suddenly put on halt for a very long time to come, and the only help I had was my husband who diligently read through all available stroke-rehabilitation-books in an effort to help me and without his help I would not have had any chance to rehabilitate from the stroke ... When all these factors were irrefutably established, the investigation began in earnest ... and it brought very good results from then on ... 
... But ... this battle took lots of our time and lots of our strength... but there again, it had to be done and there was no other choice ... Of course, it would have been wonderful if my husband and I could have been spared this painful and long-winded battle, but the outcome was a very good one and it was certainly worth it...

[Athena]

Kristina,

I just saw the recent posts in passing and couldn't help reading the whole thread from the beginning. All I can say to you is THANK YOU for posting your experiences, thoughts and feelings about your past medical encounters. I am truly sorry for what you have suffered and have learnt a lot from your thread about the reality of medical trauma. You are so lucky to have your wonderful husband who has supported you throughout this long arduous ordeal. Many patients just don't prevail in the face of serious medical mistakes and hospitals have a lot of resources devoted to protecting themselves from complaints and legal action. Being isolated, disbelieved & dismissed is part and parcel of the trauma any patient will experience unfortunately. I am so glad that you have finally found justice and also glad to hear how so much better you are now sounding in your messages. You actually give hope to others in ways that empty words of reassurance cannot ever do. I can't help but admire you for your tenacity and fighting spirit over such a long period of time. Best wishes to you in the future and thank you again.

 

[MooseMom]

I agree with Athena, every word.

And I still maintain that you AND YOUR HUSBAND should feel proud!!

[Michael Murphy]

Kristina, I spent almost 40 years as a UNIX system admin.  During that time I was a observer or A participant in what we referred to as the religious wars, there were several all obscure or techy the biggest was the OSI versus TCP.  Now what made that so bad and so funny was OSI was never fully implemented but the fanatics who supported OSI would point out every perceived problem with a TCP choice for a system.  It was terrifying how the OSI profits would attack anyone who proposed a TCP solution. Flame wars abounded even saw a fist fight once.  However I learned on religious issues to be a non combatant.  Because if people divide on two solutions some times the matter becomes more significant then it should.  During those days I choose what would work on the system I was designing.  I also put a package at the end of every design explaining with the time frame requirements we could not depend on vapor ware, cut down on the arguments. What I am saying is you knew what you were talking about, it became what looked like a religious war and you stood your ground.  Good for you.  Lots of respect.

[Charlie B53]

Kristina,  You should never 'feel bad' about doing what you HAD TO DO in order to get the medical treatment you need.   If youodid not 'stick to your guns'  and have such a supportive Husband, I'm afraid you would have been another casualty of this insidious disease.

You have set an example for others that are currently being oppressed by the system, that they too need to stand up and be counted. 

I don't remember who once said,  "Never let the Bastards get you down."

Keep right on Taking Care,

Charlie B53

[Blake nighsonger]

Kristine hi,

If you ever need me to punch somebody out for you let me know ,

Your the best ,thanks for being my friend.

Blake n

[kristina]

Many thanks Athena, MooseMom, Michael Murphy, Charlie B53 and Blake nighsonger for your heart-warming thoughts and encouragement, it is very much appreciated !
... Sometimes I was wondering if there could have been any other way to sort it all out ...?  ... Perhaps not ...
...Well ...the main perpetrator has been made redundant and cannot misuse the trust of vulnerable patients any longer and the others were being observed...
(... whatever that may mean...).
... I do hope, that no other person has to go through anything like this, but, if by any chance it is unavoidable, I am here to help  ... 
Best wishes from Kristina.

[kristina]

What I am saying is you knew what you were talking about, it became what looked like a religious war and you stood your ground.  Good for you.  Lots of respect.

Hello again Charlie,
...This is a most interesting observation you have mentioned here and with this observation you have certainly "hit the nail on the head", so to speak ... Mind you, at that time it was still very early days and the problem as such did not really "come out" as loud and obvious as it is often being noticed these days. But nevertheless, that was exactly the problem and, as a young female with a University education and a very happy marriage, I certainly did not inspire any charitable medical compassion in a male doctor, whose religious background is one where females are not even considered as worthy human beings...
... But I must say, that at that time I rather FELT this problem instinctively and therefore I could only be led by my instinct ... But all the same, it was good luck that someone “very high up” in the administration (where this particular religious angle had not yet "infiltrated" ...) became curious about all the noise my husband and I were constantly making and eventually truly investigated and sorted it all out...
Many thanks again Charlie and ... that was very well observed !
Kind regards from Kristina.

[Athena]

Kristina,

It always feels like there could have been a better way, post fact. That is inevitable. Most people don't survive - you did. That's something to keep in mind.

I sometimes think that the best way for us to protect ourselves (as patients who are always vulnerable to medical mistakes) is to record and even video tape each & every encounter we have with every aspect of the medical profession. That way, there isn't this horrible "he-said, she-said" scenario to contend with afterwards that always dis-empowers the patient. If people became aware that everything is recorded, that may avert a lot of untoward and inappropriate behaviour? That seems to work in crime prevention for example. Just a thought anyway. (Personally, I'd hate to know that I am being recorded).

Just one suggestion, I don't know if it might be helpful or not. But have you ever considered writing a book about your experience? You have excellent writing skills and so much knowledge and insight into this problem.

[kristina]

Thanks again for your kind thoughts Athena and also many thanks for your kind suggestions.
Actually, the evidence needed to prove my case came along, after I had applied to see my medical-file under the “Freedom of Information Act”. Of course, my medical file was thoroughly “combed through” before being given to me, but since it was such a huge, enormous file, mistakes were being made and some incriminating GP/doctors-letters “slipped through the net” like i.e. some GP-letters which had been sent to specialists and written in such a dismissive, nasty manner, that it off-put every specialist from the very start and “inspired” them not to bother and not to try and explain my symptoms and/or look for a diagnosis, when my husband and I consulted with them... Locating those terrible GP/doctor-letters and having them in our hands made us to send copies of all these letters plus our written complaint to all the relevant authorities and from then on life was made much easier, especially after the real investigation finally “got under way”... and after all this I was finally sent to a true specialist (with a truly encouraging medical letter asking for a diagnosis) and after many medical tests, blood-tests etc. I was finally diagnosed with SLE/MCTD and that explained not only my symptoms, but also my terrible health history... And since my genetic mother died shortly after my birth, my diagnosis also explained the most possible reason as to why my mother died so early in her life and it also explained the fact, that I most possibly had inherited SLE/MCTD from her...
Thanks again and also thanks for the kind suggestion that I could write a book, I shall be thinking of it...
Best wishes from Kristina.

[Rerun]

People learn from these public posts old or new.  That is why we don't delete them due to age.  Maybe someone in the future will really need to read this post and YES add to it.   It is ALL good.

Rerun, Admin.     

[kristina]

People learn from these public posts old or new.  That is why we don't delete them due to age.  Maybe someone in the future will really need to read this post and YES add to it.   It is ALL good.

Rerun, Admin.   

Thank you Rerun for your kind thoughts which are very true indeed and very much appreciated.
... Another point about these traumatic experiences, worthy to be mentioned here, is the fact, that even after I was diagnosed with SLE/MCTD and my symptoms and health-history finally had a name and an explanation etc., it still took me many, many years to overcome the terrible trauma I had to endure in an effort to get there ... and ... even after the diagnosis came along, it was still impossible for me to succeed in forgetting these past traumatic experiences and "get on with it" just like that, because that would have been completely impossible ... And that was the reason why I consulted for so many years with top private specialists and a top private GP and paid for all medical consultations privately ... until the day I finally felt ready to face doctors & specialists on the National Health Service (NHS) again...
... Mind you, in an effort to afford it all, my husband and I had to cut down very seriously on many other things ...
With kind regards from Kristina.

[Charlie B53]

Kristina,

Somehow I get the feeling that you still harbor a small amount of shame (?) or resentment, for being a victim of an oppressive bureaucracy that regularly shuffles patients in and out without any feeling of responsibility.

You are NOT to blame.  You have done nothing wrong.  Resentment may be the more difficult emotion to over-come.   I don't want to go all Biblical as I'm not sure of my own Religion, much less yours.   But if I am correct most every Religion shows us that it is better to forgive those that do us wrong......   I'm not so sure if this is even an allowed topic as so many people can get offended at the slightest mention of Religion.  I know that I believe, and I am sure that you have your beliefs.   So we are not that much different, even with obvious other differences in lives and cultures, we still have common ground we can always fall back upon.

Revival of this thread must have been painful, but your decision to tell us how you managed to over-come your mistreatment has given others so much Hope, they they may be able to speak out when the medical system becomes so discouraging to them.

It took a tremendous amount of courage for you and your Husband to show the system that you were right.   And again, in deciding to tell us, that again showed us a tremendous amount of courage, making the decision to write about it, then again actually posting it here in an open forum.   You have shown courage and determination that many only hope to ever have.

You should be Proud of all that you have accomplished.   You may not feel it yet, but we here at IHD Thank You for your courage.

Hopefully soon you will believe I am serious, you really have  done some great things, for yourself. and for all of us here at IHD, and for those to come after us.

Stay Strong,

Take Care,

Charlie B53

[kristina]

Thank you, Charlie for your kind and honest thoughts and many thanks also for your clever observation and understanding.
You are quite right; it might come over as some variation of "shame".  But, to be honest, it is rather an embarrassment for not realizing much earlier, that in a complete humanitarian-benevolent health system like the NHS in England sooner or later some medical "bad apples" would find their way and “slink in” to exploit this humanitarian medical system for their own, unbenevolent strategies ...
... And then confusion sets in, because it is extremely difficult – as a non-medical patient - to figure out, what is actually going on ... and then, all of a sudden a realization sets in, when it becomes obvious, that some medics are actually not who we thought they were ... and then, within a very short time we quickly "grow up"  and feel very strongly, that, in order to survive, we have to train ourselves to become extremely observant, semi-medical and quick-thinking ...
... And then finally, everything becomes even more confusing, because we begin to realize, how complicated life and survival as a patient can be ...