Comeback Kid(ney) Introduction

[Comeback Kid(ney)]

I am the comeback kid(ney) and I have been a PD patient for 3 years now. I have seen the good, the bad and the very ugly that this industry has to offer. I developed my ESRD from high blood pressure. I was a day away from dying and had lost the ability to walk. Because of all the rhetoric I have heard from the clinics, I have become a very outspoken patient in all media outlets regarding patient rights and spreading my message of hope and inspiration. Because I would love to get off dialysis eventually one day and have a positive attitude, I have been brandished a controversial figure in the kidney world. I have every right to want the best of care and to speak up when I have to. This is why I am the comeback kid(ney).

[willowtreewren]

 

Welcome!

[jbeany]

 

Preaching to the choir!  We are staunch supporters of patient rights and being your own patient advocate on here, so welcome to the club!

jbeany, Moderator

[Comeback Kid(ney)]

As much as I agree with you, I do have to emphasize to you that not everyone stands up for themselves. A lot of patients are afraid to speak up because of retaliation and retribution on the part of the staff at these clinics. As I have mentioned, I am at my 3rd clinic in 3 years but making moves like that takes a lot of courage. Especially, in my case, where I have suffered from low self-esteem my whole life. It takes everything I have to stand up for myself and be treated with the type of respect I deserve as a patient. So, you may have no problem in this area and that is good for you but there are so many people with different illnesses that have no voice. I work with people who have disabilities and so I know first-hand. So, though I may be preaching to the choir, never lose sight of the fact that even though people know that they have rights, not everyone can stand up for themselves. Your comment appeared to me to be a bit flippant. I told my story because there is someone out there who I know can relate and maybe this will give them the courage to step forward.

[Rerun]

Go get the bad ones Kid!      I'm so glad you joined.  On this site people state there mind and that is fine.  I try not to make someone feel bad for having a good situation.  If they have a good clinic then great and I'm glad for them.

Then there are the ones who are having problems and don't know what to do.  I hope you can help them.  Thank you for your introduction.

Rerun, Moderator   

[Comeback Kid(ney)]

Thank you for understanding. I feel like I am a voice for the voiceless. This hidden epidemic is only going to get worse and I feel it is important that a new ESRD patient know that he is not alone in the fight. Even though the kidney world looks down on me because as I am so positve, I know that my message of hope and inspiration is helping people and isn't that what it is really all about. Again, thank you for your support.

[jbeany]

Your comment appeared to me to be a bit flippant.

Easy, Kid, no offense intended.  It's the internet, not a face to face discussion.  Tone gets lost easily here.  IHD as a whole tries hard to encourage patients and caregivers to take an active role.  That's all I meant by the "choir" comment in my welcome.

[rsudock]

Your comment appeared to me to be a bit flippant.

Easy, Kid, no offense intended.  It's the internet, not a face to face discussion.  Tone gets lost easily here.  IHD as a whole tries hard to encourage patients and caregivers to take an active role.  That's all I meant by the "choir" comment in my welcome.

Hello Kid, I think Jbeany was trying to express she supports and understands your view. I have read some of your other posts and it seems you get defensive quickly. We here at IHD are the biggest advocates and supporters of the renal community.

Welcome...

-R

[MooseMom]

Even though the kidney world looks down on me because as I am so positve, I know that my message of hope and inspiration is helping people and isn't that what it is really all about.

Welcome to IHD.

May I ask, how do you define "the kidney world", and in which way does this world look down on you?

What exactly is your message of hope and inspiration?  Can you elaborate?  Thanks!!

[Comeback Kid(ney)]

First off, if I came across too strong then I apologize for that. But, I have a lot of anger toward an industry that tends to put a negative spin on wanting to be hopeful and positive. All I hear about is transplant and if I am on the list. It is as if these staff people have been brainwashed into thinking one way. If someone decides that that is the route they want to go, then that is their prerogative. But, I feel like the staff in these clinics look at us like sacrificial lambs going to slaughter. The humanity aspect is overlooked in terms of the almighty dollar. This has proven itself to be true by the last facility I was at that was acquired by a bigger conglomerate. The propensity for catering to the patient goes out the window and the only thing that matters is the bottom line to satisfy the board of directors of these facilities. Now, I know that I have come across rather harsh about what goes on in these clinics but my days of being a nice guy and too trusting are over.The last facility I was at tried to get me sicker and I have spent the last two months feeling like hell. One thing that you should try not to do is prejudge me because I have a right to be angry. Having a bit of an edge is what gets me through some difficult days. The patient advocate that I work with has told me things about what really goes on from the government down that should concern everyone in this industry. All you have to do is read the Atlantic Monthly magazine article from November 2010 and the headline says it all. "God help you. You are on dialysis." If you read the article you'll understand why no one should take what goes on in the industry sitting down. Now, if your experience with the clinic you are at has been positve then more power to you but that has not been my case. I will admit that the new facility I just started at has treated me with more respect and dignity than the prior two and so I have been pleasantly surprised. If someone is interested in my message of hope and inspiration, I would be more than happy to send them a synopsis of my comeback story along with my media appearances I have made. There are a lot of patients out there who have contacted me via the e-mail and have expressed the same concerns I have. But most are afraid to speak up in fear of retaliaton by these clinics. I foind it appalling that the moment I start to feel better, these clinics tend to not want you to get too much better. To me, it is the probem with our whole health care system. We don't look for the root cause of the problem, we only look to put a band aid over it. All My message is about is to become an out of the box thinker and if I offended anyone, then I am truly sorry.

[kristina]

Hello, Comeback Kid(ney),

These are very interesting points you are making:
there are indeed many ESRF-patients in urgent need of medical care
and respect of their Human Rights.

I also have not received respect of my Human Rights
and I have not received adequate medical care either,
which is one of the reasons why I am now in ESRF with a kidney function of 10-12%  –
(I am pre-Dialysis and have no GP, no doctor and no specialist to go to
and I have to pay for every blood test to find out my Creatinine, Urea, Potassium and Sodium).

But I do not think this situation occurs in one country only.

Over the years I have communicated with patients from all over the world
and the problem you describe seems to happen everywhere.

If it were only happening in one country
that would be the country we would all avoid, wouldn’t it ?

I often wonder what the common element is
which exists in all countries to cause such suffering ?

Kind regards from Kristina. 

[Comeback Kid(ney)]

Thank you Kristina. You are one of the few patients I have met that get it and wonder what is really going on in the kidney industry. If you are interested, I work with a patient advocate in San Diego,CA who may be able to help you. One thing I have learned is that it is very important to question authority. Did you ever notice how there are no 'kidney' books in mainstream bookstores? When I have asked nephrologists, they tell me that there are not enough people with this illness to warrant books in the bookstores. Excuse me but 26 million americans have CKD.That is one of many peculiarities that I find in this industry. What are your thoughts?

[Rerun]

If you are on PD, aren't you home?  The clinic you talk about is the one you report to?  I'm on hemo in center nocturnal so I'm there everyday.  I go Sunday night and leave Monday morning.  I go Tuesday night and Leave Wednesday morning etc.....  It can get bad when you get a couple of staff that don't do their job.

[Comeback Kid(ney)]

I am on the cycler EVERY night for 6 hours(down from 9). The clinic I mention is where I go every two weeks for my epo shot and once a month for my blood being drawn.

[kristina]

Thank you Kristina. You are one of the few patients I have met that get it and wonder what is really going on in the kidney industry. If you are interested, I work with a patient advocate in San Diego,CA who may be able to help you. One thing I have learned is that it is very important to question authority. Did you ever notice how there are no 'kidney' books in mainstream bookstores? When I have asked nephrologists, they tell me that there are not enough people with this illness to warrant books in the bookstores. Excuse me but 26 million americans have CKD.That is one of many peculiarities that I find in this industry. What are your thoughts?

Thanks, Comeback Kid(ney).

Unfortunately I have not figured out what is going on,
and I certainly have been observing the “kidney-scene” for many years
because I had my first kidney failure (uraemia with coma) in 1971
but I was never put on Dialysis because my kidneys picked-up again
and in 1972 I was well enough for a kidney-biopsy
which diagnosed chronic proliferative glomerulephritis.

In 1995 I was also diagnosed with Systemic Lupus (SLE)
and in 2003 with Mixed Connective Tissue disease (MCTD).

From 1971 onwards I have been observing the “kidney scene “ very closely
and have come across many patients and each and every one of them had a complaint.

That made me even more determined to keep my vegetarian diet, no alcohol etc.,
and with the absolute minimum healthy weight to keep my two little fighters going.

In 2006 I again was diagnosed (in London, England) with end-stage-kidney-failure
and I was told point-blank that I only had only 6 months to go until Dialysis.

Later another nephrologist gave me another 6 months until Dialysis
but I am still pre-Dialysis and I am trying ever so hard.

What has surprised me is that in all these years since 1971
I have not noticed that life has improved much for ESRF-patients
and no progress whatsoever has been made to keep ESRF-patients off Dialysis !

That I find strange, because heart-patients have had great improvement
and other patients with other diseases had great improvements,
but not kidney-patients.

I do not comprehend this and I have been wondering
whether it is connected with the huge Dialysis-Industry
and transplant-Industry and pharmaceutical Industry?

Another point I find amazing is that Christians are urged to “donate one of their kidneys”
whereas other religions do not seem to wish to donate an organ.  I find this also very odd.

I must still be missing some pieces of the puzzle because I cannot see the picture.

Kind regards form Kristina.

[Comeback Kid(ney)]

You hit the nail on the head. Everything that goes on is ruled by the pharmaceutical industry. All the sponsorships around the local news, to funding grants at universities to lining the pockets of politicians in Washington, DC. My first indication of deception was when my original nurse with Davita started jumping up and down like a cheerleader when my original broached the subject of transplant with me. My sales background kicked in and I realized that she wasn't concerned about my best interest but she was thinking about the cut of the action she would get from the transplant and where her next vacation was going to be. I call it a sinister medical world that looks at you as a lamb going to slaughter. If you are interested, I can sebd to your e-mail an article that appeared in the Atlantic magazine November 2010 entitled, "God help you, You are on Dialysis". It is very important for patients like you and me to band together because this hidden epidemic is only getting bigger and bigger!

[kristina]

Thanks, Comeback Kid(ney),

Yes, I would be interested to read this article
and if you can e-mail it to me
I would be very grateful.

Thanks very much from Kristina.

[dialysisadvocate]

I think what ComeBack Kid(ney) is stating simply is that money speaks louder than patient care in many instances. This has been stated for years and years. Not all facilities are providing safe care, following their own procedures and lack the effective treatment that patients expect in any healthcare setting.

His statement of patients having a fear to speak out is alive in many units and some of you know I have been stating for years and years. When someone says to me 'the patient needs to complain, or no one will listen' obviously, they have not experienced such retaliation as many have and know what it feels like.

The bottom line is that providers would NOT want to receive the care that their patients receive in some of their units. Perhaps they need to walk in the patient's shoes to fully understand.

The recent exposure of dialysis care in the US, as ComeBack Kid(ney) mentioned (Propublica articles) and now this with Davita does not surprise me. I have been following the surveys for Davita and FMC and others for seven years. It is a simple fix but providers will not listen to me...I have suggested and recommended but it is about  not upsetting staff because they, providers, feel it is hard to get experienced dialysis staff, staff have to be trained and what is even more frightening is that technicians only need a GED (not that someone with a GED is a bad person, etc.)..this means they have no medical background, not required by law and they received cookie cutter training....

[noahvale]

^

[olivia]

  I agree, no doctor or nurse likes us to speak up. I found the attitude to be " Kidney failure equals death- Dialysis or Transplant keeps kidney patients alive so what more do we want??

Not my attitude but the attitude I have experienced from the medical community. Because there is much more we need.

So keep on advocating we all need it!

[Comeback Kid(ney)]

I couldn't have said it better myself. I am not a statistic, I am a human being and wanted to be treated as such!

[kristina]

Thanks, Comeback Kid(ney),

Yes, I would be interested to read this article
and if you can e-mail it to me
I would be very grateful.

Thanks very much from Kristina.

Kristina - OKarol posted that article on here last November.  Due to its importance, maybe IHD should make it a STICKY at the top of the General Discussion Board.

http://ihatedialysis.com/forum/index.php?PHPSESSID=93c69c5e3f4364c23b6839c03301df47&topic=20853.msg346666#msg346666

Thanks, noahvale,

I have just read the article and it is absolutely frightening !

Reading the article certainly hardens my resolve
to keep my two little fighters
for as long as possible pre-Dialysis.

Thanks again from Kristina.

[Comeback Kid(ney)]

Any time you want to converse, drop me an e-mail and STAY STRONG!!!

[kristina]

Thanks for your kind wishes, Comeback Kid(ney), it is very much appreciated.
I also hope you stay strong as well and I wish you good luck.

The article naturally raises many questions.
I have only just read it for the first time
and the first thing which left me somewhat confused
was the mention of the good Dialysis-unit in southern Italy,
because I have a friend in Italy and she told me
that the health-care system in Italy leaves lots to be desired
and she does not think it is any better than other countries.

Why should the Dialysis-unit mentioned in the article
be so outstanding? For whom is it for ?
Does there exist a class-system in Dialysis-treatment ?

Best wishes from Kristina.

[MooseMom]

Don't worry...you have not offended anyone, and you are not coming across as "too harsh".  Most of us on IHD are very familiar with the ProPublica articles and understand the anger and frustration that comes in being told we have to be advocates for ourselves but mustn't at the same time be "non-compliant".  It's a Catch-22 situation.  We chafe at being shepherded into cookie-cutter treatments and find it difficult to convince our medical team to think outside the box like we do.

While I wholeheartedly agree that most clinic staff are woefully undertrained in "respect" and in dealing with patients in areas not confined to the merely practical, I also feel that we as patients can do a lot to ensure that we get the respect we deserve.  I personally am of the opinion that we can do a lot toward educating ourselves about how our disease affects our bodies and how various treatments work.  We can compare the pros and cons of each modality and come to a conclusion as to which is best for the kind of life we want to lead.  If we show this respect for ourselves, then it is more likely to engender respect from staff.  If we know what we want for ourselves and understand the goal of our preferred treatment, then we have a better chance of achieving those goals.

It would be nice if we could all just sit back and expect staff to always be kind and generous and empathetic and efficient.  But these expectations are sometimes too high for some staff.  I know we are all fighting against a corporate mind-set, but at the same time, staff are probably feeling overworked and underappreciated and lacking of respect, and the result is that staff and patients alike become adversaries.

While I don't disagree with anything you've said, I would encourage everyone to treat staff with the respect that we would want for ourselves.  Be kind.  Show that you are a human, not a watery sack of dirty blood.  Shine.  It's not easy to do when you are sick and/or frightened, but it is a goal to work toward.  You have every right to your anger, but be mindful of how that anger translates into how you relate to staff.

We all of us have to deal with medical people all the damn time, and I have found that the whole process goes much more smoothly if you can approach it with grace and humor.  If you can manage to cast aside the corporate-think and deal with people on a more intimate, human level, you might find life with a chronic disease a bit easier to bear.

At my last neph appt, I was examined by a med student; her first round was nephrology.  I told her that with an epidemic of ESRD just around the corner, we need all the good nephs we can get, so please consider nephrology!  I also talked to her extensively about the emotional and psychological toll this disease takes on a person.  I have talked to many med students in this way; I figure if I talk to them about this topic early in their careers, maybe my words will stick.  There are many ways in which WE can be the instructor.

Just my 2