Something new for you

[Spin Doctor]

Hi everyone,
   My name is Brian Radbill and I am a dialysis doctor at Mount Sinai in New York.  I have taken care of dialysis patients for over 8 years and discovered this site accidentally about 5 years ago.  It was around that time that I decided to make a documentary about my patients so that I could teach medical students and trainees what dialysis is really like for patients (in the patients' own words).  With the help of a very talented film maker who also happens to be a physician (Arzhang Fallahi), I was able to make a short film (about 35 minutes) called "Life in the Spin Cycle".  We had our world premiere at Mount Sinai on 5/15/11 and around that time a member of ihatedialysis.com posted the event on the site (not sure if any of you attended the screening  but it was a pretty small turnout so I suspect not).  Anyway, I am happy to say that the film is now on youtube and may be viewed online for free at:

   http://www.youtube.com/watch?v=CCTVbVPODQg
 
   Alternatively, you can search for "life in the spin cycle mount sinai" on youtube and simply click on the picture of the patient in the dialysis chair.

   What turned out to be a project to educate physicians has turned into what I hope is an honest portrayal of what life is really like for patients on hemodialysis.  We didn't try to pull any punches and we didn't sugarcoat it.  The staff and patients who have seen it seem to like it, and response from people outside the dialysis world has been overwhelmingly positive.

   I know I'm not exactly the prototypical new member but I would very much like to share this film with you and your family and friends.  I hope you like it and look forward to hearing your feedback.

        Brian

[Willis]

Thanks Brian, I hope you'll drop in and share some more of your valuable experience.

 

 

[MooseMom]

We don't have "prototypical members"!

I hope that you visit this site more often because I suspect you may learn a lot here.  Education is a two-way street.  Congratulations on your film, and I will certainly go over to You Tube to view it.  Thanks for making the film; I'm sure it is brilliant.  And the more "normal people" who see it, the better; it would be great if more people really understood how dialysis impacts a person's life.  Maybe it would convince more people to become altruistic donors. 

[rsudock]

I really enjoyed this poignant video...made me think about my dialysis friends still stuck on the machine... 

[Spin Doctor]

So glad you liked it.  Thanks for the feedback!

[willowtreewren]

Thanks for sharing this, Brian.

Hearing the stories from the patients was really moving.

Aleta

[boswife]

WoW... I shed a lot of tears watching this.  I think it's a beautiful job....  I am now going to give my hubby (my dialysis patient..we do home hemo) a big hug.... thank you for sharing...

[Jean]

Excellent video, glad you shared with us and glad I took the time to watch it. Thanks.

[looneytunes]

Well done, thanks for sharing this with us.  Well worth watching. 

[monrein]

Thanks for this link and the video.

[Rerun]

Hi Spin Doc.  I watched 10 minutes of the video.  I think it would be better if you had "Intelligent" patients talk about dialysis.  "There is this thingy up here....."  Thingy???  Come on.  I don't want people to think all dialysis patients are dumb.  I want people to think that normal intelligent people get ESRD.  We know about our disease and can explain it to anyone who will listen.

It is a great idea, I just didn't like the people you had in it.  I love the title!!!   

Thanks for joining.  You get the truth here on IHD.

Rerun, Moderator          

[Spin Doctor]

I'm glad you like the title and hope you watch the rest of the film. 

As for your comments about the "intelligence" of the patients in the film, I don't mean to pick a fight but I must tell you that I think it is extrememly insensitive to suggest that just because a patient cannot perfectly articulate how a dialysis machine works, he/she is "dumb".  The five patients featured in the film represent a wide range of socioeconomic backgrounds with varying degrees of secondary education (one of the patients is a college English professor).  Unlike yourself and the members of IHD, many dialysis patients are not so well versed in the inner workings of dialysis.  In fact, I know several doctors who couldn't describe how dialysis works half as well as some of my patients.  In making the film, I wanted to hear what my patients had to say in their own words.  I thought it would be wrong to cherry-pick patients or coach them in any way.  As a result, some of the information may not be 100% accurate, but in many ways, it is the "truth".     

[cariad]

Rerun, I watched the film after your comment and do think that the patients by and large come off as intelligent. Even the man who said "thingy" eventually got the word catheter out, I think he was just using 'thingy' as filler as he hunted for the correct term. The professor segment was very interesting, as was the drummer. Jacqueline was great, although when she was talking about artificial tubing in her fistula, wouldn't that make it a graft? (Sincere question - I don't pretend to know much about dialysis myself.) Rerun, I think you would have absolutely loved the older woman discussing her acquaintance who did not know what dialysis is. It was a moment straight from the "ignorant things" discussion.

A few minor points to critique - the tone, with the dramatic music, struck me as a wee bit mournful, even pitying at times. That may just be me. I did see red for one brief second when the younger man was discussing diet and the camera pans down to his stomach. That seemed rather a cheap shot for a film that is trying to put a human face to dialysis, especially since the dialysis diet is about controlling certain elements, not restricting calories and losing weight. I would hate to see the dialysis outsider think that just because a patient appears heavy, they are somehow not serious about following this incredibly restrictive diet. Not trying to pick a fight either.

I appreciated the film very much. Thank you, Brian, for joining and sharing your work with us.

[okarol]

  Thank you for checking with us before posting the link to the video Brian. I watched it and thought it was a good cross section of patients. I am glad you introduced yourself and appreciate that you're open to comments and possible criticism. It's obvious a lot of time went into the film.
Welcome!
okarol/admin
 

[Rerun]

Okay, I watched the WHOLE thing.  The guy did not think of catheter on his own..... you can "hear" someone say catheter and then he says "ah ah ah oh Cathader yah".  Yes the lady was saying fistula but describing a graft but most people new to dialysis would not notice.  I did like the professor and the fiesty lady.  The Social Worker.... well, no comment.  At least you didn't film the comatose patient who wakes up long enough to yell "HELP, HELP GET ME OFF OF HERE".  And wake her/his neighbors in the process.

I liked Brian.  He was good looking, clean, and articulate.      There are people on diallysis like that too.
       
 You get clean sheets to cover the chairs in your center?? We don't!

When I first started dialysis the people I saw in center scared me to death..... I thought OMG this must lead to brain damage too.  Then I met Pam and she was young and energetic.  I was 24 and now I'm 50.  Pam and I are still good friends.  She has been doing home hemo for 25 years.

So, I guess if your target audience is Medical Students then the film is a good learning tool.  But, it didn't do anything for me.  Also I noticed 2 of the 4 are now dead.    Sorry!  Listen to your peers, not me.

       

[MooseMom]

I confess; I haven't see it.  I can't bring myself to watch it.  I'm not on dialysis yet, but I will be soon, and for some reason I can't quite articulate, this is the first time I've weenied out.  I don't want to see it because I don't want to imagine myself in that position just yet.  Sorry...can't do it.

[kristina]

Hello, Brian,

many thanks for this very powerfully realistic film.

It made me learn a lot and it made me think.
 
I won’t forget the Dialysis-patients presented in the film either.

The film strengthened my resolve to try my very best and keep my pre-Dialysis-status for as long as possible.

Hopefully some day in the future there will be more medical help and support to survive in ESRF

apart from Dialysis and transplant.

I live in hope.

Thanks again from Kristina.

[boswife]

Hum.... besides my previous post.......... I thought the film was just very 'matter of fact'. Wasnt ment to be sad, or happy, just 'what it is'.  Real people dealing with what they were delt and i thought it to be something that let you into their world a bit and made people in those chairs 'real' and thats what techs need to see.  Im a people lover and i loved every one of them    I remember when my mom was in a skilled nursing place for a bit.  They asked for a picture of their patients in 'better' times to show "the person" and then they had that picture to view as you entered their room.  I thought it was a beautiful way to 'see' this ailing/aging person in a different lite.  Anyway, i think it was done beautifuly.  Many of us NxStage useres also see films of 'rafters'  and campers etc..... All of these things show different aspects.  This film to me    showed what it was suppose to  ... and thanks again

[cariad]

Okay, I watched the WHOLE thing.  The guy did not think of catheter on his own..... you can "hear" someone say catheter and then he says "ah ah ah oh Cathader yah".

I did hear that in watching the segment again. I don't know, to me that is not the mark of a lack of intelligence - he does not use a cath any longer and heaven knows I could not give detailed descriptions with proper terminology for every treatment I've ever had.

Rerun, perhaps you are very much like me. After 35 years of transplant it is very difficult for me to watch those sickly-sweet transplant stories where the poor little charity case is supposed to be so grateful to every doctor, nurse, definitely you are expected to bow down and worship at the donor's altar. (not saying this film is cloying in any way, but transplant stories sure can be!) It certainly does not reflect my reality, but these people keep stepping forward to tell that same story, so I can only assume it is true for them, for many people. I do not watch transplant stories, though, because all of them will miss the mark for me in some way - no one has had exactly the same experience as me, and I guess the only thing that would really satisfy me is to see some cynical, middle aged, former dialysis child look straight into the camera and tell the world how the medical machine will crush your spirit and rob you of your self-esteem if you let your guard down for one instant. I don't think we'll see that story in my lifetime, not surrounding transplant, (maybe too great a potential to backfire).

I wish this film or any other could send the IHD message out to the world: learn everything you can about your particular health issues, because it may very well save your life, not to mention loosen the grip that many dialysis facilities seem to enjoy having on renal patients. I wish the person who had been asked to give advice to the new dialysis patients had said that. "Calm down" is actually great advice, but the second part, the part about just letting the doctors and nurses handle it, I cannot agree with that bit. The dialysis facility shown in the picture seems like a very nice place with respectful doctors and nurses. We know that is not necessarily what a dialysis patient will encounter in their own area.

Sorry to go on and on, but I really do like discussing these types of works. Of course no 30 minute film can tell the complete story, and I respect the effort. I would love to see more from your facility, Brian. Perhaps it's time to start on the sequel....

[Spin Doctor]

Love the feedback (good and bad).  Understand that the experience of the patients depicted in the film is different from many IHD members but hipe some of it rings true.  As for a sequel, not sure a I have it in me, but you never know.

[Rerun]

Cariad, I wrote you a PM telling you thank you for seeing both sides.  You said it beautifully.  I think if this film helps one person then it is worth it.  But you have me BLOCKED?      I guess I've probably offended you in the past.  Sorry.

I'm not smart or pretty, but if I'm going to start dialysis I'd like to see the best. 

     

[cariad]

Cariad, I wrote you a PM telling you thank you for seeing both sides.  You said it beautifully.  I think if this film helps one person then it is worth it.  But you have me BLOCKED?      I guess I've probably offended you in the past.  Sorry.

I'm not smart or pretty, but if I'm going to start dialysis I'd like to see the best. 

     

What? Huh??

Rerun, I am so sorry if I gave you the impression that I would block you on purpose. I am going to my profile right now to see if I can figure out what is going on. I have PMed members in the past and been told I was blocked, but it turned out to be just a glitch, usually after an update. My smileys are still not turning up in previews, so maybe something else was messed up in my account.

General message to anyone who may have PMed me: I have never blocked anyone. I don't even know how to do that, nor have I had reason to try in the 2+ years I've been a member.

Thanks for the lovely compliment, Rerun.  You have not offended me in the least. In fact, your direct discussion of dialysis and the US medical system are one of the primary reasons that this site is so dear to me. 

[MooseMom]

I guess the only thing that would really satisfy me is to see some cynical, middle aged, former dialysis child look straight into the camera and tell the world how the medical machine will crush your spirit and rob you of your self-esteem if you let your guard down for one instant.

You don't even have to be a "former dialysis child" to feel this way.  All you have to be is a patient with a chronic illness.

And I agree, cariad, that there is this unspoken expectation that transplant patients are supposed to be grateful in the manner you describe.  Oh, and we with awful, incurable diseases are also supposed to be "brave".  That really gets up my nose.

btw Rerun, at one time, PMs coming to me were mysteriously blocked, including one of cariad's.  All kinds of weird and wonderful things have happened in my IHD account.

[cariad]

I guess the only thing that would really satisfy me is to see some cynical, middle aged, former dialysis child look straight into the camera and tell the world how the medical machine will crush your spirit and rob you of your self-esteem if you let your guard down for one instant.

You don't even have to be a "former dialysis child" to feel this way.

True enough, nor do you actually need to be middle aged, or even a patient. Medical cynics of all stripes are welcome to come sit and whisper in my ear.

I do hold out this hope, though, that has been there since joining IHD, that some day I will find that one person who has seen what I've seen, fought the battles that I've fought. I am not sure why this has become increasingly important to me, but it has. Pediatric dialysis patients, especially from the dawn of medicine, inhabited a brutal, alternate universe, and post-transplant was not much better, especially in the early years.

And I agree, cariad, that there is this unspoken expectation that transplant patients are supposed to be grateful in the manner you describe.  Oh, and we with awful, incurable diseases are also supposed to be "brave".

I hear you! I remember like it was moments ago wandering the corridors of that scary hospital back in the 70s and overhearing a nurse lavishing praise on this one little boy who was being wheeled out of some procedure or other And you were so brave!!! You didn't even cry! That made me what to vomit even before I could explain why. When my older son needed to have an awful procedure done in which they had to put some line in his arm and keep it in for hours, I told Aidan it was going to hurt, and that he should scream as loud as he liked if it made him feel better. And he did. Later, I told him how brave he was and he said "but I cried". So what?! The procedure was long, boring and painful, he made it through, he was a real little hero that day. But awful medical professionals are forever trying to get patients to just quietly and humbly accept whatever comes along, and for gods sake don't harsh their mellow with any emotional response to pain. Woe to the physician who dares treat one of my kids that way.

[MooseMom]

I figure that I am old enough now to have earned the right to not really care too much about being a lemming.  I let everyone know, in a kind and gentle manner, of course, that I am not going to be a silent martyr.

The day I had my fistula created was the worst day of my life.  I knew what it meant.  I knew it was the first step into the abyss of dialysis, and I was terrified, angry and heartbroken.  As the medical staff worked to prepare me for surgery, I told them what this all meant to me because I wanted them to remember me and my fears when the next poor sod came along for the same surgery.

When my neph has a student come in to talk to me at my regular appts, I focus on the emotional impact of CKD and how it has changed my life.  I tell each student that my soul has been sickened more than my body has.  If the studen goes away thinking that I'm not "brave enough", well, sod that.  But if even ONE student goes away thinking, "I'm going to remember that lady and the wavering in her voice for the rest of my career, and I'm going to remember that my patients are people first and lab numbers second.", then I will be happy.

If we all suffer in silence all the time ("Mustn't grumble!"), how with doctors know what truly ails us?  I'm not about to let doctors off that easily.  I WANT them to see my anger and my fear.  It's part of my condition, and by God, they're going to know about it.

So, good for you for telling Aiden that if it hurts, it's OK to say so!

I would be very interested to know what your dreadful experience as a pediatric dialysis patient has come back to haunt you to such a degree all these years later.  I mean, on the surface, the answer to that is obvious; it was a terrible time for you.  But why has it become "increasingly important" to you?  What do you think?  Could it be that now that you have children of your own, it is triggering something deep inside your memory?  I'd be fascinated to hear what you think it might be.