Something new for you

[rsudock]

I know I already commented but just wanted to add a few things...I agree with CARIAD that the music is mournful and pitying at times...makes you feel like there is no hope. It was really hard to watch the woman self cannulate herself as well. It is important for this part to be in the film for a teaching tool, but as a person with this disease I found it hard to watch.

I wish there was more home and nocternal dialysis advocated on the video b/c the more D you get the healthier you are. Of course D clinics in general suck this wasn't portrayed in the video at all. Patients feel like they are at the mercy of doctors and nurses. D doctors you see once a week, a dietician who passes your lab report out once a month without even giving you suggestions to lower your phos, and there was no portrayal of how sick you can get on D. Where is the crashing at? What about the lack of sex drive, leg cramps, heart palpitations??? Docs don't usually bother to address these issues...it is "Well there on D, they are suppose to feel like shit!"  We need more people advocating for us to live the most healthy and productive life possible while on the machine....just some suggestions for the next installment.

sorry if some of my sentences don't flow well today...feeling under the weather...

-R

[noahvale]

^

[Bruno]

Great stuff, Noah, as usual you nail it.

[Bajanne]

Just finished watching.  It was a bit surreal at first because the first lady has been on dialysis 6 years (like me) and has an 8 yr old grandson whom she wants to live for (like me)!
To be honest, it made me weep.  But I appreciate the honesty of it all.

[Spin Doctor]

Thanks so much for your feedback, Noah. 

I am well aware of the data concerning longer dialysis sessions but did not make a film about the proported benefits of this kind of therapy for the simple reason that the overwhelming majority of patients on dialysis in the US are on in-center HD.  Home therapies (such as home hemo and PD) are clearly under-utilized in this country, although I hope healthcare reform and possibly the FHN study group change that.  I advocate home therapies regularly to my patients as a clinician, but my intent in making this film was not to make a statement about renal replacement therapy modalities but rather to try to impart what life is really like for the majority of patients on dialysis. 

As for the tone of the film, I hope it is at times funny and sad, but in the end, hopeful.  I agree that it does not represent all patients on dialysis and may simply reflect life on hemodialysis in NYC, but I think it does ring true for many patients.  Of note, the poor lighting was not intentional - we had no budget and couldn't afford lighting!

In response to your comments about the UF amounts, although the actual UF may have been less than what was on the screen (after accounting for saline flushes in patients receiving HD without heparin), I have seen many patients come in several liters above their dry weight.  They routinely have several liters removed during a session without a concomitant increase in treatment time, but this is clearly not optimal.  We do try to increase treatment times or increase session frequency in such patients (in addition to dietary counseling) but it is difficult.

I just want to say again how much I appreciate all of your comments - there is clearly more to the story than what my film portrays, would love it if we could do a sequel but unlikely.