October 2006 Issue Nephrology News & Issues Article. My NxStage Interview.

[Epoman]

This site ihatedialysis.com was featured last month in the September issue of Nephrology News & Issues Here is a link: http://ihatedialysis.com/forum/index.php?topic=922.0 it was a 3 page story about this site and they interviewed me and a few of our members.

Well this time I was featured in the October 2006 issue of Nephrology News & Issues talking about my NxStage experience. Attached is a image of the .PDF click the link below to download the .pdf and view in full size.



Check it out and let me know what you think. 

Click the link below to download the .pdf and view in full size.

[vandie]

Way to go, Epoman.  What a fantastic article.  Congratulations
 

[Sluff]

Absolutely outstanding article Epoman.  You should be in movies.

[Black]

WOW!!   Great Job!!  Maybe that will increase the pressure for clinics to get the NxStage programs going, and inspire and motivate more patients.  You most certainly are saving lives.

PS:  I agree that you ought to be in movies -- better looking than Tom Cruise and Brad Pitt

[Joe Paul]

Good reading. I hope more and more insurance companies come to accept that system, would be a great help.

[mallory]

Wow!  That's so cool!  Great job, Epoman.  I saw the first article in Nephrology News, that's what got me to come to this site.  Congratulations, your circle of influence is growing!

[goofynina]

What can I say Epoman?  I am so proud of you and i admire all of your accomplishments.  Thank you for being who you are and what you have done not only for me, but for ALL OF US...  YOU GO BOY 

[stauffenberg]

As someone who tried home hemodialysis for a while and then quit, I can say that, while I am glad it suits you psychologically, for me I felt less in control of my life than when I was on in-center dialysis, since bringing the machine home caused it to take over my life, rather than to remain confined to a time and place separate from the rest of my existence.  Having to sacrifice a whole room of my house for the machine and supplies, having to dialyze six nights a week, having to clean the machine every seventh day, having to keep track of all the supplies being delivered, and, on top of it all, still having to go into the hospital quite frequently for blood tests to be performed there which could not be done at home, simply filled my entire life with dialysis and left me no place or time of my own into which I could retreat to escape it.  There was also the problem of never getting a really restful night's sleep because of having to worry about pulling the wires, plus all the extra work of having to set up the machine for each treatment plus disconnect myself, so eventually I just asked myself, what have I gained by having to do all this work myself when before I could just have the nurses do it for me for free?  It was as paradoxical as dismissing all the servants and proclaiming myself free because now I was 100% in charge of the housework!

And let's face it, what destroys the freedom of the dialysis patient is not the fact of having to abide by the treatment center's rules and schedules, but having to undergo the constant treatments.  I was officially still in training when I came to the conclusion that having all this work to do myself had not really liberated me at all and was not worth doing, despite the promised benefits, which I believe are real, in terms of more physiological state of the blood values.  As I said to the director of the home dialysis program:  "I feel like a condemned man being now required to build and operate my own scaffold; at least before the job of hanging me belonged to someone else."

[Epoman]

As someone who tried home hemodialysis for a while and then quit, I can say that, while I am glad it suits you psychologically, for me I felt less in control of my life than when I was on in-center dialysis, since bringing the machine home caused it to take over my life, rather than to remain confined to a time and place separate from the rest of my existence.  Having to sacrifice a whole room of my house for the machine and supplies, having to dialyze six nights a week, having to clean the machine every seventh day, having to keep track of all the supplies being delivered, and, on top of it all, still having to go into the hospital quite frequently for blood tests to be performed there which could not be done at home, simply filled my entire life with dialysis and left me no place or time of my own into which I could retreat to escape it.  There was also the problem of never getting a really restful night's sleep because of having to worry about pulling the wires, plus all the extra work of having to set up the machine for each treatment plus disconnect myself, so eventually I just asked myself, what have I gained by having to do all this work myself when before I could just have the nurses do it for me for free?  It was as paradoxical as dismissing all the servants and proclaiming myself free because now I was 100% in charge of the housework!

And let's face it, what destroys the freedom of the dialysis patient is not the fact of having to abide by the treatment center's rules and schedules, but having to undergo the constant treatments.  I was officially still in training when I came to the conclusion that having all this work to do myself had not really liberated me at all and was not worth doing, despite the promised benefits, which I believe are real, in terms of more physiological state of the blood values.  As I said to the director of the home dialysis program:  "I feel like a condemned man being now required to build and operate my own scaffold; at least before the job of hanging me belonged to someone else."

But see you were not training with the NxStage and it is very different than with conventional home-hemo. Also you mentioned you were not officially done with training and you gave up. I too was gonna give up during my training as it was overwhelming and I felt like there is no way I will be able to handle this. But when you are home you learn tips and tricks to save time and I only dialyze 5 days a week for just 2 and half hours and I can do it whenever I want. I have dialyzied at all different times and it is GREAT! I only have to go to the lab once a month or another way to look at it, just 12 times in a whole year. All of my supplies fit in a Closet and that is a whole months worth. I have no tanks to clean or filters to replace. It is way different than with conventional home-hemo. Plus if I want to go away for a few days I do not have to worry about finding a center to dialyze in. You also mentioned about cleaning the machine, well with NxStage the cleaning process is wiping a couple of sensors and the top/front once a week and it takes maybe 10 seconds, literally just 10 seconds. You also mentioned keeping track of supplies well for me that involves having NxStage call me and asking me how many boxes I need, I tell them and viola it's delivered and the driver will stack it where ever I ask. For the other supplies like tape, needles, gauze, etc I just fax over a request and they ship those supplies to me as well. You also mentioned the time involved setting up the machine, well it takes me literally 2 minutes to pop in the cartridge, connect a few lines and then wait 18 minutes while the machine primes itself and the clean up involves just clamping everthing and throwing it all in the trash. I have more time then I have ever had now in my life and I honestly feel like I am on vacation from dialysis. In fact I think I will take today off and just relax because with NxStage I make my own schedule.

Read more about my training at http://ilovenxstage.com/training.html

[Sara]

Great article!  I'm very happy for you.

[stauffenberg]

I agree that Epoman's new system sounds better than the one I was put on, which even required me to do highschool science experiments every time to test the water in the reverse osomosis machine, which made so much noise I couldn't hear myself think.  My center was requiring me, however, to come in for hospital appointments and blood tests about 30 times a year even while on home hemodialysis, so with all the travel time and waiting around the hospital, it was beginning to look as though I would be in a worse situation than when I was on in-center dialysis, when I at least had the nurses to do the work for me.  Psychologically the only way I could deal with dialysis was ignoring it as much as possible, and the home treatment plan simply rubbed my nose in my life's tragedy too deeply for me to tolerate.

[Rerun]

WOW, I'm glad I took a second look at this.  I figured it was the August issue you were talking about.  Great article Epoman.  I'm glad you are happy with home dialysis.   

[Bajanne]

That was a tremendous article!  I am so proud of you, Epoman!
 

[Zach]

Congrats on the article!     

[angieskidney]

Congrats Epoman! Great post! Great article! 

[sandman]

Congrats epoman.  Great job! 

[Sluff]

 


For all the newer members to see. It's a great article.

[kimcanada]

What a well done post!

I am going to have to read about NxStage now!

Kim

[pastorb]

The article gave me something to think about