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Hawkeye
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« on: July 26, 2006, 01:48:15 PM »

I have noticed that in all the clinics I have worked at (3 in all) the majority of the patients have no clue as to what is going to happen to them when they come in for their first treatment.  It's like they had an access thrown in and then shoved into a center without anyone properly explaing to them what is going to happen.  I know this is one of the reasons this site was created, so patients could get the answers they are not being provided.  I am just finding the severity of this to be incredably ridiculous.  The thing that really spurned this rant is that we had a problem with our solution delivery system today and I had to purge the acid lines because there was air in them.  This happens from time to time if someone doesn't properly plug the concentrate lines into the wall or jug.  I announced over the intercom that I need all PCTs (Patient Care Techs) to turn off their dialysate flows and the acid ports on the wall (If you don't turn off the ports the pressure of the purging forces acid through the machine and out a vent port causing a big puddle at every machine).  While I was going through the process of purging my manager comes up to me and tells me never to use the word acid again when we have this problem because it makes several of the patients nervous when they hear the words acid and then someone is playing with their machine.  I'm sorry if someone here doesn't know this, but acid is a part of the dialysate that cleans your blood, albeit a small part (Just for example 75% water, 20% bicarb, 5% acid).  Acid is also where they adjust things such as calcium by giving you a higher or lower dosage acid bath.  This is something I believe all patients should know about before being dialyzed, hell it even says acid on the front of Fresenius machines where the red ports plug in so why should I even think I have to worry about it.  Wouldn't they worry just seeing the machine, and thinking there is acid in it.  Is there anyone else out there either staff or patient that sees this same problem?  Is this just the this area that is lacking in training?  Thanks for listening, and please give me your thoughts on this training issue.
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« Reply #1 on: July 26, 2006, 02:33:48 PM »

I think every patient should go through home training class even if they NEVER plan on taking the machine home.  That way we would learn about the machine and not freak out when the alarm goes off or we hear the word "air" or "acid." 

It is no big secret, but probably the "budget" won't allow training patients when they need to save for Las Vegas for the top executives.
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Hawkeye
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« Reply #2 on: July 26, 2006, 02:44:08 PM »

I think every patient should go through home training class even if they NEVER plan on taking the machine home.  That way we would learn about the machine and not freak out when the alarm goes off or we hear the word "air" or "acid." 

It is no big secret, but probably the "budget" won't allow training patients when they need to save for Las Vegas for the top executives.

I agree for the most part, but I think home users should have even more in depth training since if something goes wrong they are their first line of defense.  Fresenius home machines and in center machines are two completely different beasts even though they look almost exactly the same.  I do agree though that there should be a training course given to all patients before they start treatments.  Even though I know no one likes watching them (yes staff have to watch the same mandatory videos every year plus many more) at least a video that every patient has to watch  before they start treatment that shows what is going to happen during a treatment and explains the terminology would be a big improvement.
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« Reply #3 on: July 26, 2006, 03:23:11 PM »

Maybe that is the Social Worker's Job??  But, once she started telling me I was depressed I tuned her out.  But, then again when an alarm goes off she panics too.  :o
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« Reply #4 on: July 26, 2006, 03:59:44 PM »

Patients have always had to learn about the machines on there own. When I was 11,after dialysis I was in the Techs room watching Fred strip down the machines. At the age of 11  could put together my keele kidney for the Lucas machine I was going on. I know what are in all the fluids that a kidney machine uses, only because I have read the labels. I bet none of the newer patients have a clue what goes into running a dialysis machine. Are even what the Alarms are when they go off. I used to set up the machine, but now I just let the nurses do it. Get to the unit too late now. Fed up of all the patients arguing who is first on.
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« Reply #5 on: July 26, 2006, 06:57:46 PM »

In my years of dialysis, I found that you are right. Most patients are told they "need dialysis" and thats it. Most were started in acutes in a hospital setting and were told to be at a certain unit at a certain time and day and they would be started in the chronic setting. (PD is not big in my area). By the time the patient and their family showed for their scheduled treatment they were terrified, not knowing what was going on. It was sad. What I started doing was having the hosptial discharge planner and social worker call me when patients were being discharged to the unit and I would go to the hospital. I would do their initial assessment, have them sign their consents, and talk to them. I would explain as much as I could, what they would be exposed to. I told them the unit was loud, cold (and hot at times), very bright, and a lot of beeps and other noises. Many that had transportation, I would offer them a chance to come to the unit before their treatment and give them a tour and try to calm their fears.
Much of the problem can be blamed on the doctors. Many patients are followed by the doctor and they know for months and sometimes years that a certain person will be starting on dialysis. During those months and years, why don't they send the patients to the clinic and allow them to see what is going on, and what to expect. Let them watch a patient being put on and taken off circ. Let them see the machine, tour the water room, look at the lab, talk to the social worker and charge nurse. The doctors are for the most part arrogant and obnoxious. They don't consider the feelings of the patients at all.
I honestly don't understand why 90 percent of the patients are not on PD. Who would come to a outpatient hemo clinic if they had the ability and support to do home PD? I wish I had a magic wand to wave and cure kidney disease, but I don't. I use to get so sick of staff saying something like "I know" or "I understand" when a patient would complain of an issue. NO, you do NOT know, you can't know unless your going through it.
Ok, I got on a rant.. sorry!
« Last Edit: July 26, 2006, 06:59:24 PM by bioya » Logged
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« Reply #6 on: July 26, 2006, 11:36:59 PM »

The clinics won't let anyone come in.  I had to get my Dr. to call the clinic PLUS write me a note to go in and look at the machines and then had to ask permission to talk to a patient.  They should let potential dialysis patients visit the clinic everyday for a year if they want to. 

Maybe they are afraid they would lose business if people saw what was going to happen to them when they were in their "right" mind!  ;D
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Hawkeye
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« Reply #7 on: July 27, 2006, 08:02:10 AM »

The clinics won't let anyone come in.  I had to get my Dr. to call the clinic PLUS write me a note to go in and look at the machines and then had to ask permission to talk to a patient.  They should let potential dialysis patients visit the clinic everyday for a year if they want to. 

Maybe they are afraid they would lose business if people saw what was going to happen to them when they were in their "right" mind!  ;D

I am not sure what the problem is, but no one listens to peons like me or the patients.  I'm just a grunt, and patients are meal tickets in their eyes so even when we have something important to say it falls on deaf ears.  I have talked to my clinic manager about it and to my technical supervisor too.  My clinic manager seem like they could care less, but my technical supervisor agrees with me.  Unfortunately he isn't in any better position to change things than I am.
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angieskidney
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« Reply #8 on: July 27, 2006, 10:49:30 AM »

I have noticed that in all the clinics I have worked at (3 in all) the majority of the patients have no clue as to what is going to happen to them when they come in for their first treatment.  It's like they had an access thrown in and then shoved into a center without anyone properly explaing to them what is going to happen.  I know this is one of the reasons this site was created, so patients could get the answers they are not being provided.  I am just finding the severity of this to be incredably ridiculous.  The thing that really spurned this rant is that we had a problem with our solution delivery system today and I had to purge the acid lines because there was air in them.  This happens from time to time if someone doesn't properly plug the concentrate lines into the wall or jug.  I announced over the intercom that I need all PCTs (Patient Care Techs) to turn off their dialysate flows and the acid ports on the wall (If you don't turn off the ports the pressure of the purging forces acid through the machine and out a vent port causing a big puddle at every machine).  While I was going through the process of purging my manager comes up to me and tells me never to use the word acid again when we have this problem because it makes several of the patients nervous when they hear the words acid and then someone is playing with their machine.  I'm sorry if someone here doesn't know this, but acid is a part of the dialysate that cleans your blood, albeit a small part (Just for example 75% water, 20% bicarb, 5% acid).  Acid is also where they adjust things such as calcium by giving you a higher or lower dosage acid bath.  This is something I believe all patients should know about before being dialyzed, hell it even says acid on the front of Fresenius machines where the red ports plug in so why should I even think I have to worry about it.  Wouldn't they worry just seeing the machine, and thinking there is acid in it.  Is there anyone else out there either staff or patient that sees this same problem?  Is this just the this area that is lacking in training?  Thanks for listening, and please give me your thoughts on this training issue.
I noticed it said acid so I just figured that was only used in cleaning at the end after I am disconnected in the evening. I didn't know. They don't tell us this. And I am in a self-care unit ...

I think every patient should go through home training class even if they NEVER plan on taking the machine home.  That way we would learn about the machine and not freak out when the alarm goes off or we hear the word "air" or "acid." 
There IS no home hemo in my city ..

I do agree though that there should be a training course given to all patients before they start treatments.  Even though I know no one likes watching them (yes staff have to watch the same mandatory videos every year plus many more) at least a video that every patient has to watch  before they start treatment that shows what is going to happen during a treatment and explains the terminology would be a big improvement.
Oh I want to watch a video! Then I wouldn't feel so lost!! Why don't any units do this??

In my years of dialysis, I found that you are right. Most patients are told they "need dialysis" and thats it. Most were started in acutes in a hospital setting and were told to be at a certain unit at a certain time and day and they would be started in the chronic setting. (PD is not big in my area). By the time the patient and their family showed for their scheduled treatment they were terrified, not knowing what was going on. It was sad. What I started doing was having the hosptial discharge planner and social worker call me when patients were being discharged to the unit and I would go to the hospital. I would do their initial assessment, have them sign their consents, and talk to them. I would explain as much as I could, what they would be exposed to. I told them the unit was loud, cold (and hot at times), very bright, and a lot of beeps and other noises. Many that had transportation, I would offer them a chance to come to the unit before their treatment and give them a tour and try to calm their fears.
Much of the problem can be blamed on the doctors. Many patients are followed by the doctor and they know for months and sometimes years that a certain person will be starting on dialysis. During those months and years, why don't they send the patients to the clinic and allow them to see what is going on, and what to expect. Let them watch a patient being put on and taken off circ. Let them see the machine, tour the water room, look at the lab, talk to the social worker and charge nurse. The doctors are for the most part arrogant and obnoxious. They don't consider the feelings of the patients at all.
You are so nice :) I wish I had someone like you when I was on PD and then got hospitalized and woke up from surgery with a permcath in my chest and was told I would go to hemo the next day. Even though I was sick all my life I was still scared because I knew nothing of hemo. Only PD! So I could imagine how much MORE scarey it would be for NEW patients! :(
« Last Edit: July 27, 2006, 10:57:52 AM by angieskidney » Logged

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« Reply #9 on: July 27, 2006, 10:52:01 AM »

I know the first time I saw the inside of a clinic, I cried! I knew nothing of what was going to happen to me. My Dr. didn´t know how to explain it well and just left me there to talk to others. I agree that we patients are just pin cushions to most techs. I have a perfect example that happened at the clinic today. I had been noticing that most patients don´t stand in the middle of the scale. (our scale is floor level and can hold a wheelchair). I talked to the nurse on call and suggested that he put a large "X" in the middle of the scale with tape. That way, everyone would know where to stand.  The nurse just smiled at me and walked away. I felt like an idiot! I know there is a difference in weight if you stand on the edge of the scale or the middle of it. Thus, it makes a difference as to how much weight you lose on the machine. Well, you know  -  it´s all connected. There should be, at least, a booklet about HD you can read before you go.  Or maybe a good-looking nurse (male, please) to explain it all real slow  ;).  I am glad I´ll soon be leaving there to do PD at home.
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angieskidney
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« Reply #10 on: July 27, 2006, 11:03:11 AM »

I know the first time I saw the inside of a clinic, I cried! I knew nothing of what was going to happen to me. My Dr. didn´t know how to explain it well and just left me there to talk to others. I agree that we patients are just pin cushions to most techs. I have a perfect example that happened at the clinic today. I had been noticing that most patients don´t stand in the middle of the scale. (our scale is floor level and can hold a wheelchair). I talked to the nurse on call and suggested that he put a large "X" in the middle of the scale with tape. That way, everyone would know where to stand.  The nurse just smiled at me and walked away. I felt like an idiot! I know there is a difference in weight if you stand on the edge of the scale or the middle of it. Thus, it makes a difference as to how much weight you lose on the machine. Well, you know  -  it´s all connected. There should be, at least, a booklet about HD you can read before you go.  Or maybe a good-looking nurse (male, please) to explain it all real slow  ;).  I am glad I´ll soon be leaving there to do PD at home.
I wish I could go back on PD  :'(

They just told me "you have to go to hemo at noon tomorrow" while I was an in-patient in the hospital. I went ... they hooked me up through my permcath. I didn't have a clue what any of the alarms or settings meant. I felt so alone since I didn't know anyone. Then I befriended Ian who's mom was on a machine and Jamie who laughed when Ian would tease me :P.

I really wish they had let me watch a video about hemo dialysis or something ... even now in "self care" I still don't know as much a year later that I thought I would know by now (
« Last Edit: July 27, 2006, 11:06:04 AM by angieskidney » Logged

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« Reply #11 on: July 27, 2006, 06:15:23 PM »

We need to write the Patient's Guide to Dialysis Book with handy hints and stuff in it.  We as a group could do it post by post in a separate topic.  Epoman could put it all together and get it published!
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« Reply #12 on: July 27, 2006, 06:47:58 PM »

We need to write the Patient's Guide to Dialysis Book with handy hints and stuff in it.  We as a group could do it post by post in a separate topic.  Epoman could put it all together and get it published!
Actually that is a great idea! In Montreal Canada 100 patients all posted their stories and it was published by the hospital they were all in. The book was put in the waiting room at my dialysis for anyone to take (a whole box of them) so I have 3 copies of it myself.

I think it is a great idea!
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« Reply #13 on: July 28, 2006, 09:27:39 AM »

Great idea  8) for a book or pamphlet.  Does Epoman agree to put it all together? Where would we publish how ($)?
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« Reply #14 on: July 28, 2006, 09:46:58 AM »

Heph & I weren't told anything! He was an emergency admission, they said we need to dialize you or you'll die. They put a temporary catheter in the top of his leg, is it the femoral artery (I think!), wheeled him into the dialysis unit, told me to stay outside for two minutes while they 'sorted' him out then they would call me. They left me for 1/2 an hour, which made it worse as I was hysterical anyway, then showed me in to where Heph was plugged into this machine where I could see his blood in all these tubes. We both cried our hearts out for the whole 3 hours, and the nurses just looked at us as if to say, "What is all the fuss about?" It was awful, noisy, smelled funny and was full of old people who looked half dead! Oh yeah and this guy who kept shouting, "I don't want to be on dialysis, take me off, you can't keep me here." As he rolled around on the bed looking deranged.

I think a booklet by patients or even a video or something would be an excellent idea. I don't think it would have helped us until after at least the first session though as it was all within a few hours of admission. They definitely need something to ease you into things.

Our hospital does run a patient education program for those who are monitored and know they will be starting dialysis though which apparently is very good. They have a lot of input from patients already doing the different types of dialysis as well as from doctors and nurses and stuff.
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« Reply #15 on: July 29, 2006, 10:45:24 AM »

Poor Epoman I just had to go and get you another project.  Maybe I should collect the hints and put them together and get them published?   Sooooo.....What does everyone think?  Should we put a booklet together to introduce a patient to dialysis?
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Remember your present situation is not your final destination.

Take it one day, one hour, one minute, one second at a time.

"If we don't find a way out of this soon, I'm gonna lose it. Lose it... It means go crazy, nuts, insane, bonzo, no longer in possession of ones faculties, three fries short of a Happy Meal, wacko!" Jack O'Neill - SG-1
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« Reply #16 on: July 29, 2006, 11:48:24 AM »

   Sooooo.....What does everyone think?  Should we put a booklet together to introduce a patient to dialysis?
that would be cool
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« Reply #17 on: July 29, 2006, 07:00:07 PM »

Great idea  8) for a book or pamphlet.  Does Epoman agree to put it all together? Where would we publish how ($)?

I know a publisher, I think this idea and is very feasible, and I to think it is a great idea. I have been thinking of writing a book. This could give me the start I need. I was thinking about a book that has actual posts from this site in it.
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« Reply #18 on: July 30, 2006, 11:45:43 AM »

Great idea  8) for a book or pamphlet.  Does Epoman agree to put it all together? Where would we publish how ($)?

I know a publisher, I think this idea and is very feasible, and I to think it is a great idea. I have been thinking of writing a book. This could give me the start I need. I was thinking about a book that has actual posts from this site in it.

You should name it "I HATE DIALYSIS" ;) Man would that EVER bring even MORE recognizability to your site :P
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Transplant 4/11/90
Hemo 7/05-present (Inclinic Fres. 2008k 3x/wk MWF)
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« Reply #19 on: July 30, 2006, 11:44:37 PM »

I had a good post all ready to go here, then the great white internet shark came through and ate it all up!
Epoman if you need help with the book let me know.  I will help as I can, if there is anything you want me to do.
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Ivanova: "Old Egyptian blessing: May God stand between you and harm in all the empty places you must walk." Babylon 5

Remember your present situation is not your final destination.

Take it one day, one hour, one minute, one second at a time.

"If we don't find a way out of this soon, I'm gonna lose it. Lose it... It means go crazy, nuts, insane, bonzo, no longer in possession of ones faculties, three fries short of a Happy Meal, wacko!" Jack O'Neill - SG-1
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« Reply #20 on: July 31, 2006, 05:35:39 AM »

I am applying for the post of proofreader.
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« Reply #21 on: July 31, 2006, 05:48:49 AM »

*grabs stapler and hot glue gun*   I can staple OR hot glue the pages together,,,,, your choice, only cost you 2 Tito's Taco's,  cuz the only thing better than a tito's taco is 2 tito's taco's,,,,,
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« Reply #22 on: July 31, 2006, 10:48:07 PM »

Gee, and here I was offering to help for free.  Allright now, if Goofynina is getting Tito's tacos I want something, too! 
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lifenotonthelist.com

Ivanova: "Old Egyptian blessing: May God stand between you and harm in all the empty places you must walk." Babylon 5

Remember your present situation is not your final destination.

Take it one day, one hour, one minute, one second at a time.

"If we don't find a way out of this soon, I'm gonna lose it. Lose it... It means go crazy, nuts, insane, bonzo, no longer in possession of ones faculties, three fries short of a Happy Meal, wacko!" Jack O'Neill - SG-1
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« Reply #23 on: August 02, 2006, 12:07:41 PM »

I will start a new thread on this subject. "THE BOOK"
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« Reply #24 on: August 02, 2006, 12:44:19 PM »

Patients who are interested are going to learn all they need to know about dialysis.  Then there are those who just go because there is no other alternative and who could care less. Asking questions at the unit is a good way to start.  Ask to see your labs and treatment reports to further understand what is happening.  This website for those who can access the internet is one of the finest tools I've ever seen for understanding the whole gamut of kidney disease from all perspectives.  What a blessing it would have been to have this site available when I was new and very afraid of what was happening and didn't know when something better might happen.  Internet access should be offered in every dialysis unit where it is feasible and that is most of them.  If I had to do this all over again I would pay for monthly broadband at the unit if it wasn't already there.  It would be really cool to make pc's available at every chair that would like one. 
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