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Author Topic: I dont know what to do now  (Read 13946 times)
Neo
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Dont let dialysis stop you...

« on: May 05, 2009, 09:59:26 PM »

As you all know from my other thread I thought I had resolved the issue with not getting the care I deserved. Well now the director of the unit or manager or what ever she is told my mother she was not allowed to be in there with me. I dont know what to do, this obviouusly is not fair or ethical in my opinion. I mean all Im asking for is for the nurse to give me the benadryl injection in a relatively timely manner. I realize she has other patients and I can wait. But I cant wait 10 to 30 minutes for a shot she could walk over in 20 seconds and give me especially when I can see she isnt doing anything. I dont know what to do
« Last Edit: May 05, 2009, 10:02:11 PM by Neo » Logged
G-Ma
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« Reply #1 on: May 06, 2009, 12:25:14 AM »

Have you talked to the Medical Director of the clinic...some Dr has to be associated with it, in my case it's my Neph.  I can't believe they aren't working with you on this, Teach you how to give your injections and then check on you.  What is this a sick power play??  Take the stick..........     :Kit n Stik;
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Lost vision due to retinopathy 12/2005, 30 Laser Surg 2006
ESRD diagnosed 12/2006
03/2007 Fantastic Eye Surgeon in ND got my sight back and implanted lenses in both eyes, great distance & low reading.
Gortex 4/07.  Started dialysis in ND 5/4/2007
Gortex clotted off Thanksgiving Week of 2007, was unclotted and promptly clotted off 1/2 hour later so Permacath Rt chest.
3/2008 move to NC to be close to children.
2 Step fistula, 05/08-elevated 06/08, using mid August.
Aug 5, 08, trained NxStage and Home on 9/3/2008.
Fistulagram 09/2008. In hospital 10/30/08, Bowel Obstruction.
Back to RAI-Latrobe In Center. No home hemo at this time.
GOD IS GOOD
bette1
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« Reply #2 on: May 06, 2009, 05:59:25 AM »

It really p***** me off the way the dialysis industry treats it's patients.  We are paying a lot of money for substandard care.  You have to kick and sream to get treated like a human being.  I have no advice, but I feel you pain an give you a giant :grouphug;.
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Neo
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Dont let dialysis stop you...

« Reply #3 on: May 06, 2009, 08:26:17 AM »

Am I allwoed to give my own benadryl injections???
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Neo
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Dont let dialysis stop you...

« Reply #4 on: May 06, 2009, 08:27:42 AM »

Or do they have the right to not let me? Ive also called my doctor twice yesterday and he never called me back!! Is he allowed to not call me back??? This is insane!
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Rerun
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« Reply #5 on: May 06, 2009, 09:45:40 AM »

This is just a power play.  You may have to play hard ball and just not go.

You will have to be really careful but after your next dialysis session really watch what you eat and drink and just skip your next session.  Money talks and they won't get paid.  Call them in plenty of time so they don't set up for you and just say.  I am skipping a treatment due to lack of respect that I deserve as a renal patient and you won't get paid for today.

Now if you are on the transplant list this is not a good idea as they will get your for noncompliance.  One of the reasons I'm not on the list.

So, in that case demand a meeting with the medical director.

They are in a power play with you and your Medicare pays their salaries.  They need to remember that.
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Neo
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Dont let dialysis stop you...

« Reply #6 on: May 06, 2009, 09:56:19 AM »

Im filing a grievance with the ESRD network now.
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twirl
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« Reply #7 on: May 06, 2009, 10:15:54 AM »

Neo good for you -
we cannot have visitors in our unit anymore -
it sucks
I know why --- too many witnesses
my daughter used to come in and stay with me and we would share our little tv and we were not loud

I had another idea -- keep notes and write down the time you request the shot and the time you get the shot and have the nurse initial it
« Last Edit: May 06, 2009, 10:17:01 AM by twirl » Logged
David13
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« Reply #8 on: May 06, 2009, 10:19:25 AM »

I had another idea -- keep notes and write down the time you request the shot and the time you get the shot and have the nurse initial it

Twirl, I think this is an excellent idea!  Not only does it allow you to keep a record of what is being done (or not being done as the case may be), but it also makes the nurse aware that you are monitoring the situation.

« Last Edit: May 06, 2009, 11:49:47 AM by David13 » Logged

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breezysummerday
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« Reply #9 on: May 06, 2009, 10:48:23 AM »

couple of questions neo:

is this a private room?
how long does/has your mom stayed?
what does your mom do when she is there?
is there some type of policy in place where
family or friends could not be with you in the first place?
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Rerun
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Going through life tied to a chair!

« Reply #10 on: May 06, 2009, 11:50:32 AM »

I like Twirl's suggestions.  Keep a chart and have them initial it.  Tell them it was suggested by Medicare.

Twirl.... Medicare.... Potato....Potatoe

I also agree if there are no visitors allowed then they are hiding something.

                         :flower;

There is enough to worry about with dialysis you should not have to put up with bad staff problems.

Here is a hug.......   :cuddle;
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G-Ma
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« Reply #11 on: May 06, 2009, 02:00:20 PM »

Great idea Twirl     :bandance;
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Lost vision due to retinopathy 12/2005, 30 Laser Surg 2006
ESRD diagnosed 12/2006
03/2007 Fantastic Eye Surgeon in ND got my sight back and implanted lenses in both eyes, great distance & low reading.
Gortex 4/07.  Started dialysis in ND 5/4/2007
Gortex clotted off Thanksgiving Week of 2007, was unclotted and promptly clotted off 1/2 hour later so Permacath Rt chest.
3/2008 move to NC to be close to children.
2 Step fistula, 05/08-elevated 06/08, using mid August.
Aug 5, 08, trained NxStage and Home on 9/3/2008.
Fistulagram 09/2008. In hospital 10/30/08, Bowel Obstruction.
Back to RAI-Latrobe In Center. No home hemo at this time.
GOD IS GOOD
paris
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« Reply #12 on: May 06, 2009, 03:52:37 PM »

Keep excellent notes and use your cell phone to document times and activities (if it has a camera).  This is just stupid.   :cuddle;
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hurlock1
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« Reply #13 on: May 12, 2009, 10:26:12 AM »

They probably don't want to give you the Benadryl for your own good. Benadryl will make you sleepy, But it's an antihistamine, It'll dry you out. Later in the day, It'll make you thirsty, thirsty. In addition, BPH can be lowered by Benydril. In addition, Benidryl is easily obtained in capsule form anywhere. CHEAP! The techs and nurses aren't WAITRESSES!
 By your picture, you are young, AND SOUND LIKE A BIG CRYBABY! The other people in here are sympathizing with you, but sometimes you need to hear the truth rather than what you want to hear. being knocked out on drugs isn't the same as sleep. Sure, everybody would rather sleep through dialysis, but the techs and nurses need to come by every once in a while and see if you are alright. In my center, there is a TV with an internet connection, and Games to play.Plenty of Entertainment! I have a small DVD player that I bring and watch movies with sometimes. The horror of dialysis isn't really a horror. There's plenty of things to do  rather than be in a drunken stupor knocked out on Benadryl and even so it's something that you can easily. cheaply, provide for yourself. Rather than ask my caregivers for water, I bring my own. It's better than treating the caregiver like a waitress or waiter. They have important things to do. Sometimes just resting for them is important!
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paris
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« Reply #14 on: May 12, 2009, 10:40:17 AM »

Benadryl is commonly given to dialysis patients.  Neo does nocturnal dialysis. Take a moment a learn about the poster and you will find he is not a crybaby and has some real concerns.   

Neo, has anything changed at your center? Keep us updated.
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glitter
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« Reply #15 on: May 12, 2009, 11:50:27 AM »

They probably don't want to give you the Benadryl for your own good. Benadryl will make you sleepy, But it's an antihistamine, It'll dry you out. Later in the day, It'll make you thirsty, thirsty. In addition, BPH can be lowered by Benydril. In addition, Benidryl is easily obtained in capsule form anywhere. CHEAP! The techs and nurses aren't WAITRESSES!
 By your picture, you are young, AND SOUND LIKE A BIG CRYBABY! The other people in here are sympathizing with you, but sometimes you need to hear the truth rather than what you want to hear. being knocked out on drugs isn't the same as sleep. Sure, everybody would rather sleep through dialysis, but the techs and nurses need to come by every once in a while and see if you are alright. In my center, there is a TV with an internet connection, and Games to play.Plenty of Entertainment! I have a small DVD player that I bring and watch movies with sometimes. The horror of dialysis isn't really a horror. There's plenty of things to do  rather than be in a drunken stupor knocked out on Benadryl and even so it's something that you can easily. cheaply, provide for yourself. Rather than ask my caregivers for water, I bring my own. It's better than treating the caregiver like a waitress or waiter. They have important things to do. Sometimes just resting for them is important!

Maybe his experience is different then yours- my husband suffered greatly at dialysis- Benedryl was often used, and the people who work there and administer it- are doing their jobs, and getting paid to do so.

Calling him a big crybaby is a personal insult and not allowed here- this board is for support and understanding. Who the hell are you to judge?
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« Reply #16 on: May 12, 2009, 12:18:21 PM »

Wow, hurlock, that's a lot of anger at someone you don't even know.

Some patients also need Benydril because of mild allergic reactions to the filter, the heparin, iron, etc.  I don't believe the pill form is not nearly as effective as the IV version, either.
And yes, actually, the nurses and techs are there to serve us - it's part of their job to care for their patients - and that especially includes giving needed meds in a timely fashion.  My center's techs and nurses cheerfully bring ice, blankets, kleenex, etc. within minutes of anyone asking, and most of the time even before we ask.  It's not like we can get up and get our own.
 
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paul.karen
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« Reply #17 on: May 12, 2009, 12:25:49 PM »

I agree Hurlock.

No one blasted you for being an alcoholic or addicted to pot??? 

I also understand taking a tough stance but you should know the facts before taking a tough stance.
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greco02
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« Reply #18 on: May 12, 2009, 06:55:53 PM »

There could be so many reasons someone made the decision not to let your Mom stay.  Jim isn't on dialysis yet and I don't even know very much about it, but I do know that I would want to be with him if I could, mainly to advocate for him.  Keeping a log is a great idea for everyone.  Might help while away the time a bit.  As for being a crybaby...that was a cheap shot.  My husband is anything but a crybaby but when he is needy (as many of us are often)  I will want to be there for him.   

You mentioned you were filing a complaint. Are you covered by health insurance?  Most plans have a grievance process.  Keeping the log with also help you keep track of the calls made to doctors and other administrators.  Another question, can you switch facilities?  Again, I don't anything about this but if you could change to a different provider perhaps that would convince the unit you use now that $$$$ walks if the service is bad!  Good luck Neo -  :o
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« Reply #19 on: May 12, 2009, 07:10:09 PM »

They probably don't want to give you the Benadryl for your own good. Benadryl will make you sleepy, But it's an antihistamine, It'll dry you out. Later in the day, It'll make you thirsty, thirsty. In addition, BPH can be lowered by Benydril. In addition, Benidryl is easily obtained in capsule form anywhere. CHEAP! The techs and nurses aren't WAITRESSES!
 By your picture, you are young, AND SOUND LIKE A BIG CRYBABY! The other people in here are sympathizing with you, but sometimes you need to hear the truth rather than what you want to hear. being knocked out on drugs isn't the same as sleep. Sure, everybody would rather sleep through dialysis, but the techs and nurses need to come by every once in a while and see if you are alright. In my center, there is a TV with an internet connection, and Games to play.Plenty of Entertainment! I have a small DVD player that I bring and watch movies with sometimes. The horror of dialysis isn't really a horror. There's plenty of things to do  rather than be in a drunken stupor knocked out on Benadryl and even so it's something that you can easily. cheaply, provide for yourself. Rather than ask my caregivers for water, I bring my own. It's better than treating the caregiver like a waitress or waiter. They have important things to do. Sometimes just resting for them is important!


WOW!!!! Chill hurlock, since you don't know NEO this was un-called for. Neo are you not on nocturnal? There for hurlock, most pt's use benydril to help them sleep during there time. Keep on them Neo as always you have been given some good ideas as to what to do.  OH and by the way the last time I checked we are able to come here and say what we want with out being called names. Also Hurlock before you call people names read about them find out why he uses benydril and why he has his mom there to watch his back, we are not here to judge one another :grouphug;
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« Reply #20 on: May 12, 2009, 09:19:22 PM »

I have tried to sleep at the dialysis center with out the Benadryl all night.  Let me tell you, sometimes even with it, it is impossible to sleep there.  It is often like trying to sleep in a train station with a steam engine right by your head.  Plus I have to get up, leave the center, and go to work with kids all day. Without the Benadryl some nights I would go absolutely nuts in the dialysis center during an eight hour shift! 
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« Reply #21 on: May 12, 2009, 10:28:39 PM »

Hurlock....This is a support network....and bullying or any of our loved members is not acceptable.  I think you owe Neo an apology!   
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« Reply #22 on: May 13, 2009, 08:25:31 AM »

I agree with Lucinda..................Sluff where are you?  Please let Hurlock know what is and what is not acceptable on these boards.
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Stoday
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« Reply #23 on: May 13, 2009, 09:17:58 AM »

So hurlock1 has a different point of view. Fine. varying opinions make for a more interesting board.

Rightfully, he's having to pay for it by having mud thrown at him  :boxing; But I'm sure he can take it.

His comment was aimed at another bloke who ought to be able to take such adverse commentry without breaking down in tears.
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Lucinda
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« Reply #24 on: May 13, 2009, 02:03:09 PM »

Stoday...This is a SUPPORT board and we don't kick anyone when they are down.  Male or female!!  Besides, I see no comment here from Neo objecting to Hurlock's comments so I would suggest that he DID take the "adverse comments without breaking down into tears."  And who is throwing mud?  We are protecting our own and I repeat.....there is no place on this board for bullying!   
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