I Hate Dialysis Message Board

Dialysis Discussion => Dialysis: General Discussion => Topic started by: Neo on May 05, 2009, 09:59:26 PM

Title: I dont know what to do now
Post by: Neo 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
Title: Re: I dont know what to do now
Post by: G-Ma 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;
Title: Re: I dont know what to do now
Post by: bette1 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;.
Title: Re: I dont know what to do now
Post by: Neo on May 06, 2009, 08:26:17 AM
Am I allwoed to give my own benadryl injections???
Title: Re: I dont know what to do now
Post by: Neo 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!
Title: Re: I dont know what to do now
Post by: Rerun 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.
Title: Re: I dont know what to do now
Post by: Neo on May 06, 2009, 09:56:19 AM
Im filing a grievance with the ESRD network now.
Title: Re: I dont know what to do now
Post by: twirl 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
Title: Re: I dont know what to do now
Post by: David13 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.

Title: Re: I dont know what to do now
Post by: breezysummerday 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?
Title: Re: I dont know what to do now
Post by: Rerun 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;
Title: Re: I dont know what to do now
Post by: G-Ma on May 06, 2009, 02:00:20 PM
Great idea Twirl     :bandance;
Title: Re: I dont know what to do now
Post by: paris 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;
Title: Re: I dont know what to do now
Post by: hurlock1 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!
Title: Re: I dont know what to do now
Post by: paris 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.
Title: Re: I dont know what to do now
Post by: glitter 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?
Title: Re: I dont know what to do now
Post by: jbeany 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.
 
Title: Re: I dont know what to do now
Post by: paul.karen 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.
Title: Re: I dont know what to do now
Post by: greco02 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
Title: Re: I dont know what to do now
Post by: lola 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;
Title: Re: I dont know what to do now
Post by: kitkatz 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! 
Title: Re: I dont know what to do now
Post by: Lucinda 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!   
Title: Re: I dont know what to do now
Post by: rose1999 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.
Title: Re: I dont know what to do now
Post by: Stoday 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.
Title: Re: I dont know what to do now
Post by: Lucinda 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!   
Title: Re: I dont know what to do now
Post by: twirl on May 13, 2009, 02:14:18 PM
Neo
I understand your situation more now - I had a fire ant attack at dialysis today and I thought I was going to scream -- I could not have benadryl because I only had 25 minutes left in treatment -- I had to get off early -- I could not stand it -- I signed the AMA --- I had only signed one other AMA when my husband called and told me our kitchen was burning down -- and that was 4 years ago --- I was miserable -
so I was told to ask for Benadryl when I first come in but how do I know if I will itch and burn ?
This is the first time I have had this happen and I am hoping it is the last time - I do not know who you could stand to itch like that --- and burn for 8 hours ...
if anyone is a cry baby on this website -- it is me ....
keep us informed
we care about you
twirl
Title: Re: I dont know what to do now
Post by: Neo on May 13, 2009, 11:49:40 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!


First of all  I get benadryl injections. not pills! second of all I do nocturnal for 8hours at night and i have chronic leg pain and it gets rid of it. Try reading my post before you make such an asinine comment. Im not getting the pills and you really just don't get it!.My Doctor prescribes it on dialysis becasue of my leg pain or I would not get through my treatments.  It is a crucial part of my dialysis. I bring a laptop and stuff as well but if I didnt have the benadryl I would be in too much pain and would not be able to do nocturnal dialysis which is the best way for anyone to get dialysis. And you have know Idea what I have gone through with this nurse. How would you like it if you were in intolerable pain and the nurse just ignored you til she felt it conveniently to come and give me the injection. Oh and by the way she was written up and warned by my DOCTOR , and director of the unit. So get your facts straight and dont tell me i am drug seeking. the ignorance in your post is astounding.
Title: Re: I dont know what to do now
Post by: Neo on May 14, 2009, 12:00:57 AM
Thanks to all of you who told this ignorant person what really goes on in dialysis. I didn't read that hes not on it yet. Wow! talk about ignorance. If he ever starts 8 hour nocturnal dialysis and sees how he likes it with out any way to sleep and relax his legs for that long, especially since units are loud!... Doesnt he understand we all want ot be independent but when your on that machine you are dependent on those nurses and if you are calling for them and they are ignoring you adn you are in excruciating pain, and you are stuck on that machine it can be the scariest thing in the world. Besides him, you all have been irreplaceable. I love you all! I talked to the director of the unit and she wrote up that nurse and so far through the first 2 nights Ive gotten my benadryl as soon as I ask for it and its been so much better. So hopefully it keeps up like this. and by the way hes 60! Someone should Wow people ask him what makes him an authority on someone who has been on dialysis since they were 24.Wow intolerant people really piss me off! ok im done rambling.. How is everyone else? you all should message me and keep in touch as I dont get to get on here taht much.. Your Friend, Matt
Title: Re: I dont know what to do now
Post by: Lucinda on May 14, 2009, 12:23:57 AM
Glad you are feeling better Matt and you are getting better treatment at your clinic.  I'm sorry you had to defend yourself from that kind of insensitivity but you know we are all on your side!!  I am really proud of how well you are handling your situation and I hate that this didn't strike you down a lot later in life.  Keep you chin up and I will definitely message you to keep up on your progress. Take care.  Love and hugs Cindy. xx :cuddle;
Title: Re: I dont know what to do now
Post by: G-Ma on May 14, 2009, 12:52:23 AM
Hurlock has evidently not seen someone trying to crawl out of a chair with tubes attached itching so bad and benadryl is on it's way..this during a daily session.  Benadryl is something that works for most dialysis patients and sleepy or not, if I itch from a reaction I want it NOW and the nurses are there to take care of us now.  We are more important than sitting at their stations doing whatever is done on the computer.  Please hang in there Neo........they all carry notepads, you can carry your own, note items and need signatures.  I think a few of those and your nurse may become prompt.  Can't hurt to try.
Title: Re: I dont know what to do now
Post by: kristina on May 14, 2009, 07:02:09 AM
Good luck Neo! I can well understand
that you feel vulnerable right now.
I do hope things are getting better!
 :grouphug;
Title: Re: I dont know what to do now
Post by: lola on May 14, 2009, 05:07:10 PM
 :thumbup; glad things are going better for ya Neo xoxoxo
Title: Re: I dont know what to do now
Post by: Wallyz on May 14, 2009, 10:36:10 PM
I'm as quick to say suck it up, cream puff as the next guy,  but the issue of dependancy on another person is serious.  If I cannot medicate myself, If I am dependant ont he nurse, then the nurse needs to by God respond when medication is necessary.  Is  Matt becoming dependent on Benadryl?  MAybe, maybe not.  It's not the nurses call, however.  It's Matt's and his doctors call, and the nurse is screwing up on the job.
Title: problem solved thanks everyone
Post by: Neo on May 16, 2009, 12:04:30 AM
Guys, im not dependent on benadryl. I use it only on the machine. It keeps the pain in my legs comfortable while im on the machine. I have never even had a cigarette in my life. Just thought I'd clear that one up. Benadryl injections for me on whilr dialysing is essential to me being able to get through my treatment in as little pain as possible. I wonder if i was 65 or 70 if that subject would have ever been raised. I doubt it.
Title: Re: I dont know what to do now
Post by: Sluff on May 16, 2009, 05:51:49 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!

Hurlock I think you are opening your mouth and it's time to insert foot.
First of all Neo is not taking benadryl to be knocked out. If you read his post and think before you write your response you might actually have known this. I know Neo brings other things to dialysis to pass the time. You would know this also if you actually read his posts and got to know him, before passing judgement. As for his age what does that have to do with any of this?
As far as the staff is concerned the patient or the patients insurance group is paying them for medical attention and treatment not to rest. Everyone deserves a break after a certain amount of time on duty but someone has to be on duty at all times to render aid to anyone who needs it no matter their ethnicity, age, sex, or stage of disease. We are free to speak our minds on this site that is why we are here but lets try to keep it limited to helping each other rather than looking for a way to provoke an argument. Everyone here has ESRD that links us together and while the rest of the world doesn't understand this disease, we surely do and we should.

Sluff/Admin
Title: Re: I dont know what to do now
Post by: hurlock1 on May 16, 2009, 07:35:18 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?

I didn't call him a big crybaby. I said he sounded like a big crybaby, When he could   go to the store and for $2.37 get a bottle of 100 benydrils at Walmart! If you don't see the difference in that I don't know what to tell you. And  if you're at dialysis at night and you're having a hard time sleeping, benydril  ISN"T the best sleep aid one way or the other. I was using benydril as a sleep aid. It not only made me retain water, but 10 - 12 after sleep it made me crave water. I mean! after I got off of benedryl I was having to take 2 - 3 kilos less of liquid every treatment. Sorry if I offended you Neo. I was in my own way trying to encourage you to be more "proactive"; rather than "blame" the staff for not doing something that you can do for yourself, just do it for your self.
Title: Re: I dont know what to do now
Post by: hurlock1 on May 16, 2009, 08:10:30 AM
Thanks to all of you who told this ignorant person what really goes on in dialysis. I didn't read that hes not on it yet. Wow! talk about ignorance. If he ever starts 8 hour nocturnal dialysis and sees how he likes it with out any way to sleep and relax his legs for that long, especially since units are loud!... Doesnt he understand we all want ot be independent but when your on that machine you are dependent on those nurses and if you are calling for them and they are ignoring you adn you are in excruciating pain, and you are stuck on that machine it can be the scariest thing in the world. Besides him, you all have been irreplaceable. I love you all! I talked to the director of the unit and she wrote up that nurse and so far through the first 2 nights Ive gotten my benadryl as soon as I ask for it and its been so much better. So hopefully it keeps up like this. and by the way hes 60! Someone should Wow people ask him what makes him an authority on someone who has been on dialysis since they were 24.Wow intolerant people really piss me off! ok im done rambling.. How is everyone else? you all should message me and keep in touch as I dont get to get on here taht much.. Your Friend, Matt
No reason to get pissed off, Matt. It still seems like you're directing your anger in the wrong direction. benedryl is NOT a pain medicine. It's an antihistamine. It's often taken with pain medicines. But it's not a pain medicine. To me, It just seems like you just want what you want when you want it. "The doctor said. . . " I'm just telling you the truth rather than what you want to hear. If indeed the doctor's "prescribing" you benedril for "pain", maybe I'd better get in on that. I've had motorcycle wrecks, fell from the precipice of a 30' building broke both the bones in my lower right leg, and separated my hip. and did horrible damage to my lower back. After sitting in a dialysis chair, with pillows, I am in excruciating pain. I guess I should take an antihistamine  and be done with it. I'm not being insulting. I'm being supportive. Any antihistamine injection is easily replaced by the right amount of capsules. But, if you and everybody who is sitting around waylaying the caregivers for not running over there and giving you your antihistamine shot is of the consensus that I'm not being supportive of you because I'm telling the truth rather than what you want to hear, Bad caregivers! They are just not giving you the shots because they secretly like to make you suffer! I'm being supportive when I say I'm sorry when I say, "I'm sorry for saying that you sounded like a big crybaby." and I mean that. I do however encourage you to do what you can to take some of the burden of making yourself comfortable at dialysis.
Title: Re: I dont know what to do now
Post by: hurlock1 on May 16, 2009, 09:18:34 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;

I don't know, but I don't know if it's a good idea to suggest that a person should be able to give himself shots that would knock himself out. I don't think that the effects of benedril are exceedingly  pleasurable, but you never know from one person to the next. We assume that because benedril is an over the counter medicine that it's perfectly safe, but benedril injections should be given by a nurse. After the suggestion that he COULD possibly give himself the injection, he responded twice really quickly. "Can I?, Can I really?" It really sounds like "Drug seeking" activity. I know that being on the other side of this discussion sounds like I'm being unsupportive, but I'm really not. I have been in recovery for 20 years. That may not mean anything to many of you, but it means that I am really atune to drug seeking behavior. I again know that benedril isn't a pleasurable drug to many, but if indeed the antihistamine is being taken for pain, it makes me wonder in actuality what kind of pain is this being taken for? Leg pain? It didn't do anything for my constant leg pain. I'm not creating an intervention here. That's not my job. But it wouldn't hurt to consider. There have been people addicted to Dramamine, a motion sickness medication. Glue!, all kinds of stuff that normal people don't consider addictive. "Nah! he wouldn't be taking drugs for the effect of the drug! That just doesn't make sense!" To suggest that just seems outrageous! Or does it?
Title: Re: I dont know what to do now
Post by: hurlock1 on May 16, 2009, 09:31:14 AM
I'm as quick to say suck it up, cream puff as the next guy,  but the issue of dependancy on another person is serious.  If I cannot medicate myself, If I am dependant ont he nurse, then the nurse needs to by God respond when medication is necessary.  Is  Matt becoming dependent on Benadryl?  MAybe, maybe not.  It's not the nurses call, however.  It's Matt's and his doctors call, and the nurse is screwing up on the job.
It could be in the doctors instructions. It could be that Matt is indeed becoming dependent on benedril. And that's why he's being made to beg for what he wants.
Title: Re: I dont know what to do now
Post by: Wallyz on May 16, 2009, 10:01:54 AM
Apologies, Matt, I didd not intend to further the debate of dependence.  i was trying to say that it doesn't matter.  The issue is your well being and the professionalism of the nursing staff. 

His well being is being negatively affected by the lack of professionalism.  Hurlock, you don't have enough information or relationship to charge otherwise.  Time to zip it.
Title: Re: I dont know what to do now
Post by: hurlock1 on May 16, 2009, 08:45:06 PM
Apologies, Matt, I didd not intend to further the debate of dependence.  i was trying to say that it doesn't matter.  The issue is your well being and the professionalism of the nursing staff. 

His well being is being negatively affected by the lack of professionalism.  Hurlock, you don't have enough information or relationship to charge otherwise.  Time to zip it.
I don't really have any more information than you do. Nobody here has noticed anything I've written! I'm saying that people me, you everybody should take responsibility for their own comfort! If you want drugs that you can obtain for yourself don't blame someone else! I'm being made feel that I'm some kind of ogre here because I'm facing the truth. I'm just not saying what the guy wants to hear.  I'm not charging any one with anything. I've pointed out possibilities. I didn't say this guy is a benedril head, I said that it was something to consider. I did mention that one way or the other that taking a drug by IV or pill is the same thing. I didn't say except for the initial rush. $2.37! That's how much 100 benedrils cost at Walmart, (The Equate brand) I bring my own water to dialysis just to keep from asking the caregivers to bring me water. I guess that not expecting caregivers to be treated as waiters and waitresses is being non-professional. I've only been on dialysis for a year I see what they do in my center. every minute is taken, even if for a few minutes to get off of their feet. If that is the reason that they don't just bring benedril strait over and fix'em up, maybe they need to just not get a chance to sit down. They should be at Matt's beckon call. Again Matt, I'm sorry that I ever entered this conversation. I'll stay out of it next time.
Title: Re: I dont know what to do now
Post by: okarol on May 16, 2009, 11:32:33 PM
 :cuddle; Love you Neo.
Title: Re: I dont know what to do now
Post by: MandaMe1986 on May 17, 2009, 02:35:55 PM
Neo even if you were dependent on benadryl no one has any place to say anything. NO ONE!  And I agree if you were 65 or 70 no one would question it.  Just like people think just because I am 23 that I don't have joint problems or memory issues.  I am sorry that even on this site where you come for love and support people are questioning you. 

I do hope it all gets better soon. Keep us updated. I don't care if you come on and b***h and mone about the same thing everytime. That is what we are here for.   :cuddle;
Title: Re: I dont know what to do now
Post by: twirl on May 17, 2009, 04:26:24 PM
we got your back, Dude     :cheer: :cheer: :cheer:
Title: Re: I dont know what to do now
Post by: lola on May 17, 2009, 05:37:10 PM
 :cuddle; :cuddle; :beer1;
Title: Re: I dont know what to do now
Post by: Lucinda on May 19, 2009, 01:16:39 AM
Hurlock....just because Matt is young doesn't mean he is drug dependent.  Nor do I believe he is treating his caregivers as waiting staff.  I get migraines on dialysis and when I was doing my training the girls in the centre told me that as soon as I got the faintest sign of a headache to let them know immediately and they would give me the medication to avoid a crippling migraine.  I think giving medication when it is needed is a priority in their caregiving.  I am sure Matt would happily wait for something that he didn't believe was a necessity or urgent.  I think it is time to leave the poor kid alone and drop the thinly veiled accusations.  Regardless of what you might think it is not being supportive.....it is pretty destructive really.

Loving you Neo.....take good care of yourself and we are all here for you!!! (well the majority of us anyhow)   :cuddle; :cuddle; :cuddle; :cuddle; :cuddle; :cuddle; :cuddle; :cuddle; :cuddle; :cuddle; :cuddle; :cuddle;xxx   
Title: Re: I dont know what to do now
Post by: Neo on May 19, 2009, 01:18:20 AM
WRONG! I do not take capsules they are absolutely not the same, Ive tried taking pill form and it does nothing for my legs! Benadryl works as a muscle relaxer on me, and the nurse was written up by the doctor and director of the unit! You know what I DON'T WANT YOUR OPINION! You obnoxiously just don't get it. I am working on my masters Degree And am a year and a half away from being a physician assistant so I know what works and what doesn't work on me, and I am willing to bet I know about 50 times more about medicine and kidney disease and how each medicine works! Tell me what is better for me an injection of Morphine or benadryl.  BEG FOR WHAT I WANT? I was getting substandard treatment do you not get that. I am on THE NIGHT shift and believe me they have 5 hours in the middle of the night in which they sit at the nurses station and watch TV! Ive been there 5 years so i know exactly whats going on. I don't expect them to run to me when I call but waiting 30 minutes while the nurse watches a movie right in front of me and ignores me is WRONG! I only wish to be treated like any other patient in the unit, and I had to fight for that. Drug seeking my ass! Benadry first of all works different for different people. Second of all I also see a pain specialist for my leg pain because it is chronic, so I think Ill listen to my DOCTORS unless you are one? Didn't think so.  You obviously need to think before you accuse someone of being a drug abuser. I find that offensive and it is wrong and I am reporting you to the moderator of this site because this is an attack on my character. The reason the others believe me is because I have known them the last 2 years and they KNOW ME  and my history. Out of the many people who have posted why do you think that they are supportive of me and are telling you basically the same thing I have said. BECAUSE YOU ARE WRONG! I think I deserve an apology from you, and I think you should leave me the hell alone when your done. You just cant admit it. This better be the last time I hear anything from you regarding me. I repeat do not post on this board about me. THANK YOU TO MY FRIENDS ON HERE WHO HAVE BEEN SENDING ME PRIVATE EMAILS TELLING ME HOW WRONG HE IS, I HAVE RECIEVED SO MANY, AND YOU ALL DON'T KNOW HOW MUCH IT MEANS TO ME YOU ARE TRUE FRIENDS AND YOU HAVE HELPED ME GET THROUGH SO MANY TOUGH TIMES WHILE ON DIALYSIS. YOU AER ALL MY GUARDIAN ANGELS, SO ONCE AGAIN THANK YOU..
Title: Re: I dont know what to do now
Post by: rose1999 on May 19, 2009, 01:30:31 AM
Matt you do NOT need to justify yourself to anyone, you were only saying that you weren't being treated right, it doesn't matter whether that was because you needed Benedryl or needed the TV turned up/down or anything in between.  WE understand your frustrations and we care and we will always be here for you.  :grouphug;
Title: Re: I dont know what to do now
Post by: Neo on May 19, 2009, 01:52:59 AM
(POSTED BY HURLOCK)I quit drinkng in 1990. Previous to quitting, I could get some weed and be fully entertained and not have to drink.
(I was an alcohoholic) The problem was, I would begin to run out and I would invariably go to the liquor store and get some beer/whiskey/ or wine and be right back were I started. I have pain in my joints; hips, knees, ankles, thumbs. i take several "pain pills" tylenol, ibuprophen, etc. The side effects makr me feel almost as bad  as the pain itself, upset stomach, a certain tylenl feeling, etc..
My state, New Mexico, has a medical marijuana program. In my life, I have very few responsibilitiess, having a prescription I would never run out and have to resort to drinking. I really think that it could help me with my pain.
I never had a problem with weed, other than trying to get it. I think that it would be a good fit.  8)

Well EVERYONE this explains it he (hurlocks post is above) has been an addict. I dont drink, don't smoke, and have never tried marijuana. And you criticize me of abusing benadry?!?! That has got to be the STUPIDEST thing I have ever heard. I think you need to take a long look at yourself before you tell someone else they are drug seeking. So you are going to smoke weed for pain, and you criticize me for benadryl? This better be the last I hear from you..You are quite a hypocrite.
Title: Re: I dont know what to do now
Post by: Lucinda on May 19, 2009, 02:46:55 AM
Hurlock....just drop it now....I think you have said enough, don't you.  This is Neo's post and he has rightfully asked you to butt out.  If you can't say something supportive say nothing at all.  As for telling Matt you are telling him what he needs to hear rather than him listen to those supporting him on this site then I have something to say to you.  You are a bully, you are ignorant and you have absolutely no idea what you are talking about.  ABSOLUTELY no idea. You have no right to accuse Matt of being drug dependent. You are the one with the addictive nature and if taking medication makes Matt drug dependent then the whole of the IHD family should be in rehab.  I think it is sad for you that you feel the need to take your blemished past out on Matt.  You won't find support here if you are going to persist with this unfounded and hurtful mud slinging.  Keep your chin up Matt and remember.....there is always one! xxx 
Title: Re: I dont know what to do now
Post by: Sluff on May 19, 2009, 05:26:00 AM
Apologies, Matt, I didd not intend to further the debate of dependence.  i was trying to say that it doesn't matter.  The issue is your well being and the professionalism of the nursing staff. 

His well being is being negatively affected by the lack of professionalism.  Hurlock, you don't have enough information or relationship to charge otherwise.  Time to zip it.
I don't really have any more information than you do. Nobody here has noticed anything I've written! I'm saying that people me, you everybody should take responsibility for their own comfort! If you want drugs that you can obtain for yourself don't blame someone else! I'm being made feel that I'm some kind of ogre here because I'm facing the truth. I'm just not saying what the guy wants to hear.  I'm not charging any one with anything. I've pointed out possibilities. I didn't say this guy is a benedril head, I said that it was something to consider. I did mention that one way or the other that taking a drug by IV or pill is the same thing. I didn't say except for the initial rush. $2.37! That's how much 100 benedrils cost at Walmart, (The Equate brand) I bring my own water to dialysis just to keep from asking the caregivers to bring me water. I guess that not expecting caregivers to be treated as waiters and waitresses is being non-professional. I've only been on dialysis for a year I see what they do in my center. every minute is taken, even if for a few minutes to get off of their feet. If that is the reason that they don't just bring benedril strait over and fix'em up, maybe they need to just not get a chance to sit down. They should be at Matt's beckon call. Again Matt, I'm sorry that I ever entered this conversation. I'll stay out of it next time.


Enough said.

Everyone here is allowed their own view point as long as it is not directed at belittling another member. I feel some comments made were a direct attack on Neo.  When you want to get your point across please do it with a little more tact. Your entitled to your opinion just as much as anyone else, just try to word it in such a way that is doesn't look like a personal attack.

Sluff/Admin
Title: Re: I dont know what to do now
Post by: hurlock1 on May 19, 2009, 09:30:53 AM
Well EVERYONE this explains it he (hurlocks post is above) has been an addict. I dont drink, don't smoke, and have never tried marijuana. And you criticize me of abusing benadry?!?! That has got to be the STUPIDEST thing I have ever heard. I think you need to take a long look at yourself before you tell someone else they are drug seeking. So you are going to smoke weed for pain, and you criticize me for benadryl? This better be the last I hear from you..You are quite a hypocrite.

The stigma of being an addict is different from being an addict in recovery. I have been in recovery for twenty years. :) Just because I said that I was thinking of trying medical marijuana doesn't mean I was smoking it. I am always going through real pain and don't think that an antihistamine is going to help ME. And further more,  I never said that you were an addict. I said that there was the possibility that you were. There is a huge difference. Benedryl isn't known as a "fun" drug. But like I said, there have been people that have  been addicted to Dramamine, and all kinds of other drugs that seemed like they were completely innocuous. Again sorry Matt for getting under your skin. The only reason that anyone would get offended by my language about this, probably thinks that there may be a little truth to it.
Title: Re: I dont know what to do now
Post by: paul.karen on May 19, 2009, 09:52:49 AM
hurlock congrats on your recovery.

Sluff said it best.  It is all in the way it is worded.  After rereading your posts i can kinda see where you may be playing the tough love gig.  But when you CAPITIALISE certain parts of your talking points it looks like you are attacking.

Wording can be defined by people as having different meanings then they actually do depending on how one reads or conceives it.

No need arguing about how we prefer to do our own dialysis practices.
heck it isnt politics it is our comfort and our lives.

Title: Re: I dont know what to do now
Post by: Neo on May 19, 2009, 10:16:40 AM
Hurlock....just drop it now....I think you have said enough, don't you.  This is Neo's post and he has rightfully asked you to butt out.  If you can't say something supportive say nothing at all.  As for telling Matt you are telling him what he needs to hear rather than him listen to those supporting him on this site then I have something to say to you.  You are a bully, you are ignorant and you have absolutely no idea what you are talking about.  ABSOLUTELY no idea. You have no right to accuse Matt of being drug dependent. You are the one with the addictive nature and if taking medication makes Matt drug dependent then the whole of the IHD family should be in rehab.  I think it is sad for you that you feel the need to take your blemished past out on Matt.  You won't find support here if you are going to persist with this unfounded and hurtful mud slinging.  Keep your chin up Matt and remember.....there is always one! xxx

thank you Lucinda ;D, and everyone else for your support.I come here to get away from things and get advice and support, and you all have helped me through so many things. I dont come on here to get attacked. I am open to all your suggestions which I have actually used quite often. I want you to tell me what your really thinking when i tell you things as well because i respect your opinions. But Hurlock..enough, just stop posting about me period or in my posts. I DONT want your opinion. Think what you want i don't care but don't post it on these boards. If it regards me in any way just don't do it.
Title: Re: I dont know what to do now
Post by: okarol on May 19, 2009, 10:22:14 AM

No need arguing about how we prefer to do our own dialysis practices.
heck it isnt politics it is our comfort and our lives.

Well said.  :thumbup;
Title: Re: I dont know what to do now
Post by: dwcrawford on May 19, 2009, 11:56:01 AM
So far the only thing I've learned about this process is that I don't  know very much at all.  What I do know at this point is that none of us react to the same treatment, the same words or comments, etc. in  the same way.  Also, we don't usually expect the same things from our dialysis unit, nurses and techs. 

Please try to understand each other and respect each other's ponits of view.  If nothing else this web site can give you a sense of well being and security in numbers.  Stick together people.
Title: Re: I dont know what to do now
Post by: paris on May 19, 2009, 12:26:05 PM
Very well said, DW.   :thumbup;
Title: Re: I dont know what to do now
Post by: pelagia on May 19, 2009, 11:52:53 PM
I think of IHD as a "safe zone."  All for one and one for all get the IHD family through the rough patches.  This is not the place for tough love.  That comes three times a week or more at dialysis!
Title: Re: I dont know what to do now
Post by: Hanify on May 20, 2009, 02:10:38 AM
I'm astounded that there are centre's that don't let you have visitors!  My husband would have had a fit if he wasn't allowed to come and sit with me.  Our centre was really pokey and small too, but the nurses always encouraged family to come in.  There was never anyone who made lots of noise or anything.  We had shared tv's too, and everyone just worked out what was on, and didn't have it too loud.  Keep taking notes Neo - and know we're all sending good thoughts your way.
Title: Re: I dont know what to do now
Post by: dwcrawford on May 20, 2009, 03:42:11 AM
I wish they would limit visitors.  Maybe because I don't have any.  Put some entire families comes in and have family reunions.  Noisy but I question suck things as more chances of infections.  But what do I know?
Title: Re: I dont know what to do now
Post by: keith on May 20, 2009, 04:19:37 AM
i jus now saw this and i dont kno if this may help but here goes neo have you asked ur doc if u have rls ( restless leg syndrome? while i was on dialysis i had it and they gave me lyrica for it n remember ppl are gonna speak on things and once they do you see what kind of a person they are. and far as visitors they dont want visitors because blood andinfection can become air born or what if a patient crashes an goes out
Title: Re: I dont know what to do now
Post by: G-Ma on May 20, 2009, 01:59:42 PM
Hey keith how are you???? havn't see you post in a long time...

neo..I am so proud of you for continuing with your studies..what area are you planning on working in?? If I read it I don't remember...my favorite "Dr" always have been Nurse Practitioners.  I think they/you always are more up to date on everything.  Just my  :twocents;

Yes, we all need to watch each others back because no one else will.

Also, please remember...nurses always should be noting what we are eating, meds we are taking, even over the counter, and fluids we are drinking.  This is for our health.  I don't even take my own tylenol along, I just ask when I feel a major migraine coming on like has been said on here and I get taken care of.   
Title: Re: I dont know what to do now
Post by: Hanify on May 20, 2009, 03:02:50 PM
I wish they would limit visitors.  Maybe because I don't have any.  Put some entire families comes in and have family reunions.  Noisy but I question suck things as more chances of infections.  But what do I know?

I hadn't thought of the infection side of things - and I guess many of us wouldn't want strangers watching while we had low bp fits.  But it makes the time go way faster if you can have visitors.
Title: Re: I dont know what to do now
Post by: hurlock1 on May 21, 2009, 11:27:18 AM
They don't allow visitors in the room when they are hooking people up. My sister was visiting from Houston, tx and  she spent one treatment day with me at dialysis. At the time, I was on an eleven o'clock shift. While they were hooking me up and others, they had my sister sit out in the lobby. She was allowed to come back in after. I hate to say this because of the trouble we've had before, but I remember that you said that you've been on dialysis five years. It would seem that you'd been through all of this before. Maybe not. I don't think that they are singling you out for bad treatment. If they are, the next time the NP or Neph come around remember to bring these issues up. When I have issues; when I get home I write them up in a formal letter, and print several copies up. I keep them in my bag and give one copy to the Neph when he makes his rounds. I give one copy to the facility's adminestrator, and one copy to the nurse practitioner, and to whomever else is inclined to read it. Because I don't have recall when the time comes. I've even gone as far as to send letters to the nursing association. The printed word carries some weight! :)
Title: Re: I dont know what to do now
Post by: dwcrawford on May 21, 2009, 11:34:34 AM
I really hate to say this, but I am ending my 4th week at the center tomorrow and I've not had one bit of an issue with any of the staff.  Some of the patients are kind of obnoxious and some of the visitors are loud but I suppose if any of my friends ever go with me they'll be obnoxious and loud too.  But so far, I've had every issue addressed quickly and efficiently.  Maybe five years from now I'll have complaints...

Hey, be good to each other... even the nurses, techs and rest of the staff. 
Title: Re: I dont know what to do now
Post by: kitkatz on May 22, 2009, 03:51:51 PM
I really hate to say this, but I am ending my 4th week at the center tomorrow and I've not had one bit of an issue with any of the staff.  Some of the patients are kind of obnoxious and some of the visitors are loud but I suppose if any of my friends ever go with me they'll be obnoxious and loud too.  But so far, I've had every issue addressed quickly and efficiently.  Maybe five years from now I'll have complaints...

Hey, be good to each other... even the nurses, techs and rest of the staff.




I am pretty sure DW you just get on in there and make yourself part of the family at the center, don't you?  :rofl;
Title: Re: I dont know what to do now
Post by: dwcrawford on May 22, 2009, 05:47:24 PM
Yep...  I did.  Tinah is home...