My turn to vent..

[7piglets]

I have a few nurse that I find just down right rude..When they are hooking me up via perma cath I have to tell them (4 x s now) to put on their mask and give me one>.. Then on fri I was in a dead sleep and she went to grab my perma cath which is on my chest ..I thought I was going to break her hand I told her pls do not reach on to me just wake me first ..She got po'ed ..then her and the other nurse kept walking over by my machine and talking in a different language.. I found this just down right RUDE.. To add to things it grosses me out the way they clean the chairs (now to be fair I am one of those people who get sceaved sp? easily..but they just squirk once on a papertowel with bleach and use that for the whole chair , table thing, and machine..the table always has dried looking blood on it (might not be blood but definately looks like it )
Then the dietician gives me a 'report card" and talks down to me like I am in grade school..Here are your numbers for today ..Oh Mrs V... You need to do xyz I know you can...Come on I pay more in taxes then you make in a year yet you talk to me like you are better then me..
I AM SO BEYOND FRUSTRATED  AHHH I feel better now thanks

[Chris]

I hope the dietitian didn't give you that smiley face report card crap. That pisses me off also about those dietitians. One squirt of bleach on a paper towel isn't going to do anything to germs, but piss them off pretty much. That is not proper disinfecting technique. The bleach is probably diluted also which doesn't help matters. They need to spray it on the surface and let it stand for a few seconds to get some sort of action, then wipe it off. What did they do, go across the street and pick up some fast food workers

Keep standing up for yourself and bring up the cleaning condition to the manager if the head nurse doesn't do anything. If that doesn't work, we'll find someone to contact to complain to!

[G-Ma]

Sounds like we have to start a list of complaints............hmmm?

[peleroja]

I know just what you mean.  When I was on hemo the nurse would rip the Tegaderm off my permacath.  I had to tell them over and over to pull it off gently.  I still have scars!

[Adam_W]

Ahh, sometimes it's good to rant. I know what you mean about the gloves/mask. There was one time when I was in-centre when the tech started to take me off the machine using my permacath. I automatically put my mask on, and she put her gloves on but no mask. Both me and the nurse told her at the same time to put a mask on. She did, but she got a good ass chewing for it. And don't get me started about the dietitians talking to us like we're in grade school. All the dietitians that I've had have been very nice, but I had to "train" them to not give me the grade 1 smiley face crap. My current dietitian just gives me the full printout of my labs so I can look over them. I'm sooooooo glad I'm on home dialysis and I only have to worry about one "cook" working with my dialysis (sometimes I can be a real cook  ). Just give'm hell whenever they act like that.

Adam

[RichardMEL]

Sometimes dieticians have no empathy!! Sometimes I feel like telling them "hey you try and limit your fluids to ~1l a day and think about every meal you are having what's high in this and that" and so on. I work my butt off to keep within the limits and my labs show it, but then they give me grief still "You could have more egg" or "you can have more tinned fruit" OMG get out of my face!! I'd rather they just said "Hey it's great your potassium is 4.3 and your calcium is this and your other labs are all within the limits... keep up the good work!" and bugger off. But nooo they have to tweak and improve and somehow make me feel like all the efforts I am doing are not enough.

That's why when I have a cheeseburger for lunch I virtually stick my finger up to them because damnit I want to at least live life and enjoy SOMETHING.

Sure if my labs go out of whack then give me grief but until then, like Jack says in "A few good men" something like "I'd prefer you said "thank you" and quietly went on your way...."

[petey]

Don't let them get by with anything, 7piglets!  This is YOUR body, your health, your life!

Through the years, I have earned -- in many aspects -- the reputation of being a "bitch" where Marvin's treatments and care are concerned.  "Don't you think you should..." I've said hundreds of times to nurses/techs who were caring for Marvin.  Almost all of the time, they would say, "Oh, yeah.  Thanks for reminding me."  The times when they've ignored or denied my request for safety in patient contact, I've said, "STOP !  You are NOT going to touch Marvin/his access until you...."  I have found that the louder I get, the more attention I get.  (This is awful to have to "fight" for something like this, isn't it?  But I have done it, and I will continue to do it.)

Just last December, I had a run-in with a surgical intern who was assisting Marvin's surgeon.  The intern came in to check Marvin's OPEN wound before the surgeon came in (we were in the hospital's clinic for a check up).  The intern -- whom we had never seen before --- walked in and said to Marvin, "Okay, jump up on the examining table and let me have a look at that wound."  I said, "Aren't you going to wash your hands and put on gloves first?"  He said, "I washed my hands outside in the hall."  And I answered, "We've been coming to this exact clinic for 13 years.  There are NO sinks in the hall.  The closest sink to this one (there was one in the exam room) is in the restroom way down the corridor and to the right.  That's not good enough for me."  He just sort of "Hmph-ed" me and kept walking toward Marvin.  I stood up between them (he and I were just about nose-to-nose because those exam rooms are small) and I said, "My husband has an OPEN wound that I've been packing for three weeks.  We have worked extremely hard to make sure it stays clean, sterile, and uncontaminated.  You are NOT going to touch Marvin until you have washed your hands and put on gloves."  He said, "I told you my hands were clean" (with a cocky, I'm-in-charge attitude).  "Humor me and wash them again in my presence," I said (kind of in a nasty, condescending tone but with a FIRM conviction).  "It certainly won't hurt you.  And, you'll find sterile gloves on the top shelf of that cabinet on the wall.  If you'll tell me what size you wear, I'll be glad to get you a pair."  (Yes, I know where the supplies are in the room -- definitely been there too many times!)  He just looked at me with his eyes saying, "Bitch!"  But, he washed his hands thoroughly and I assisted him with putting the sterile gloves on.

The intern checked Marvin's wound (and as he started to leave the room, I reminded him to put a sterile drape over it) and went out.  The surgeon came in a few minutes later (after an update in the hall from the intern).  This surgeon has operated on Marvin about 20 times during the last decade.  He came in the room, hugged me (as he always does), and said, "You're still giving them hell, aren't you, girl?"  "Yes," I said.  "You know how I am."  After the surgeon -- who washed his hands and let me help him with his gloves -- checked Marvin's wound and re-packed and re-dressed it, he gave that intern a terse, 5-minute lecture on keeping a wound sterile and the importance of hand-washing (right in front of us!).  I didn't say anything, but Marvin said the look on my face was saying, "Told you so!"

The surgeon shook Marvin's hand, told him the wound looked good, told him he'd see us again in three weeks, and hugged me again.  He then told me, "Where Marvin is concerned, don't let up!"  (I love this surgeon -- not only is he the BEST surgeon in the world, but he's also a great guy with a terrific bed-side manner!)  The surgeon washed his hands again before he left the room -- and the intern did, too!

At first, I'll be nice about it.  But, if they don't do what I know they should do, I will get loud and demanding.  I don't care if they call me a bitch -- there are worse things.

This is another reason why I love home hemo -- I KNOW I'm following the safety precautions!

[angela515]

Tell 'em like it is and don't let them push you around. Complain up high if needed. As for dieticians, tell them the first time nicely you don't need to be talked to like that, and if it don't stop, you know what to do. Honestly, you can eat perfectly to the "renal diet" and never go over one little bit and still have something on your labs not right, we are living with non functioning kidneys and dialysis doesn't take care of everything no matter what kind of dialysis it is. *shrug*

[Stacy Without An E]

I would love to see a talented documentary filmmaker do an expose on Dialysis clinics across the nation.  Both qualified and disfunctional clinics could be showcased and a few patients across the nation could be followed so viewers could understand fully not only what we endure, but also the poor care we sometimes receive.

Of course, with a film camera around, everyone would probably be on their best behavior.

This affects a huge proportion of the population and I'm surprised no one has stepped forward to address this issue.

[IUNurse]

Petey, can't say taking care of Marvin (your husband?) wouldn't make me nervous!  But I don't blame you one bit- I would be protective over my family too!

[petey]

Petey, can't say taking care of Marvin (your husband?) wouldn't make me nervous! But I don't blame you one bit- I would be protective over my family too!

IUNurse -- yes Marvin is my husband, and, yes, I realize that I have made a lot of nurses, techs, and even doctors nervous when they were taking care of him.  His home hemo nurse (who's a great big guy and just as vocal as I am -- we've butted heads several times) told me bluntly one day, "You're intimidating because you're intelligent, you're aggressive, you know as much about dialysis, ESRD, and transplantation as most of us in the medical field, and you absolutely refuse to accept less than perfect care for your husband."  I don't know how he meant this statement, but I took it as a compliment!

The surgeon I mentioned above is one of the few who does not feel intimidated at all by my over-protectiveness.  I have even "assisted" him numerous times when he packed a wound for Marvin, removed a permcath, stitched up this place or the other, etc.  When we go for check-ups or when he comes by Marvin's hospital room on rounds, he doesn't bring a nurse with him -- he knows that I know what to do to assist him in Marvin's care and it doesn't bother him that I do it.   He also follows all the precautions, so I have nothing to be vocal with him about.

My personality -- in my daily life aside from being Marvin's caregiver --  is one that is self-confident, aggressive (sometimes), loud (sometimes), and definitely not timid about speaking up when I think something's wrong.  That's just me -- it carries over into my care for Marvin.  I have found this to be one of my strongest traits in being a dialysis patient's caregiver (though others may not see it the same way).

Marvin is literally ALL I have (we have no children    ).  My entire life revolves around him, his health, and his care.  Without him, I would have an extremely hard time getting out of the bed in the morning, so I have to keep him with me just as long as I can.  Overprotective?  Yes.   Smothering? Yes.   Take it to the extreme? Yes.  Going to continue to be this way as long as Marvin's alive? Yes.

[Rerun]

Just tell them that you will call the Medicare Hot Line.  You may need to learn that in Tagalo.

[IUNurse]

Petey, I admire that about you.  Not that it wouldn't be just a little intimidating for me to take care of him, but you have to speak up when it is your loved one's life on the line!!!