The day from Hell !

[KICKSTART]

Well yesterday must have been my worst day yet !!! (if thats possible) It seems im no longer going to be in my little broom cupboard as i was back in the main room again , so it looks like someone was just paying lip service to my neph for a week ! However i will bring it up with him again !!  I dunno what was in the water yesterday but all the staff were in foul  moods (maybe pmt? ) I had words with 2 of them ! One i asked if WHEN she wasnt busy would she put the lights out above me and could i have a dvd player please , she nearly took my head off ! Yes ,yes i will sort you out when i have time but not right now , she said So i repeated ..'i didnt say right now , i said when you HAVE  time. Of course she cleared off muttering and never did put the lights out or get my a dvd player. Anyway i sat there for an hour and noticed the staff all stood around laughing and joking , so i thought ..well theres no excuse now. Anyway i got what i asked for , but by then my head had started to feel the effect of the lights. Oh and i forgot to mention when we got there we were told we couldnt go on the 'loop' because the equipment delivery was late, so they didnt have the stock ! Well i sat with my glasses on watching my dvd when the old lady across from me called a nurse and around go the screens. Well i know that when you got to go , you got to go, but my god the smell !! That being enough ,another lady behind me then starts to  everywhere ..my stomach was doing somersaults ! So ive got the awful smell in front of me and the wretching and throwing up behind me ! Luckily i had some perfume in my bag , so i sprayed a bit of that about ! Then my head exploded , like being in a vice and someone hitting it with a hammer. I called then nurse over who blamed in on my watching a film ..jeezzzzz ! Funny though how she turned down (or something) my machine to stop pulling fluid off at the same speed and within mins my head was fine !  So what a day it was .. oh also forgot to add , got home an hour later than normal , because they were running so slow as well . Gawd i hope saturday is better !  And you wonder why i HATE hemo 

[RichardMEL]

Well does sound difficult. I'm sorry they wouldn't look after you when you started. Can you not at least pick up the dvd player yourself when you get to your chair? I know you can't turn your own lights off because they want them to needle you, but at least that might be something you could do?? maybe???

As for the people around you being sick and needing to do their "numbers" - yes, it's unfortunate but it does happen. Usually in my unit they try and disconnect someone if they need to go but when there have been accidents or a pan used they try and spray around some smelly stuff for all concerned(remember they have to live with the stink too!).. unfortunately that's all part and parcel of it.

Wait till you get the trifecta like I had the other day when we had this old guy who was totally out of it. One minute he's singing(badly), the next minute he's yelling gibberish, then he's asking where he is, then he's teling everyone where he is, then he's wanting to get off the machine, then he's back to asking where he is again... (and repeat).....

I just like to think of stuff like that part of the rich life experience that dialysis gives me.. and I also thank God that, for now, I am not the one feeling so awful that they ARE throwing up, or the one humiliated by having to do number 2 in public like that and creating that smell that won't go away.....

[Rerun]

I've been in a clinic like that and mine right now is not the best.  It is so frustrating because there is nothing you can do.  I'd call my Neph and tell him that you are back in the main room.  Why can't people just do their jobs?? 

[KICKSTART]

RichardMel , things are a little different here , we cannot just go and pick up the dvd player like you suggest , everything is kept in the Sisters room , you even have to sign a disclaimer to use the laptop !  The lights are behind the staff desk and you CANT touch them (honestly you would think we were a pre playschool group , not adults with our own homes!) I am at the mercy of the nurse to turn out the lights , but i think you missed the point ?? I asked if i could have them when everything was done and they were not busy , i DIDNT demand them straight away ! Yes i know people need the toilet and puke but my god the lack of dignity to have to 'go' behind a screen in a room full of people , do they have to strip us of everything ?

Rerun ..sorry i have no way of speaking to my neph, we only get to see him once every 3 months!!! If there was an emergency im sure the nurses would inform him , otherwise they are the frontline !!

[billybags]

Wow you did have a bad day. I bet you lit a fag up when you got out!

[KICKSTART]

A fag .. more like several !!! Its enough to drive you to drink !

[pdpatty]

You see you neph every 3 months? How awful!. Is he/she so busy they can't come in at least monthly ,three months is a very long time.

Here at this center we have two doctors and we see DR. C one week on a Mondayand DR. Emily the next week on a Wedneday.
We have our individual tv and all they ask is for us to have earphones(some don't ,but I sleep at least 11/2 hours of the treatment).

If you can't wait ,they will unhook you to go to the toilet.

I should feel priviledged,if one can feel that way hooked up to a friggin machine 3X a week.

[Poppylicious]

Yeouch!  That's horrid.  I've only been to one dialysis session with Blokey and I'm so glad I didn't have to experience anything like that.  He does come home with some stories mind, but nothing that bad!  It's just so undignified, for everybody.

And three months?!  That's ridiculous.  Blokey has discovered that if he writes a letter to his doc and leaves it with the dialysis team he's usually guaranteed a visit the next time he's in.  The lovely chap also told him that if Blokey wants a chat then to get the nurses to page him and he'll pop along and see him, but Blokey doesn't see the point in that because the things he wants to chat about are never urgent and he doesn't want to waste his time.  At the big teaching hospital where he's being treated they have regular appointments every month (or they're supposed to have).

Blokey would love the chance to get hold of a DVD player or laptop.  Once the tellybox is on it stays on the one channel all night because once they're hooked up they can't physically change the channel.  He usually puts BBC1 on so he's having to watch quite a bit of EastEnders at the moment ... *evil laugh* (he's not an 'Enders fan)!

I really hope that tomorrow is a better session for you :-).

[RichardMEL]

RichardMel , things are a little different here , we cannot just go and pick up the dvd player like you suggest , everything is kept in the Sisters room , you even have to sign a disclaimer to use the laptop !  The lights are behind the staff desk and you CANT touch them

OK that is cool. That's why I asked if you could pick up the DVD player when you go to your chair.

Things are different indeed. I think it's actually pretty cool you have a unit that loans out dvd players and/or a laptop?!! I mean in our unit we have to bring our own entertainment (they do have tv's in the ceiling with headphones but they suck ). It may be frustrating the way they are running it (in terms of you having to wait and all that) but at least they offer that service.

(honestly you would think we were a pre playschool group , not adults with our own homes!) I am at the mercy of the nurse to turn out the lights , but i think you missed the point ?? I asked if i could have them when everything was done and they were not busy , i DIDNT demand them straight away ! Yes i know people need the toilet and puke but my god the lack of dignity to have to 'go' behind a screen in a room full of people , do they have to strip us of everything ?

No I didn't miss the point at all. I understood you were polite and asked them nicely when they were not busy. Where in my post did I suggest you demanded anything? *MY* point was that when you're hooked on to the machine - as you and everyone else reading this who has anything to do with dialysis knows - that you can't just get up and rush to the toilet. As I said earlier in our unit the absolute preference is to take people off till they can get to the toilet (well actually the real prefernce is that people go before they start and most folks don't need to go thereafter, but some people don't think of it, or don't have the need, or whatever)... sometimes though you just can't avoid it and sadly that's what you get - a pan and the indignity of having to go behind a curtain - something I dearly hope I never have to partake in.

I have seen the staff in my unit try and give everyone as much dignity as possible and help with everything. I certainly believe that no person working in a dialysis unit wants patients to suffer through such things.. but it's sadly part of life given the circumstances. When you've got to go and simply can't wait the 5ish minutes to be disconnected well.. what are your options?

Rerun ..sorry i have no way of speaking to my neph, we only get to see him once every 3 months!!! If there was an emergency im sure the nurses would inform him , otherwise they are the frontline !!

That's fairly similar to how it is in my part of the world. However I have contact with my neph via email and he is usually fairly responsive to stuff I send him if I have problems, or monthly bloods come up with something that needs attention and so on - he sends me a response, I print it out and give it to the nurses to pop in my folder as proof of any directions he may have made like changing meds or something.

Also for more general stuff the nurses can call a registrar to handle more general stuff so there's usually no problem with getting hold of a doc if we need it.

[KICKSTART]

RM .. i didnt say it was frustrating at having to wait till the staff were not busy, what i dont need is a nurse nearly taking my head off !!! Also who really in normal circumstances does not know 5 mins beforehand that they need the toilet? (giving time to be disconnected) Anyway you have your opinions and i have mine. Your unit seems to be a little different as ive noticed in your posts , how you bring in M n M's and flirt with the staff (and socialize?) Over here its them and us with very little interaction unless its regarding dialysis.

[RichardMEL]

lol! I don't flirt with the staff.. but we do socialise a bit that's true. It's a stressful environment in terms of what we're all going through and the staff - in my unit at least - I think recognise this and try to make the best of a bad situation for us. You know if you can't have a sense of humour and be friendly to people then what's the point? As I have said in other posts I also feel that in EVERY unit there is a sense of community - we see these people(or rather they see us) sometimes more than their own families, and all of us I feel become like a second sort of family.

I'm sorry you have such an adversarial(spelling?) situation in the unit you are in - that definitely sucks.

Sometimes there are things that are NOT normal about people on dialysis - and you should know that as well as anyone. I do not mean to sound rude.. I repeat again it's not like the staff WANT people pooping in their unit - they have to work there too!! I'm sure ALL of your staff would much prefer the patient in question could get to the toilet. I have seen any number of times when it just can't happen for any number of reasons. It's not nice, but that's the way it is for some people.

[KICKSTART]

RM  sorry to keep harping on ! but our unit or our shift is deffo not a community ! Most of the patients on my shift are in ther 60's/70's and just sleep through , i dont think ive said about 5 words to anyone and believe me i can talk !!!! They just go in like sheep , hook up ,sleep, wake up and go home ! Also all our beds are set at angles so we cant see the top half of the next patient (to chat) we can only see their legs !  I strongly disagree with what you say about things not being NORMAL about a patient on dialysis , i would hate for ANYONE to think i wasnt NOT normal because i was on it ! Thats just the label i want to avoid ..oh shes not normal because shes on dialysis .. my gawd RM what a thing to say ! (and by the way no effort was made to get the lady to the toilet) Im not making the point because im bothered that she had to go in front of me so to speak, but just the total lack of dignity involved for anyone in that situation (men are different , afterall they will go against a wall outside if they need to !)

[billybags]

Kickstart, I think most units are the same, all old farts like my husband (over 60) We are lucky we have 2 units, one for old farts and one for young "gets". Lol. Yes they do go to sleep, read or listen to music, the chairs are not facing each other so it is difficult to be able to hold a conversation. A lot of these people are scared, very ill and can not be bothered to talk. So I should imagine in the young "gets" unit they are all chatter chatting away  :yahoo;or not.

[keefbeer]

There,s a guy on the shift before mine that overlaps  by a hour or so who needs to use the bed pan with such regularity you kind of wonder what motivates him! He dialysis's for just over 3 hours yet he does not seem able to control his bowels, the nurses have told about this and have confirmed he has no medical issues that prevent from being a good neighbour.
He seems to get a kick out of his chemical attacks on us and the staff, I have added him to my growing list of people to be decked when the transplant comes through! 

[dwcrawford]

I rather resent the 60/70 year old comment.  I am the second oldest in my bay of 30/50s and the other old "fast" (Dr. Shapiro) and I are the only two who talk to each other.  At 69 going on 70, I did recognize that RM said that "SOMETIMES there are things not normal about..."  Maybe some old farts are just more alert than some people think.


Sorry about all the Pooping though!  I'd wondered how they would handle that.  Once I had to go pee and they had to take me off (or else).  Almost every time, I get enormous gas toward the end of four hours.  Oh god, I'd better rethink how I handle that.  Been trying to figure out how to run my car on it on the way home but perhaps there is a more pressing issue here.

By the way Richardmel, I do flirt with the staff.  Knowing you, I'm sure you do too if truth be told.  Of course at my advanced age I can get by with it.  Seriously though, I read so much about incompetent and unresponsive nurses and techs, etc. that I'd like to compliment Houston Davita Med Center on having considerte and helpful and knowlegable staff with great personalities and attitudes.  They will give (or get) us anything we ask for (except coffee and martinis).

[KICKSTART]

DW ..  i dont understand what there is to resent about my comment that most of the patients are in their 60's/70's ? They are !!!!!

[dwcrawford]

KS, I think the term is "ageism".  And I am on the borderline of 69 and 70.  Think about iit.  You'd never say all the people in my unit are black (racism) or its all women and they talk constantly (sexism).

[jpearce]

Have you tried a sleeping mask? I bought a couple and when they get bent about the lights I put my mask on and I fall asleep and I always ask for oxygen mask I need the fresh air more than anything cause of the smell of the hospital is so gross. The oxygen clears away alot of smell

[RichardMEL]

RM  sorry to keep harping on ! but our unit or our shift is deffo not a community ! Most of the patients on my shift are in ther 60's/70's and just sleep through , i dont think ive said about 5 words to anyone and believe me i can talk !!!! They just go in like sheep , hook up ,sleep, wake up and go home ! Also all our beds are set at angles so we cant see the top half of the next patient (to chat) we can only see their legs !  I strongly disagree with what you say about things not being NORMAL about a patient on dialysis , i would hate for ANYONE to think i wasnt NOT normal because i was on it ! Thats just the label i want to avoid ..oh shes not normal because shes on dialysis .. my gawd RM what a thing to say ! (and by the way no effort was made to get the lady to the toilet) Im not making the point because im bothered that she had to go in front of me so to speak, but just the total lack of dignity involved for anyone in that situation (men are different , afterall they will go against a wall outside if they need to !)

You misunderstood my point - and I suppose that is my fault for not being more clear with what I meant - so I will say again: When I said there is nothing normal about patients on dialysis I meant ON THE MACHINE. Not in life normal. I am totally in agreement that generally we should be treated as normal - and that's how I ask to be treated away from the machine. When I'm out and about I don't bother people I'm with about my fluid or diet restrictions - I choose according to my needs and go with the flow. I have no problem with that.

What I was trying to say is that being hooked up to that darn machine, as you know, makes things like toilet breaks not easy or simple at all - you can't just get up, run to the loo, do your thing and be back. It's complicated and time consuming to take someone off the machine for that process. How do you know (as you are a relatively new patient to that unit) that that particular woman has a history of this requirement and bowel movements come on suddenly without much control (sounds like keefbear's "mate"). With some people there just isn't time to take them off and get them to the toilet so the bedpan is the only option. Yes, there is little dignity with it, but that is the sort of thing I meant with things not being normal for those on the dialysis machine.

Remember we can't move(much) and are basically stuck there for 3,4 or 5 hours(or however long the treatment is - this poor lady in my unit has been doing *8* hour session??! EIGHT!!! in a bed! She held on as far as I know ). That sort of thing requires a different set of "norms" for what we can and cannot do and thus means what the nurses need to do to make things as comfortable as possible for the patients (remember that woman needing to go potty would probably much rather get it out into the pan than have an accident in her seat).

As for your comments about most of the paitents being older. Yes.. so what? I am almost always the youngest in my unit by a long shot. The next oldest I reckon would be over 60 and the regulars are between 70 and 92(!). Some of them sleep, and some of them talk non stop for 5 hours (in loud Greek no less!  - and you think YOu get headaches!!!  ). However we all say hello to eachother and sometimes talk(in broken English it must be said) but definitely the staff is a sort of community. Perhaps I register more with it because I communicate with all of them and they come and chat with me sometimes and we all get on fairly well. Maybe because I am friendly with them and do stuff.. I learn about the machine and set my stuff as appropriate, and chat with them about the different aspects to my treatment and lab results, and we talk about other things.. like the star wars fan in my unit.. sometimes i burn him the odd DVD of stuff and I exchange finance magazines with one of the bosses and we talk travel because she is always planning a trip somewhere. With yet others I chat about their new houses, or upcoming marriages, or whatever(one woman who is Sri Lankan even discusses with me her ongoing efforts to find a suitable match for her kids!! LOL). I don't do this to get better treatment or anything like that - indeed I go out of my way to always put preference to other patients and wait of others are coming off at the same time as me and so on. I just feel since I'm stuck with these guys for 15+ hours a week that I'd rather talk and be friendly than sit there like a bum (since I can't sleep) and glower at them or treat them like the enemy when we're part of a treatment team to make sure *I* get the best treatment I can get.

I do realise and understand you do NOT have that sort of environment at your unit, and that is sad I think because if you did have supportive and friendly staff like we do then I think you'd be much happier because you'd be better supported. I just hope that things improve for you in that department and you are treated respectfully and appropriately. 

oh and I tend to agree with Dan. Just because patients are older and tend to sleep or whatever doesn't make them any less important or anything like that. It's Seniors Week here - so maybe I'm a bit more sensitive to that issue this week.

oh btw Dan I don't flirt with my crew because they're either much older, asian, married or gay.. but I love my unit staff anyway they're VERY competent (the main thing!) and I KNOW I will be treated properly, and they are friendly and have such empathy for the issues we are facing and deal with. I admire a lot of them.

[del]

Kickstart when hubby was doing in center he was one of the youngest people on his shift.  He became good friends with the "older" patients. Many however did not start the conversation - he was the one that had to start.  Age doesn't really matter. Some of them would come in and sleep but most of them liked to chat as did hubby. He would often tell jokes or say silly thing just to cheer some of them up and take their mind off what they were going through. He often had quite interesting conversations with the staff ( often having nothing to do with dialysis)  Hubby motto was that it made his day if he could take someone's mind off their treatment and make them have a laugh when he told a joke.

He had one of his really good 'older" friends almost die in the chair next to him one day. The staff managed to revive him that day but he died within a month anyway. Many times there was quite a smell in the unit either because somebody had "gas" or they had to go and was not able to get off the machine to go to the washroom and had to use a porta potty.  It's all part of being human. You can be as prepared for treatment as you want and have all toileting issues taken care up but "shit" happens (pardon the expression but I couldn't resist!!)  It happens to most of us at not the most convenience times sometime and if you are tied to a machine you kinda can't make a run for the washroom!! 

[dwcrawford]

For every reguarding my age!!  I am chronologically older than the majority of people in my unit and the same with the majority of people on  this website.  However, in attitudes, I' bet that I am one of the youngest in either place.

I would suggest maybe people get an Einstein for Dummies book and read up on Energy, mass and TIME. 

[del]

For every reguarding my age!!  I am chronologically older than the majority of people in my unit and the same with the majority of people on  this website.  However, in attitudes, I' bet that I am one of the youngest in either place.

I would suggest maybe people get an Einstein for Dummies book and read up on Energy, mass and TIME.

Dan, I hope you didn't take offense to what I said about age .  I put older in quotations for just that reason that it wouldn't be taken personally by anyone.My intention was to say that there is absolutely nothing wrong with older people or having them as friends.  My motto ( and you'll see it on other posts here) is that you are only as old as you make yourself.  My Grandmother lived to be 102 and she was never "old"  I know people who are in their 20's and are "old!"!!  Chronological age means nothing to me!!! 

[KICKSTART]

KS, I think the term is "ageism".  And I am on the borderline of 69 and 70.  Think about iit.  You'd never say all the people in my unit are black (racism) or its all women and they talk constantly (sexism).

I think you'll find its fact !!! If they were all black i would say so , there is nothing racist about it ,, it would be a FACT  ! Would you like me to lie and say my unit/shift was a mixed age group ? DW ..stop looking for a squabble ! i havent the time or the inclination .

[KICKSTART]

Why is everyone harping on about age ? I happened to mention that most of my shift was in there 60/70's and slept alot , because they do !!!! I dont look down my nose at them because they are older , i HAVE tried talking to a few but they were not interested in holding a conversation , they just wanted to go to sleep ! And im dammed if im going to lose my dignity to this dammed disease by taking a crap in the middle of a room full of people !

[del]

Kickstart one of those days you may not have a choice about taking a "crap" in the room full of people!!  It's sad that people have to lose dignity like that but it is better than doing in in your clothes - I'd lose more dignity that way.  A lot of people when their b/p drops they need to go to the washroom and if they are hooked to the machine they can't be disconnected with their b/p low.  Most people at a dialysis unit or a hospital understands that those things can happen sometimes no matter what the age.