I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: LarryG on January 14, 2011, 08:31:58 AM
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After nearly three years on dialysis and getting tired of people sleeping and watching TV I started drawing my arm hooked up to the machine. Even through there is nothing more tedious than sitting there for hours it helps the time go by. I have done over two hundred and forty drawings and I will quit when I am transplanted. I hope to have a showing with them to show what you go through with life on dialysis.
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I met with a guy earlier this week who had a transplant in May after 2 years on dialysis. He said he wrote poetry during his dialysis sessions and won awards for it.
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MOVED TOPIC to General Discussion forum - RichardMEL, Moderator
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When I had a line, I read, but now that I've got the fistula, it's kind of hard to hold a book and turn pages with one hand. My mom is looking for some kind of device that will hold the book so I can turn the pages with my one hand
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When I had a line, I read, but now that I've got the fistula, it's kind of hard to hold a book and turn pages with one hand. My mom is looking for some kind of device that will hold the book so I can turn the pages with my one hand
I too gave up on the book reading thing, specially since most of the books I like to read are like 500+ pages!!!
So I used my laptop instead to watch movies and TV shows. That would help pass the time.
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I have a upper arm fistual .... and I can use that arm... Its true I need to not raise it above my head but my fingers work just fine.... I dont understand why most people couldnt use their fingers to get things done....
I read ,,,, do crafts,,,, paint,,,, play in the computer,,, watch TV.... play fetch with my dog....put puzzles together....eat...drink.......and sometimes just sit there and do nothing...... Ok I hardly do nothing..... but I think you can do many things.....
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It is hard to use one arm to draw but I have become good at it. I asked to use my laptop at the clinic but to my surprise they didn't have WI-FI. I was surprised no one use a computer at the clinic. They got it for me and now it is learning how to use a computer with one hand.
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When I had a line, I read, but now that I've got the fistula, it's kind of hard to hold a book and turn pages with one hand. My mom is looking for some kind of device that will hold the book so I can turn the pages with my one hand
I too gave up on the book reading thing, specially since most of the books I like to read are like 500+ pages!!!
So I used my laptop instead to watch movies and TV shows. That would help pass the time.
Riki and RichardMEL: If you like to read but find it difficult with one hand, perhaps you could check out one of the eReaders like Sony Reader, Kobo, Nook, or Kindle. Very light, easily handled with one hand and can hold 1000+ books. I, too, found it hard to turn pages with one hand and I now love my Kobo reader. I'm currently reading S.King's "Under The Dome" which was too heavy at over 1100 pages in paper form.
I also subscribe to many podcasts which are free at the iTunes store and listen to them on my iPod. I also have my music and some movies on it too.
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Yes I used to listen to podcasts too (good idea). Re the e-reader... yes, I thought of that but you know I found dialysis tiring in terms of concentration. For example I used to have well meaning family members come visit me for 1-2 hours of my treatment - thinking they needed to entertain me or something.. and it actually became quite diffiult for me to indulge them in conversation, think etc when all I wanted to do was be left alone to just relax (it wasn't that I didn't appreciate the kind effort and thought, just that for me it became quite painful - as in headaches - having to concentrate like that) - and I found the same with an activity like reading. If I watch a TV show or something that's much less tiring because I can just take it in without thinking too much and that worked much better fior me (same with podcasts).
Now I am enjoying getting back into reading :)
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Riki and RichardMEL: If you like to read but find it difficult with one hand, perhaps you could check out one of the eReaders like Sony Reader, Kobo, Nook, or Kindle. Very light, easily handled with one hand and can hold 1000+ books.
At my center, several patients have those devices, and they love them.
For myself, I am planning to purchase a tablet PC as soon as the marketplace settles down a bit. Tablets can be operated with the fingers of just one hand, via their multitouch interface and handwriting recognition capabilities. My center has wi-fi for the patients, so I can use this tablet PC to get online while I'm dialyzing. There's no shortage of stuff to read on the Internet, including Google Books.
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i got a kindle for christmas :yahoo; so much better than a big book in so many ways and i like books the bigger, the better. i have about 20 books on it so far and have only paid for one. the price was less than a paperback. i love it!! :yahoo;
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I have a Velocity tablet for when I want to read ebooks, surf the 'net or listen to recorded seminars or, occasionally, music. Or I read reports I that I don't have time to read during the work day (mostly reports on Internet marketing for my e-commerce websites). After about 2-3 hours, as I get fatigued and lose concentration, I have my iPhone to watch movies or TV shows on Hulu.com (I'm working my way through every season of "Grey's Anatomy" now).
I'm budgeting for a new Macbook Pro 17" so I can actually do some work (need the large screen because I do the web/graphics work for my publishing company).
Most of the other patients sleep or watch network TV at their chairs.
I can't sleep at the center, even if I go in at 6 am as I did today (Saturday) and I'm tired. Just can't do it with all the moving around, noise and light. Funny, though...I can concentrate on reading or shows and not notice a thing around me.
I'm currently a catheter hookup while my fistula matures. It doesn't hinder me, and the staff says the fistula should't either. I notice they tape the needles down pretty well on other patients.
gary
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My unit doesn't have wifi, and I doubt it ever will. I'd like to get a 3g ipad, so I can connect to the internet, and watch movies on netflix. I need to do some research on any of the ereaders before I go ahead and buy one. I think Richard and I have the same problem, they'd have to have larger print, or there isn't any point.
I don't take my laptop in, because it's kind of heavy, and I'd rather not lug it around. I can't watch dvds on it anyway, cuz it sounds like an airplane taking off when I do. I have a portable dvd player that I've been thinking of taking in to watch movies, but it needs to be plugged in if I want to watch a whole movie and I'm not sure the cord will reach the plug, and if something else, like an iv pump, needs to be plugged in, well, it takes priority over my dvd player.
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My friends surprised me with a Nook for Christmas and I LOVE it. We don't traditionally exchange gifts, so it was a huge surprise. They said that they knew I had a lot of time in a chair and they knew I loved to read. I'm a huge reader and never would have bought it on my own. I didn't think I would like it, because I love the feel of traditional books. However, I couldn't read a book in dialysis because it was too hard to turn the pages. The Nook makes it so easy!
Most of the e-readers (sony, Nook, Kindle, etc) have the option to enlarge the print very big, so I think most people could see the print.
My friends bought the cheapest Nook available, so I don't have the 3-G option or color, but I know the newer models have it. Mine does have Wi-fi (so does my unit) but with my Nook it's a little hard to navigate. I usually use my ipod if I want to do stuff on the internet. (I also find my laptop to bulky to carry in). The e-readers are also significantly cheaper than iPads, although you can do a lot more with the tablets. For example, you could watch Netflix on the iPad but not on an e-reader. My unit blocks Netflix for some unknown reason. I've played around with an iPad and it's pretty cool.
I also like the battery life of my Nook. I do not have access to a plug at my unit. My Nook usually lasts 3 full sessions before I have to recharge it.
I would recommend an iPad if you can afford it; however, most people can't. I think the e-readers are a pretty good value for what you get and I've found mine invaluable for making the time go faster. If you're going to buy one, make sure and check out refurbished ones. They are cheaper, but come with all the same functions.
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I started off full of good intentions, mainly I think, because I was so pumped up when on dialysis...but now, I'm a bit like Richard, I take a nap...can't use my laptop, it's too heavy...but I have got a Kindle, and it's a gem...I started a diary and have managed to keep that up but otherwise I'm just not using my time well. I've read so much that reading for the first time in my life is boring me.
What can I do...well I figure I'll try nocturnal dx and then get back to doing the good things during the day.
I go for my first test run at RPA tomorrow.
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Bruno - good to see you post :)
re the laptop - don't you get a side table at D? We all had tables - those moveable hospital type ones on wheels with adjustable heights and the like... so I put my laptop on there and thus had it at a comfortable height to watch movies/tv etc. Although sometimes the staff would also borrow it to watch dialysis videos which was kind of interesting. The best part is when a nurse would come show me her latest holidays snaps and everyone would come along for the latest travel stories (I am such a junkie!) :)
Good luck at RPA. I used to watch the show named after the hospital :rofl;
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I would love to see your pictures, PM me sometime when you get them posted. Thanks, Joe
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I spent most of my time today on twitter.. it can get rather boring after a while
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I do nocturnal. I like drinking and smoking pot while I'm hooked up. I use my computer as well. Sometimes I'm able to do some of the housework associated with dialysis while I'm doing dialysis. For example, I will fill my plastic cartridges with bicarb while hooked up. It means that I'm using an hour of "dead time" rather than time that could be used better. Here are things I do routinely while on dialysis: brush and floss, read and send mail, eat and drink, read, watch films/TV on my computer and make phone calls.
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I do nocturnal. I like drinking and smoking pot while I'm hooked up. I use my computer as well. Sometimes I'm able to do some of the housework associated with dialysis while I'm doing dialysis. For example, I will fill my plastic cartridges with bicarb while hooked up. It means that I'm using an hour of "dead time" rather than time that could be used better. Here are things I do routinely while on dialysis: brush and floss, read and send mail, eat and drink, read, watch films/TV on my computer and make phone calls.
WHAT!? drinking and smoking pot? Oh My?! :rofl;
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Bruno - good to see you post :)
re the laptop - don't you get a side table at D? We all had tables - those moveable hospital type ones on wheels with adjustable heights and the like... so I put my laptop on there and thus had it at a comfortable height to watch movies/tv etc. Although sometimes the staff would also borrow it to watch dialysis videos which was kind of interesting. The best part is when a nurse would come show me her latest holidays snaps and everyone would come along for the latest travel stories (I am such a junkie!) :)
Good luck at RPA. I used to watch the show named after the hospital :rofl;
We don't have these tables. Really wish we did so I could use my laptop, but we don't. Instead we have these little side tables that are attached to the side of our chair. They don't move and are really low. They're pretty useless for anything other than setting a drink on.
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Bruno - good to see you post :)
re the laptop - don't you get a side table at D? We all had tables - those moveable hospital type ones on wheels with adjustable heights and the like... so I put my laptop on there and thus had it at a comfortable height to watch movies/tv etc. Although sometimes the staff would also borrow it to watch dialysis videos which was kind of interesting. The best part is when a nurse would come show me her latest holidays snaps and everyone would come along for the latest travel stories (I am such a junkie!) :)
Good luck at RPA. I used to watch the show named after the hospital :rofl;
We don't have these tables. Really wish we did so I could use my laptop, but we don't. Instead we have these little side tables that are attached to the side of our chair. They don't move and are really low. They're pretty useless for anything other than setting a drink on.
That's what the centre I go to in Manhattan has.. they are pretty useless
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I do nocturnal. I like drinking and smoking pot while I'm hooked up. I use my computer as well. Sometimes I'm able to do some of the housework associated with dialysis while I'm doing dialysis. For example, I will fill my plastic cartridges with bicarb while hooked up. It means that I'm using an hour of "dead time" rather than time that could be used better. Here are things I do routinely while on dialysis: brush and floss, read and send mail, eat and drink, read, watch films/TV on my computer and make phone calls.
:rofl; :rofl; There are stories to be told........ :rofl;
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When I had a line, I read, but now that I've got the fistula, it's kind of hard to hold a book and turn pages with one hand. My mom is looking for some kind of device that will hold the book so I can turn the pages with my one hand
Here are a few sites that offer different options. I personally got the FlipKlip for my mom (although she never uses it!).
http://www.bluezap.com/flipklip.html?gclid=CNjM4cr2xqYCFYh_5QodK36AEw
http://www.abcstuff.com/items/BH007.html
http://www.bookgem.com/home.htm
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When I had a line, I read, but now that I've got the fistula, it's kind of hard to hold a book and turn pages with one hand. My mom is looking for some kind of device that will hold the book so I can turn the pages with my one hand
Have you looked at an electronic reader. Kindles are light. My iPhone even has a kindle app. Easy to do with one hand.
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After nearly three years on dialysis and getting tired of people sleeping and watching TV I started drawing my arm hooked up to the machine. Even through there is nothing more tedious than sitting there for hours it helps the time go by. I have done over two hundred and forty drawings and I will quit when I am transplanted. I hope to have a showing with them to show what you go through with life on dialysis.
Me? I slept during the dialysis. It was because avoiding stupid questions from family members of the new patients. Well, I can't blame them because they're frightened to face this disease but honestly, I'm bored to answer those useless questions. I understand why they were curious, I was in my 20s and they wondered how could this young lady got the disease.
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I am always surprised how people can sleep. I cannot because the lights are always to bright and the techs are always loud and the machine alarms are always going off. I cannot believe how rude the techs are with their talking while patients are trying to sleep. The clinic muted the sound on the TVs because they said the patients had the sound up to high and the techs could not hear an emergency so head phones for the patients while the techs can scream all they want and it is not medical related.
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Me? I slept during the dialysis. It was because avoiding stupid questions from family members of the new patients. Well, I can't blame them because they're frightened to face this disease but honestly, I'm bored to answer those useless questions. I understand why they were curious, I was in my 20s and they wondered how could this young lady got the disease.
Interesting.
I was totally the other way. I was HAPPY to answer questions. I often offered to be placed next to new patients if they had questions or family or whatever. My reasoning: Dialysis is boring most of the time, so a distraction is welcome. If someone's new and worried/concerned I wanted to show them, and their loved ones, that it is NOT the end of the world, and you can do OK on dialysis - to try and put people's minds at ease. Sometimes I think I made a difference. Sometimes not.. I would never hassle people or talk to them if they didn't want it, but often the nurses would say "Oh ask Richard about that he knows all about it..." which was a good ice breaker.
We didn't get nearly enough young women in for my tastes though!!! >:D >:D >:D >:D >:D (of course that's a good thing, but I was just being naughty! :rofl;)
Larry - my unit used to have the headphones and it was bliss!! Then they replaced all the TV's with beautiful LCD monitors, but ditched the remote headphones and just let people put volume up and boy did it bug the CRAP out of me. I never watched their TV I took my laptop in and *I* was considerate enough to use headphones. Unfortunately many patients are older and some had hearing loss so had to have the volume up high.. the result was not pretty. :(
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When I had a line, I read, but now that I've got the fistula, it's kind of hard to hold a book and turn pages with one hand. My mom is looking for some kind of device that will hold the book so I can turn the pages with my one hand
I too gave up on the book reading thing, specially since most of the books I like to read are like 500+ pages!!!
So I used my laptop instead to watch movies and TV shows. That would help pass the time.
A Kindle (?) is a great idea for reading. You can store hundreds of books on them all that the same time. It's easy to use and you can use it w/ one hand!
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RichardMel, if there is a good thing with dialysis it is that I sit next to a gentleman and we have wonderful conversation. his experience with renal disease is parallel to mine and being able to talk to him makes time go by much faster and easier. I think having head phones is OK but some patients because of age have a hard time using them also a little common sense helps in people using them. I take my laptop and I don't always use the headphones because I don't blast the sound and no one complains.Our TVs only one ear piece works. We seem to be a clinic that is economically deprived because of our location but reasons are for another topic.
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Me? I slept during the dialysis. It was because avoiding stupid questions from family members of the new patients. Well, I can't blame them because they're frightened to face this disease but honestly, I'm bored to answer those useless questions. I understand why they were curious, I was in my 20s and they wondered how could this young lady got the disease.
Interesting.
I was totally the other way. I was HAPPY to answer questions. I often offered to be placed next to new patients if they had questions or family or whatever. My reasoning: Dialysis is boring most of the time, so a distraction is welcome. If someone's new and worried/concerned I wanted to show them, and their loved ones, that it is NOT the end of the world, and you can do OK on dialysis - to try and put people's minds at ease. Sometimes I think I made a difference. Sometimes not.. I would never hassle people or talk to them if they didn't want it, but often the nurses would say "Oh ask Richard about that he knows all about it..." which was a good ice breaker.
We didn't get nearly enough young women in for my tastes though!!! >:D >:D >:D >:D >:D (of course that's a good thing, but I was just being naughty! :rofl;)
Larry - my unit used to have the headphones and it was bliss!! Then they replaced all the TV's with beautiful LCD monitors, but ditched the remote headphones and just let people put volume up and boy did it bug the CRAP out of me. I never watched their TV I took my laptop in and *I* was considerate enough to use headphones. Unfortunately many patients are older and some had hearing loss so had to have the volume up high.. the result was not pretty. :(
Oh, I was like you too Richard, known as the most talkative patient. I did like talk, joke and tease other patients, nurses and also doctors.
It's just I didn't like to answer those useless questions such as 'Why you are on dialysis, is it because your kidney failure? Or 'How come young people like you be on dialysis?' Oh God!
Better to pretended sleep and covered my whole body with the blanket, so no one disturbed me. Once, I was 'naughty' and said, 'I don't know, I have done a lot of sins I think!' But after that the nurse told me not to say the same thing again, hehehe...
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I watch TV and listen to my MP3 player. Once a week my Mom comes and sits with me for about the last hour of my treatment :thumbup;
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I have been doing dialysis over three years. I have had no one ever sit with me during dialysis.
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Members of my family would come and sit with me during treatments initially, which was very sweet, but it was also quite tiring for me because I felt like I had to talk with them ALL THE TIME and that became quite fatiguing (plus I felt bad that other patients had to listen to this stuff!) so I said after awhile look I'm fine in treatment you don't have to keep me company, I can use my ipod/laptop for entertainment - I really appreciate it but it actually tires me out more etc. I think one or two were a bit offended even though I tried to honestly explain what the deal was, but I think they got it in th end.
re stupid questions - that reminds me that also I was the "go to guy" for docs with medical students. Every year, usually around September/October they would bring around the new crop of 3rd year students who would be examined on taking history, or some other aspect of their education. Now the staff all knew that not only was I usually willing to help out, but also I was the most fluet (and coherent) patient in the ward 80% of the time, so they sent them to me (also 80% of the students were young, female and attractive - and the nurses used to take GREAT delight in barging in to do a "most important" BP check right in the middle of these sessions, and then tease me later if it was high :rofl; :rofl; :rofl;). Anyway after awhile the same doc would usually do the examinations of these students, so he would know my whole story back to front and he'd start off with "So how's your cat?" and stuff like that. it became a bit of a running joke by the end. I bet he'll miss me not being there this year!!! Heck, I'll miss some of those cute students !! :rofl; >:D
I do understand the "boring questions" thing it seems like you repeat endelessly but I am one that is all about education and advocacy so I don't mind telling my story if it helps in some small way.
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I agree I think it would be awkward sitting there having someone watch what we go through as well as boring. I do feel it would be good for some to watch just to know what we go through. Despite my dislike of the process I have helped out in the training of new techs and have given advice to new patients. I am the "educated" one and when there was some real problems at our clinic I was the one who had to draft the letter of complaint have it translated in Spanish and sent it to the dialysis centers head office. The manager and I and the staff have gotten along better than in the past and they appreciate my opinion to try and make things better.
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Richard and LarryG - must agree with you - I have found that the "best" thing about the dialysis experience is the opportunity to engage with the people there - I guess one would not have had that opportunity previously, so perhaps that is something to take pleasure in. I have found myself forming connections which I never would have in the past, and sure, there are some really crazy questions, but they do make the time pass by.
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I've got a Kindle and it's amazing.
I used to do the twilight shift and there was always something on the tv to watch so filling the 4 hours wasn't that difficult. I moved to the early morning shift a few months ago though and daytime tv in the UK is shocking.
I found reading a book with one hand impossible. My fistula is in my wrist and both needle sites are fairly close together so even moving my hand is not an option. I tried once, it blew my fistula, lesson learned. My boyfriend bought me a Kindle and it's changed everything. It is designed for one handed use and is incredibly light and slim. I have not had a single issue with it I got it. I'm currently reading The Lord of the Rings which would be impossible in book form as it's the size of a small country.
There are loads of electronic readers on the market, it's really worth looking into buying one if you're bored at dialysis. The initial outlay can be a bit expensive (Kindle is £111 in the UK) but there are so many free books (like the entire works of Sherlock Holmes) and exceptionally cheap books that it will pay for itself after a couple of months.
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I agree I think it would be awkward sitting there having someone watch what we go through as well as boring. I do feel it would be good for some to watch just to know what we go through. Despite my dislike of the process I have helped out in the training of new techs and have given advice to new patients. I am the "educated" one and when there was some real problems at our clinic I was the one who had to draft the letter of complaint have it translated in Spanish and sent it to the dialysis centers head office. The manager and I and the staff have gotten along better than in the past and they appreciate my opinion to try and make things better.
My G/F usually drives me to the center, and stays with me until I'm hooked up. Then she helps out the staff, by seeing to the needs of some of the other patients. She gets ice chips, blankets, snacks, etc., what ever they need. It helps to take some of the pressure off of the Technicians so they can pay attention to the REAL issues at hand.
She doesn't mind doing it, in fact she does enjoy it. I always tell her, that she doesn't have to stay with me, because it is so boring for her when she's not helping. But, she usually stays for a few hours, goes shopping or home, then comes back to get me.
I guess that I am one of the lucky ones, that has someone to help me. :cheer:
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wow what a gal. Can we please clone her? :rofl;
Actually reminds me of a Greek lady whose husband had been on dialysis for 20 years. A much oer couple (I think he was in his 80's). Lovely pair. He spoke very little english, hers was better. So she used to come and sit with him for all of the 4 hours of his treatments. Now this was handy when docs needed to communicate with them as she could translate both ways to get across what he was feeling, or what the docs wanted or whatever. However she also went and helped out the other patiients. Our shift had a number of fellow Greeks, so they were quite the community, and she would get them their blankets, or make a cup of tea, or whatever.. but she wasn't like that just to her fellow countrymen. She would come to us as well if we needed anything - not in a way to interupt or anything, just if she noticed something or thought maybe we needed something. Sadly, her poor husband finally lost his struggle in October, about a month before I got the call. We were all so sad. George was quite the character and we all loved him in our own ways. It made me feel very small and humble when, after my transplant I was in my room up in the transplant ward, and who appears? This lovely woman - she had heard about my transplant and she baked some cookies for me!!!! I will never forget that she said to me in the sweetest way "You are one of the nice people. I am so happy for you" - and the warmth and genuine feeling was so sincere. She came to visit a second time, only I'd just had my biopsy and was lying flat soi couldn't really move. She just said she came to look in on me and know that I was doing well. A truly beautiful lady and the sort of person *I* would want in my life.
I imagine your girlfriend is similar. propose - now. If you don't - I will!!! :rofl; >:D
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wow what a gal. Can we please clone her? :rofl;
Actually reminds me of a Greek lady whose husband had been on dialysis for 20 years. A much oer couple (I think he was in his 80's). Lovely pair. He spoke very little english, hers was better. So she used to come and sit with him for all of the 4 hours of his treatments. Now this was handy when docs needed to communicate with them as she could translate both ways to get across what he was feeling, or what the docs wanted or whatever. However she also went and helped out the other patiients. Our shift had a number of fellow Greeks, so they were quite the community, and she would get them their blankets, or make a cup of tea, or whatever.. but she wasn't like that just to her fellow countrymen. She would come to us as well if we needed anything - not in a way to interupt or anything, just if she noticed something or thought maybe we needed something. Sadly, her poor husband finally lost his struggle in October, about a month before I got the call. We were all so sad. George was quite the character and we all loved him in our own ways. It made me feel very small and humble when, after my transplant I was in my room up in the transplant ward, and who appears? This lovely woman - she had heard about my transplant and she baked some cookies for me!!!! I will never forget that she said to me in the sweetest way "You are one of the nice people. I am so happy for you" - and the warmth and genuine feeling was so sincere. She came to visit a second time, only I'd just had my biopsy and was lying flat soi couldn't really move. She just said she came to look in on me and know that I was doing well. A truly beautiful lady and the sort of person *I* would want in my life.
I imagine your girlfriend is similar. propose - now. If you don't - I will!!! :rofl; >:D
LOL, I have, several times. . . but she does not want to "BE" married. She says she has seen it ruin to many lives. All of our friends and family consider us "married" as we have been together for so long - 11 years.
But, I'll keep trying!
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I have been doing dialysis over three years. I have had no one ever sit with me during dialysis.
My dads current dialysis center won't allow it, insurance had him transferred there. It sucks, it was so much nicer at the other facility he was in because after everyone was hooked up family/friends were allowed in to visit. His section were mostly elderly and everyone sort of become one big family it was nice. The new facility seems so much longer...and boring...same time.
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Crossword puzzles, reading, looking at movies or listening to music on my DVD player are an effective way for me to while away the time while getting my blood purified.
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I wonder how different each in center clinic is with rules and regulations. I was told I could not take pictures. I took pictures anyway and have done video's. Anyone else been faced with these stipulations? The only reason I am at the clinic I am at is it is convenient in it's location. It is four blocks from my house and it is not in an upscale neighborhood. A lot of people have transfered out to better clinics after they have learned how different and better the others are.
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Re pictures they were fine in my unit if you took pics of yourself, or even of the staff with you or stuff like that, but they had some "privacy" rule about taking pictures involving other patients. Heavens above! OK fair enough if I'm trying to take some pics of that girl I have a crush on over in the corner or something, but if old Joe is having a birthday and folks want to gather around and have a picture what's the harm of that?
I think sometimes it even comes down to the managers of each unit - their experiences and views on things as much as corporate rules(if in a private unit) or hospital policy or whatever. Heck, I've seen enough times rules relaxed, specially on Saturdays when none of the usual admin/management staff are around that most things were pretty OK (see the thread about me drinking vodka.... :rofl;)
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That's what they were stating privacy rules but I got around that and the more "cooler" techs shot pictures for me against the rules. There is always that special tech who doesn't go by the rules and really understands the patient. They had a survey at our clinic one year and you picked the best tech. Not sure what happened to the ones that finished last :)
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crying.
They again did not attend to an alarm on Friday and I had to discard the blood in the lines and I had a half an hour added on to my time as that is how long it took to re-line/sterilise the machine.
So I spent the rest of dialysis miserable, upset and crying.
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I wonder how different each in center clinic is with rules and regulations. I was told I could not take pictures. I took pictures anyway and have done video's. Anyone else been faced with these stipulations? The only reason I am at the clinic I am at is it is convenient in it's location. It is four blocks from my house and it is not in an upscale neighborhood. A lot of people have transfered out to better clinics after they have learned how different and better the others are.
There are signs up in our clinic not to take pictures or videos, but when someone does, they always ask permission if they think you are going to be in the background.
It is just a matter of courtesy.
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Dear Des
it sounds like you need to make a complaint. Can you not talk to the clinic manager. I would not stand for such a thing. Remember the squeaky wheel gets the grease. You deserve better.
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LarryG
Thanks, I have complaint in the past but to no avail.... reason they gave were - staff shortages.
I complained to the Doc and he said he will take it up with them (again) as the way they ignore alarms is actually dangerous. :Kit n Stik;
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Time always seems precious when you are at an in center. Techs take breaks but if the alarm goes off someone on the floor takes care of it rather quickly, but if they don't we the patient will yell out. We are good at watching each others back. When it looks like I am having difficulty or the person next to me we will get the attention of the nurse or a technician. After all we all are family. Just be aggressive you need not suffer.
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I am not sure how other in centers work but I forgot my headphones for the TV. Our center prevents audio on the televisions and they have disabled the TVs audio. They didn't have any back up head phones and I was s**t out of luck and I was pissed off. I know it was my fault for not checking my bag but I feel like we get punished for not following their rules. Not that it is all that important but it makes time go by faster. Does all in centers do this?
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No, in my unit there are a lot of broken remotes, so the tvs volume is used, and some of them, the nurses have to change the channel for the patients. I don't watch tv when I'm in dialysis, so if I have a working remote, I tend to give it to someone else who likes to watch tv.
I think the reason they're not bothering to fix the broken stuff is because they're building us a new unit in a new wing of the hospital (we're in the basement of a nursing home right now) and it's supposed to be ready for us sometime next year, next spring, I think. So, since we're getting all new, they're not fixing the old.
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Funny you should ask how I spend my days at D. Well, every day is a new day. At D. I never know what to expect, ....a broken remote, no volume, no picture, only captioned picture that I can't see 'cause I'm blind as a bat. The most interesting is the people! I have the Oyster man who sits across from me...He hacks up Flem like no ones business...and throws the tissues on the floor.Thus the oyster man...Then, we can always watch the mice run across the floor (healthy, fat ones)...the cat...the one that scratches like a cat from head to toe....then the two techs that can't stand each other and fight the whole time we are on. None the less, the insecet water alarms that go off at least once a week telling us that the water is unsterilel for usage. Never a dull moment!!!
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Things I do...surf the web, make phone calls, read books/magazines, play on my nintendo DS, chat on facebook, post on IHD, talk with my tech Michelle, chat with other patients, and now Aaron comes and sits with me on Fridays nights. We talked last week that I was feeling like he didn't support me and this dialysis stuff and he said, "Well what do you need me to do?" and I was like, "Well I know you can't come every time to sit with me but can you come at least on Friday nights and sit with me?'' "of course" he said....guess what he came twice this week! :) Love my Aaron bear!
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It would seem each Dialysis In Center is different. I wonder if being in an up-scaled neighborhood is different than a poor neighborhood. Are there different rule on what you have and what you can do form center to center. I had better treatment in the hospital. They would dim the lights, tuck you in with warm blankets and even fed you. My center, food is banned, can't cover your face. I mean does every center treat you like a juvenile?
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we weren't supposed to have cell phones in the centre when I first started going, but I brought mine anyway. The rule was bent, mostly for me cuz they knew I was sneaking it in anyway. If our fluid allows it, we can have a drink. Tea, coffee, juice, or ginger ale is available and they have cookies if we ask. Some people bring their own. A friend came in to visit once and she brought me an ice cap from Tim Horton's. The nurse adjusted my goal so I could have it. I don't know if there's a picture policy or not. They know that I like to take "surveillance photos" when I get bored and post them on facebook. I have a couple of my nurses on facebook, one of them is a neighbor who lives up the street from me. There's about 10 nurses working there, and they all get along really well. There are 2, though, who when they're together, they are so funny. They are really close friends outside of work, and they're able to play off each other. The patients are the audience in their improv show. It's hilarious
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Our unit is actual devided in 3, One small isolation unit for Hep B, One smaller room (the later addition) with 5 beds and then the big unit with 14 beds.
Well lately I have been put in the smaller unit and when I arive my machine is ready (gosh!) My doc arranged this as I told him I will cut time off for every minute that I am put on late. Needless to say this hasn't happened in a while. On time (gosh!) So this just shows it can be done. :boxing;
So what I really wanted to say is I am relatively alone in my 5 bed unit and I have the lights put on dim (I do D at night) and I watch tv and rest. IT IS FANTASTIC. Now that I have them trained the way I want them, I am getting a transplant. :2thumbsup;
So D is getting to be ok. (for now) No one knows how long this is going to last. But here's hoping. :angel; :pray;
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Des, you have beds not chairs? It sounds like yours is set up as a hospital unit would be. My in center only caters to walk ins and no beds. When I was at the hospital and I walked in I had to wait long periods of time to get a chair because people in the hospital had priority. Was pretty nice there since they pulled curtains and had heated blankets. They did have isolation rooms for people with special needs.
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Otto watches netfix, he has gotten into documentaries, he also just got himself an IPAD so he plays around with that.
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I want an ipad for that very reason. My unit doesn't have wifi, and I don't see them getting it, so I have to get the more expensive 3g one, and I can't afford it.. so.. I'm not getting one.. *L*
I used to play with my DS when I still had a line, but since I fistula, I can't use both my hands, so that's out. I mastered texting with one hand on my blackberry, which is cool. I recently upgraded my pearl to a torch. My hands are small, and the torch is wider than the pearl, but I practiced, and I do ok with it, even though sometimes I drop it in my lap while typing because of my little hands.. *L*
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Beautiful.I draw and paint at dialysis too:)
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Funny you should ask how I spend my days at D. Well, every day is a new day. At D. I never know what to expect, ....a broken remote, no volume, no picture, only captioned picture that I can't see 'cause I'm blind as a bat. The most interesting is the people! I have the Oyster man who sits across from me...He hacks up Flem like no ones business...and throws the tissues on the floor.Thus the oyster man...Then, we can always watch the mice run across the floor (healthy, fat ones)...the cat...the one that scratches like a cat from head to toe....then the two techs that can't stand each other and fight the whole time we are on. None the less, the insecet water alarms that go off at least once a week telling us that the water is unsterilel for usage. Never a dull moment!!!
Where the heck do you do dialysis? At least our water and our unit is clean. We only have guy snoring the roof off. :rofl;
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Watch tv and nap. Woman on right watches tv without earphones and woman behind does same. I sit in corner(like my place so no switching ) and I hear them both ABOVE my earphones which cover both ears.
Someday I hope to have the courage to ask them if there is a medical reason they can't use earphones.
OH yes,fistula is in right arm and I am totally right handed and am legally blind ,so reading is out.
Wish they would get the music channels. Love 80s rock and classical music.
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We only have a snoring man. :rofl;
We only have one too.
Doesn't bother me one iota.
Because it's me! :rofl;
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I had a guy who snore so bad I ask the social worker at the unit to move him. I was happy after that because the guy that was moved next to me became a really good friend and we converse every dialysis and it make the time go by really fast.