How I Spend Time Doing Dialysis

[rosa sihombing]

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.

[LarryG]

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.

[RichardMEL]

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!!!  (of course that's a good thing, but I was just being naughty!  )

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.

[Hazmat35]

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! 

[LarryG]

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.

[rosa sihombing]

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!!!  (of course that's a good thing, but I was just being naughty!  )

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...

[Cordelia]

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

[LarryG]

I have been doing dialysis over three years. I have had no one ever sit with me during dialysis.

[RichardMEL]

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  ). 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 !! 

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.

[LarryG]

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.

[Gandalf]

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. 

[romanyscarlett]

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.

[Hazmat35]

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.   

[RichardMEL]

wow what a gal. Can we please clone her? 

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!!! 

[Hazmat35]

wow what a gal. Can we please clone her? 

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!!! 

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! 

[chatrbee2]

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.

[Dry-Pack-Babe]

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.

[LarryG]

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.

[RichardMEL]

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....  )

[LarryG]

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

[Des]

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.

[Hazmat35]

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. 

[LarryG]

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.

[Des]

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.   

[LarryG]

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.