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Author Topic: How I Spend Time Doing Dialysis  (Read 14011 times)
LarryG
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Grateful to my donor, I feel great!.

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« on: January 14, 2011, 08:31:58 AM »

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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LWG
Diagnosed ESRD Jan 2008
Wegener's granulomatosis
Uncontrollable Hypertension
AV Fistula inserted Jan 2 2009
Transplant waiting list University Illinois Chicago Division of Transplant.
Angioplasty and Coil placement to limit Blood Flow from Fistula Jan. 18 2011
Transplant by living donor March 28 2011
Deanne
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« Reply #1 on: January 14, 2011, 08:37:47 AM »

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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Deanne

1972: Diagnosed with "chronic kidney disease" (no specific diagnosis)
1994: Diagnosed with FSGS
September 2011: On transplant list with 15 - 20% function
September 2013: ~7% function. Started PD dialysis
February 11, 2014: Transplant from deceased donor. Creatinine 0.57 on 2/13/2014
RichardMEL
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« Reply #2 on: January 14, 2011, 06:28:05 PM »

MOVED TOPIC to General Discussion forum - RichardMEL, Moderator
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3/1993: Diagnosed with Kidney Failure (FSGS)
25/7/2006: Started hemo 3x/week 5 hour sessions :(
27/11/2010: Cadaveric kidney transplant from my wonderful donor!!! "Danny" currently settling in and working better every day!!! :)

BE POSITIVE * BE INFORMED * BE PROACTIVE * BE IN CONTROL * LIVE LIFE!
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« Reply #3 on: January 14, 2011, 09:20:56 PM »

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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Dialysis - Feb 1991-Oct 1992
transplant - Oct 1, 1992- Apr 2001
dialysis - April 2001-May 2001
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RichardMEL
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« Reply #4 on: January 14, 2011, 09:54:05 PM »

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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3/1993: Diagnosed with Kidney Failure (FSGS)
25/7/2006: Started hemo 3x/week 5 hour sessions :(
27/11/2010: Cadaveric kidney transplant from my wonderful donor!!! "Danny" currently settling in and working better every day!!! :)

BE POSITIVE * BE INFORMED * BE PROACTIVE * BE IN CONTROL * LIVE LIFE!
tyefly
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« Reply #5 on: January 14, 2011, 10:36:37 PM »

 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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IgA Nephropathy   April 2009
CKD    May 2009
AV Fistula  June 2009
In-Center Dialysis   Sept 2009
Nxstage    Feb 2010
Extended Nxstage March 2011

Transplant Sept 2, 2011

  Hello from the Oregon Coast.....

I am learning to live close to the lives of my friends without ever seeing them. No miles of any measurement can separate your soul from mine.
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The clearest way into the Universe is through a forest wilderness.
- John Muir
LarryG
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« Reply #6 on: January 15, 2011, 10:39:22 AM »

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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LWG
Diagnosed ESRD Jan 2008
Wegener's granulomatosis
Uncontrollable Hypertension
AV Fistula inserted Jan 2 2009
Transplant waiting list University Illinois Chicago Division of Transplant.
Angioplasty and Coil placement to limit Blood Flow from Fistula Jan. 18 2011
Transplant by living donor March 28 2011
RenalSurvivorDotCA
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« Reply #7 on: January 15, 2011, 11:23:55 AM »

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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RichardMEL
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« Reply #8 on: January 15, 2011, 04:06:48 PM »

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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3/1993: Diagnosed with Kidney Failure (FSGS)
25/7/2006: Started hemo 3x/week 5 hour sessions :(
27/11/2010: Cadaveric kidney transplant from my wonderful donor!!! "Danny" currently settling in and working better every day!!! :)

BE POSITIVE * BE INFORMED * BE PROACTIVE * BE IN CONTROL * LIVE LIFE!
RightSide
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« Reply #9 on: January 15, 2011, 05:43:05 PM »

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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thegrammalady
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« Reply #10 on: January 15, 2011, 07:24:20 PM »

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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« Reply #11 on: January 15, 2011, 08:20:43 PM »

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.


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Riki
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« Reply #12 on: January 15, 2011, 08:28:38 PM »

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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Dialysis - Feb 1991-Oct 1992
transplant - Oct 1, 1992- Apr 2001
dialysis - April 2001-May 2001
transplant - May 22, 2001- May 2004
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HD - Dec 2008-present
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« Reply #13 on: January 15, 2011, 11:59:39 PM »

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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Bruno
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« Reply #14 on: January 17, 2011, 02:03:33 AM »

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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RichardMEL
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« Reply #15 on: January 17, 2011, 02:09:36 AM »

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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3/1993: Diagnosed with Kidney Failure (FSGS)
25/7/2006: Started hemo 3x/week 5 hour sessions :(
27/11/2010: Cadaveric kidney transplant from my wonderful donor!!! "Danny" currently settling in and working better every day!!! :)

BE POSITIVE * BE INFORMED * BE PROACTIVE * BE IN CONTROL * LIVE LIFE!
Joe Paul
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« Reply #16 on: January 17, 2011, 02:33:51 AM »

I would love to see your pictures, PM me sometime when you get them posted. Thanks, Joe
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« Reply #17 on: January 17, 2011, 07:59:29 PM »

I spent most of my time today on twitter.. it can get rather boring after a while
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Dialysis - Feb 1991-Oct 1992
transplant - Oct 1, 1992- Apr 2001
dialysis - April 2001-May 2001
transplant - May 22, 2001- May 2004
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« Reply #18 on: January 17, 2011, 10:12:23 PM »

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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Des
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« Reply #19 on: January 17, 2011, 10:18:31 PM »

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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Please note: I am no expert. Advise given is not medical advise but from my own experience or research. Or just a feeling...

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« Reply #20 on: January 17, 2011, 11:15:16 PM »

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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Riki
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« Reply #21 on: January 18, 2011, 11:45:20 AM »

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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Dialysis - Feb 1991-Oct 1992
transplant - Oct 1, 1992- Apr 2001
dialysis - April 2001-May 2001
transplant - May 22, 2001- May 2004
dialysis - May 2004-present
PD - May 2004-Dec 2008
HD - Dec 2008-present
tyefly
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« Reply #22 on: January 18, 2011, 07:05:38 PM »

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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IgA Nephropathy   April 2009
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AV Fistula  June 2009
In-Center Dialysis   Sept 2009
Nxstage    Feb 2010
Extended Nxstage March 2011

Transplant Sept 2, 2011

  Hello from the Oregon Coast.....

I am learning to live close to the lives of my friends without ever seeing them. No miles of any measurement can separate your soul from mine.
- John Muir

The clearest way into the Universe is through a forest wilderness.
- John Muir
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« Reply #23 on: January 19, 2011, 10:47:02 AM »

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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« Reply #24 on: February 12, 2011, 08:42:57 AM »

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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