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Author Topic: WE CAN on dialysis!! What do you do?  (Read 12839 times)
tyefly
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This will be me...... Next spring.... I earned it.

« Reply #25 on: October 21, 2009, 05:56:44 AM »

Sugarlump.......   You couldnt of said it any better..... One day at a time.....  and good for you ...... just think how much your dog will love you .......  they always love you .........
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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.
- John Muir

The clearest way into the Universe is through a forest wilderness.
- John Muir
kitkatz
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« Reply #26 on: October 21, 2009, 06:29:35 AM »

I try to do something every day that says "Hey you are alive." Some mornings it is getting up out of bed, others it is doing something I enjoy!
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lifenotonthelist.com

Ivanova: "Old Egyptian blessing: May God stand between you and harm in all the empty places you must walk." Babylon 5

Remember your present situation is not your final destination.

Take it one day, one hour, one minute, one second at a time.

"If we don't find a way out of this soon, I'm gonna lose it. Lose it... It means go crazy, nuts, insane, bonzo, no longer in possession of ones faculties, three fries short of a Happy Meal, wacko!" Jack O'Neill - SG-1
paris
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« Reply #27 on: October 21, 2009, 06:55:04 AM »

This is a great inspirational thread!  Thank you to all who have posted to help us remember there is life with kidney disease.   :2thumbsup;
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It's not what you gather, but what you scatter that tells what kind of life you have lived.
CybeR
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DODGERS!

« Reply #28 on: October 21, 2009, 08:27:53 PM »

Hi Neo,

Interesting topic you brought up! Thanks!

As for me, when they were using the fistula I was running 3 miles on day I wasn't on dialysis and 1 mile on days that I did go to dialysis. Plus after every work out I would swim for about 45 minutes. I was very active. This was about 1 month ago that my fistula stopped working again and I had to get a catheter. So now I can't work out at all and it sucks big time!!  >:(
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Zach
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"Still crazy after all these years."

« Reply #29 on: October 22, 2009, 08:35:05 AM »

I work out with weights for about 90 minutes, 3 x week.

I also produce/direct documentaries that air nationally on the Public Broadcasting Service (PBS).

8)
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Uninterrupted in-center (self-care) hemodialysis since 1982 -- 34 YEARS on March 3, 2016 !!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
No transplant.  Not yet, anyway.  Only decided to be listed on 11/9/06. Inactive at the moment.  ;)
I make films.

Just the facts: 70.0 kgs. (about 154 lbs.)
Treatment: Tue-Thur-Sat   5.5 hours, 2x/wk, 6 hours, 1x/wk
Dialysate flow (Qd)=600;  Blood pump speed(Qb)=315
Fresenius Optiflux-180 filter--without reuse
Fresenius 2008T dialysis machine
My KDOQI Nutrition (+/ -):  2,450 Calories, 84 grams Protein/day.

"Living a life, not an apology."
CybeR
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DODGERS!

« Reply #30 on: October 22, 2009, 02:46:51 PM »

I work out with weights for about 90 minutes, 3 x week.

I also produce/direct documentaries that air nationally on the Public Broadcasting Service (PBS).

8)

Cool, maybe you can help me. I have always wanted to be a writer. Now that I have more time I may try to write a few movies scripts. Most movies these days are so terrible that I feel it my duty to the world. lol what an ego huh :p
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Neo
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Dont let dialysis stop you...

« Reply #31 on: October 26, 2009, 04:18:48 PM »

This is the spot to come to in one of your darkest, how am I going to cope moments.
Just coming out of a difficult 4 week period of illness where everything was a struggle.
It may be pouring with rain (good old sunny england!) but I'm taking my dog for a walk
with my umbrella because I FINALLY CAN once again.
Small steps...high hopes...one day at a time x

Im glad this thread cheers you up. Keep your head up! YOU CAN.. Ive always wanted to visit England by the way. Whereabouts do  you live there. I hope you are feeling better.
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Neo
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Dont let dialysis stop you...

« Reply #32 on: October 26, 2009, 04:23:51 PM »

I work out with weights for about 90 minutes, 3 x week.

I also produce/direct documentaries that air nationally on the Public Broadcasting Service (PBS).

8)

Cool, maybe you can help me. I have always wanted to be a writer. Now that I have more time I may try to write a few movies scripts. Most movies these days are so terrible that I feel it my duty to the world. lol what an ego huh :p

Count me in! My dream is to work in film. We should do something together. Even though im in  school finishing up to get my Masters to be a Nurse Practitioner, I have been taking theatre history classes and will be starting some more classes soon in that field. Would love to hear about what you do some more and contribute if at all possible.
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Maker
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« Reply #33 on: October 26, 2009, 07:34:37 PM »

Hi Neo,

Interesting topic you brought up! Thanks!

As for me, when they were using the fistula I was running 3 miles on day I wasn't on dialysis and 1 mile on days that I did go to dialysis. Plus after every work out I would swim for about 45 minutes. I was very active. This was about 1 month ago that my fistula stopped working again and I had to get a catheter. So now I can't work out at all and it sucks big time!!  >:(

Did the surgeon tell you that you can't work out with your catheder?  I was doing aerobic activity the next day.  Just no lifting for a few weeks   :(  But I was told running was fine as long as I didn't have pain, but the first week or so I just ran through the pain  ;)  My neph says exercise all you can, its one of the best things you can do for your health.
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- Lori

33 years old
Diagnosed February 2007
Started In-Center Hemo October 2009
Trying to qualify for a living donor transplant

"I can do all things through Christ who strengthens me"  Philippians 4:13
sico
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wheres my bike gone?

« Reply #34 on: October 26, 2009, 08:09:38 PM »

I live to ride my dirtbike, do not know where I get the energy from at times.
Some of my riding mates still cannot keep up with me on a bike!
Am not happy about not working, didn't have an understanding workplace when I got sick.
Work used to be my priority, not anymore and probably never again.
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Brad      "Got myself a one way ticket, going the wrong way" - Bon Scott

6/11/08 diagnosed with ESRF, dialysis that day

HD and PD

8th of April 2010 Live kidney transplant from my father.
CybeR
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DODGERS!

« Reply #35 on: October 26, 2009, 10:29:08 PM »

Hi Neo,

Interesting topic you brought up! Thanks!

As for me, when they were using the fistula I was running 3 miles on day I wasn't on dialysis and 1 mile on days that I did go to dialysis. Plus after every work out I would swim for about 45 minutes. I was very active. This was about 1 month ago that my fistula stopped working again and I had to get a catheter. So now I can't work out at all and it sucks big time!!  >:(

Did the surgeon tell you that you can't work out with your catheder?  I was doing aerobic activity the next day.  Just no lifting for a few weeks   :(  But I was told running was fine as long as I didn't have pain, but the first week or so I just ran through the pain  ;)  My neph says exercise all you can, its one of the best things you can do for your health.

Lol yeah they told me not to do any exercise!!! They said because the moisture will cause my catheter to get infected again. Since I sweat a lot when I run.
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Maker
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« Reply #36 on: October 27, 2009, 02:07:16 AM »

Hi Neo,

Interesting topic you brought up! Thanks!

As for me, when they were using the fistula I was running 3 miles on day I wasn't on dialysis and 1 mile on days that I did go to dialysis. Plus after every work out I would swim for about 45 minutes. I was very active. This was about 1 month ago that my fistula stopped working again and I had to get a catheter. So now I can't work out at all and it sucks big time!!  >:(

Did the surgeon tell you that you can't work out with your catheder?  I was doing aerobic activity the next day.  Just no lifting for a few weeks   :(  But I was told running was fine as long as I didn't have pain, but the first week or so I just ran through the pain  ;)  My neph says exercise all you can, its one of the best things you can do for your health.

Lol yeah they told me not to do any exercise!!! They said because the moisture will cause my catheter to get infected again. Since I sweat a lot when I run.

Oh ya, the sweating...I had the same problem! I could actually see it under the tegaderm after exercise. My nurses at dialysis are very good to me and taught me to change my own dressing in front of the mirror (neph approved this of course).  They even filled a big bag with supplies for me to take home.  So on non-dialysis days I change it right after my bath.  Now I can sweat to my hearts content under that tegaderm and it gets changed every day.  No more fears about infection for me :clap;  Hope this helps.  I know some people will think this sounds crazy, but when you are used to exercising and suddenly can't it can be depressing, so I'm all about doing as much as I can  ;D
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- Lori

33 years old
Diagnosed February 2007
Started In-Center Hemo October 2009
Trying to qualify for a living donor transplant

"I can do all things through Christ who strengthens me"  Philippians 4:13
jennyc
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First day of school 08'

« Reply #37 on: October 30, 2009, 04:44:06 AM »

Hi there,

I try to not limit anything i do. (a bit tired now but hey, just keep smiling). I'm on Pd at the moment but i go swimming using infants urine collection bag, i guess it's like a colostomy bag where it uses waterproof adhesive to stick to your skin. I tested it in the bath first and then jumped in our pool. worked wonders, i'd had enough and got out before any water got in. site and catheter stayed perfectly dry.

I go horse riding, we travel. Motorbike riding (pillion) - Hubby is on the front, i have my sissy bar to rest on and my ipod to keep me entertained. We sometimes go with our hog chap but other times just on our own. We went to entrance earlier this year with the group it was an alll day ride up through the ridge to the coast north of sydney then the long way home. I think we were on the bike a good 4/5 hours - don't like the freeway though- too fast. 90kms is my optimum speed on the back otherwise i get whipped too much by the wind esp over the high bridges.

Hey does anyone know how long it takes before your fistula is ok to get back on a bike? i go push bike riding (again not till fistula heals now), walk the dog. Work from home. Chase around a cheeky 6 1/2 year old the only thing i don't do at the moment is drink alchohol (until i'm back on heamo and can cope better) the last drink i had i wasn't even a cadbury's girl (less than a glass and a half and i was toast).

Interesting about baseball, my son is in little league so i can't help them out at the moment, i look like the lazy mum sitting on the sidelines during practice. And once i'm on heamo and feeling better i can't wait to get back to my spin cycle classes.

I've heard of other people who surf, camp, 4wd. I think it' all about determination. If you really love something you won't let CRF get in the way of doing it, where there's a will, there's a way!
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2003 January - acute renal failure
        March/April - Started PD
2009 October - PD failing, First fistula put in.

Cadaveric Transplant 27/1/2010
Neo
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Dont let dialysis stop you...

« Reply #38 on: January 27, 2010, 06:13:44 AM »

Hey guys I wanted to  bump this thread cuz I wasn't feeling good today, and needed some inspiration. I still have a living donor lined up that matches me. And if everything goes as planned we shouldx be having the surgery in six months. So Im just saying to myself Ive waited 6 years, I can definitely wait 6 months. I am still in college. Got my Associates in Science and on my way to my masters to be a physicians assistant. Love hearing from you all you give me inspiration. So keep in touch, and keep giving the proverbial middle finger to dialysis ;D
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willowtreewren
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My two beautifull granddaughters

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« Reply #39 on: January 27, 2010, 07:09:04 AM »

Quote
So keep in touch, and keep giving the proverbial middle finger to dialysis ;D

Fialysis Ducks!

 :rofl; :rofl; :rofl;

My husband is one of the lucky ones. So far his activities are only limited by the time that dialysis takes out of his day.
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Wife to Carl, who has PKD.
Mother to Meagan, who has PKD.
Partner for NxStage HD August 2008 - February 2011.
Carl transplanted with cadaveric kidney, February 3, 2011. :)
Stacy Without An E
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God's Action Figure

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« Reply #40 on: January 27, 2010, 01:27:19 PM »

This is an awesome thread that proves we're not second class citizens.

I work full time (and overtime) in broadcasting.  I workout four days a week for three hours.  My goal is to be in the best shape of my life by my 40th birthday, even though I'm on Dialysis.

We should all be proud of our accomplishments while defeating Dialysis.  In a lot of cases the "Norms" (normal people) look lazy and complacent in comparison.
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Stacy Without An E

1st Kidney Transplant: May 1983
2nd Kidney Transplant: January 1996
3rd Kidney Transplant: Any day now.

The Adventures of Stacy Without An E
stacywithoutane.blogspot.com

Dialysis.  Two needles.  One machine.  No compassion.
Zog
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« Reply #41 on: January 27, 2010, 01:48:01 PM »

My wife had a baby on dialysis.  She teaches preschool.
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My wife is JDHartzog. In 1994 she lost her kidneys to complications from congenital VUR.
1994 Hydronephrosis, Double Nephrectomy, PD
1994 1st Transplant
1996 PD
1997 2nd Transplant
1999 In Center Hemo
2004 3rd Transplant
2007 Home Hemo with NxStage
2008 Gave birth to our daughter (the first NxStage baby?)
jbeany
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Cattitude

« Reply #42 on: January 27, 2010, 03:07:01 PM »


We should all be proud of our accomplishments while defeating Dialysis.  In a lot of cases the "Norms" (normal people) look lazy and complacent in comparison.

When I hit the 50 pound mark on my weight loss and exercise plan, my renal dietitian told me she uses me as an example to all her "healthy" patients who are only battling obesity.  If I could do it on life support, with all the fluid and diet restrictions, they didn't have any excuse not to accomplish their weight loss goals!
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"Asbestos Gelos"  (As-bes-tos yay-lohs) Greek. Literally, "fireproof laughter".  A term used by Homer for invincible laughter in the face of death and mortality.

sullidog
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« Reply #43 on: January 27, 2010, 04:41:41 PM »

I clean my house, work part time, and will be atending school next month, oh yeah and I also do laundry.
I had this old lady who is also a dialysis pacient tell me you need someone to wash your clothes, you can't work, you need to be in a wheelchair, your too sick, etc. I just ignored her.
Troy
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May 13, 2009, went to urgent care with shortness of breath
May 19, 2009, went to doctor for severe nausea
May 20, 2009, admited to hospital for kidney failure
May 20, 2009, started dialysis with a groin cath
May 25, 2009, permacath was placed
august 24, 2009, was suppose to have access placement but instead was admited to hospital for low potassium
august 25, 2009, access placement
January 16, 2010 thrombectomy was done on access
Zach
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"Still crazy after all these years."

« Reply #44 on: January 29, 2010, 05:24:30 AM »

 :beer1;
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Uninterrupted in-center (self-care) hemodialysis since 1982 -- 34 YEARS on March 3, 2016 !!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
No transplant.  Not yet, anyway.  Only decided to be listed on 11/9/06. Inactive at the moment.  ;)
I make films.

Just the facts: 70.0 kgs. (about 154 lbs.)
Treatment: Tue-Thur-Sat   5.5 hours, 2x/wk, 6 hours, 1x/wk
Dialysate flow (Qd)=600;  Blood pump speed(Qb)=315
Fresenius Optiflux-180 filter--without reuse
Fresenius 2008T dialysis machine
My KDOQI Nutrition (+/ -):  2,450 Calories, 84 grams Protein/day.

"Living a life, not an apology."
twirl
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« Reply #45 on: January 29, 2010, 04:54:09 PM »

swim in the summer ---
teach twirling -- year round -- not only am I on dialysis  - I am old
 :cheer:    :waiting;
used to teach but I got too tired    :'(
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lola
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I can fly!!!

« Reply #46 on: January 29, 2010, 05:12:14 PM »

Otto works full time and still rides a dirtbike and still stays ahead of the kids(shhhh he's getting close to being passed)
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