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Author Topic: WE CAN on dialysis!! What do you do?  (Read 12850 times)
Neo
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Dont let dialysis stop you...

« on: October 16, 2009, 08:53:40 AM »

Ive been playing in a baseball league for awhile now when I have the energy. I have figured out a way to protect my fistula.  I wanted to know what everyone else does, I think it would be really great to make a thread about what we CAN do. I am amazed at what my fellow IHD members DO! you all are amazing!
« Last Edit: October 16, 2009, 08:54:46 AM by Neo » Logged
tyefly
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This will be me...... Next spring.... I earned it.

« Reply #1 on: October 16, 2009, 09:08:53 AM »

 I have not been on dialysis  long....but  I feel very good after D....so  I believe I will be able to do everything that I have been doing....   Right now  I am attending full time at OSU finishing up on my Natural Resources Degree..... I love to fish and plan on steelhead fishing this winter.... I still train and walk my siberian huskies.... ( beleieve me  they can be just like childred )....   I still run my business from home.....  There is very little that I can not do...with the exception that I will not be able to go backpacking for very long..... since I need to go to D..... Travel is more restricted...... but D has not stopped me at all .......
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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
zona
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« Reply #2 on: October 16, 2009, 09:25:50 AM »

Wow! I am not on dialysis yet but reading this has made me feel so much better about things. Right now I cant do much because I feel so sick and tired all the time,but now I feel there is hope for better days. Thank you! I hope to read more on this post. :flower;
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zona  diagnosed with Igan 1993
         pre-dialysis gfr13% listed for transplant March 2010 Received transplant from deceased son August 2013. My son my hero.
kellyt
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« Reply #3 on: October 16, 2009, 09:28:41 AM »

Way to go Neo!  That's awesome!  Sports even when I was young and healthy took a lot out of me, but you doing it now is wonderful!  I'm so glad you're feeling well enough to go out and enjoy life!  Oh, and I'm glad you're protecting your fistula!   :clap;
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1993 diagnosed with glomerulonephritis.
Oct 41, 2007 - Got fistula placed.
Feb 13, 2008 - Activated on "the list".
Nov 5, 2008 - Received living donor transplant from my sister-in-law, Etta.
Nov 5, 2011 - THREE YEARS POST TRANSPLANT!  :D
tyefly
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This will be me...... Next spring.... I earned it.

« Reply #4 on: October 16, 2009, 10:25:15 AM »

Zona       I did want to say   that I too was feeling very tired the past few months.....  well since the first of the year......because of my hemoglobin which was very low.....9.8  and now that I have started with iron and Epo  I have felt really great....  like my old self....  full of energy.....  Even with D I think I feel better.....  So  I think you will feel better in time .... homefully you can start epo and raise your hemoglobin too...  sure makes   a    BIG   difference......   Such a big difference I hope that I never feel like that again.... 
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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
KICKSTART
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In da House.

« Reply #5 on: October 16, 2009, 11:18:02 AM »

All through PD i rode (horses). Now im on hemo im trying to figure out a way i can get back in the saddle !
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OH NO!!! I have Furniture Disease as well ! My chest has dropped into my drawers !
Neo
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Dont let dialysis stop you...

« Reply #6 on: October 16, 2009, 03:45:27 PM »

Wow! I am not on dialysis yet but reading this has made me feel so much better about things. Right now I cant do much because I feel so sick and tired all the time,but now I feel there is hope for better days. Thank you! I hope to read more on this post. :flower;

Best thread ive ever started reading all that you guys do really keeps a smile on my face and keeps me hopeful.  :2thumbsup;
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kitkatz
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« Reply #7 on: October 16, 2009, 04:41:16 PM »

I tech special education students full time.

I plan to travel.

I do things I want to do every day!
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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
sutphendriver
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« Reply #8 on: October 16, 2009, 06:44:15 PM »

I still jog 3 miles a day and lift 4 times a week, feels great!  On the other side of things, I'm also a Guitar Hero legend around the fire house.
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kamalshah20
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WWW
« Reply #9 on: October 16, 2009, 06:46:42 PM »

I work full time developing applications for the iPhone. I swim every day. I have also done many small vacations. Yes, I do miss the long trips. But that's ok!

Kamal
http://kamaldshah.com
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kristina
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« Reply #10 on: October 17, 2009, 03:23:13 AM »

Hallo, Neo,
Please tell me, how do you protect your fistula whilst
playing baseball? Is it really possible?
Thank you, Kristina.
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Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
lizabee
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« Reply #11 on: October 17, 2009, 05:22:35 AM »

I still walk my (very large) dog, swim, work (but only part time now), ride my bike, and do the family thing (apple orchard, hayrides, etc)
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RichardMEL
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« Reply #12 on: October 17, 2009, 10:00:11 AM »

I've just spent about 5 hours working on my taxes - does that count (hey it's a workout!!!)  :rofl;

I work full time (in IT) - on Friday I did a 12 hour day (after going to the dentist) fixing things and working on upgrades and this, that and the other - and I felt pretty good (but that may have been the naughty cheeseburger I consumed along the way  >:D).

I try to walk 20-30 mins every day and a longer walk of over an hour on a Sunday (my "day of rest"!).

I am also slave to a demanding cat :)
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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!
jbeany
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Cattitude

« Reply #13 on: October 17, 2009, 01:58:37 PM »

Over the summer, while on D, I helped coach a kids softball team.  I averaged a mile of interval training almost every day on the treadmill.  I kept my house clean, and was primary caregiver for my 92 yr old gram.  I worked part time at a gift shop, plus spent enough time sewing to do two craft shows where I sold hand made purses and tote bags.

It is possible to be active and on D.  I had bad days, too, but they didn't stop me from being busy and on the move when I felt good.
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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.

staceyand joe92
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« Reply #14 on: October 18, 2009, 03:37:34 PM »

I hike in the mountains behind my house five days a week, I take Zumba dance classes, I swim, I mountain bike.  I try and do something every day to make me thankful that I'm still alive!
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PKD
in center dialysis 3/week 3 hours for 16 months
11/2008 transplant list (active)
6 living donors denied
12/2009 Kidney Transplant
Bub
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« Reply #15 on: October 18, 2009, 08:35:42 PM »

I am so impressedl  I feel very limited in what I can do, but I an proud that I have been able to work full time.  Not much when compared to the rest of you, but I am still proud.  Sometime takes a lot of will power, especially on ""those" days.
« Last Edit: October 18, 2009, 08:40:15 PM by Bub » Logged
RichardMEL
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« Reply #16 on: October 18, 2009, 08:40:34 PM »

You may be able to do more when you get all that extra fluid off and keep it off - your body won't be fighting the fluid so much and you might feel more able to do stuff.
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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!
Neo
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Dont let dialysis stop you...

« Reply #17 on: October 19, 2009, 09:33:52 AM »

Hallo, Neo,
Please tell me, how do you protect your fistula whilst
playing baseball? Is it really possible?
Thank you, Kristina.

Yea it is.. Do you see in my pic? I use a shin guard that is able to withstand a 90 mph fastball. I customized it to fit my forearm enough to give me fexibility. I also had to show it to my doctor and tested it out with my team mates. I had them wear it and we threw pitches at it to make sure. It can have any give or it would be dangerous to my fistula. It took a lot of trial and error and research, but yea it really works. I play second base and I use it in the field as well. It is the black thing on my left arm in the pic. We play baseball not soft ball so I really had to make sure it worked, I would never put my fistula in danger, its my lifeline. And its lasted 10 years and still going after 2 years of baseball, and no incidents. The one thing that does give me trouble actually has nothing to do with the fistual actually. I dont play every game because when I get Anemic I cant even raise the bat,but the worst thing about it is becasue of the heparin we get in dialysis, I bruise easily. So when I lower my knee to field a ground ball every once in awhile my knee will swell up like a balloon and I have to ice it and take time off. But thats the main thing. If you have any other questions let me  know.
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Neo
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Dont let dialysis stop you...

« Reply #18 on: October 19, 2009, 09:35:49 AM »

I love reading this thread. It lightens my mood when Ive had a tough day.. You all spread hope with your stories!!  Great posts you all do so much. I look foward to reading more.  :beer1;
« Last Edit: October 19, 2009, 09:41:43 AM by Neo » Logged
Lillupie
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wedding 12-10-11

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« Reply #19 on: October 19, 2009, 06:22:55 PM »

ok Since dialysis  I have done more in my life then i ever have.

I finished college, got my degree, got on the deans list, while doing PD and raising my daughter. I went to Sicily last year for a week on CAPD, this year i took a road trip across country from Michigan to California to Oregan, to Yellowstone. I climbed one of the Rocky Mountains that was the height of the Sears Tower in Chicago. I took two trips to Chicago, drove from Detroit, Michigan to the very tip of the Upper Pennisula(sp) of Michigan and drove back. Now i am trying to write a book to help others who may have to go on dialysis as well as those who are on dialysis. This was all since starting dialysis.

Before dialysis I just took care of my infant and worked at Starbucks, miserable. Before that from 2000-2004 I was in college, living there, having fun and i could barely get my GPA above a 2.0!

I dont let dialysis stop me. Peroid!

Lisa
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Check out my Facebook profile for CKD "Help Lisa Spread Awareness for Kidney Disease"

It is my utmost dream and desire to reach out to other kidney patients for them to know that they are not alone in this, also to reach out to those who one day have to go on dialysis though my book i am writing!

dx with lupus nephritis 5/99'
daughter born 11/2005
stage IV CKD 11/2005-6/2007
8/2007- PD cathater inserted
9/2007- revision of PD Cathater
10/2007 started PD
kellyt
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« Reply #20 on: October 20, 2009, 11:27:43 AM »

This is a great thread, Neo!   But it makes me tired to read.  :rofl;  You all do so much!  That fabulous!!!!   :clap; :clap; :clap; :clap; :clap;   Especially RichardMel doing his taxes for FIVE hours!   yawn!!!!
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1993 diagnosed with glomerulonephritis.
Oct 41, 2007 - Got fistula placed.
Feb 13, 2008 - Activated on "the list".
Nov 5, 2008 - Received living donor transplant from my sister-in-law, Etta.
Nov 5, 2011 - THREE YEARS POST TRANSPLANT!  :D
d-man
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« Reply #21 on: October 20, 2009, 11:58:36 AM »

I'm 27 and still have some function
I  skateboarding,surf,snowboard,do gymnastics, run a chainsaw and do firewood work :urcrazy;, ride my bike to and form surf, ride dirt-bikes. anything that makes me sweat really :boxing; it helps so much to sweat     
but dam the surf thrashed me today :Kit n Stik;
« Last Edit: October 20, 2009, 05:42:01 PM by d-man » Logged
Neo
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Dont let dialysis stop you...

« Reply #22 on: October 20, 2009, 02:46:41 PM »

This is a great thread, Neo!   But it makes me tired to read.  :rofl;  You all do so much!  That fabulous!!!!   :clap; :clap; :clap; :clap; :clap;   Especially RichardMel doing his taxes for FIVE hours!   yawn!!!!

 :rofl; Good one! LoL
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RichardMEL
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« Reply #23 on: October 20, 2009, 05:33:50 PM »

hey, the taxes aren't finished yet :( *sigh*

*grumble* I don't mind paying my taxes given the govt spends way more taxpayer $$$$ keeping me alive than I pay them, but the paperwork and stuff is a real PITA!!

Still, should all be done with soon (for another year anyway) :)
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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!
Sugarlump
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10 years on and off dialysis

« Reply #24 on: October 21, 2009, 01:11:44 AM »

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
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10 years of half a life
3 years HD 1st transplant Feb 08 failed after 3 months
Back to HD 2nd transplant Dec 10 failed after 11 months
Difficult times with a femoral line and catching MSSA (Thank you Plymouth Hospital)
Back on HD (not easy to do that third time around)
Fighting hard (two years on) to do home HD ... watch this space!
Oh and I am am getting married 1/08/15 to my wonderful partner Drew!!!
The power of optimism over common sense :)
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