I Hate Dialysis Message Board

Dialysis Discussion => Dialysis: General Discussion => Topic started by: Neo on October 16, 2009, 08:53:40 AM

Title: WE CAN on dialysis!! What do you do?
Post by: Neo 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!
Title: Re: WE CAN on dialysis!! What do you do?
Post by: tyefly 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 .......
Title: Re: WE CAN on dialysis!! What do you do?
Post by: zona 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;
Title: Re: WE CAN on dialysis!! What do you do?
Post by: kellyt 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;
Title: Re: WE CAN on dialysis!! What do you do?
Post by: tyefly 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.... 
Title: Re: WE CAN on dialysis!! What do you do?
Post by: KICKSTART 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 !
Title: Re: WE CAN on dialysis!! What do you do?
Post by: Neo 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;
Title: Re: WE CAN on dialysis!! What do you do?
Post by: kitkatz 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!
Title: Re: WE CAN on dialysis!! What do you do?
Post by: sutphendriver 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.
Title: Re: WE CAN on dialysis!! What do you do?
Post by: kamalshah20 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
Title: Re: WE CAN on dialysis!! What do you do?
Post by: kristina 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.
Title: Re: WE CAN on dialysis!! What do you do?
Post by: lizabee 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)
Title: Re: WE CAN on dialysis!! What do you do?
Post by: RichardMEL 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 :)
Title: Re: WE CAN on dialysis!! What do you do?
Post by: jbeany 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.
Title: Re: WE CAN on dialysis!! What do you do?
Post by: staceyand joe92 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!
Title: Re: WE CAN on dialysis!! What do you do?
Post by: Bub 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.
Title: Re: WE CAN on dialysis!! What do you do?
Post by: RichardMEL 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.
Title: Re: WE CAN on dialysis!! What do you do?
Post by: Neo 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.
Title: Re: WE CAN on dialysis!! What do you do?
Post by: Neo 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;
Title: Re: WE CAN on dialysis!! What do you do?
Post by: Lillupie 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
Title: Re: WE CAN on dialysis!! What do you do?
Post by: kellyt 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!!!!
Title: Re: WE CAN on dialysis!! What do you do?
Post by: d-man 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;
Title: Re: WE CAN on dialysis!! What do you do?
Post by: Neo 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
Title: Re: WE CAN on dialysis!! What do you do?
Post by: RichardMEL 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) :)
Title: Re: WE CAN on dialysis!! What do you do?
Post by: Sugarlump 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
Title: Re: WE CAN on dialysis!! What do you do?
Post by: tyefly 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 .........
Title: Re: WE CAN on dialysis!! What do you do?
Post by: kitkatz 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!
Title: Re: WE CAN on dialysis!! What do you do?
Post by: paris 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;
Title: Re: WE CAN on dialysis!! What do you do?
Post by: CybeR 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!!  >:(
Title: Re: WE CAN on dialysis!! What do you do?
Post by: Zach 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)
Title: Re: WE CAN on dialysis!! What do you do?
Post by: CybeR 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
Title: Re: WE CAN on dialysis!! What do you do?
Post by: Neo 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.
Title: Re: WE CAN on dialysis!! What do you do?
Post by: Neo 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.
Title: Re: WE CAN on dialysis!! What do you do?
Post by: Maker 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.
Title: Re: WE CAN on dialysis!! What do you do?
Post by: sico 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.
Title: Re: WE CAN on dialysis!! What do you do?
Post by: CybeR 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.
Title: Re: WE CAN on dialysis!! What do you do?
Post by: Maker 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
Title: Re: WE CAN on dialysis!! What do you do?
Post by: jennyc 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!
Title: Re: WE CAN on dialysis!! What do you do?
Post by: Neo 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
Title: Re: WE CAN on dialysis!! What do you do?
Post by: willowtreewren 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.
Title: Re: WE CAN on dialysis!! What do you do?
Post by: Stacy Without An E 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.
Title: Re: WE CAN on dialysis!! What do you do?
Post by: Zog on January 27, 2010, 01:48:01 PM
My wife had a baby on dialysis.  She teaches preschool.
Title: Re: WE CAN on dialysis!! What do you do?
Post by: jbeany 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!
Title: Re: WE CAN on dialysis!! What do you do?
Post by: sullidog 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
Title: Re: WE CAN on dialysis!! What do you do?
Post by: Zach on January 29, 2010, 05:24:30 AM
 :beer1;
Title: Re: WE CAN on dialysis!! What do you do?
Post by: twirl 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    :'(
Title: Re: WE CAN on dialysis!! What do you do?
Post by: lola 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)