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Zach
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"Still crazy after all these years."

« Reply #325 on: November 13, 2009, 09:21:00 AM »

Sounds great, MissyKew!
Please keep us informed on your progress.

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."
MissyKew
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« Reply #326 on: November 13, 2009, 10:50:41 AM »

I will... Thank you Zach...:)
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Maker
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« Reply #327 on: November 13, 2009, 11:12:01 AM »

I vote for working out before dialysis if your schedule allows it, that way if you feel tired or want to rest after dialysis you've already got your workout in!  Seems to work best for me.  Plus, I like to have the rest of my evening & night free after dialysis to go do something fun...
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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
Zach
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"Still crazy after all these years."

« Reply #328 on: February 26, 2010, 02:58:52 AM »

 :bump;

Always an interesting and important topic.

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."
MooseMom
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« Reply #329 on: February 26, 2010, 08:47:25 AM »

Thanks so much for bumping up this thread!

I try to walk 2-3 miles a day.  In the summer, I swim instead.  I've gotten out of my routine because for whatever reason, this winter has been particularly uncomfortable for me.  I grew up in Texas, so I don't do winter, but after five years in Chicago, I was getting used to it.  Last winter, I got snowshoes for Christmas and was shoeing about just weeks after major surgery.  But I have not handled the cold well this winter.  I think it is because my kidney function has finally plummeted and I'm a bit anaemic.  Maybe it's just because it has been really cold.  But yesterday, it was cold but sunny, so I put on all my gear and walked my three miles for the first time in several months, and I was so happy about it!  I'm going to do the same today despite it being on 20 degrees outside with a wind chill factor of about minus gazillion.

I don't like gyms.  I don't like paying a lot of money to exercise in other people's sweatiness.  I like the fresh air.

I am hoping I will be well enough to keep on exercising once I start dialysis.  FSGS has cost me just about everything, and I don't want it to take away yet one more thing that keeps me happy.
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
Des
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« Reply #330 on: February 26, 2010, 09:49:56 AM »

I am so unfit at the moment .... I am walking so slow that a tortous ( sorry about the spelling rerun) can beat me on a downhill.  :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...

South Africa
PKD
Jan 2010 Nephrectomy (left kidney)
Jan 2010 Fistula
Started April 2010 Hemo Dialysis(hate every second of it)
Nov 2012 Placed on disalibity (loving it)
tyefly
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This will be me...... Next spring.... I earned it.

« Reply #331 on: February 26, 2010, 09:53:10 AM »

  Well you know what they say about the turtle and the rabbit....
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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
Zach
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"Still crazy after all these years."

« Reply #332 on: April 23, 2010, 02:22:46 PM »

 :bump;

Time to pump you up!
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."
lunadatura
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Fate happens, Destiny is what you do with it.

« Reply #333 on: April 29, 2010, 02:24:29 PM »

What i want to know about excercise and ESRD is this - for the few years prior to kidney failure I would excercise and get stronger but as my kidneys failed the inverse seemed to happen - no matter what I did I just got weaker. My mom seems to think that I just need to get some excercise to get stronger. I just dont see how that can happen when i have no energy and it takes me twice as long to walk the same distance that it used to.

your thoughts??

I am still amazed/jeaoous that anyone who has ESRD can do any excercise like bike 15 miles in a day or snowshoe 3 miles like some of the earlier posts in this thread - they really are on dialysis - REALLY?? what are they superpeople???
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Diagnosised FSGS via biopsy 11/2006
Started Dialysis 5/2009
hemo-dialysis except 9.09-6.10 = peritoneal then back to hemo
currently in center hemo 3x per week
Evaluation for transplant July 2010
Almost received transplant 8.13
repeated calls and admissions for transplant since then but no kidney yet
3.1.14 got ideal kidney and having exceptional recovery - creatine went from 8.5 to 1.1 in less than 2 weeks.
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« Reply #334 on: April 29, 2010, 08:14:21 PM »

Nope, just super determined.  When I started to force myself to exercise, I was lucky if I could last 10 minutes on an exercise machine at a slow pace.  But I kept doing the 10 every day until I could do 15, and so on and so on.

I will say, though, that I couldn't manage any exercise until I found the right doc.  I found an internist who realized there was a huge difference between struggling along at a hemoglobin of 8 or 9 compared to struggling with one at 10 or 11.  He worked to adjust a dozen different different lab values for me, getting them as close to normal as he could in spite of my ESRD.  He got me IV iron before I started D when none of the oral version would stay down.  He got me started on binders to control bone pain. He tried an endless series of bp meds and combos of them until he got something that kept my bp down without leaving me permanently dizzy.  He treated every symptom he could, so that I could have the best quality of life possible with failing kidneys.

The funny part was that when my kidneys finally dropped low enough in function that my neph wanted me to start D, I was actually feeling better than I had in years, thanks to the internist efforts to treat all my side effects!
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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.

Zach
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"Still crazy after all these years."

« Reply #335 on: April 30, 2010, 06:13:51 PM »

Nope, just super determined.  When I started to force myself to exercise, I was lucky if I could last 10 minutes on an exercise machine at a slow pace.  But I kept doing the 10 every day until I could do 15, and so on and so on.

I will say, though, that I couldn't manage any exercise until I found the right doc.  I found an internist who realized there was a huge difference between struggling along at a hemoglobin of 8 or 9 compared to struggling with one at 10 or 11.  He worked to adjust a dozen different different lab values for me, getting them as close to normal as he could in spite of my ESRD.  He got me IV iron before I started D when none of the oral version would stay down.  He got me started on binders to control bone pain. He tried an endless series of bp meds and combos of them until he got something that kept my bp down without leaving me permanently dizzy.  He treated every symptom he could, so that I could have the best quality of life possible with failing kidneys.

The funny part was that when my kidneys finally dropped low enough in function that my neph wanted me to start D, I was actually feeling better than I had in years, thanks to the internist efforts to treat all my side effects!

jbeany, you're my hero!
 :-*
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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."
totosidney
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« Reply #336 on: June 01, 2010, 09:57:04 PM »

There is a famous study where college varsity athletes were forced to lie flat on their backs in a hospital bed for a week or 10 days. Afterwards they had horrific loss of muscle mass and could barely walk. Sound familiar? Often, it isn’t dialysis that causes you to feel like sh**. It is the wasting of chronic illness. Technically I think it is called a downward spiral. It is very difficult to get started with an exercise program. Matter of fact, it can seem downright impossible.
Dialysis patients and doctors should take a lesson from cardiac rehab. If you have a heart attack, once they sew you back together, what do they do? Put you on a treadmill! How fast do you walk? Slower than a baby crawls! And if that is where you are at, that is what needs to be done.
I was lucky to be a long distance runner and bicycler prior to kidney failure, so it was easier for me. But after a difficult failed transplant and cancer treatment, I was obese and way out of shape. When I started hemodialysis I joined a gym. I worked out religiously just prior to every treatment. I decided that exercise was going to be “joined at the hip” to the hemodialysis. It worked!  In a year I lost 40 pounds and was running 5 mile runs. AND, I often sweated off every pound of fluid! That was about 12 years ago. Now I am just recovering from 10 months of heart problems and a couple operations for a new access. My permcath came out today! Hurrah! Tomorrow I start on the stationary bike and the treadmill. Very slowly, you can bet. I certainly don’t know if I will ever again run a 10 minute mile. But a 12 minute mile will suit my old bones just fine.
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MooseMom
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« Reply #337 on: June 01, 2010, 10:54:51 PM »

You go, totosidney!  I firmly believe in the de-stressing properties of exercise.  I am not going to let CKD give me an excuse to quit exercising.  I'm no marathoner, but I enjoy walking, swimming and strength training and just incorporating physical activity in my daily life.  Chronic illness can be so depressing, and exercise is a pretty good antidote.
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
Zach
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"Still crazy after all these years."

« Reply #338 on: June 02, 2010, 07:17:52 AM »

totosidney, do you have any links to the work of Dr. Patricia Painter you can share with us?

8)
« Last Edit: June 02, 2010, 07:19:03 AM by Zach » Logged

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."
totosidney
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« Reply #339 on: June 02, 2010, 01:56:17 PM »

totosidney, do you have any links to the work of Dr. Patricia Painter you can share with us?

8)

If you do a Google search "Patricia Painter" Exercise Dialysis you will locate a bunch.
(Damn good reading) The scholarly literature is extensive: Link:

http://scholar.google.com/scholar?hl=en&rls=com.microsoft:en-US&resnum=0&q=dr%20patricia%20painter%20exercise%20and%20dialysis&um=1&ie=UTF-8&sa=N&tab=ws

Patricia Painter, Ph.D.
Adjunct Professor of Medicine
University of Minnesota
Dr. Painter is a world-recognized expert in physical functioning of patients with chronic kidney disease.  She has conducted several studies on exercise training in dialysis and transplant patients funded by NIH and private agencies.  She is currently the principal investigator on a NIH sponsored study of determinants of exercise capacity of patients on different end stage renal disease therapies.
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totosidney
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« Reply #340 on: June 02, 2010, 03:01:02 PM »

You go, totosidney!  I firmly believe in the de-stressing properties of exercise.  I am not going to let CKD give me an excuse to quit exercising.  I'm no marathoner, but I enjoy walking, swimming and strength training and just incorporating physical activity in my daily life.  Chronic illness can be so depressing, and exercise is a pretty good antidote.
:thumbup;
Hello, MooseMom! I agree wholeheartedly, but with a couple of additional thoughts.

Relaxed exercise as you describe is probably the most attainable goal and it is an enormous good for many reasons. Please allow me to say, with no disrespect whatsoever, that It may be within the reach of some dialysis patients to strive for a more elite level with a different set of rewards. I have seen a 60 year old hemodialysis patient run 10 miles in 1 hour! This man was a long-time runner and was only on hemo 1 year, but wow! I used to be able to go less long and hard and I was able to get that lovely endorphin rush. This seems to be beyond my current capacity and I have reason to believe that I will never be able to work out as that level again. But I will try because the reward is considerable.

Also, some patients have been wrung out and worn out. The level of relaxed exercise you describe seems like walking on the moon to them.  It would not be unexpected for nearly all long-term dialysis patients to hit one of the innumerable speed bumps and end up unable to exercise at even a moderate level. Given the correct guidance and exercise prescription most patients can regain their strength. This however is not generally believed or practiced. I hope that my little rant may reach one of those patients. I apologize for using your enlightened comment as my launch pad. It’s just that I do get a bit overexcited on this topic.  Cheers.. Sid
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totosidney
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« Reply #341 on: June 02, 2010, 03:09:48 PM »

What do you guys do about exercise?  I have a membership in a gym, but hadn't been going for a while because I didn't have my car.  Now that I have a vehicle again, I am going to go back to the gym.
My problem is that I am losing weight and parts of my body are seeming so stretchy. YUK!
Do any of you exercise regularly?  Would you exercise the morning before you had HD or would you do it on the day you didn't go?
What kind of exercise do you do?
I tend to stick to the treadmill and an ab machine.  I will probably also do a leg machine.

I found that exercising just prior to hemo was ideal. If you work up a sweat, you lose some fluid and some sodium. This makes the physical effects of treatment less stressful. It puts you in a good mood as you go for your very long haul in the chair. Also, you feel your best just before treatment and can do a better work out with less low BP problems etc. If blood sugar is a problem, watch that carefully as the exercise combined with the dialysis can cause some strange numbers.
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kevno
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« Reply #342 on: June 02, 2010, 03:32:26 PM »

Wake up each morning do my exercises. Lye down on the bed bring your two elbows out, if they do not hit wood you know you are still alive ;D

Plus a bit of walking when not in pain with my leg. Snooker, fishing. Forgot :oops;  running from the nurses after tormenting them  :angel;
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But this little saying keeps me going!!

"RENAL PATIENTS NEVER GIVE UP!!!!!!"
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« Reply #343 on: June 10, 2010, 10:38:19 PM »

Wake up each morning do my exercises. Lye down on the bed bring your two elbows out, if they do not hit wood you know you are still alive ;D

Hahahaha!
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Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
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« Reply #344 on: June 30, 2010, 05:30:48 PM »

Hiya folks

I recently took a terrible tumble down a set of cement steps and mashed my knee. The only silver lining in this whole deal has been learning that I can increase my strength via wieght training. Cardio work outs may be an uphill battle due to ESRD and hemo and anemia etc but strength needed for wheel charing etc can be built.

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Diagnosised FSGS via biopsy 11/2006
Started Dialysis 5/2009
hemo-dialysis except 9.09-6.10 = peritoneal then back to hemo
currently in center hemo 3x per week
Evaluation for transplant July 2010
Almost received transplant 8.13
repeated calls and admissions for transplant since then but no kidney yet
3.1.14 got ideal kidney and having exceptional recovery - creatine went from 8.5 to 1.1 in less than 2 weeks.
Zach
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"Still crazy after all these years."

« Reply #345 on: July 13, 2010, 09:30:43 AM »

 :bump;
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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."
MooseMom
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« Reply #346 on: July 13, 2010, 11:50:58 AM »

Thanks for the bump because I had not seen totosydney'spost of 2 June.  totosydney, I really wish that more nephs would write a prescription for their dialysis patients for exercise or for a session with a personal trainer or a physical therapist who could assess the patient and write up an individual exercise program.  You are right...some patients are fundamentally quite fit while others really struggle to just walk to the end of the road, but everyone should be given the opportunity to improve their health through exercise.  Given encouragement, clear goals and a reasonable plan to achieve those goals, I truly believe that everyone could benefit from some sort of sustained physical activity.

Now that it is summer, I swim every day; I try to pay special attention to working my arms as I am trying to get my fistula to mature.  I've just had my cardiovascular workup for the pre-transplant doodah, and I must be doing something right because all my test results came back "excellent".  I am trying very hard to stay as fit as possible to give myself the best chance of doing well with a new kidney.
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
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« Reply #347 on: July 15, 2010, 03:19:04 PM »

Aloha!!

 :2thumbsup;  :cheer: Moosemom!  I totally agree that more nephs should prescribe physical therapy to help patients get into a safe workout routine.  I have some docs here who are more than willing to do that and some that won't.  One of our physical therapy clinics allows patients to continue going there to use the machines (for a monthly fee) once their insurance stops covering the therapy.  The patients like it because they don't feel it's as competitive of an environment as some of the local "fitness clubs". 

By the way, my patients who wanted to start the golfing league are having their first golf outing this Sunday!  Guess who will be waiting at the 19th hole?  (I'm not a golfer)

Also....here's an article about a patient at my clinic that is an inspiration to our other patients.  The article was published this week in our local paper. 

  http://www.midweek.com/content/columns/goodneighbors_article/duane_cabe/     
 
 
 
 
 
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« Reply #348 on: August 15, 2010, 06:07:57 AM »

My DH had to have about 6 weeks off walking because he had knee surgery.  He got fatter from sitting around and comfort eating (but didn't we have fun demolishing goodies).  Last time he went to his renal doctor he was 92kg and needs to be 81...
 :oops;
So he has started doing two walks a day, each walk is a lap which takes us about 50 min to do.  When he went on his afternoon one today I said, you go ahead, I'll catch up...  Soon later I set out after him and tried to run to catch up... asthma came on.. wheezed and coughed the whole way around the track, eyes watering, nose running, couldn't talk, and was banned from the evening walk.  :police: 

Not sure if I mind actually though I need to lose weight too...
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Natalya – Sydney, Australia
wife of Gregory, who is the kidney patient: 
1986: kidney failure at 19 years old, cause unknown
PD for a year, in-centre haemo for 4 years
Transplant 1 lasted 21 years (Lucy: 1991 - 2012), failed due to Transplant glomerulopathy
5 weeks Haemo 2012
Transplant 2 (Maggie) installed Feb 13, 2013, returned to work June 17, 2013 average crea was 130, now is 140.
Infections in June / July, hospital 1-4 Aug for infections.

Over the years:  skin cancer; thyroidectomy, pneumonia; CMV; BK; 14 surgeries
Generally glossy and happy.

2009 - 2013 PhD research student : How people make sense of renal failure in online discussion boards
Submitted February 2013 :: Graduated Sep 2013.   http://godbold.name/experiencingdialysis/
Heartfelt thanks to IHD, KK and ADB for your generosity and support.
RightSide
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« Reply #349 on: August 15, 2010, 10:28:28 AM »

I just bought a Schwinn elliptical trainer for my home.

I had held off doing that, until I could be reasonably sure it wouldn't adversely impact my health.  I asked my vascular surgeon if it could damage my fistula.  He said no.  My cardiologist said that I did fine on the cardiac stress test too. 

My neph is all for it--he just bought an elliptical trainer for his house too!

So then I took the plunge and shelled out the money.
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