NKF in 2016: Legislative Priorities


Though the National Kidney Foundation (NKF) is pleased with our advances this past year to ensure kidney patient perspectives were considered and included in policy decisions, we are hard at work o…

Source: NKF in 2016: Legislative Priorities

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Kidney Patient Advocacy Has a New Face — 60 of Them


The National Kidney Foundation (NKF) has launched a new patient advocacy and engagement program to expand its grassroots network at the state level. The Kidney Action Committee is comprised of 60 p…

Source: Kidney Patient Advocacy Has a New Face — 60 of Them

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#Dialysis and DevonTexas


statsSomeone asked recently about the stats from my blog www.DevonTexas.com.  I looked them up and they are quite impressive, I must say.  All-time posts, views and visitors since I started it in June 2012…  Posts = 256,  Views = 72,196,  Visitors = 36,319.  Thank you to my readers and the visitors for your support.

BTW, here’s my very first post: “Hello World”.  I had no idea what I was doing back then and no idea it would bloom into something as big as DevonTexas.com and, ironically, it’s gone all around the World! .

Another fascinating fact are the readers’ countries that come to visit.  They come from all over the world!  Mostly from the US, Canada, and the UK but also from Malaysia, China, Singapore, Philippines, Australia, western Europe, Eastern Europe, Russia… basically all the world.  Thank you to my friends from around the globe.

I hope all my visitors and readers found what they are looking for.   I hope devonTexas.com was helpful to you.  One comment that inspires me  even now is this:

Thank U so very, very much Devon Texas and to Google search! This article is such a blessing to me and hope it will be to many many more individuals throughout the world!

He goes on to describe his mother’s suffering with a problem potentially the same as what I went through and I can certainly feel for him and his mother.  What I really appreciate though was the fact that my writing about my experiences has contributed to the comfort of others.  It’s not often easy to write frankly about my “adventures” on dialysis and as a kidney patient.  There are some that are easy but most are difficult.  What drives me is that I know others are going through what I have too and my posts about it might help them.  In the case above it did and for that I’m thankful, inspired, and driven.

Thank you, again, to the visitors and readers and especially those who click on the “follow” button.  Every time I post, they receive a notice of that.  You can too.  Just click on the follow button and add me to your Facebook follows.  Also, please share this with your Facebook friends.

 

Posted in dialysis, ESRD, friendship, kidney, lobbying, patient care, personal, thankful, thoughts | Tagged , , , , , | Leave a comment

Dialysis and sausage


sausageSince it’s a holiday weekend (Memorial Day 2016), some of us may have a moment to cook something containing elements that are good for us as we try to avoid things we shouldn’t eat.  Breakfast seems to be a time we especially need something low in Potassium, low in Phosphorus and high is Protein.  And, here is a meat we can eat for dinner too.  From Kidneybuzz.com is a recipe for “homemade” sausage that’s high in protein and low in everything else we are avoiding.  Yay! Enjoy.

Tasty and Savory Sausage

Have a warm, friendly Holiday!

Posted in CKD, cooking. cookbook, dialysis, diet, phosphorus, potassium, sodium | Tagged , , , , , , , , , , | Leave a comment

Dialysis and Friday


Friday 2 Friday 3

 

 

 

Friday 1Hey all!  

I really don’t have much to post about today other than Happy Friday!

For those on a MWF dialysis schedule, you get two days off!

For those on TTS schedule, you only have one more day before you get your weekend.

So we all have something to be pleased about today, I hope.  And I hope all is well with you.

(Please excuse me. I rarely do silly things like this post but I felt like most of us need it today)

Devon

© 2016 DevonTexas

Posted in dialysis, ESRD, friendship, kidney, personal, Uncategorized, World Kidney Day | Tagged , , , , , , | Leave a comment

Dialysis and Change


change 2Change is good.

Do something different!  Today!  Act on impulse.  If it is your “off day” from dialysis, go to a nearby park. go fishing, fly a kite, take a walk, drive a road off the main road that’s not your usual path, call or visit a friend you haven’t talked to in a while, etc.

 

What did I do to “change”?

While I was writing this, I paused for a moment and sent text messages tro several people I haven’t talked to in a while.  As I considered this, before I acted upon it, at first I thought, “Later.”  But, what if later didn’t happen.  What if I never got around to it?  Then, change wouldn’t happen.  I am in control of my life when I enforce change.  Change can be the smallest thing.  It doesn’t have to be “dramatic”

 

ball-n-chain-guy_ballFor all of us Dialysis patients (and people in general), we can easily get caught it a doldrum life where we just live for dialysis.  We are either in dialysis or waiting for dialysis.  Our lives center around dialysis instead of the other way around. By enforcing and encouraging change, acting upon impulse, we break the chain that bind us.  We gain control of our lives.  Embrace change! Go for it!

 

 

 

Posted in activism, depression, dialysis, ESRD, kidney, patient care, personal, social networking, thoughts | Tagged , , , , , | 1 Comment

Dialysis and Fluid Control (updated 5/4/16)


 

Update: 5/4/16:  Well, well, well.  It’s certainly been a long time since I posted about this.  It’s a few years later (time flies when you’re having kidney failure, doesn’t it?) and fluid control isn’t the problem for me as it once was.  One issue is that my body often confuses hunger and thirst.  I may be hungry but think I’m thirsty or thirsty and think I’m hungry.  I’m still learning to tell the difference between the two.  However, I’ve pretty well trained myself to control my fluid intake by a couple methods.  One popular with my fellow patients, is to take a sip, let it sit in your mouth for a few seconds, swish it around , and then swallow.  That seems to satisfy thirst for a while better than gulping down a cup.

If I’m out to dinner, I tell the server or busser not to refill my glass of water.  (I don’t drink soda anymore, only water) so I can keep track of how much I consume.  If they keep refilling it, it’s easy to lose track.  At some recent out of town trips, there was a lot of restaurant visits and I did rather well at fluid control.  I was quite proud of myself.

At home, I limit how much coffee I drink to two cups max.  Again, sips rather than gulps.  It takes me a couple hours to drink one cup.

(I also updated updated the link to the Network 14 Fluid Control page.  Sorry about that.  They moved their website pages around and changed all the links!)

I hope you are having some success.  If you have a trick or two to add, please do in the comments below.

Dialysis and Fluid Control

This month the ESRD Network of Texas will introduce a poster to make the point about fluid and its effects on the heart for people on dialysis. You can view it here.  (En Español) Actually it’s visually quite frightening and that’s a good thing.  As patients, we should be very careful about our fluid intake for many reasons.  First and foremost is because we have no output.  If you imagine yourself as a sink with no drain, that’s us, and that’s why it’s important to be careful how much fluid you consume. The only way to remove excess fluid is through dialysis.

I’m sure you know why you weigh yourself before and after treatment.  It’s to measure the amount of fluid that needs to be removed during dialysis.  You have a “dry weight” that’s the weight you should be after treatment.  Any weight above that is the amount to be removed during treatment.  If you have consumed a lot of fluids, there’s that much to remove.  The more that needs to be removed the more stress your body has to endure in the process.  The less that needs to be removed, the easier it is.  The problem is finding the right amount that allows you to come off treatment with the least discomfort.

I found that I have a fluid removal maximum.  If I take off too much fluid or much above that amount, I will cramp.  Cramping’s not good.  It’s painful and, like any pain, it’s a signal something’s wrong. You cramp because your muscles are lacking fluid.  Your body needs a certain amount and it reacts violently if there’s too little.   Often it doesn’t matter if I come in well above my max removal amount, taking off much above that will result in cramps.   That’s because fluid removal is a function of the amount of fluid removed over time.

There’s a fixed amount of time in the treatment; generally four hours and then some. If you have 4 kilos to remove, that’s 1 kilo per hour.   If you have 6 kilos, that’s 1.5 kilos per hour.  If you come in at 8 kilos, that’s 2 kilos per hour.  I found I can only endure a maximum of 5.0 kilos over four hours.  Any more than that… CRAMPS.  And I really, really hate cramps.   If I come in over 5.0, I do only that or perhaps less if it’s a Monday, and I’m careful the next day so I can come in at a reasonable fluid weight and take off a reasonable amount in the next treatment.  If it’s a Monday, I know I have two more treatments so I don’t sweat it much.  If it’s a Wednesday, I know I have only one more day to be careful or the problem will carry over into the weekend.   I try very hard not to carry over my fluid into the weekend.  It only compounds the problem.

So, fluid control is also a function of the day of the week.  If it’s a Monday, I’m less concerned about my fluid.  I know I’ll be high because I had two days to accumulate and I have two treatments to remove it after this one.  If it’s Wednesday, I get a bit more concerned.  I only have one more treatment this week.  If it’s a Friday, I’m out of luck.  I’ve actually done a fourth treatment on Saturday because of this.  I learned my lesson.  So on the off days, I am really careful about my fluids.

And fluid control was really a problem for me in the first couple years.  I hated feeling thirsty or dehydrated.  Often after a treatment I would consume two or three large cups of water.  That works out to about 36 ounces of water.  For me, my maximum is 48 ounces of fluid in 24 hours, so in the hour after treatment, I’d already used most of my quota for the day.   Not a good practice.  In those days, it was not unusual for me to come in with 6 to 8 kilos of fluid to be removed.  Those were painful, uncomfortable times with lots of bloating and CRAMPS. (did I give this enough emphasis? see my post about “hand cramps“, too.)

But feeling thirsty and being dehydrated are two different things.  You may be thirsty but not dehydrated.  That’s what I discovered about myself anyway.  So, I started just sipping a small cup of water after treatment.  I got rid of the large drink cups and replaced them with an 8 ounce graduated cup.  (A graduated cup shows the ounces as lines on the outside of the cup.) When I got home after treatments, I would fill it with two or three ounces and drink that slowly. It would satisfy my thirst but not fill me with useless fluid.  Likewise I used that same cup at meals.   My limit was 6 of those 8 ounce cups in a day or 48 ounces.  I can’t take credit for the graduated cup idea.  My nutritionist suggested it and it had a significant effect on my fluid control between treatments.

Likewise, at treatment, I would arrive with a large drink to consume during the session. That cup was often 32 to 48 ounces.  Sort of self-defeating, isn’t it?  Simple answer, yes.  Remember my comparison of the sink with no drain?  Just because you’re in treatment, it doesn’t mean you can add more fluid.  The objective is to remove it.  Now I have an 8 ounce refillable bottle and often I don’t drink more than a couple ounces in the entire session.  It also made the calculation of how much fluid to remove much easier.  Now the tech doesn’t have to look at my Big Gulp and add that to the total fluid removal goal.

It didn’t happen overnight.  It took a year or so and I didn’t realize it was happening.  One day I was drinking more than 48 ounces a day without thinking.  A year later I was drinking much, much less; all because of that graduated cup and my persistence in using it.  The net result is that I come to treatment with much less extra fluid and it’s not so painful and uncomfortable removing it.  Now, when I’m feeling bloated, it’s usually only an extra kilo or so.  I can take that off without a lot of fuss and bother.  I rarely cramp now and that’s a good thing.

One thing I stopped doing was to get the “combo” when I went out to eat.  I order a small cup of water with my meal.  Or if they don’t have anything but a combo, I take the cup and only fill it with about 8 oz. of liquid.  That is one of my cups for the day.  I don’t “upsize” any more under any circumstances!  No one needs to do that and especially those of us on fluid restrictions.  Getting anything more than a small drink is too much temptation to overload on fluid.  Think of it this way, if you drink that large drink, that’s it until the next treatment!  I can’t go that long so I stick to my 8 oz. cup.

I can’t take all the credit for my success.  I can pat myself on the back for following through but Barbara, the nutritionist, gave me the cup that got me started and Bobby, the technician, made the observations about my max removal amount.  So, listen to the people around you, the professionals that know a lot about treatments and precautions.   They can really help but you have to be responsible for your own fluid control.  You’ll feel better, dialysis will go more easily, and you’ll avoid painful cramps. (See also, my post about “Dialysis and Cramping” if you have’nt already)

If you have some ideas or suggestions for controlling your fluids, pass them along, please.

Update 10/20/12: I had a rough week last week with fluid control.  So, I returned to my “sippy cup” and went in at 2 kilos of Friday of this week as compared to 4 kilos on Monday. The “sippy cup” works!

Update 9/25/12: I found this really simple suggestion for a way to enjoy but control fluid intake! Take a look atThe Confessions of a Renal Tippler

Update: 9/19/12: I am once again dealing with this issue since I feel I lost some control of it over the last couple weeks.  So, I’m raising it once again for our mutual benefit.  How much fluid are you taking off with each treatment? I’ve had some readers recently complaining about “Mondays!” and when I asked, they said 5.5 and 6.0.  That’s WAY too much, y’all!  I get upset when my number is over 4.0!  And that was the case last week.  I was 4.3 and 4.4.  So I went back to my “sippy cup”, an 8 oz. graduated cup, and limiting myself to two or three of those a day.  I will know today in my Wednesday session, if I’m succeeding in my goal.  I was pretty good on Monday because I was good over the weekend but today should be better.  I really don’t like that bloated, uncomfortable, hard-to-breathe feeling.  If you’re having problems with fluid control or need some remediation as I do, read on.  Taking on too much fluid is dangerous and keeping it under control is important.

Updated 8/26/12: I found this pamphlet titled, “Why Am I So Thirsty?” and wanted to share this with you.  It may be helpful as it explains some of the reasons you may become thirsty and then consume too much fluid.  It’s all part of Fluid Control. 

DevonTexas © 2016

Posted in cramping, cramps, dialysis, ESRD, fluid control, New Patient | Tagged , , , , , , , | 17 Comments