Since 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.
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”
For 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!
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: 9/19/12: 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.
I survived! I’m at Reagan National Airport awaiting my flight home. There’s some question about the landing part as there are severe thunderstorms expected over Dallas tonight. We’ll see. I just want to get home.
Pat on the back to Dialysis Patient Citizens (DPC) who planned and executed this event and especially toKristy Lukaszewskiwho worked tirelessly to resolve all those many problems that arise over this 72 hour period of chaos., She was amazing. She made it look easy but today as I checked out with her, you could tell she was tired. Very tired. Thank you, Kristy, for all the hard work you put into this huge plan!
Each year we have certain objectives. This year it was expanding the Medicare Advantage plan to allow dialysis patients to enroll in them. As it is, we can only enroll in the Supplemental program but none of the Advantage plans. If we can participate in those plans we might be able to add such features as dental, vision, and prescriptions. You see the ads about plans with all these features but, as an ESRD patient, you cannot join them. If Medicare Advantage expands to include ESRD patients, we can have a choice of these . plans.
The second item on our agenda this year was to begin laying the groundwork for “Integrated Care Act” that would bring the Coordinated Care model to the ESRD community. In this model, the center is given funding for a Nurse Practitioner to coordinate the care for patients in a “special needs” category especially those hospitalized recently. Rather than have a patient discharged with several pages of instructions, prescriptions, referrals, and care suggestions, that information would be copied to a “Care Coordinator (CC)” who would assist the patient with all this. The CC would make appointments, for example, monitor to assure the patient got there (including arranging transportation), and make sure the patient got the information, treatment, and prescriptions needed. The analogy we used was “like a quarterback” coordinating all the players on the field. There are developmental implementations of the CC Model in several states and it is proving to be effective at decreasing re-admissions to hospitals and contributing to the general welfare and good health of dialysis patients. There is no bill submitted to do this yet but it is being written.
We also currently have bills before the Senate (SB.598) and the House of Representatives (HB.1130) that are the consolidation of several issues we need resolved to benefit dialysis patients. These are versions of the same bill but before the different Houses of Congress. Collectively they are referred to as “The Kidney Care Act” or, the official name, “The Chronic Kidney Disease Improvement in Research and Treatment Act”. Expanding Medicare is one item in these bills, along with the “Immunosuppresive Drug Act” that allows transplant patients to get Medicare coverage for their badly needed anti-rejection drugs indefinitely. There are about two dozen other items in the bill to benefit kidney and dialysis patients.
As to the “Immunosuppressive Drug Act”, once a kidney patient gets a transplant, the clock begins ticking. Three years later, patients under the age of 65 can no longer receive Medicare Part D (Prescription drugs) benefits and they have to pay for these out-of-pocket. This could mean $1000-1500 per month. If they can’t afford them, they stop taking them, reject the kidney and go back on dialysis. This is a huge waste of money, time and a kidney, worst of all. Extending Medicare Part D indefinitely would solve this problem.
You can call your members of Congress and ask them to support HB.1130 (for your Representative) and SB.598 (for both your Senators). It’s a three minute call. They answer, you say “Hello. I’m a constituent of Representative (or Senator) ______ and I’m calling to ask him/her to support kidney patients with the bill HR.1130 (or SB.598) that expands Medicare Advantage Plans to include dialysis patients along with many other features to improve the lives of kidney patients like me. DPC (Dialysis Patient Citizens recently visited your offices about this matter.” That’s it! Done! Simple, but very effective. The staffer that answered the phone makes a note of this, passes it along to the staffer in charge of such matters and eventually it gets to the Congress member when this bill comes up in committee. It happens because you made a simple call. Nice, eh?
Leave a comment and tell everyone what you did! Thanks.
April 27, 2016: By the way, I got home. The rain began just as I got in my car and started the trip. It was torrential downpours at times but I made it.
For the fourth or fifth year, I’m in DC to lobby Congress on behalf of Dialysis patients as a member and Patient Ambassador with DPC (Dialysis Patient Citizens). You can help by calling or emailing your Representative and Senators and tell them to support DPC and the Kidney Care Bill. Go to www.dialysispatients.org There is a link to an email there. Your support will help considerably when we go to speak with members of Congress.
Recently I heard Alex Sheen, the founder of “Because I Said I Would” speak about his program to make the world a better place. Well, I took that to heart and one suggestion is that we should write our promise on a card, take a photo of it, and post it to a social media site. So, here is my promise: I will post here at least once a month.
I often have ideas flash into my mind concerning things about which to post on DevonTexs.com and I write them down, enter them into my phone’s notepad, write them on a placemat, napkin, whatever. But all too often, I don’t execute on my good intentions. I have, for example, about 60 draft articles in this site! I put links in about anything I find in which I think my readers may interested. I have a plethora of emails to remind me of article ideas or things I just wanted to pass along to you. Now I need to follow through on those intentions.
So “Because I said I would”, I promise to post at least once a month on this blog. I’ve apologized in the past for not posting and I always have a good reason why I didn’t post something. But, I offer no apologies, just a promise. My life won’t interfere anymore for the few minutes it takes to post about my life on dialysis. That is primarily because so many people around the world find comfort, information, relief, etc on this site.
Frankly, I am shocked at the number of people from many countries around the world who come to this site. In just two weeks of April, 2016 alone, people from 40 countries read my postings! I’m blown away by that. The US, Canada, the UK, Ireland, I could expect but China, Malaysia, Kuwait, UAE, Zimbabwe? Wow!
Thank you, one and all. My goal of informing the dialysis community is in sight. So, I commit to posting here at least once a month and more often. How’s that? Thank you to Alex Sheen, too for the inspirational motivation. Watch the video on his website and see if you can join us in making the world a better place. For me, that means making dialysis easier and better.