Dialysis and Suriving Washington, DC


ronaldreagan-nationalairport-metroApril 26, 2016:

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.

We got a very warm reception from the Arkansas Senators and Representative for the Little Rock area. Senator Boozman was particularly gracious. But, all our visits went well including Senator Cornyn of Texas and Representative Marchant of Texas (my home district.

Pat on the back to Dialysis Patient Citizens (DPC) who planned and executed this event and especially to Kristy Lukaszewski who 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.

What can you do?  

  • You can use the DPC site and send your Congress member an email about the “Kidney Care Act”.
  • You can join DPC for free (patients and caregivers).
  • 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.

© 2016 DevonTexas

Posted in activism, Davita, dialysis, Dialysis Center, Dialysis Patient Citizens, DPC, ESRD, kidney, lobbying, Medicare, patient care, Patient-Centered Care, World Kidney Day | Tagged , , , , , , , , , , , , , | Leave a comment

In Washington DC


Washingtom DCFor 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.

Thank you for your help.

DevonTexa

Posted in CKD, dialysis, Dialysis Patient Citizens, DPC, kidney, lobbying, Medicare, politics, Uncategorized, World Kidney Day | Tagged , , , , , , , , | Leave a comment

Because I Said I Would


20160424_155913Recently 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.

 

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Dialysis and Weight Loss – Part Three


lapbandHere is the third and final post about my recent weight loss experience using bariatric surgery.

Of the selections available to me to assist with my weight loss objective, I chose the Lap-Band procedure.  The reason was very simple. My doctor told me that the Lap-Band is reversible. If there’s a problem the band can be removed and, by design, it can be increased or decreased in it’s constriction of the stomach.

From the previous post (Dialysis and Weight Loss Part Two), you can see the band forms a small pouch before the remaining stomach.  The result is that you should feel full before food gets to your “real” stomach.  The opening between the pouch and the stomach can be increased or decreased in size.

The other procedures are fairly permanent and affect you in different ways. Gastric Bypass is a very extensive procedure that bypasses the stomach altogether and cannot be reversed. However, it is effective for some patients and is a fairly common procedure.  The gastric sleeve is also irreversible and is easily circumvented by the patient simply eating too much, packing the stomach. and stretching it out.   I didn’t trust myself to not do this.  I needed a solution that would be adjustable and reversible.  So the lap band with its adjustability has helped me to pace my eating

To adjust the band, a technician injects saline (salt water) into the band or removes some as needed.  Only in the first week after the first injection did I have fluid removed.  It was too tight and I spent most of a day with something caught in my pouch that wouldn’t move. I had an adjustment to the band 3 times in the first year. Each time I had them inject fluid and increase the constriction of the band.  Finally on the anniversary of the procedure, I had a final injection of fluid.

Each time I added fluid, I went on a liquid-only diet for the first couple days, then a soft food diet for a couple days and, finally, back to regular food.  My only difficulty is that I often have hypotension (low blood pressure) problems especially after dialysis.  This effects how often I can go to the fitness center and follow the most effective course of action for weight reduction.  That is, Decrease Eating and Increase Activity.  If you are serious about weight loss, this is the course you need to take.  Eat well {healthy) in small amounts and get plenty of exercise.

The result of all this is that I’ve lost just short of 100 pounds since September 2014.  I know there are some who tout their extreme weight loss over a short period of time.  I don’t deny them their success.  I wish I could have done the same but as a dialysis patient, we must be careful with extreme weight loss.  It can have negative results.  I didn’t want to interfere with my dialysis and risk not losing this weight.

One thing the loss of 100 pounds has benefited is my access is much easier to stick.  It’s no longer buried under nearly an inch of fat.  Because it’s easier to stick, I no longer must endure three or four needles before the tech finds the fistula.  That’s especially nice when my regular tech isn’t there or when I travel.

It almost goes without saying that the weight loss has benefited my life generally.  I can move better and longer.  My stamina has increased for sure and it will get better as I exercise.  I actually bought a bike so I can feel the wind in what little is left of my hair!  There are several things I want to do as goals and rewards to myself.  In general, life is so much better and getting better every day.

One important thing to do before you take a radical course of action like bariatric surgery is to consult with your nephrologist, primary care doctor, and dietitian then work with them all along the way.  I spoke with them and followed their advice carefully. If available attend a support group for bariatric patients.  The advice of other patients is very valuable. Also, be realistic about your weight loss.  Don’t go too quickly.  Take it easy.  It took years to put on and it will take a while to get off.

Posted in dialysis, diet, dietary restictions, dry weight, exercise, kidney, Kidney Diet, weight reduction | Tagged , , , , , , , , | Leave a comment

Dialysis and Weight Loss – Part Two


Part Two

There are three options:  Lapband, the “sleeve”, and “gastric bypass”.  Each has its benefits and drawbacks.  How did I do it?   I had bariatric surgery for the Lapband.  The major plus for me and why I chose the Lapband is because it is reversible.   The others are not.   However,  I’ve spoken with fellow patients who have had the sleeve or bypass and they’re pleased with their choice and the results.  Whichever method, you need to discuss it with your doctors and investigate it carefully.

Lapband

lapband

The Lapband is a device inserted into your belly that wraps around the stomach and serves to constrict it, forming a smaller stomach pouch before the rest of the stomach.   When you eat something,  it goes into the first, smaller part of the stomach above the band.  The food will sit there for a while helping you feel full.   It can also cause you to throw up if you eat too much and too quickly.  The successful part is that you stop eating as much and you reduce your weight.

For a year (or more), you should return to have an “adjustment” to the band to either increase or decrease the amount of fluid in the band and thereby tighten or loosen the band.  After an adjustment, you drink some water and make sure everything is okay.

The downside is that some people don’t follow the schedule for “fills” or increases in the tightness of the band.  You should have adjustments for specific periods after the surgery.  If you don’t then there’s not much benefit and the weight comes back.  That’s my biggest fear.  I’ve worked too dang hard to reduce.  I don’t want it coming back!

The Gastric Sleeve

gastric sleeveThe sleeve procedure is when the surgeon staples part of your stomach closed and removes a major portion to make it smaller so you can’t and don’t eat as much. It reduces the stomach to about 25 percent of its original size.  A new “stomach” is created is the shape of a sleeve.  The pyloric valve, which is a normal outlet that controls the release of food from the stomach to the small intestine, continues to function normally.

The risks of Gastric Sleeve include:

  • Acid reflux
  • Chronic nausea and vomiting
  • Dilation or stretching of esophagus
  • Inability to eat certain foods
  • Problems with the normal stomach operation
  • Weight gain or failure to lose weight

The Gastric Bypass

Gastric BypassThe gastric bypass is the most serious option as it is a surgery that completely bypasses your stomach and a large part of your intestinal system.  The result is you can only digest foods that don’t need the digestive process the stomach performs.  from Wikipedia:

Gastric bypass surgery refers to a surgical procedure in which the stomach is divided into a small upper pouch and a much larger lower “remnant” pouch and then the small intestine is rearranged to connect to both. Surgeons have developed several different ways to reconnect the intestine, thus leading to several different gastric bypass (GBP) procedures. Any GBP leads to a marked reduction in the functional volume of the stomach, accompanied by an altered physiological and physical response to food.

As you can see in the image, the stomach and a large portion of the intestines are bypassed.  This procedure is very serious as it cannot be reversed (or no one has developed tha procedure yet).  However, in some cases a doctor may advise it and/or the patient requests it.

So, why is this important?  Why should obese people on dialysis reduce their weight?  There are several very good and reasonable purposes for weigh reduction in dialysis patients.  The first is because it eliminates the amount of fluid you can retain.  Less fat means less water retention.  When I was “fatter”, I could take off 6 kilos.  That’s a lot.   Now, I’m retaining about 3 kilos over a weekend and 1.5-2.0 kilos during the week.  That is a radical difference and means I’m stressing my body that much less.

Part Three is upcomming!

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Dialysis and Weight Loss – Part One


New Years AftermathOkay, it’s it a new year and time for the resolutions and followup.   Many of us will resolve to reduce our weight.   In September of 2014, I did.  As of 1 January 2016, I’m 92.5 pounds reduced (not lost because that implies I’ll fimd them again and I don’t want to ever find them again.)   My goal is to get rid of another 60 pounds for a total of 150 pounds and I  may go further.  I don’t know. One step at a time.

Suffice to say,  I was heavy!   I am five foot, six inches tall and I was 318 pounds.   That didn’t seem much until I finally looked at myself honestly and came to the realization that I was FAT!  I was OBESE.

Want to know what made me snap into reality and stop ignoring my situation?   I needed help with everything event putting on my shoes.  In fact,  I couldn’t see my feet.  I hadn’t seen them in a  few years!  I hated being so helpless.

Looking back, the weight gain was gradual.  I remember 15 years ago, about 1999, my weight was creeping up.  I was 170, then 190, then over 200 by the year 2000.  Somewhere between 2000 and 2014, I added another 115 or so pounds (if you can believe that).  Somewhere along the way,  I went past the three hundred pound point.  I honestly don’t know when.

Just as my CKD went from one to four, my weight increased because I had no energy to do anything.  My son who was living with me at the time thought I was lazy.  I wasn’t lazy.  I was working eight to ten hours a day, driving 90 minutes in heavy traffic to and from work, cooking dinner, and collapsing into bed only to do that five days a week.  Come the weekend, I slept and rested so I had the energy to repeat that same grueling process.  Frankly, I only had enough energy to eat.

Some weight gain may have been after I started dialysis because I recall my “dry weight” going from 129 kilos (283lbs) to a “wet weight” of 145 kilos (319lbs).  Frankly, I was in denial and I didn’t pay enough attention.  I just wanted to get hooked up and get out.  I was far too busy to think clearly about it.  However, during this time I did think about doing something because a friend at work subtly encouraged me.  At his suggestion, I looked into it but my insurance wouldn’t cover bariatric surgery in spite of the fact I needed it badly.  I even considered paying for it myself but I didn’t have the ten thousand dollars ($10,000)!  Also, at that time, in order to qualify for the surgery, you had to jump through more loops such as lose 40 pounds.  Dang!  If I could lose 40 pounds I wouldn’t need the surgery, right?

It took a while for me to recover some energy but instead of benefiting from that, I began cooking and… wait for it….  eating!  I believe I put on another 20 kilos.  However, I was eating more of a kidney-friendly diet, if that is a good enough reason.  By 2014, I was going in at 140 to 143 kilos and coming out at 137 or so kilos.  I was stressing my body with all the weight and the fluid weight. Another few years like that and I probably wouldn’t survive or I’d be in really bad shape.

Rather than face the reality of extreme weight I chose to start accommodating that “disability” and the eventuality that I would end up in a wheelchair because I wouldn’t be able to walk due to the fat.  (You can imagine the courage it took to face this reality.  It’s so much easier to just ignore it and make accommodations.)

not-the-endThis is the end of Part One.  I will complete this as a Two or Three Part series because I have much too write about WHY weight loss is important to me and may be to other dialysis patients. I’ll provide some information about the bariatric surgery options and I will also explain why I chose the one I did.  I’ll detail what I went through with my lapband,  There’s a lot to tell. So, if you have a weight issue or know someone with it, you’ll want to read the next parts.  I should have Part Two completed in the next few days.

©DevonTexas 2016

Posted in activism, CKD, cooking. cookbook, dialysis, diet, dry weight, ESRD, fluid control, Insurance, kidney, Kidney Diet, Kidney-friendly, Medicare, patient care, personal, recipes, Social Work, thankful, thoughts | Tagged , , , , , , , , , | 1 Comment

Dialysis and Happy New Year


It is January 1, 2016.  Happy New Year to all my readers and thank you for a fruitful 2015.  I’m so blessed to have you reading and benefitting from the DevonTexas blog.  When I began to post a few years back, it was my intention to write about my experiences so others could benefit from them.  And, that seems to be the case.

Now, I’m currently working on a serious, very self-exposing post that I promise will come out this week.  It must because it is somewhat of a New Year’s  resolution.   You’ll see what I mean when you read it.

Watch this space!  A post very close to my heart is coming soon!

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