Dialysis and Patient Responsibilies

Texas Map

From the ESRD Network of Texas (14), here is some information about Patient Responsibilities

Each month a new educational topic is available for Texas ESRD patients. May’s topic is “Learn About Patient’s Responsibilities“. These materials can be located on the Network 14 website by CLICKING HERE.  It is also available in Spanish by CLICKING HERE.  Please feel free to print these out and post them in your center or ask the staff member to do that.

As this is a frequently discussed topic by both patients and staff, it’s handy to have some idea of what Patient Responsibilities are in a dialysis center.  Perhaps the greatest responsibility is to Ask Questions!  You may not get the answer the first time, so ask again if you need to.

Your questions are important.  Don’t accept a flippant answer. When I was new, I asked why the machine was alarming.  I was told, “It’s you.”  That answer gave me no information at all!  Don’t accept an answer like that.  Ask again or ask another person.

Also, see my post “Dialysis and Hurricanes” if you like in an area affected by them, especially.  But, there may be something in there that prepares you for an emergency of another sort.  I posted “Dialysis and Disaster Planning 2013-2014” too


Posted in activism, CKD, dialysis, Home dialysis, kidney, New Patient, patient care, Patient Responsibilities, Patient-Centered Care | Tagged , , , , , , , , | Leave a comment

Dialysis and Emergencies

If it's not tornado season, it's hurricane season but it's always severe weather season!

If it’s not tornado season, it’s hurricane season but it’s always severe weather season!

Dialysis Patient Citizens (DPC) hosted a phone conference recently with Joan Thomas, the executive director of the Kidney Community Emergency Response Coalition (KCER).  This is especially important for patients within the Southeast, Tornado Alley, and the Gulf Coast areas.  Please take a moment to listen to this and see what you might do in the case of an emergency.  Make note of phone numbers but also be prepared in case the cell towers are down!  CLICK HERE for the recording

Hints, Suggestions, and Comments

Here in Texas, we’ve had a month of severe storms including tornadoes.  It’s been a strange year!  I keep a set of my dialysis machine settings in a waterproof pouch in a backpack at the end of my bed in case I have to move quickly.  Fortunately, I haven’t had to use this information in an emergency so I can’t speak from experience but if you have some hints and suggestions, please comment on this blog.  There’s nothing like the voice of experience!

Also, there is a some valuable information about what to do in tornado and hurricane emergencies at the ESRD Network 14 website.  Disaster Preparedness.

Very seriously, don’t wait for an emergency to happen before you think about disaster reaction.  It’s too late!  Dialysis patients are medically fragile.  Having to wait several days for treatment may kill you!

© 2015 DevonTexas


Posted in dialysis, disaster planning, ESRD, kidney, New Patient, patient care, preparedness, Social Work | Tagged , , , , , , , , , | 3 Comments

Dialysis and News – May 2015

RSN Newsletter 1The Renal Support Network has published it’s newsletter.  I thought you might like to take a look at it and sign up/register to get it in your email.  They are very patient-centered and their founder is a transplant/dialysis patient with a passion for getting information to the dialysis community (like me).   To access their newsletter CLICK HERE. 

Posted in dialysis, ESRD, kidney, New Patient, patient care, Transplant | Tagged , , , , | Leave a comment

Dialysis and Blog Talk Radio

Radio ListeningHere are some interesting spoken blogs on BlogTalk Radio from Dialysis Advocates…

This particular episode deals with How to Ask For What You Want as a dialysis patient.  John Rider, the guest speaker, has decades of experience in this matter.   You can listen to it by CLICKING HERE.

Dr Robert BearAlso, here’s a broadcast of a discussion with Dr. Robert Bear who’s been an advocate of Patient-Centered Care (PCC) for many years.  I’ve met him several times, listened to his presentations, and spoken with him about PCC. Dr. Bear is that ideal physician that you would love to have treating you.  This is a chance to hear about PCC and Patient Engagement from the expert and how it impacts on dialysis patients.  CLICK HERE to listen.

For other broadcasts about dialysis on Blog Talk Raio CLICK HERE

I hope you find this helpful.

DevonTexas 2015

Posted in dialysis, Dialysis Center, ESRD, kidney, lobbying, New Patient, patient care, Patient-Centered Care, politics, Social Work | Tagged , , , , , , , , , | Leave a comment

Dialysis and Football

brockingtonGreen Bay Packer’s Football Player Goes the Extra Yard to Live‏

The Renal Support Network has a new podcast that’s all about kidney issues.  I posted about it previously in “Dialysis and Kidney Talk

Today RSN has a great interview with a former football player,  John Brockington, who like many of us ended up in the ER needing help with his failing kidneys.   As RSN says:

“John Brockington was one of many men who ignored the warning signs of health issues until he ended up in Emergency. John played football at Ohio State and for the Green Bay Packers and was in top shape. He didn’t think his body could fail him. Diane Brockington stepped forward and was a match. Listen to their remarkable story, and how their journey led them to help others through the John Brockington Foundation.”  (Renal Support Network)

You can listen to the interview by CLICKING HERE.

Posted in Catheter, dialysis, ESRD, kidney, kidney donation, patient care, Transplant | Tagged , , , , , , , | Leave a comment

Dialysis and “Doc Fix”

Billy BillFinally, after SEVENTEEN years, Congress has passed the “doc fix” bill to fill a hole they created in 1997.

Read about it here… 

From the DPC website, here’s the impact on dialysis patients based on the House version of the bill:

We are pleased to report that no cuts to dialysis funding are currently included in the bill. This time around, the House chose not to offset the entire cost. However, the bill would require wealthy seniors to pay more for their Medicare outpatient and prescription drug coverage, and restrict Medigap plans from being used to cover the Part B deductibles (currently $147). These changes will only apply to future Medicare beneficiaries and will not affect current dialysis patients enrolled in Medicare. To read more, CLICK HERE

Posted in CMS, dialysis, Dialysis Center, Dialysis Patient Citizens, DPC, ESRD, kidney, lobbying, Medicare, politics, Social Work | Tagged , , , , , , , , | Leave a comment

Dialysis and Rebirth

rebirthI recently made some profound changes in my life.  I didn’t mention anything previously because I didn’t want to jinx it.  But, now that I am a bit down the road, I’m comfortable to write about it.

Confession time.  I’ve not played it close to the chest in this blog.  Good or bad, I have written about it because I want people to know about the dialysis experience.  You should get a lot of information from your treatment center but my experience is that they want to get you hooked up to the machine, go about their business, and get you off the machine.  The only time you interact with a staff member, generally, is when they are busy sticking you or taking you off.  The nurse may come around and check your heart, lungs, access but, again, there’s not a lot of chatting.  So, when you have a question, I expect you don’t get an answer.  That’s why I began this blog.  I’ll talk about anything — diarrhea, depression, conflicts, “the Center from Hell, etc.  I don’t hold anything back.  But this topic cuts to the quick.  It’s painful to write about and here goes.

When I began dialysis back in August 2008, I was about 125 kilos (275 lbs) in dry weight.  I’d go in on a Monday at well over 133.  I was drinking entirely too much fluid and I didn’t know much about a kidney-friendly diet.  In my last year with CKD-4, I gained about 40 lbs because the only activity, aside from going to work behind a desk, was eating.  In the first year or so of dialysis, I gradually got to the point where I was going in a kilo more every other month.  In a year that was 6 kilos.  I was working and maintaining a home with two young men.  I didn’t have time for much more than eating.  So gradually I gained until my dry weight was 143.  That is almost 315 pounds!

The Eureka! moment was when I couldn’t put on my own shoes and could barely get dressed without help.  Then, when I couldn’t wipe my butt thoroughly because I couldn’t reach it, I decided to go into a weight reduction program.  Over the years, I had tried all the “drink this”diets and about all the popular diet methods like the South Beach, Atkins, etc but now that I had full-blown ESRD, I had to be careful with anything like that.  I decided on the bariatric method, specifically LapBand.  Actually, I wanted to do that back in 2007-2008 but my insurance at the time wouldn’t cover it.  I even considered paying for myself.  It was supposed to be $9500 but because of my kidney failure, it would be $15,000 as it had to be done in the hospital instead of the outpatient surgical center.  Even at the higher price, it would have been worth it but then I got laid off.  So, I figured I’d wait until Medicare kicked in as my primary insurance after the first 3 years.  That was 2011.  (It took a few years before I reached my breaking point and got the courage to begin.) Over the summer of 2014, I worked on the pre-op requirements.

On September 22, 2014, I got the LapBand installed.  It has been about 7 months and I am at 119.2 kilos (262).  That’s over 52 pounds later!  I am half-way to my initial goal of 100 lbs.  But it’s not the LapBand alone that’s changed my life.  It controls how much I can eat and that’s helpful.  (It takes me about 30 minutes to eat a sandwich!)  But, I also go to the fitness center three days a week and walk for one-half to three-quarters of a mile on the treadmill, do some circuit machine workouts, and ride a reclining bike for a mile or two.  That is short of my ultimate goal but it’s steps in the right direction.

Here’s how this applies to dialysis.  Because I’ve lost this weight, my access is easier to stick.  I don’t have that centimeter of fat over the top of my fistual and, as I reduce my weight, that will only get better.  The best part is: You know those people who come into dialysis skipping and hopping?  Then they go out the same way? Well, I’m becoming one of them.  I didn’t expect that but it’s happening gradually. I have considerably more energy when I get through with dialysis. I rest for a bit when I get home but it’s almost more out of habit than need.  I recover more quickly now and that’s a blessing.  Probably because I’m not carrying an extra 50 pounds!

It’s all a real challenge and I’ll write about “Dialysis and LapBand” next so perhaps you can be helped by my experience with that!

DevonTexas 2015

Posted in bones, calcium, constipation, cooking. cookbook, dialysis, Dialysis Center, diarrhea, diet, dietary restictions, ESRD, exercise, kidney, layoff, personal, phosphorus, potassium, recipes | Tagged , , , , , | 4 Comments