#Dialysis and Hope for #Kidney Patients

wearable kidneyUpdate 10/5/16:  Some disappointing news via Kidney Buzz about the “wearable kidney” and it being delayed by a lack of funding.  Read it here at Kidney Buzz. 

From the National Kidney Foundation’s Kidney Advocacy Committee program…

“There is some much going on in the kidney world. Out here in San Fransisco at UCSF Dr. Roy is in phase 2 of the artificial kidney, where no immunosuppressive drugs will be needed and no matching. This will be a game changer and clinical trails may start as soon as 2017/2018. You can follow their work on Facebook on “The Kidney Project” page. I spoke with Dr Roy and this work gives me such hope that we can reduce or remove the transplant wait list. We are not talking science fiction far off in to the future either. “

This is a HUGE step forward for us.

I found this link for the Kidney Project that may be a better description of the work Dr. Roy is doing.  It is fascinating.  Also, here is Dr. Roy’s profile and description of his academic works.

Meanwhile there is ongoing work nationwide on a kidney created using your cells and stem cells to “grow” a kidney for you exclusively.  Again, no anti-rejection drugs would be needed because it is “your” kidney.

SEE the other related post, “Dialysis and Hope for Kidney Patients – Update”


Posted in dialysis, ESRD, kidney, kidney research, thoughts | Tagged , , , , , , , , | 2 Comments

Dialysis and Cooking

downloadHey all!  I need to share this article about cooking for dialysis patients.  Read it carefully and I hope you find it as interesting as I do.  I’m inspired by the fact the study involved supports all the findings with facts.



From Renal and Urology News, “Cooking Methods May Help Dialysis Patient Control Phosphorus”  Please thank them for publishing this study.  dominic.barone@haymarketmedical.com


2016 DevonTexas

Posted in calcium, cooking. cookbook, diabetes, diet, dietary restictions, Kidney Diet, phosphorus, potassium, recipes, sodium | Tagged , , , , , , | Leave a comment

#Dialysis and Social Media

NKF !My friend, Jim Myers, was a guest of the National Kidney Foundation and their Advocacy in Action Blog on the topic: “Why We Need to Be Active on Social Media”.   He makes some very good points about the effective use of social media to advance several aspects of kidney disease.  You can read his post here.

By the way, sign up for the newsletters from the The National Kidney Fund.   There’s a sign-up box near the bottom of the screen, on the right.   Just below that you also can sign-up for various other newsletters or CLICK on THIS.

No group does more for kidney patients of all types (CKD, ESRD, Transplant, etc.) than the National Kidney Foundation.  Their annual walks raise money and, more importantly, raise awareness.  They also host annual informational meetings in several metropolitan areas in the spring and early summer months.

Visit the NKF website and take a look around.  Remember, the more informed you are, the better you are.  Dealing with kidney disease is not easy when you don’t understand what’s going on.

© 2016 DevonTexas

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Dialysis and Kidney Transplant II

Here’s a YUGE development in organ transplant!


From the National Kidney Foundation website…

“The White House annouced a new collaboration with Johns Hopkins University and Novartis to nationally launch the Live Donor Champion Program.  Developed by transplant surgeon Dr. Dorry Segev at Johns Hopkins University, the Live Donor Champion Program aims to overcome common barriers to finding a living kidney donor—a need for more education about living donation; and a reluctance to start a conversation about donation among transplant candidates.”

There are over one hundred thousand patients seeking new kidneys and four thousand died in 2015 while waiting for a new kidney.  Only 1 in 5 of those 100k waiting will receive a kidney.  Getting living persons to donate a kidney increases the number available for transplant and living kidneys are better for transplant, too!

Read the news release here through the National Kidney Foundation page… 

2016 DevonTexas

Posted in activism, ESRD, kidney, kidney donation, lobbying, National Kidney Foundation. NKF, Transplant | Tagged , , , , , , , | 1 Comment

Dialysis and Kidney Transplant

Transplant illustration

The transplanted kidney is placed in the lower abdomen and connected to the urinary tract and the various blood vessels nearby. The original kidneys are not removed in this process unless they pose a health risk.

Okay ya’ll.  I’m going for the transplant.

I signed up for the Transplant list with Harris Hospital in Fort Worth, Texas.  So, if you readers with two kidneys happen to be there….  LOL

I’ll keep you informed as I venture along with highway.

Here’s what’s transpired so far.  A few weeks back, as my nephrologist made his rounds in the dialysis center, he said, “Devon, you should get on the Transplant List”.  I responded with the obligatory, “Yeah, I should do that.”  Then a couple days later, I went to the vascular surgeon to have my periodic visit regarding my fistula (I like to have him check it a couple times a year because it’s my lifeline!) and he said likewise, “Devon, you should get on the transplant list.”  So, I said to myself, “Devon, you should get on the transplant list!”  I resolved right then and there to get on the list.

Since my dialysis center is on the way home from the vascular surgeon’s office, I stopped there and got the applications for three different transplant centers.  I filled each out as best I could then carried them home and completed them all that same day.  I placed each one in a separate envelope with the checklist of information each required and the name of the center on the outside.  The next day I took the envelopes to my nephrologist’s office and for his contribution and sign-off.  A week or so later, I began to get calls from the centers to acknowledge they had received them.

Then, last week (Tuesday), I got a call from the Harris Transplant center and the nice lady said I could attend a one hour orientation class on the following Thursday.  Since I had the time open, I jumped on it.  The hard part was finding the danged building in the mass of buildings that make up the hospital complex in Fort Worth.  (Cities always look so much bigger when you’re lost in them. Even my GPS said, “You’re on your own!”) Finally, I found the parking garage and, eventually, the classroom.

We got more forms to fill out, of course, and watched an interesting video about all the issues associated with Transplant. A question and answer session followed.  One important reminder was that a transplant is NOT a cure.  It is simply another modality (or treatment type).  It requires a lot of discipline to make sure you visit the center frequently for check ups, especially in the weeks following the transplant and that you take all the medications no matter how they might effect your body.  Also, you have to wear a mask whenever you’re in public while you rebuild your immune system as the anti-rejection drugs make you susceptible to germs. I plan to wear a Mardi Gra mask. (LOL Actually I may do that for my first visit after the surgery.)  She also described the team that will be working with us in the time before, during, and after the transplant from surgeon, to nurses, to social workers, dietitians, etc.

One advantage of this modality is I won’t have to avoid foods that contain lots of potassium and phosphorus any more.  In fact, I may be encouraged to eat more!  Yay!  Also, I will HAVE to drink lots of fluids, especially in the days following the surgery.  The nurse leading the class mentioned we’ll have to have a “Foley Catheter” inserted.  She said it like she was having one inserted herself.  It’s an unpleasant experience because it contains a bulb that is inflated after it’s inserted so it will remain in the bladder until the bulb is deflated and the catheter is removed.  The bladder muscle doesn’t like that intrusion but, they need to carefully measure the amounts of fluid intake and output to assure the kidney is working properly.

By the way, you don’t have to wait for complete kidney failure (ESRD) to begin a transplant process.  You can begin any time after your kidney failure is diagnosed (CKD). In fact, I was told I could get on the list back in 2004, or so.  Since I was in an advanced state of denial at the time, I just let things go along while I progressed from CKD (Chronic Kidney Disease) to ESRD (End Stage Renal Disease or kidney failure).  Perhaps I should have then, but I didn’t and that’s way in the past.

Thanks to a recent change in the Kidney Allocation process, I will get credit for the years I’ve spent on dialysis already.  Previously, the rules said the waiting clock began when you got on the list but now I’ll get credit all the way back to August 2008 when I started dialysis.  I know that seems unfair to some patients but it encourages patients like me to get on the list and get a transplant.  Also, because I will be on Medicare due to my age, I don’t have to worry about Medicare Part D paying for the drugs I’ll need following the transplant. They can cost several thousand dollars per month.  Currently if you are on Medicare due to dialysis (ESRD) and under 65, you will get kicked out of Medicare after three years.  There are efforts in Congress to change this but that’s the rule for now. Keep it in mind if you are considering a transplant.  See my blog about this from a few years back.

Ignoring the time spent finding the building and a parking space and deducting the time spent filling out forms, I’m one hour into this adventure.  More to come…

Thanks for reading.

© 2016 DevonTexas

Posted in A/V Fistula, Access, dialysis, Dialysis Center, Discharge Planning, ESRD, kidney, Medicare, Modalities, Modality, New Patient, Patient Responsibilities, planning, thankful, thoughts, Transplant | Tagged , , , , , , , , , , | 2 Comments

Dialysis and Cramping updated

crampsCramping isn’t good!  CRAMPING IS BAD!

(update 6/26/16: See the comments for more thoughts about cramping)

Aside from the fact that it is excruciatingly painful, it is an indication that something is wrong during dialysis.  Too much fluid is being removed or fluid is being removed too quickly.  I’ve had my leg cramp so hard I thought it was going to break a bone and brought me to tears.

You get cramps when the muscles don’t have enough fluid for their proper operation.  Some people get cramps in major muscles like their legs or in muscles furthest away from their heart, like feet.  I even had cramps in my hands that caused me too look like I’m awkwardly signing “Live long and Prosper” to Captain Kirk.  All kidding aside, it is very painful and feels like torture.  I’ve seen many patients brought to screaming from the pain.  And, it is an indication something is amiss in dialysis.

If you are cramping often, talk with the technician about the rate of flow and the amount of fluid being removed.  If they don’t seem to have an understanding of the problem and offer some relief, talk with the nurse.  Then, if you aren’t getting a reasonable response, speak with the doctor.  Perhaps your “dry weight”  (your weight after dialysis) needs to be increased because you’re taking off too much fluid or you’re taking it off too quickly.  Perhaps you need to explore adding an additional session that week so you don’t have to remove too much fluid in just three sessions and a fourth will help.  My center will sometimes have a chair available on Saturday and I come in for a fourth session.  I have had to do it during the holidays when eating and drinking too much is often my failing.  Ask and discuss it with the nurse.  Some centers don’t have that opportunity though because they are at capacity.  But at least explore the option.  However, with some work on your part it shouldn’t be necessary.

Make sure you are part of the fluid removal calculation.  When you come into dialysis, you weigh in.  The amount of fluid to be removed is your weight before dialysis minus your dry weight.  Too often the tech just does a quick calculation and doesn’t review it with you but enters that information into the machine and off you go. Some patients don’t know how much is being taken off.  Don’t let that happen. Engage.  Ask the tech how much is being taken off.   Check their math, so to speak.  Be observant and discover your limit.  My tech, Bobby, pointed out that I can only tolerate a maximum fluid removal of 5.5 liters. If I exceed 5.5, I’ll start cramping.  For example, if I am six liters over my dry weight,  he told me to just do 5.5 or less and be careful with my fluid before the next treatment and take off the rest in the next treatment. Don’t exceed 5.5 liters in the four hour treatment.  Great advice.  (See my blog about Fluid Control . You have to limit your fluid intake between sessions for your own good!

If the cramping comes before the last hour and your dry weight is correct, it may be the rate of flow. Too much fluid is being removed from the blood too quickly.  Again, speak with the tech, nurse, or doctor about reducing the flow rate or, another option, extending the treatment time. As much as I dislike sitting in that chair for any longer than necessary, adding another fifteen to thirty minutes could mean less fluid has to be removed as quickly and you benefit by avoiding cramping.

If cramping occurs, one method of immediate relief is to add saline to your blood increasing the volume of fluid in your blood.  This really isn’t doing you much good.  You should be removing fluid, not adding it. Also, saline adds salt (sodium) and makes you thirsty for more fluid!  It’s counter-productive.  Another method is to have the tech stop the fluid removal for a few minutes (perhaps 10 of 15 minutes).   Your blood continues to be cleaned but no fluid is being removed.  This is a better option.   Engage the tech when you start feeling cramps coming on.  Learn to sense when they are beginning and take immediate action to avoid them.

Again, cramping is not good.  It’s an indication something is wrong.  Some centers and technicians don’t understand this.  They act as if it’s just part of the treatment “experience”.  No it isn’t!  It should never (or rarely) be happening.  I went through a couple years of frequent cramping at such a center.   Where I am now, they don’t allow cramping and do whatever they can to make it nonexistent.  The dialysis goes better and I don’t have to endure any pain.  I do my best to manage my fluid and they do their best to help me avoid cramping.

(In another posting, I will discuss Blood Pressure and Dialysis.  As fluid is removed or is removed too quickly, your blood pressure will drop.  This is more likely than cramping for me!  But that’s for another blog.)

If you have some experience and can offer some advice, please feel free to comment.

Posted in cramping, cramps, dialysis, dry weight, ESRD, fluid control | Tagged , , , , | 11 Comments

American Kidney Fund – Blog: 5 things you should know if you want a kidney transplant

5 things you should know if you want a kidney transplant

Source: American Kidney Fund – Blog: 5 things you should know if you want a kidney transplant

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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