Dialysis and “Extra Help” with Meds

Most experienced Social Workers know this and will get you set up with this program as soon as you go on Medicare. However, many don’t which means you need to find this yourself. I hope I saved you some hunting time.

After three years on private pay or commercial insurance, you must transition to Medicare. You can do so prior to that but the dialysis facilities won’t encourage the move because commercial insurance pays much more than than Medicare. In your self-interest, you might want to consider it for the benefit of the Extra Help program which will help considerably to make your medications much more affordable (if you qualify).

When I was at “The Center from Hell”, I was asked to sign a form wherein I “opted out” from Medicare. The facility wanted me to stay on private pay insurance so they would get paid more for my dialysis. The problem was my insurance had huge deductibles and co-pays leaving me paying several hundred dollars a month for dialysis and medications. It was the cost for medications that was the larger share on my monthly cost. I was bleeding money. When I left that center, the first thing the new Social Worker did was get me on Medicare and Extra Help. Finally I was able to afford my medications!

It works like this: Medicare Part D and, in some cases, Part B will pay 80 percent of your medications leaving you responsible for the remaining 20%. In some cases, that can mean several hundred dollar per month for which you are responsible. If you have living on a low income, even an extra hundred a month is too much. Extra Help contributes to pay the twenty percent not paid by Medicare.

(Even after a kidney transplant, I still use Extra Help because I turned 65 while on dialysis for nearly ten years. That’s REALLY helpful because my meds would be about $3000/month!)

So, if you qualify, Extra Help can allow you to save a considerable amount on medications.

Check it out… https://www.ssa.gov/benefits/medicare/prescriptionhelp/

That website also has some valuable information about other Medicare and Social Security programs. Start clickin’ them links! Enjoy.

I hope this was helpful.

(c)2021 DevonTexas All Rights Reserved.

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Dialysis and Blood Pressure

Hey Y’all! Long time. no post. My fault entirely.

Since my transplant in late 2017, I spent my time recovering and absolutely enjoying my new-found life, free of the restraints of dialysis. That doesn’t mean I’m not constantly thinking about you and the world of dialysis. That’s why I want to post about this article, titled “Major Update’ of BP Guidance for Kidney Disease, Treat to 120 mm Hg”

Go ahead and skim over it… I’ll wait…

So, first point, it is meant for CKD patients who are not on dialysis and that might make it seem irrelevant to a dialysis patient. However, the reason I want you aware of this change in BP guidelines is so you understand the importance of blood pressure and its relationship to kidney disease. This decision supports the position that lower BP in kidney patients is extremely important. Keep this in mind every time your blood pressure is measured. Pay attention to the numbers. Watch for the Systolic (top) number and how high it might be above 120, if it is.

BTW, the way I remember which number is which: Like a fraction, where the bottom number is the “denominator”, the bottom number is a blood pressure measure is “diastolic”. They both begin with “D”? Therefore the upper number is “systolic”. Yes, it’s crazy. Yes, it is bordering on silly. But, it works and helps me translate from medical terminology to something I understand. I told one friend about my method and the response was, “I really don’t remember anything about math or fractions!” I guess they’ll have to find something else to help them. I am plumb out of ideas. Needless to say, “Systolic = top number” and “Diastolic – bottom number”

The fundamental reason I bring up this article is to encourage you to advocate for yourself when your blood pressure is being taken. The discussion subtitled, “Take Blood Pressure Well” is essential for dialysis patients, too. For kidney patients, getting a good number is important because it effects your medical treatment for hypertension which is a leading cause of kidney failure and most kidney patients have elevated blood pressure. Taking a poor measure will effect what medications and strengths you are given. Too much or too little can harm your kidney health. Read that section over again with this in mind. Also, keep this in mind when someone puts the blood pressure cuff on you. If you aren’t ready, say so and make sure you are seated for the recommended five minutes before they take a measurement.

The other important point is the new “120” level for systolic pressure. You need to know this because it often takes time for the message to filter down within the professional community. The physician may still be holding onto the 130 level. Likewise the tech or nurse may not be aware of the new number. Like a speed limit, people tend to add a couple miles per hour. Twenty-five becomes thirty or thirty-five. Similarly, 130 becomes 135 or 140. This new number should be held to as closely as possible to avoid the upward “creep” to greater than 120.

As an aside, the lower (diastolic) number used to be 80 and high was considered 90. The new number is 60 with 80 being high.

So, keep a close watch on your BP outside of dialysis. During dialysis, make sure it is being carefully watched and responded to appropriately. Also, keep in mind your BP during dialysis can swing widely (usually downward) which is why it is constantly monitored. Outside dialysis, it is your responsibility to monitor your BP. Measure a couple times a day or more; upon waking, mid-day and evening before bed are usually recommended times. If it is staying above 120/60, speak with your doc about adjustment to your meds. If is ranges above 130/70 or 140/80 in multiple measures, two things, 1) measure more often and 2) seek medical advice.

Keep that BP under control!

Thanks for reading DevonTexas.com and sorry for not writing more often. Stay healthy!

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Dialysis and pre-Transplant

Here is a great resource for getting on the Transplant List and preparing for the transplant process.

This from the Renal Support Network and Lori Hartwell, the RSN founder who has been a hardcore supporter and educator of the Kidney community.

If you’re in dialysis and looking into the transplant opportunity or just want to educate yourself about it, give a listen.



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Dialysis and Medications

Hey y’all…

I came across this article from the National Kidney Foundation (NKF) and thought it might be helpful to those wondering about the effect of medications on your kidneys. Some can be harmful to your kidneys.

Caution, however. If your doctor has prescribed a medication that you find in this article, don’t discontinue it without consulting with the doctor. Just make sure you bring it up at the next visit. You can also raise it with your nephrologist if that’s not who prescribed it.

Here’s the article. Let me know what you think. https://www.kidney.org/atoz/content/drugs-your-kidneys

DevonTexas, copyright 2019







Posted in CKD, dialysis, ESRD, kidney, Kidney Diet, Kidney-friendly, Medications, National Kidney Foundation. NKF, New Patient, Transplant, Uncategorized | Tagged , , , , , , | 1 Comment

Getting away: not always easy!

This gallery contains 6 photos.

Originally posted on Big D and Me:
Over the last six months, we have managed to get out of town occasionally, for one or two days around dialysis. By around dialysis, I mean that leave for our mini holiday accommodation…

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Ya’ll gotta see this…

Here are two photos.  One, taken in 2013 when I was in a wheelchair being pushed around the US Capitol, obese, ready to get off the exit on the Highway of Life. The other is 2016, lost 100lbs, able to walk with a cane, again at the Capitol, taking back my life from the terrible place I let it go to.

Can you see a difference?

So, although i haven’t posted in a while, I have been busy.  More later.  Exciting stuff.


Devon in DC 1Devon

Posted in dialysis, disability, ESRD, exercise, kidney, thankful, Transplant, weight loss, weight reduction | Tagged , , , | 6 Comments

Dialysis and Kidney-friendly Snacks

Still an important issue for those who want an ocassional snack without the worry of the chemicals they contain.


bbq nutrition_1f1824e0-6eaf-11e5-9a62-afae4f70ace8

1/15/16 Update – I saw a post on FaceBook that offered a free sample (just pay shipping) from Vida-Fuel.  I would highly recommend you try these snacks! Go to their WebSite to see the offer

Hey everyone!  Sorry for the lack of new material for a while but it’s been a tough year and I just can’t seem to get to my desktop as often.  Sorry for that.  I’ve been working very hard to get this old body in shape, reducing my weight, and earning a few extra bucks with Uber driving.  More about all that later (and I have much to say).  Now it’s about snacking.

If you snack then make it a kidney-friendly snack.  Frankly, I rarely eat any snack foods as they all contain the two dreaded ingredients, Phosphorus and Potassium!  Yuck!  However, here are a couple items that may fill the need and be kidney…

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Community Run Dialysis – Inspirational!

Reblogged. Something to seriously consider even here in the US. We have sonething close. It’s called Dialyspa. Their idea is that the patients come first. Patients over Profits? I wrote anout them in “Dialysis and Dialyspa” in my blog at http://www.DevonTexas.com

Big D and Me

Over the last week, I’ve been working on a new project that involved making a list of all the dialysis units in Australia (more on that soon). In the process, I discovered that all units are either public (free via Medicare) or private (fee charging), except one, which is owned and run by dialysis patients and their families.

Run by patients and families? What the…?

Of course, I had to know more, so I contacted them and discovered firstly that they’ve been around a while and I’m a bit late to this party. But that made finding them even more heartwarming and inspiring.

This community run dialysis service follows a very different model. It is focussed not just on dialysis, but also on the community, on keeping people together. Imagine a place where family and community, culture and country are integral to a happy and fulfilling life. Where people live…

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Dialysis and Phosphorus, Again

I came across this posting from The National Kidney Foundation about controlling phosphorus and I have to share it.  I especially appreciate that they cover ways to read the ingredients label and include a list of items you CAN eat that are lower in phosphorus.

Also, I like that they make the point about natural versus added phosphorus.  Our bodies don’t absorb the as much of phosphorus that is naturally in the food like that in meat or plants. However, phosphorus that is added for whatever reason (usually as a preservative) is 100% absorbed and more quickly than naturally occurring phosphorus.

Phosphorus control is the bane of my existence.  Potassium I can avoid but phosphorus, I can’t seem to overcome. I know other dialysis patients have a problem with it. So take heart and read the article “How To Be A Phosphorus Detective” at the link below. Let me know if you find this helpful.


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#Dialysis and #Hope for #Kidney Patients – update

A few months ago, I posted the first part of this under the title, “Dialysis and Hope for #Kidney Patients” .  There are some promising developments and even more exciting things to come.  Here is an update…

I recently attended a conference hosted by the American Society of Nephrology which gathered nephrologists, researchers, professors, dialysis providers (Davita and Fresenius), hardware manufactures and engineers, and patients together for two solid days of discussion.  The coolest part about this were the breakout sessions during which we brainstormed about taking dialysis out of the box.  We discussed some other approaches that are currently in development such as the implanted artificial kidney, the wearable kidney, kidney regeneration, kidneys grown using stem cells, but we also opened up other methods to perform dialysis without needles.  Yes, all this very theoretical and “pie in the sky” at the moment but it shows some promise. At some point in the future, we won’t have to rely on traditional methods of dialysis.

One point made by a speaker was that twenty years ago we said, “Twenty years from now…” and it is twenty years from now. So, where are we? Unfortunately, nothing tangible is on the market.  The hope is that the next time we say, “Twenty years from now…”, we won’t be looking back on no significant developments in dialysis.

The more immediate future

I figure the track of development will be more progress on the wearable kidney while the research and development in some very promising areas continues,  There are some massive hurdles to leap between now and coming out with these.

The Kidney Project

The Implanted Kidney

The next layer of development is the implanted kidney.  There is some very promising work in this field.  From Nephrology News and Issues: “Implantable artificial kidney project making progress”.  This is a mechanical kidney that reproduces the function of a real kidney and is powered by the blood flow from the heart in a manner similar to the real kidneys. It uses nanotechnology microchips to mimic the filtering performed by the kidneys,  The chips determine the “good” from the “bad” and send the bad cells along with the excess fluid into the urinary system to be removed from the body.  The developer, William H. Fissell IV, MD, says he has, “a long list of dialysis patients eager to join a future human trial.  Pilot studies of the silicon filters could start in patients by the end of 2017.”  For more information about this, see “The Kidney Project”

Kidney Regeneration

Another approach to improve the lives of kidney patients is to revive kidneys damaged by disease, or regeneration.  Fortunately the kidney is an organ that responds well to regeneration. From Harvard University, here’s a posting titled, “The Kidney Repair Shop” (a cute title for some very serious work). In this case, they are using stem cells to cause the tubules which are responsible for filtering in the kidney to regenerate.

stem cells in kidney regeneration

As you can see from the picture above, this is no small task.  The stems cells from a neonatal source (such as the umbilical cord of a recently born child) are combined with cells from the patient’s kidney to cause the kidney to repair itself.  Cool, eh?  However, this method requires a huge amount of research into how the cells interact and complex experimentation to mimic this process in the kidney.

3-D Printing a Kidney

There is some really exciting work being done that prints a kidney using a slush of materials and a 3-D printer to create a functioning kidney that can be implanted into a patient.  From Gizmodo.com:

samples of human kidney cells are cultured in large volumes and blended with hydrogel, a water- and nutrition-rich material that makes up the 3D printed kidneys’ base. Afterwards, the printed cells can survive for up to four months in a lab thanks to this gel’s rich nutrient source.

You can read more about this in the article titled: “Scientists Can Now 3-D Print Transplantable, Living Kidneys”.

So, as you can see, there are very exciting developments going on in the kidney world.  I’m excited anyway.  In the meantime, I will continue my transplant efforts and hope that something miraculous comes along soon.  Perhaps not in my lifetime but in yours.

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