Double Whammy

Just as the flu was walking out the door, sinusitis walked in. No fair! Although, I must be feeling better because I’m starting to open all the doors and windows again.

I live in Arizona. We don’t have an actual winter, but we do have a flu season with all its accompanying ailments. Having a compromised immune system is not exactly a first choice, but I have Chronic Kidney Disease.

I know I need to slow down with this explanation. Good thinking. First off, what is the immune system? I went to NCBI, The National Center for Biotechnology Information at https://www.ncbi.nlm.nih.gov/books/NBK279364/ for an answer.

“The immune system (from the Latin word immunis, meaning: “free” or “untouched”) protects the body like a guardian from harmful influences from the environment and is essential for survival. It is made up of different organs, cells and proteins and aside from the nervous system, it is the most complex system that the human body has.

As long as our body’s system of defense is running smoothly, we do not notice the immune system. And yet, different groups of cells work together and form alliances against just about any pathogen (germ). But illness can occur if the performance of the immune system is compromised, if the pathogen is especially aggressive, or sometimes also if the body is confronted with a pathogen it has not come into contact before.”

Notice the word “compromised” in the last sentence. According to Dictionary.com at https://www.dictionary.com/browse/compromised, that means

“unable to function optimally, especially with regard to immune response, owing to underlying disease, harmful environmental exposure, or the side effects of a course of treatment.”

So when you have a compromised immune system, you are not receiving the full protection against germs that you could be receiving. Well, how does CKD affect the immune system?

My GFR (the numbers above the arc in the photo to the left and defined later in this blog) is usually between 49% and 59%. That means at any given time I’m missing quite a bit of the function normal kidneys would have. In other words, my kidneys are working more than twice as hard as those of someone without kidney disease. This is a fact that’s easy to forget now that I have the renal diet down pat … until I get sick… and it takes me longer to recuperate… or I slide right into another illness.

Let’s take a look at the jobs performed by the kidneys to see exactly why. This is what I wrote in SlowItDownCKD 2014:

“Your kidneys filter toxins and waste products from your blood.  They also regulate electrolyte levels and blood pressure and produce hormones, among their many jobs.”

Let’s say I eat some bad food. It would take me more than twice as long to recover and I could be more than twice as sick since my kidneys are compromised. Or maybe I actually took one of Bear’s medications instead of my own (which will never happen since they’re kept far, far from mine. This is just an example.) Same thing. I only have less than half the ability to remove a toxin from my body as someone with normal kidney function does. As for germs? You guessed it. My compromised immune system leaves me open to far more than I would be if I didn’t have CKD.

Now for sinusitius. I had that one covered in SlowItDownCKD 2013:

“The Mayo Clinic at https://www.mayoclinic.org/diseases-conditions/acute-sinusitis/symptoms-causes/syc-20351671 has this to say about acute sinusitis:

‘Acute sinusitis (acute rhinosinusitis) causes the cavities around your nasal passages (sinuses) to become inflamed and swollen. This interferes with drainage and causes mucus to build up.

With acute sinusitis, it may be difficult to breathe through your nose. The area around your eyes and face may feel swollen, and you may have throbbing facial pain or a headache.’

Before we get any more detailed here, a few reminders are in order {taken from What Is It and How Did I Get It? Early Stage Chronic Kidney Disease’s Glossary}.

Acute – Extremely painful, severe or serious, quick onset, of short duration; the opposite of chronic.

Antibiotic – Medication used to treat infection.

Chronic – Long term, the opposite of acute.

GFR  – Glomerular filtration rate [if there is a lower case “e” before the term, it means estimated glomerular filtration rate] which determines both the stage of kidney disease and how well
the kidneys are functioning.”

Keeping it plain and simple, that just about covers my double whammy of sliding from the flu into sinusitis.

For those interested in KidneyX, this may be for you:

KidneyX: #RedesignDialysis Twitter Chat
The KidneyX: Redesign Dialysis prize challenge has a total prize purse of $2,625,000 and aims to accelerate the development and commercialization of next-generation dialysis products. Now through February 28, 2019, the KidneyX Redesign Dialysis competition will be accepting proposals for solutions or components of solutions that offer patients significant alternatives to dialysis as it is generally practiced today.
Innovators that are interested in applying for KidneyX: Redesign Dialysis are encouraged to participate in Twitter chat on January 24, 2019 from 1:00pm – 2:00pm EST.
Representatives from the U.S. Department of Health and Human Services and American Society of Nephrology will be available during the chat to answer your questions and provide more information about KidneyX, the Redesign Dialysis competition, and innovation in kidney care.. To participate and follow the chat, use the #RedesignDialysis hashtag.

For those of you who are caretakers for people with CKD, this may interest you:

Please join us on Wednesday, January 23 at 1 p.m. ET for an educational webinar titled: Taking Care of Yourself While Taking Care of Your Loved Ones – Coping Strategies for Kidney Patient Caregivers!
As a caregiver for a loved one with kidney disease, it is important to remember to take time for yourself. Hear from social worker Renee Bova-Collis, MSW, LCSW, and caregivers Brenda Vasser-Taylor and Ashley Martin … as they share coping strategies to help you take care of yourself so that you can support your loved ones.

 

Click here to Register!

 

After registering, you will receive a confirmation email with information on how to join the webinar. To call-in without connecting to a computer, use this #:

United States: +1 (562) 247-8422

You will be asked to enter the following Access Code: 399-056-972#

Audio PIN: Shown after joining the webinar

Until next week,

Keep living your life!

So That’s How It’s Done

Readers have asked me repeatedly how foundations to raise awareness of kidney disease are started. You know my story: I developed Chronic Kidney Disease, didn’t understand what my nephrologist was saying so researched the disease, then decided to share my research with others who needs plain talk or reader friendly explanations. Hello, books, the blog, Facebook, Instagram, Twitter, Pinterest, Google Plus, LinkedIn, and my website. But I’m not a foundation; I’m just me doing what I can.

Back to the original question: How do foundations begin? Let’s keep in mind that we’re not talking about the biggies like the National Kidney Foundation here.

Well, remember the AAKP Conference back in June that I keep referring to? You meet a lot of people there. One fellow I met is Scott Burton who started his own kidney awareness foundation. I put the question to him. Ready? Here’s his answer.

How do you sum up 36 years of a constant back and forth struggle? Of a lifetime searching for a reason as hope fades a little more each day? How do you not get sick on this roller coaster called life? Simple answer, you don’t have a choice, so you push forward and try to find some positive in the negative, some hope in the hopeless and, ultimately, just try to live each day a little better than the last and make a positive impact. See, this isn’t a story with a fairytale happy ending, but most stories worth reading (or watching), don’t have fairytale endings; rather, they are stories that are relatable and sometimes left open ended.

This isn’t a guest blog about me or my battle, but rather one introducing the positive that has come from the negatives. That positive comes in the form of The Forever is Tomorrow Foundation which pulls from my background in marketing and video production. It just made sense to try to raise awareness and shed some light on kidney disease in the best way I know how: with real people telling real stories about real experiences in a casual and comfortable format.

That began the journey to today, a journey that began on March 3rd, 2016, when The Forever is Tomorrow Foundation was officially launched. The foundation is committed to raising awareness and shedding light on kidney disease through the creation of video content distributed via the web and social media. With many hopes and plans for the future, we are pushing forward as time and funds are available to create new content and keep things moving.

What I envisioned when setting out and establishing The Forever is Tomorrow Foundation was a resource of media content to both shed light on kidney disease to the general public  – which usually doesn’t give their kidneys a second thought – as well as creating a place for patients to find a little bit of comfort with their own battles. By telling patients’ stories, highlighting struggles and accomplishments, and also highlighting research in the field, we can create a place of inspiration and hope. While we have several video series at various stages of development in the works, our primary focus right now is ramping up our mini-documentary web series as funding allows.

We launched with two Public Service Announcements that went live in May of 2016. These two were centered around the National Kidney Foundation’s statistic, “13 people die every day waiting for a kidney transplant,” with a combined viewership of just over 30,000 views on Facebook & YouTube.

In March of 2017, we launched the first episode of “This is Kidney Disease… This is Life,” which is a web mini-documentary series of patients telling their stories in their own words. To date, four episodes of “This is Kidney Disease… This is Life” have been posted online, with just under 50,000 views spread across Facebook and YouTube.

In the coming months, we will also be releasing the first three episodes of a companion to the patient series, telling living donor stories with more episodes of “This is Kidney Disease… This is Life” to follow later this year. Additionally, we released the first video of what will grow to a regular series highlighting research focused on University of California, San Francisco, & The Kidney Project.

That’s the basic plan and history of The Forever is Tomorrow Foundation, with lots of projects in the works and plans to continue to grow. Everything comes down to funding and continuing to grow our network. We are constantly looking for new patients to highlight in our videos, and building a database of contact info for future episodes. To view our videos and learn more about the organization, follow us on Facebook (www.facebook.com/foreveristomorrowfoundation) & subscribe on YouTube (www.youtube.com/c/TheForeverisTomorrowFoundation).

Thank you, Scott, for explaining the inside workings of starting a foundation to raise awareness for kidney disease. Here’s hoping we get a bunch of readers commenting to tell us they borrowed from your structure to begin such foundations of their own and/or are interested in sharing their stories with  you. Note: The Facebook page has some of the most interesting information on kidney innovations that I’ve read about. Take a look for yourself.

On another note, KidneyX is looking for our input. This is from the email they sent me:

“We seek your feedback on how the KidneyX project can best spur innovation in preventing, diagnosing, and/or treating kidney diseases. While we encourage all relevant comments, we are interested particularly in responses to the following questions. You may respond to some or all of the questions:

  1. What unmet needs – including those related to product development—should KidneyX prize competitions focus on? If you have ideas for more than one topic area/issue, how would you rank them in order of importance? If you are a person living with a kidney disease, what makes these topic areas for product development important?
  2. What assistance or services might HHS and ASN offer to KidneyX prize winners that would encourage the greatest participation from a broad range of innovators?
  3. In what ways might HHS and ASN, through KidneyX, effectively encourage collaboration or cooperation between participants/prize winners while respecting their intellectual property rights?
  4. Particularly for those interested in participating in a KidneyX prize competition but unfamiliar with kidney functions and diseases, what information would you find it most useful for HHS and ASN to share publicly?”

You can submit your comments using the title “KidneyX Project Comment” by their September 14 deadline at:

E-Mail: please send responses to KidneyX@hhs.gov.

Mail: please send mail to
KidneyX c/o Ross Bowling
200 Independence Avenue SW, Room 624D
Washington, D.C., 20201

You don’t need to be a kidney patient to respond; you can also be an innovator.

This is, without a doubt, the most businessish (Love the writer’s license to initiate new words, don’t you?) blog I have posted to date. I hope it was both helpful and interesting to you.

Until next week,

Keep living your life!

Let Your Voice Be Heard

Someone on a Facebook Chronic Kidney Disease Support Group Page asked how we can make others more aware of what CKD patients want. I’ve been tweeting (exchanging remarks on Twitter) with those who could answer this question just recently. How perfect was that?

The first thing the American Society of Nephrology requested is that those of you who are familiar with Twitter, or are willing to become familiar with this social media, join the monthly #AskASN twitter chats. To join Twitter you simply go to Twitter.com and sign yourself up, no special expertise necessary. That pound sign, or as it’s commonly known now – hashtag, before the words signify that this is a person or group with a Twitter account. What comes after the hashtag is your handle, the name you choose for yourself. Mine is – naturally – #SlowItDownCKD. You can search for me on Twitter.

#AskASN is one of the hashtags of the American Society of Nephrology, the ASN which you’ve often seen me quote. Yes, they are respected. Yes, they are doctors. And, yes, they do want to know what we as kidney disease patients want them to know about our lives as their patients. Big hint: their next Twitter Chat will be in late July.

This year’s May 28th blog was about KidneyX, the same topic as June’s Twitter Chat. Here’s a little reminder of what KidneyX stands for:

“Principles

  • Patient-Centered Ensure all product development is patient-centered
  • Urgent Create a sense of urgency to meet the needs of people with kidney diseases
  • Achievable Ground in scientifically-driven technology development
  • Catalytic Reduce regulatory and financial risks to catalyze investment in kidney space
  • Collaborative Foster multidisciplinary collaboration including innovators throughout science and technology, the business community, patients, care partners, and other stakeholders
  • Additive Address barriers to innovation public/private sectors do not otherwise
  • Sustainable Invest in a diverse portfolio to balance risk and sustain KidneyX”

Did you notice that first principle: patient-centered? Or the fifth one: collaborative? We are included in that; we’re the patients.

IDEA Lab is one of the U.S. Department of Health and Human Services’ partners. This is how they define themselves:

“We test and validate solutions to solve challenging problems in the delivery of health and human services.”

And this is what they had to say during the KidneyX Twitter Chat:

HHS IDEA Lab‏Verified account @HHSIDEALabJun 19

Absolutely. Patients are innovators and we need to recognize that #askASN#KidneyX

Patients. They want to hear from us, patients.

Before reproducing a small part of the @AskASN KidneyX Twitter Chat, I want to introduce the players.

Kevin J. Fowler (@gratefull080504) is a patient who has had a preemptive kidney transplant and is highly involved in the patient voice being heard.

Tejas Patel (@GenNextMD) is a nephrologist with a large social media presence who advocates “for halting the progression of ckd so no dialysis or transplant [is necessary].”

James Myers (@kidneystories) is a fairly recent transplant with a strong advocacy for transplant patients.

I’m me; you already know me.

Now, the excerpt:

Thank you @GenNextMD Me too! #AskASNhttps://twitter.com/GenNextMD/status/1009245134964318209 …

Kevin J. Fowler added,

  • Tejas Patel @GenNextMD

Replying to @kidneystories

I am advocating for halting the progression of ckd so no dialysis or transplant #askasn #moonshot

Replying to @gratefull080504@GenNextMD

@GenNextMD That’s what those of us pre-dialysis want, too. The question is how do we do that? As a lay person, I’m at a loss here.

Replying to @Slowitdownckd@gratefull080504

Major undertaking by medical community, organizations (ASN, AAKP, NKF, RPA) and implementation of breakthrough therapies keeping patient central. Engaging all stakeholders will help prioritize what works for patients. Dialogue via formal & social media helps us understand better.

Replying to @GenNextMD@Slowitdownckd@gratefull080504

We recently had patient editorial in @CJASN by @gratefull080504 and interview https://www.kidneynews.org/kidney-news/features/patient-engagement … Lot of work needs to be done

I read the article. I think you should, too. Kevin makes the point that patient voices need to be heard and the nephrologist who was interviewed with him, Dr. Eleanor D. Lederer, agrees.

From reading my blog alone, you’re already familiar with the oft quoted American Society of Nephrology (ASN), American Association of Kidney Patients (AAKP) which was the subject of June 25th blog, and the National Kidney Foundation (NKF), a staple in the blog. But what is the RPA?

Let’s find out. It turns out that this is the Renal Physicians Association. Their website is at https://www.renalmd.org/. If you go there, you’ll notice four different choices. One of them is Advocacy. That’s the one I clicked. Keep in mind that this site is for physicians.

Become An Advocate for Excellence in Nephrology Practice

It is not only your right but also your obligation to let elected officials and policy makers know how you feel about important issues. It is your responsibility to speak out on matters that affect you directly or no one else will. RPA has developed pathways to allow you to do this.

Recognizing that nephrologists and their practice teams have limited time, an easy way to get involved in federal advocacy is by joining the RPA Political Action Committee (PAC) and Nephrology Coverage Advocacy Program (NCAP).

Take Action Nationally!

RPA’s Legislative Action Center (LAC) facilitates the important communication between RPA members and their members of Congress as well as representatives in their state legislatures. The LAC allows RPA members to track the progress of and search for all current legislation being considered by Congress.”

Our doctors are being asked to speak with the government on our behalf. But how will they know what we want or need, you ask. Easy enough: you tell them when you see them. You have regular appointments; that’s when you can talk with them about legislation you feel is necessary.

I never knew how much my opinion is wanted. I never knew how much YOUR opinion is wanted. Now we all know, so how about speaking out, raising your voice, and advocating for yourself. It’s not that scary if you start by just speaking with your doctor.  Although, I’ll be looking for you on ASN’s #askASN Twitter Chat in late July.

Until next week,

Keep living your life!

Last Week, The Country… This Week, The World

Last week, I wrote about a U.S. clinical trial program, AllofUs Research Program. This week we’re going global. Huh? What’s that, you ask. It’s KidneyX.

I can just feel you rolling your eyes. (Ask my children if you don’t think I can do that.)  Hold on a minute and I’ll let KidneyX explain what they are from their website at http://www.kidneyx.org.

“The Kidney Innovation Accelerator (KidneyX) is a public-private partnership to accelerate innovation in the prevention, diagnosis, and treatment of kidney diseases. KidneyX seeks to improve the lives of the 850 million people worldwide currently affected by kidney diseases by accelerating the development of drugs, devices, biologics and other therapies across the spectrum of kidney care including:

Prevention

Diagnostics

Treatment”

I know, I know. Now you want to know why you should be getting excited about this program you don’t know much about. Let’s put it this way. There hasn’t been all that much change in the treatment of kidney disease since it was recognized. When was that? This question was answered in SlowItDownCKD 2015:

“…nephrologist Veeraish Chauhan from his ‘A Brief History of the Field of Nephrology’ in which he emphasizes how young the field of modern nephrology is.

‘Dr. Smith was an American physician and physiologist who was almost singlehandedly responsible for our current understanding of how the kidneys work. He dominated the field of twentieth century Nephrology so much that it is called the “Smithian Era of Renal Physiology“ .He wrote the veritable modern Bible of Nephrology titled, The Kidney: Structure and Function in Health and Disease. This was only in 1951.”

1951?????? It looks like I’m older than the history of kidney disease treatment is. Of course, there were earlier attempts by other people (Let’s not forget Dr. Bright who discovered kidney disease in the early 1800s.) But treatment?

Hmmm, how did Dr. Smith treat kidney disease I wondered as I started writing about KidneyX.

Clinics in Mother and Child Health was helpful here. I turned to their “A Short History of Nephrology Up to the 20th Century” at https://www.omicsonline.org/open-access/a-short-historic-view-of-nephrology-upto-the-20th-century-2090-7214-1000195.php? and found this information:

“His NYU time has been called the Smithian Era of renal physiology for his monumental research clarifying glomerular filtration, tubular absorption, and secretion of solutes in renal physiology …. His work established the concept that the kidney worked according to principles of physiology both as a filter and also as a secretory organ. Twenty-first century clinical nephrology stems from his work and teaching on the awareness of normal and abnormal functioning of the kidney.”

I see, so first the physiology and function of the kidney had to be understood before the disease could be treated.

 

I thought I remembered sodium intake as part of the plan to treat CKD way before the Smithian Era. I was wrong. This is also from SlowItDownCKD 2015:

“With all our outcry about following a low sodium diet, it was a bit shocking to realize that when this was first suggested as a way to avoid edema in 1949, it was practically dismissed. It wasn’t until the 1970s that the importance of a low sodium diet in Chronic Kidney Disease was acknowledged.”

Aha! So one of our dietary restrictions wasn’t accepted until the 1970s. I was already teaching high school English by then. Things did seem to be moving slowly when it came to Chronic Kidney Disease treatment.

Let’s see if I can find something more recent. This, from the National Kidney Fund at https://www.kidney.org/professionals/guidelines/guidelines_commentaries sounds promising, but notice that this has only been around since 1997. That’s only 21 years ago. It has been updated several times, but there doesn’t seem to be that much difference… or maybe I just didn’t understand the differences.

“The National Kidney Foundation Kidney Disease Outcomes Quality Initiative (NKF KDOQI)™ has provided evidence-based clinical practice guidelines for all stages of chronic kidney disease (CKD) and related complications since 1997…. KDOQI also convenes a small work group of U.S. based experts to review relevant international guidelines and write commentary to help the U.S. audience better understand applicability in their local clinical environment.

Clinical Practice Guidelines are documents that present evidence-based recommendations to aid clinicians in the treatment of particular diseases or groups of patients. They are not intended to be mandates but tools to help physicians, patients, and caregivers make treatment decisions that are right for the individual. With all guidelines, clinicians should be aware that circumstances may appear that require straying from the published recommendations.”

Time to get back to KidneyX before I run out of room in today’s blog. Here’s more that will explain their purpose:

“Principles

  • Patient-Centered Ensure all product development is patient-centered
  • Urgent Create a sense of urgency to meet the needs of people with kidney diseases
  • Achievable Ground in scientifically-driven technology development
  • Catalytic Reduce regulatory and financial risks to catalyze investment in kidney space
  • Collaborative Foster multidisciplinary collaboration including innovators throughout science and technology, the business community, patients, care partners, and other stakeholders
  • Additive Address barriers to innovation public/private sectors do not otherwise
  • Sustainable Invest in a diverse portfolio to balance risk and sustain KidneyX”

This may explain why think tanks for kidney patients, all types of kidney patients, are beginning to become more prevalent.

Let’s go back to the website for more information. This is how they plan to succeed:

“Building off the success of similar public-private accelerators, KidneyX will engage a community of researchers, innovators, and investors to bring breakthrough therapies to patients by:

Development

Driving patient access to disruptive technologies via competitive, non-dilutive funding to innovators.

Coordination

Providing a clearer and less expensive path to bringing products to patients and their families.

Urgency

Creating a sense of urgency by spotlighting the immediate needs of patients and their families.”

One word jumped out at me: urgency. I am being treated for my CKD the same way CKD patients have been treated for decades…and decades. It’s time for a change.

One thing that doesn’t change is that we celebrate Memorial Day in the U.S. every year. And every year, I honor those who have died to protect my freedom and thank my lucky stars that Bear is not one of them. There is no way to describe the gratitude those of us who haven’t served in the military – like me – owe to those who have and lost their lives in doing so.

Until next week,

Keep living your life!