A Different Kind of App  

Periodically for the last decade, I’ve written about apps that could help us manage our Chronic Kidney Disease. They would be those with electrolyte counters, portion counters, GFR calculators, and even calorie counters or exercise counters. They were helpful. Some still exist; some have gone by the wayside.

In recent years, I’ve been vocal about the necessity for CKD patients to understand what our disease is, how it came to be, and what we might do about it. This is different from wanting people to be aware of CKD. My contention is that the educated patient is the one most able to help him or herself.

Responsum for CKD does just that, but I’ll let them explain their app themselves. This is from their April 28th blog at https://responsumhealth.com/great-news-for-the-ckd-community/.

“I have great news to share with Responsum Health’s extended family of supporters and everyone around the world whose lives are affected by kidney disease. Responsum Health, with support from Otsuka Pharmaceutical, is launching a new platform and app designed specifically for people with kidney disease, including chronic kidney disease (CKD)—a condition that affects 37 million Americans.

Responsum for CKD represents our company’s second disease-specific platform—the first being Responsum for PF—and includes some amazing new features. These include a translation function into seven languages and a dynamic social wall called Community Chat, which automatically suggests articles and resources based upon each comment or entry. Just like with pulmonary fibrosis, Responsum for CKD will be available as a free web-based platform and a mobile app for iOS and Android.

We’ve recruited an all-star Content Advisory Council made up of some of the top specialists in CKD to serve as our content validators. Instead of partnering with a specific patient advocacy group to vet our content, we chose this approach to ensure that the platform is free of commercial bias. We will roll out the names of our esteemed council alongside the app launch.

To the CKD community, Responsum Health is on the way! We can’t wait to serve you, join you, learn from you, and listen to you.

Let’s get started!

Andy Rosenberg
Founder and CEO, Responsum Health

Perhaps we could use a bit more information. Let’s try their May 5th press release at https://responsumhealth.com/press-and-media/responsum-health-launches-innovative-kidney-disease-information-platform/.

“Responsum Health Launches Innovative Kidney Disease Information Platform
New technology supports patients, families, caregivers, and healthcare professionals

​[WASHINGTON, D.C., May 28 2020] — Today, Responsum Health (Responsum), an innovative developer of personalized patient apps and chronic disease knowledge communities, with support from Otsuka Pharmaceutical, a global healthcare company, announced the launch of an online connection and knowledge platform for patients with kidney disease, such as chronic kidney disease (CKD), a condition that affects an estimated 37 million Americans. The platform, called Responsum for CKD, can be accessed for free via web browser or mobile app.

Designed to meet the needs of patients, families, caregivers, and healthcare professionals, Responsum for CKD offers a number of informational and community-oriented features. At its core, Responsum replaces unreliable web aggregators and social sites by providing patients and caregivers with a customized Newsfeed that has easy-to-read summaries of important kidney health news items. All of the information found on Responsum’s platforms is written by professional health writers and vetted by a team of researchers under the guidance of an advisory council, which is made up of leading kidney health experts.

Other features include a moderated social wall to serve as a community chat room and the Patient One-Sheet, which allows patients to easily collect, download, print, and share their key medical information. Patients will also have access to a robust collection of trusted patient support links.

“We are grateful that Otsuka is willing to support our mission to educate, support, and empower patients with chronic conditions through our unique approach to providing patients with the information they need to drive better outcomes,” said Andrew Rosenberg, founder of Responsum Health. “By working with recognized leaders from the patient advocacy community, we have created a trusted online platform that fills a vital information gap—while simultaneously creating an authentic, welcoming online community for people with kidney disease.”

About Responsum Health

Responsum Health’s mission is to build and support online knowledge communities for chronic disease patients. The company offers a free, revolutionary patient engagement platform that monitors, searches, and curates the Internet to generate a personalized news feed of article summaries, which are vetted by Responsum’s patient group partners. Responsum wraps the news feed into a comprehensive platform that enables patients to comment on and rate the articles, as well as share them with their professional care team and loved ones. Responsum also enables patients to better organize their health information, find local patient support groups and services, and support one another through a moderated, disease-specific social wall.”

The one thing that has been missing from other CKD apps is the education. I write to help people become aware of CKD and maybe understand a little bit of what affects you as a CKD patient. Responsum has articles in real time, so to speak. What I mean by that is if you’re interested in potassium and ask a question in the community about it, you also have articles attached that will explain more about your topic: no searching, no delay, just click on the upper right hand corner. How marvelous.

I think I’ve mentioned that I’ve been involved in what we used to call think tanks about what CKD patients need. My answer has always been education… and what could be better than immediate education? The one sheet with your medical information is also a boon, but not specific to only this app.

But the community with instant articles about your topic? Priceless. I would say that it’s free is also priceless, but that’s a little bit obvious. Do I recommend this app? Yes. Do I use this app? Yes… and if asked my opinion, I would say you should use it, too. The key to our kidney health just may be self-education.

Until next week,

Keep living your life!

James’s Kidney Transplant Wasn’t Preemptive

Last week, the third week of National Kidney Month, Kevin Fowler told us his story of the journey to his preemptive kidney transplant. This week, the fourth of National Kidney Month, James will tell us of his journey to a non preemptive kidney transplant. In case you were wondering, James and I met at an AAKP meeting in Tampa several years ago and just never lost contact. But let’s allow Uncle Jim (as he prefers to be called) tell his story.

My name is James Myers. I live in Hammond, IN. I am an ESRD & PKD patient. I was lucky enough to have a transplant on April 27th, 2016. I write to you today to tell you my story, as well as my experiences with polycystic kidney disease. At the age of 25, I went into the hospital with chest pain. From a simple x-ray, I was diagnosed with PKD.

I have lost five members of my family to PKD, including my dad. Because of my family’s history, I was immediately referred to Dr. Hellman, a nephrologist at Indiana University Health. He promptly put me on high blood pressure medication and a renal diet. I faithfully followed up at the kidney clinic every six months and took my medicine. I did the best I could do to stay on the kidney diet. There is no cure for PKD, and at that time, there was very little they could do for me.

I tried to ignore my condition and carry on with my life, but in reality, the fact is that after I was diagnosed with kidney failure, all of my decisions were colored by my impending death, or so I thought. It was a factor in a failed marriage, a legal career being cut short, and two professorships at two different colleges lost. I loved being with the kids.

Every step that I took from the date of my diagnosis was for one reason and one reason only; to avoid dialysis. I was able to do that for over 30 years, but in 2012. I could not delay it any longer. I began passing out, at home, in my classroom, everywhere. Many times after passing out, I was fearful I would be unable to reach the phone and call for help. I lived alone, and this caused a great deal of anxiety. At the age of 58, on July 28th, I started what would be a four year stretch on dialysis. My schedule was three days a week, four hours per session.

I was very, very angry when I first went on dialysis. After watching my dad die, I felt this was the beginning of the end. I had dreaded this for a long time. My dad passed after a short five years on dialysis, and I felt I was on the same life path as he. My days were numbered. I observed that many of my clinic mates came to the center by ambulance, were brought in on a gurney, walker, or wheelchair. Many used a cane. Many were diabetic on top of ESRD, and had suffered amputations. Five people were 90 years old or more. One woman was autistic and had the mentality of a 10 year old.

One of my dearest friends, Maureen O’Brien, looked after me. She forced me to open my eyes. I was able to drive and walk around on my own power. I had a fairly clear mind. I was taking classes toward two MBAs and was teaching other MBA candidates at the same time. Maureen had been dealing with kidney disease since the age of six. Every step along the way she had to argue and fight with healthcare officials. She had three transplants. Maureen provided encouragement and a bright, vivid smile. She provided a light on my path.

I began to understand my role. I made a conscious choice. I wanted to help my fellow Kidney Patients. I wanted to use my loud voice to help others. I wanted to advocate for my clinic mates who could not advocate for themselves. I did not like the way the dialysis clinics, the government, and the care staff pushed around or neglected my fellow Kidney Patients. The last straw for me was when they began to push for the cutting of funds to dialysis patients and clinics. I looked around the room and I realized with my health and skill set, I was the only one who could help. It occurred to me that if i did not accept this responsibility, maybe no one else would.

I joined as many kidney organizations as I could, I applied to be an advocate for as many groups as I could. I became very, very active on social media. I wrote petitions, I blogged, I contacted newspapers, I spoke and visited with my Congressman and Senators. I spoke frequently. To this day, I do whatever I have to do to bring about change for my fellow Kidney Patients. My life has purpose now. I like to think that my dad & Maureen would be proud of me.

I know that many of you are not used to me writing this way. I feel it is my responsibility to lift spirits, so I rarely talk about personal issues anymore. It is my hope to inspire others to likewise advocate for our fellow Kidney Patients. My friend Gail asked me to write my story out. Gail has been very candid with me, so I felt as she advocates for us, I should be just as candid with her & all of you. The point of this Kidney Story is to raise hope and to thank Gail and all of you that advocate for Kidney Patients.

PKD affects approximately 600, 000 Americans and 12.5 million people worldwide. It is one of the most inherited diseases on the planet. Polycystic Kidney Disease is more common than Cystic Fibrosis, Sickle Cell Anemia, Muscular Dystrophy, Hemophilia, Downs Syndrome, and Hodgkins Disease combined. PKD is one of the four leading causes of Kidney Failure. It costs the federal government in excess of $2 Billion annually in Medicare and Medicaid costs for dialysis, transportation and related treatment. There is no cure.

Sincerely,

James Myers
2019 Advocate of the Year for the NKF
BOD and Ambassador for the AAKP
Ambassador for the Chronic Disease Coalition
Ambassador for the NKF of Indiana
Ambassador for the American Kidney Fund
Ambassador for the PKD Foundation
Ambassador for the DPC

Thank you, Uncle Jim, for your generous sharing and even more generous advocacy.

Until next week,
Keep living your life!

Kevin Got His Preemptive Kidney Transplant

Several years ago,  I was invited to a kidney disease meeting. That’s where I first met Kevin Fowler, Principal of The Voice of the Patient, Inc. I liked listening to his ideas. Later, we walked into each other at an AAKP conference. This time I thoroughly enjoyed his company, but had quite a few questions about pre-emptive transplants. Kevin was good enough to explain his story, which answers my questions, in this guest blog during National Kidney Month. Take it away, Kevin! 

Kidney disease has always been a part of my life.  When I was growing up, my mom told me stories about her father who had suffered from Autosomal Polycystic Kidney Disease ( ADPKD), a disease which prompts the growth of cysts on the kidneys. My mom was the oldest of three sisters, and had great love and affection for my grandfather, Hubert Duvall.  I never had a chance to meet him because he died before I was born. It was the late 1950s when he was admitted to the hospital because he was not feeling well. Unknown to him, he was experiencing uremia, the inability of the kidneys to rid themselves of waste products such as urea, as he went into kidney failure. Shortly after his hospital admission he died.  As he neared death, he learned that ADPKD was the cause of his kidney failure. 

My grandfather’s patient journey had a profound impact upon his three daughters: Mary Ann, Ruth, and Laverne in that his genetic disease was passed on to each of them.  My mom, Mary Ann, was diagnosed after the birth of her third child. Imagine the joy of giving birth to a child while being diagnosed with a disease with limited scientific knowledge and a very uncertain future.  My mom and dad faced the unknown with a positive attitude, but with very little professional guidance.

As a young boy, I was very close to my mom.  I felt her unconditional love for me, and her whole life was dedicated to her three children.  As her ADPKD advanced, I saw her suffer with the disease. I saw her experience constant back pain, routine exhaustion and nausea.  All of this physical suffering was difficult to understand as a young child. Moreover, what was really difficult was the look on her face as she faced a nebulous future.

Eventually, my mom’s kidneys failed.  Unlike my grandfather, hemodialysis was available as a treatment option to sustain her life.  She started hemodialysis at the age of 48. While she approached dialysis with optimism, her future was never clear to her or our family.  I saw my mom struggle to survive on dialysis. I saw her return home from dialysis feeling exhausted and tired. I saw that when she had a rough hemodialysis session, it would take her longer to recover from the treatment.  She never bemoaned her fate, and provided us the legacy of her example.

After four and a half years on hemodialysis, my mom died at the age of 52.  Her dialysis experience left an indelible impression upon me. From that point on, I lived in fear that I would face the same fate.  I choose to never determine if I had the same disease. In many ways, it was a rational decision. Interventions were not able to slow down the progression of ADPKD.  If I were diagnosed with ADPKD, I would be penalized. I would face difficulty obtaining health and life insurance. The fear of facing the same patient journey as my mom was always hanging over my head, and I didn’t have the courage to determine if I too had ADPKD.  

I was married to my wife, Kathy, in 1995, and in less than five years we had two children.  During this time, I was being seen by a primary care physician who was aware of my ADPKD family history.  My kidney function was tested on my annual appointments, and he told me that my kidney function was fine. He stated that if I had ADPKD, there was not much that could be done to slow down the progression.  Later that same year near the Christmas season, I experienced deep flank (the side of your body between the bottom rib and the hip) pain. Initially, I attributed it to moving some furniture. The pain persisted, and because of my additional responsibilities as a husband and father, I called my primary care physician requesting an ultrasound test.  The ultrasound test would determine once and for all whether I too had ADPKD.

On a cold and sunny day in January 2001, my physician administered the ultrasound test. Watching his reaction told me all I needed to know.  At the age of 39, I was informed that I would be in kidney failure within the next three to five years. He offered to make a nephrology referral, but I declined.  Since he had not demonstrated competence managing my condition, I intuitively sensed that I could not trust his referral would serve my best interests. 

At that time, I was working in the pharmaceutical industry, so I called a physician friend at Barnes Hospital in St. Louis seeking a nephrology recommendation.  On my mother’s birthday, I met with my nephrologist – who had a profound impact on my life. He informed me that it was not necessary to be on dialysis, and that I could have a preemptive kidney transplant.  Because of my fear, I had never taken the time to learn about the different End Stage Kidney Disease treatment options. I was incredibly fortunate to receive the best treatment option.

On this recently past World Kidney Day, the theme was prevention due to detection.  In the United States approximately 90% of those with Stage 3 Chronic Kidney Disease are unaware of their condition.  This is no longer acceptable. The American Kidney Health Executive Order has initiated a public campaign to detect kidney disease earlier.  In fact, the National Kidney Foundation and CVS Kidney Care launched their public awareness campaign this month, National Kidney Month.  Unlike when I was diagnosed, there are now approved treatments to slow down the progression of kidney diseases.  There are potentially additional treatments in the pipeline for ADPKD, Diabetic Kidney Disease, FSGS, IGAN, etc. For many people there is no longer a need to live in fear.  There is a very real possibility that their patient journey may change for the better.

Thank you, Kevin, for sharing your personal kidney journey with us. Kevin may be reached via email at kevinjohnfowler@gmail.com or on Twitter as @gratefull080504.

 

Until next week,

Keep living your life!

How Will They Know?

Let’s start this month with a guest blog by American Medical Alert IDs. Why? Although I am not endorsing this particular brand, because I clearly remember being give Sulphur drugs in the Emergency Room when I was by myself and unable to let the medical staff there know I have Chronic Kidney Disease. Why? Because I remember that my husband fell when I was out of town. His grown children took him to the emergency room but didn’t know about his latex allergy and he was in no condition to explain.

 

Everything You Need To Know About Medical Alert IDs for Chronic Kidney Disease


Are you debating on getting a medical alert ID for chronic kidney disease? It’s time to take the confusion out of choosing and engraving a medical ID. This post will show you everything you need to know so you can enjoy the benefits of wearing one.

Why Kidney Patients Should Wear a Medical Alert ID

A medical ID serves as an effective tool to alert emergency staff of a patient’s special care needs, even when a person can’t speak for themselves. When every second counts, wearing a medical ID can help protect the kidney and safeguard its remaining function.

In emergencies, anyone diagnosed with chronic kidney disease or kidney failure may require special medical attention and monitoring. It is important that patients are able to communicate and identify their medical condition at all times. This includes individuals who are:

  • Undergoing in-center hemodialysis
  • Undergoing home hemodialysis
  • On Continuous Ambulatory Peritoneal Dialysis (CAPD)
  • On Continuous Cycling Peritoneal Dialysis (CCPD)
  • Transplant recipients
  • Diagnosed with diabetes

Delays in getting the proper treatment needed for chronic kidney disease may lead to the following complications:

  • Fatal levels of potassium or hyperkalemia. This condition can lead to dangerous, and possibly deadly, changes in the heart rhythm.
  • Increased risk of peritonitis or inflammation of the membranes of the abdominal wall and organs. Peritonitis is a life-threatening emergency that needs prompt medical treatment.
  • Anemia or decreased supply in red blood cells. Anemia can make a patient tired, weak, and short of breath.
  • Heart disease, heart attack, congestive heart failure, and stroke
  • High blood pressure which can cause further damage to the kidneys and negatively impact blood vessels, heart, and other organs in the body.
  • Fluid buildup in the body that can cause problems with the heart and lungs.

According to Medscape, the most common cause of sudden death in patients with ESRD is hyperkalemia, which often follows missed dialysis or dietary indiscretion. The most common cause of death overall in the dialysis population is cardiovascular disease; cardiovascular mortality is 10-20 times higher in dialysis patients than in the general population.

Kidney Patients Who Wear a Medical ID Have 62% Lower Risk of Renal Failure

In a study of 350 patients, primarily in CKD stages 2 through 5, those who wore a medical ID bracelet or necklace had a 62% lower risk of developing kidney failure, based on eGFR. Wearing a medical-alert bracelet or necklace was associated with a lower risk of developing kidney failure compared with usual care.

Wearing a medical ID can serve as a reminder to look after your health and make the right choices such as taking medication on time and sticking to proper diet.

6 Things to Engrave on Kidney Disease Medical ID

A custom engraved medical alert jewelry can hold precise information that is specific to the wearer’s health condition. Here are some of the most important items to put on a chronic kidney disease or kidney failure medical ID:

  • Name
  • Medical information – including if you have other medical conditions such as diabetes or high blood pressure
  • Stage of CKD or kidney function
  • Transplant information
  • Current list of medicines
  • Contact person

Some patients have a long list of medications that may not fit on the engraved part of an ID. An emergency wallet card is recommended to use for listing down your medicines and other information or medical history.

 

Click here to enlarge chronic kidney disease infographic

Do you wear or carry a form of medical identification with you? Please share your experience or tips with us by posting a comment.

Ready for a new topic? All right then. Ever have a problem drinking your coffee? I know I have… until I followed these tips from the Cleveland Clinic at https://health.clevelandclinic.org/coffee-giving-you-tummy-trouble-try-these-low-acid-options/:

Here’s hoping that next cup of coffee treats you well.

Until next week,

Keep living your life!

 

The Reluctant Donor

I’m pretty sure I’ve mentioned the exceedingly personable folks I met at the kidney disease think tank and then the AAKP National Patient Meeting earlier this year. Actually, you’ve already heard from one from them. This past July, Cindy Guentert-Baldo guest blogged about being a PKD patient. Today’s guest blog by Suzanne F. Ruff looks at the other side of same kidney disease. Ms. Ruff is no stranger to spreading awareness of kidney disease as you can see by her credentials:

author of The Reluctant Donor

Freelance writer for The Charlotte Observer

Executive Board of Directors American Association of Kidney Patients (AAKP)

Living Donor Council of The National Kidney Foundation (NKF)

Published in Chicken Soup for the Soul: Grieving & Recovery & Say Hello to A Better Body

Before you start reading Suzanne’s guest blog, I feel it only fair to warn you it left me in tears.

Why am I called The Reluctant Donor?  A simple answer is because I cried and whined all the way into the operating room to donate a kidney to my sister.  But it’s really not simple.  It’s complicated.

I really didn’t like my sister.  Okay, okay, I know.  If you have a sibling, you probably know what I’m talking about . . . siblings can drive you crazy.  If you don’t have a sibling, well, it’s complicated.  That’s part of the reason I titled my book, The Reluctant Donor, but not quite the whole reason.

On my journey to become a living kidney donor to a sister I didn’t like, I learned a lot of things.  Probably the most important thing is that although I may not have liked my sister, I discovered how much I love her. When I didn’t like her, it was because she was crabby grouchy and scared.  I learned something from that, too.  My sister was crabby and grouchy because she was ill…very, very ill.  That’s what happens when you don’t feel well, when your kidneys fail, and when you’re scared, terrified and afraid: you are not yourself.

I also learned denial is a powerful thing.  My sister was in denial.  Kidney disease does that to you; my sister and I should know.  We were born into a family chockful of people with kidney disease. Polycystic kidney disease or ADPKD (Autosomal Dominant Polycystic Kidney Disease) to be exact. This is a hereditary disease that causes cysts to grow around both kidneys causing the kidneys to fail.  If one of your parents carries the gene (our mother did), you have a 50% chance of inheriting the disease.   My sister, along with my other sister, inherited that gene from our mother.  Our mother, along with Mom’s two brothers and two sisters, inherited that gene from their mother.

Yes, sirreee, we were chockful of kidney disease. Over twenty-three family members now have or had the disease. We’ve had ten deaths from kidney disease, including our mother.

I did not inherit the gene that causes the disease.  Many people ask me if I feel guilty, sort of like survivor’s guilt, because my sisters have the disease and I don’t. I don’t feel guilty.  A person has no power over what genes they inherit.  But, I do feel a tremendous responsibility to do what I can to eradicate the disease that has ravaged my family.  So, I wrote my book. 

There is no cure for PKD.  Growing up I learned I was named after my grandmother who died of polycystic kidney disease before I was born.  When her kidneys failed, the doctors told her there was nothing the doctors could do for her. Mom described my grandmother’s death: Mom, a teenager then, her father, her brothers and sisters were gathered around my grandmother’s hospital bed, when my grandmother sat straight up and said, “Here I am, Lord!” and died.

The disease then hit five of my grandmother’s six children, including my mother. Through their suffering and deaths, I have learned courage and faith.  One of my aunts diagnosed with PKD in the 1960’s was one of the first to be able to try the new-fangled machine called dialysis. But, alas! There were not enough dialysis machines!!!!!  My aunt was a Roman Catholic nun.  She offered to give up her spot on the waiting list and died a few months later. She was 45 years old.

Presently, my three cousins, all brothers, suffer from polycystic kidney disease.  Their eldest brother, John, passed away from polycystic kidney disease (PKD) in 1996. Two of the three brothers are on dialysis and the other brother will need dialysis soon.    Their sister has offered to be a living donor to one of them, but each of them insists the other brother accept her kidney. A stalemate … as the disease progresses.

I have other stories about my magnificent family, but this blog is near its end.  You might even say none of this explains why I cried, kicked and screamed my way into the operating room to donate one of my kidneys to my sister.

Plain and simple: I was afraid.  I don’t like hospitals.  I hate them.  Growing up, the people I loved most died in hospitals.  I don’t like needles. I don’t like blood.   I was afraid I would die, afraid the surgery wouldn’t be a success, afraid my life would change because I donated.  I was always afraid of polycystic kidney disease as one by one, people I loved suffered and died.

Something happened to me, though, when my sister collapsed in kidney failure.  My faith kicked in and I stepped up.  We are blessed.  The surgery was a success. My sister is now a grandmother. Life is so precious!

Having gained both another son-in-law and my first grandchild this year, I can only agree with Suzanne… and life was precious for me before. I’m reading her book now and enjoying it. Should you decide to read Suzanne’s book (and any and all of mine), be sure to leave a review. Those are what get our books recognized… and in Suzanne and my cases, spreads awareness of kidney disease.

Until next week,

Keep living your life!

 

Cindy Tells All

On June 11th of this year, I wrote about Polycystic Kidney Disease after having met Cindy Guentert-Baldo at a kidney event. She has a type of kidney disease that I had no clue about until she started explaining it. What she had to say caught my attention, so I asked her if she would be willing to guest blog. I knew she had a family and is both a lettering artist and YouTube creator. That’s a lot of busy, especially if you’re dealing with a chronic illness. Luckily for us, she was able to work a guest blog into her busy schedule.

*****

In some ways, I live the typical middle class American mom life. I have a middle schooler and a high schooler. I work from home, my husband works a 9-5 in an office. The kids go to school, do their homework, go to activities. I have coffee dates with friends and dinner out with family, we go to the movies, we stay home and do yard work. Same routine, same rhythm as so many other families we know.

This picture doesn’t tell the whole story: I have polycystic kidney disease. I am currently in Stage 4, with my eGFR hovering around 25. My kidneys, at last measurement, were 27 and 25 cm in length.

Part of my daily rhythm is taking 10 different medications to control my blood pressure, manage other symptoms of being in Stage 4 of kidney disease and to help with my pain levels. Another part is having to take breaks when my energy flags or my pain levels get high enough to make sitting at a desk impossible. My kids have learned to read my body language so they know when Mom’s having a bad pain day. They’ve also learned to not hug me around my stomach, as my kidneys are so large that a loving hug could send me to bed for a few days.

I’ve burst a cyst making my bed, tying my shoe, twisting at the waist. I currently have a cyst the size of a healthy kidney underneath my left ribs that is a constant reminder that I am sick.

Aside from the physical problems that come with ADPKD (Let me help Cindy out here with a definition from emedicine at https://emedicine.medscape.com/article/244907-overview: “Autosomal dominant polycystic kidney disease (ADPKD) is a multisystemic and progressive disorder characterized by cyst formation and enlargement in the kidney … and other organs (eg, liver, pancreas, spleen). Up to 50% of patients with ADPKD require renal replacement therapy by 60 years of age.”), there is also the emotional baggage I carry.

This disease is genetic – I have multiple family members in different stages. In some ways, I am grateful to have people to talk to who understand without my having to explain. On a recent vacation my sister (who is in Stage 5) and I lay next to each other and just let out our frustrations and difficulties, knowing we had someone listening who understood. Our grandmother is in her 15th year with her transplant – she has impressed upon us how crucial it is to be informed about the disease in general and our health specifically.

I carry a lot of emotional, painful baggage due to this disease. Our father passed away from a brain stem aneurysm at age 40, brought on due to high blood pressure and PKD. My sister and I were diagnosed shortly afterwards. These days, as I approach 40, I live with a certain amount of terror. What if I die and leave my kids the way my dad left me? I’m aware of how unreasonable of a fear that is – my father died because he was unable to get health insurance and, thus, was unable to care for himself as his kidney disease progressed. I have learned from that.

That doesn’t change the deep fear inside me.

I also live with the guilt that I may have passed this disease to one or both of my children. Was I selfish becoming a parent knowing the kids themselves could wind up with PKD? I was healthy when I had them. I had no idea what I would be feeling like as my kidneys grew and began to fail. Make no mistake; I adore my children, and the world is a better place with them in it. But that doesn’t make the guilt go away.

I worry about having access to healthcare. I worry about dialysis with kids still in school. I worry about something happening to me the way it did to my dad. I worry about something happening to my sister the way it did to our dad. I struggle with my body image as my kidneys grow and I look more and more pregnant. I fight with my expectations of what I think my body should be able to do, and what I am actually able to do. I fight against the idea that I am a sick person.

Despite ALL of this, I love my life. I love my family. I love my friends. I live a mundane, repetitive, fantastic, beautiful life of a mom, a wife, a sister, a friend, an artist, a woman.

I am not PKD. I am a person with PKD…

And I am so much more.

*****

I have to admire Cindy for her honesty here. She would be having these feelings whether or not she shared them with us, but the fact that she did may just make it easier for other PKD patients to speak about their own fears.

By the way, The American Kidney Fund’s next webinar, Advocating for a rare disease, is on Thursday, July 26, 2018 from 2:00 – 3:00 p.m. EDT. The speakers will be Angeles Herrera, Holly Bode, You can register at https://register.gotowebinar.com/register/7986767093922676227.

In other news, the SlowItDownCKD book series now includes SlowItDownCKD 2011, 2012, 2013, 2014, 2015, 2016, and 2017, all available from Amazon.com and B & N.com. I had contemplated changing the title of What Is It and How Did I Get It? Early Stage Chronic Kidney Disease to SlowItDownCKD 2010 but rejected the idea. I like that title; don’t you? Of course, expect SlowItDownCKD 2018 early next year. These books were written for those of you who have requested the blogs in print form for those family members and friends who are either not computer savvy or don’t have easy access to a computer. It’s my pleasure to comply with that request. Oh, I still have one desk copy each of the retired The Book of Blogs: Moderate Stage Chronic Kidney Disease, Parts 1 & 2 if you’ve not received a free book from me before and would like one of them. Just respond with a comment so I know you were the first to ask.

Until next week,

Keep living your life!