Chemo and My Kidneys

 As most of you know, I am extremely protective of my kidneys. When I was first diagnosed with Chronic Kidney Disease 11 years ago, my eGFR was only 39. Here’s a quick reminder of what the eGFR is from my first CKD book, What Is It and How Did I Get It? Early Stage Chronic Kidney Disease:

“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.”

39. That’s stage 3B, the lower part of stage 3B. During the intervening 11 years, I’ve been able to raise it to 50 (and sometimes higher for short periods) via vigorously following the renal diet, exercising, avoiding stress as much as possible, maintaining adequate sleep, and paying strict attention to the medications prescribed for me. While the medications were the ones I had been taking for high blood pressure prior to being diagnosed with CKD, they worked in my favor.

This excerpt from The National Center for Biotechnology Information (NCBI) part of the United States National Library of Medicine (NLM), a branch of the National Institutes of Health (NIH) at https://www.ncbi.nlm.nih.gov/books/NBK492989/ will explain why:

“The decision of whether to reduce blood pressure levels in someone who has chronic kidney disease will depend on

  • how high their blood pressure is (when untreated),
  • whether they have diabetes, and
  • how much protein is in their urine (albumin level).

A person with normal blood pressure who doesn’t have diabetes and hardly has any albumin in their urine will be able to get by without using any blood-pressure-lowering medication. But people who have high blood pressure, diabetes or high levels of albumin in their urine are advised to have treatment with ACE inhibitors (angiotensin-converting enzyme inhibitors) or sartans (angiotensin receptor blockers). In people who have diabetes, blood-sugar-lowering medication is also important.”

When I was first diagnosed with pancreatic cancer early last month, it changed my medical priorities. With my nephrologist’s blessing, my primary focus was the cancer… not my kidneys. It took constant reminders to myself not to be so quick to say no to anything that I thought would harm my kidneys. In other words, to those things I’d been saying no to for the last 11 years.

For example, once diagnosed with CKD, I ate very little protein keeping to my five ounce daily limitation. Not anymore. Protein is needed to avoid muscle wasting during chemotherapy with a minimum requirement of eight ounces a day. I even tried roast beef and other red meats. After 11 years, they no longer agreed with me so I eat ground turkey, chicken, cheese, and am considering soy.

Another change: I preferred not to eat carbohydrates, but was warned not to lose weight if I could help it. All of a sudden I’m eating Goldfish, bread, and pasta. I can’t say that I’m enjoying them, but I am keeping my weight loss to a minimum. Other limitations like those on potassium and phosphorous have also gone by the wayside. I’ve eaten every childhood favorite, foods that I’ve avoided for the last 11 years, and anything that might look tempting in the last month, but none of them really taste that good. I like the foods on the renal diet now.

Oh, the only thing I have not increased is salt. My daughter takes me to my chemotherapy sessions. There’s a Jewish style restaurant across the street and we showed up early one day. I wanted to try a toasted bagel with butter, the way I ate it before CKD. The damned thing was salty! I hadn’t expected that.

Back to chemo and my kidneys. I admit it. I was nervous. What was this combination of poisons going to do to my kidneys? If it was so caustic that I had to have a port in place so that it wouldn’t be injected directly into my veins for fear of obliterating them, what about my kidneys?

I anxiously awaited my first Comprehensive Blood Panel, the blood test that includes your GFR. Oh, oh, oh! My kidney function had risen to 55 and my creatinine had lowered to 1.0. Let me explain just how good this was.

A GFR of 55 is the higher part of stage 3A. 60 is where stage 2 of CKD begins. My kidneys were functioning better on chemo. And the creatinine? Let’s get a quick definition of that first. According to The National Institute of Diabetes and Digestive and Kidney Diseases at https://www.niddk.nih.gov/health-information/kidney-disease/chronic-kidney-disease-ckd/tests-diagnosis:

“Creatinine. Creatinine is a waste product from the normal breakdown of muscles in your body. Your kidneys remove creatinine from your blood. Providers use the amount of creatinine in your blood to estimate your GFR. As kidney disease gets worse, the level of creatinine goes up.”

Yet, mine went down. How? I asked and it was explained that all the hydration used to clear my veins of the caustic chemotherapy had worked this magic. I had two hours of hydration before the chemo-therapy  itself, two hours afterward, and another two hours the next day. My kidneys had never been this hydrated!

But wait, there’s more. I have diabetes. The pancreas is the organ that produces insulin. Could my diabetes be from the tumor blocking the production of insulin by my pancreas? I truly don’t know, but my glucose level is within the standard range for the first time since I’ve been diagnosed with diabetes.

Would I recommend chemotherapy to raise your GFR, and lower your creatinine and your glucose level? Of course not. But I am feeling so very lucky that my kidneys are not coming to any harm during the chemotherapy necessary to save my life. I can’t begin to tell you how relieved I am.

Until next week,

Keep living your life!

National Kidney Month Extended

The chapter I contributed to 1in9 goes on beyond National Kidney Month, so since I think every day should be World Kidney Day, I decided to just keep printing it until it was finished. Gotcha! Bet you thought I was going to write every month should be National Kidney Month. Although, that’s not a bad idea either. So, for those of you just tuning in, this is actually part three of that chapter. You can just scroll back on the blog to read the first two parts. Ready? Let’s go.

*****

I realized I needed to rest, too. Instead of giving a lecture, running to an audition, and coming home to meet a deadline, I slowly started easing off until I didn’t feel like I was running on empty all the time. The result was that I ended up graciously retiring from both acting and teaching at a local college, which gave me more time to work on my CKD awareness advocacy.

But, I had to be oh-so-vigilant with other medical practitioners. One summer I had four different infections and had to quickly research the medications prescribed in the emergency room. One hospital insisted I could take sulfa drugs because I was only stage 2 at the time. My nephrologist disagreed. They also prescribed a pain killer with acetaminophen in it, another no-no for us.  I didn’t return to them when I developed the other infections.

My experience demonstrates that you can slow down CKD. I was diagnosed at stage 3 and I am still there, over a decade later. It takes knowledge, commitment and discipline—but it can be done, and it’s worth the effort. I’m sneaking up on 72 now and know this is where I want to spend my energy for the rest of my life: chronic kidney disease awareness advocacy. I think it’s just that important.

At the time of my diagnosis, I was a college instructor. My favorite course to teach was Research Writing. I was also a writer with an Academic Certificate in Creative Non-Fiction and a bunch of publications under my belt. It occurred to me that I couldn’t be the only one who had no clue what this new-to-me disease was and how to handle living with it. I knew how to research and I knew how to write, so why not share what I learned?

I wasn’t sure of what had to be done to share or how to do it. I learned by trial and error. People were so kind in teaching me, pointing out what might work better, even suggesting others that might be interested in what I was doing. I love people. I’d written quite a few how to(s), study guides, articles, and literary guides so the writing was not new to me. I asked for suggestions as to what to do with my writing and that’s when I learned about unscrupulous, price gouging vanity publishers. I’m still paying for the unwitting mistakes I made, but they were learning experiences.

My less-than-stellar experience with being diagnosed and the first nephrologist are what prompted me to write What Is It and How Did I Get It? Early Stage Chronic Kidney Disease. Why, I wondered, should any new CKD patient be as terrified as I was? Of course, I constantly remind my readers that I’m not a doctor and they need to consult their nephrologists or renal dietitians before making any changes to their regiment.

I didn’t feel… well, done with sharing or researching once I finished the book so I began writing a weekly blog: SlowItDownCKD. Well, that and because a nephrologist in India told me he wanted his newly diagnosed patients to read my book, but most of them couldn’t afford the bus fare to the clinic, much less a book. I published each chapter as a blog post. The nephrologist translated my posts, printed them and distributed them to his patients—who took the printed copies back to their communities. It would work!

But first I had to teach myself how to blog. I made some boo-boos and lost a bunch of blogs until I got it figured out. So why do I keep blogging? There always seems to be more to share about CKD. Each week, I wonder what I’ll write… and the ideas keep coming. I now have readers in something like 106 different countries who ask me questions I hadn’t even thought of. I research for them and respond with a blog post, reminding them to speak with their nephrologists and/or renal nutritionists before taking any action… and that I’m not a doctor. The blog has won several awards. Basically, that’s because I write in a reader friendly manner. After all, what good is all my researching if no one understands what I’m writing?

Non-tech savvy readers asked if I could print the blogs; hence, the birth of the SlowItDownCKD series of books. Some people think SlowItDownCKD is a business; it’s not. Some think it’s a profit maker; it’s not. So, what is it you ask? It’s a vehicle for spreading awareness of Chronic Kidney Disease and whatever goes along with the disease. Why do I do it? Because I had no idea what it was, nor how I might have prevented the disease, nor how to deal with it effectively once I was diagnosed. I couldn’t stand the thought of others being in the same position.

One of my daughters taught me about social media. What???? You could post whatever you wanted to? And Facebook wasn’t the only way to reach the public at large? Hello, LinkedIn. A friend who is a professional photographer asked me why I wasn’t using my fun photography habit to promote awareness. What??? You could do that? Enter Instagram. My step-daughters love Pinterest. That got me to thinking and suddenly SlowItDownCKD had a Pinterest account. Then someone I met at a conference casually mentioned she offers Twitter workshops. What kind of workshops? She showed me how to use Twitter to raise CKD awareness.

*****

There’s more and you’ll get to read it next week. I hope you’re enjoying your look into how I entered the world of Chronic Kidney Disease Awareness Advocacy.

Until next week,

Keep living your life!

To Continue…

National Kidney Month is just flying by. This is actually the last week and I doubt I’ll be able to post the rest of the 1in9 chapter before next month. But then again, it’s always Kidney Month for those of us with Chronic Kidney Disease. By the way, thank you to the reader who made it a point of telling me she can’t wait to read the rest of the chapter. Sooooo, let’s get started!

***

Nephrologist switch. The new one was much better for me. He explained again and again until I understood and he put up with a lot of verbal abuse when this panicky new patient wasn’t getting answers as quickly as she wanted them. Luckily for me, he graciously accepted my apology.

After talking to the nephrologist, I began to realize just how serious this disease was and started to wonder why my previous nurse practitioner had not caught this. When I asked her why, she responded, “It was inconclusive testing.” Sure it was. Because she never ordered the GFR tested; that had been incidental! I feel there’s no sense crying over spilled milk (or destroyed nephrons, in this case), but I wonder how much more of my kidney function I could have preserved if I’d known about my CKD earlier.

According to the Mayo Clinic, there are 13 early signs of chronic kidney disease. I never experienced any of them, not even one. While I did have high blood pressure, it wasn’t uncontrollable which is one of the early signs. Many, like me, never experienced any noticeable symptoms. Unfortunately, many, like me, may have had high blood pressure (hypertension) for years before CKD was diagnosed. Yet, high blood pressure and diabetes are the two leading causes of CKD. I find it confusing that uncontrollable high blood pressure may be an early sign of CKD, but hypertension itself is the second leading cause of CKD.

Here’s the part about my researching. I was so mystified about what was happening and why it was happening that I began an extensive course of research. My nephrologists did explain what everything meant (I think), but I was still too shocked to understand what they were saying. I researched diagnoses, descriptions of tests, test results, doctors’ reports, you name it. Slowly, it began to make sense, but that understanding only led to more questions and more research.

You’ve probably already guessed that my world changed during that first appointment. I began to excuse myself for rest periods each day when I went back East for a slew of family affairs right after. I counted food groups and calories at these celebrations that summer. And I used all the errand running associated with them as an excuse to speed walk wherever I went and back so I could fit in my exercise. Ah, but that was just the beginning.

My high blood pressure had been controlled for 20 years at that time, but what about my diet? I had no clue there was such a thing as a kidney diet until the nutritionist explained it to me. I’m a miller’s granddaughter and ate anything – and I do mean anything – with grain in it: breads, muffins, cakes, croissants, all of it. I also liked lots of chicken and fish… not the five ounces per day I’m limited to now.

The nutritionist explained to me how hard protein is on the kidneys… as is phosphorous… and potassium… and, of course, sodium. Out went my daily banana—too high in potassium. Out went restaurant burgers—larger than my daily allowance of protein. Chinese food? Pizza? Too high in sodium. I embraced an entirely new way of eating because it was one of the keys to keeping my kidneys functioning in stage 3.

I was in a new food world. I’d already known about restricting sodium because I had high blood pressure, but these other things? I had to keep a list of which foods contain them, how much was in each of these foods, and a running list of how much of each I had during the day so I knew when I reached my limit for that day.

Another critical piece of slowing down CKD is medication. I was already taking meds to lower my blood pressure when I was first diagnosed with CKD. Two more prescriptions have been added to this in the last decade: a diuretic that lowers my body’s absorption of salt to help prevent fluid from building up in my body (edema), and a drug that widens the blood vessels by relaxing them. I take another drug for my brand new diabetes. (Bye-bye, sugars and most carbs.) The funny thing is now my favorite food is salad with extra virgin olive oil and balsamic vinegar. I never thought that would happen: I was a chocoholic!

Exercise, something I loved until my arthritis got in the way, was also important. I was a dancer. Wasn’t that enough? Uh-uh, I had to learn about cardio and strength training exercise, too. It was no longer acceptable to be pleasantly plumb. My kidneys didn’t need the extra work. Hello to weights, walking, and a stationary bike. I think I took sleep for granted before CKD, too, and I now make it a point to get a good night’s sleep. A sleep apnea device improved my sleep—and my kidney function rose.

I realized I needed to rest, too. Instead of giving a lecture, running to an audition, and coming home to meet a deadline, I slowly started easing off until I didn’t feel like I was running on empty all the time. The result was that I ended up graciously retiring from both acting and teaching at a local college, which gave me more time to work on my CKD awareness advocacy.

***

There’s so much more to tell you about my personal CKD journey… and you’ll read more of it next week. Although, I should remind you that the entire book is available in print and digital on both Amazon.com and B&N.com, just as the entire SlowItDownCKD series of books is.

Until next week,
Keep living your life!

Pancreas + Kidneys = ?

31 years ago, my father died of pancreatic cancer. For some reason, I remember him asking me what electrolytes were as soon as he was diagnosed. I didn’t know. I do now, but I don’t know if there’s a connection between the pancreas and the kidneys. Of course, I mean other than the fact that they are all organs in your body.

Oh, sorry, I didn’t give you the definition. This is from Healthline at https://www.healthline.com/nutrition/electrolytes  :

“’Electrolyte’ is the umbrella term for particles that carry a positive or negative electric charge ….

In nutrition, the term refers to essential minerals found in your blood, sweat and urine.

When these minerals dissolve in a fluid, they form electrolytes — positive or negative ions used in metabolic processes.

Electrolytes found in your body include:

  • Sodium
  • Potassium
  • Chloride
  • Calcium
  • Magnesium
  • Phosphate
  • Bicarbonate

These electrolytes are required for various bodily processes, including proper nerve and muscle function, maintaining acid-base balance and keeping you hydrated.”

Ummm, you have Chronic Kidney Disease. These are the electrolytes you need to keep an eye on, especially sodium, potassium, and phosphate. But why did Dad ask me about them?

I plunged right in to find the answer and immediately found a journal article… on a pay site. Not being one to pay for what can be found for free (and is 30 years old, by the way), I decided to look for as much information on the pancreas as I could find and see what we could figure out together.

Let’s start at the beginning. According to the Sol Goldman Pancreatic Cancer Research Center of Johns Hopkins Medicine – Pathology at http://pathology.jhu.edu/pc/basicoverview1.php?area=ba:

“What is the pancreas?

The pancreas is a long flattened gland located deep in the belly (abdomen). Because the pancreas isn’t seen or felt in our day to day lives, most people don’t know as much about the pancreas as they do about other parts of their bodies. The pancreas is, however, a vital part of the digestive system and a critical controller of blood sugar levels.

Where is the pancreas?

The pancreas is located deep in the abdomen. Part of the pancreas is sandwiched between the stomach and the spine. The other part is nestled in the curve of the duodenum (first part of the small intestine). To visualize the position of the pancreas, try this: touch your right thumb and right ‘pinkie’ fingers together, keeping the other three fingers together and straight. Then, place your hand in the center of your belly just below your lower ribs with your fingers pointing to your left. Your hand will be the approximate shape and at the approximate level of your pancreas.”

I tried that. It’s not as easy as it sounds.

So now we sort of know what and where it is, but what does it do? No problem, Columbia University Irving Medical Center has just the info we need at http://columbiasurgery.org/pancreas/pancreas-and-its-functions:

“Exocrine Function:

The pancreas contains exocrine glands that produce enzymes important to digestion. These enzymes include trypsin and chymotrypsin to digest proteins; amylase for the digestion of carbohydrates; and lipase to break down fats. When food enters the stomach, these pancreatic juices are released into a system of ducts that culminate in the main pancreatic duct. The pancreatic duct joins the common bile duct to form the ampulla of Vater which is located at the first portion of the small intestine, called the duodenum. The common bile duct originates in the liver and the gallbladder and produces another important digestive juice called bile. The pancreatic juices and bile that are released into the duodenum, help the body to digest fats, carbohydrates, and proteins.

Endocrine Function:

The endocrine component of the pancreas consists of islet cells (islets of Langerhans) that create and release important hormones directly into the bloodstream. Two of the main pancreatic hormones are insulin, which acts to lower blood sugar, and glucagon, which acts to raise blood sugar. Maintaining proper blood sugar levels is crucial to the functioning of key organs including the brain, liver, and kidneys.”

The kidneys? Now it’s starting to make sense. We need whatever specific electrolyte balance our lab work tells us we need to keep our kidneys working in good stead and we need a well-functioning pancreas to regulate our blood sugars. Hmmm, diabetes is one of the two leading causes of CKD. It seems the pancreas controls diabetes since it creates insulin.

What could happen if the pancreas wasn’t doing its job, I wondered.  This is from the Mayo Clinic at https://www.mayoclinic.org/diseases-conditions/pancreatitis/symptoms-causes/syc-20360227,

“Pancreatitis [Me here: that’s an inflammation of the pancreas] can cause serious complications, including:

  • Pseudocyst. Acute pancreatitis can cause fluid and debris to collect in cystlike pockets in your pancreas. A large pseudocyst that ruptures can cause complications such as internal bleeding and infection.
  • Infection. Acute pancreatitis can make your pancreas vulnerable to bacteria and infection. Pancreatic infections are serious and require intensive treatment, such as surgery to remove the infected tissue.
  • Kidney failure. Acute pancreatitis may cause kidney failure, which can be treated with dialysis if the kidney failure is severe and persistent.
  • Breathing problems. Acute pancreatitis can cause chemical changes in your body that affect your lung function, causing the level of oxygen in your blood to fall to dangerously low levels.
  • Diabetes. Damage to insulin-producing cells in your pancreas from chronic pancreatitis can lead to diabetes, a disease that affects the way your body uses blood sugar.
  • Malnutrition. Both acute and chronic pancreatitis can cause your pancreas to produce fewer of the enzymes that are needed to break down and process nutrients from the food you eat. This can lead to malnutrition, diarrhea and weight loss, even though you may be eating the same foods or the same amount of food.
  • Pancreatic cancer. Long-standing inflammation in your pancreas caused by chronic pancreatitis is a risk factor for developing pancreatic cancer.

Did you catch kidney failure and diabetes? I believe we now know how the kidneys and pancreas are related to each other. Ah, if only I’d known how to research 31 years ago….

Until next week,

Keep living your life!

Bulking Up

While I make sure to state that I’m not a doctor, I’m not always certain my readers get that. This is why I was so glad that a reader asked me a question about her doctor’s advice, prefacing her question by stating that she knows I’m not a doctor. I feel better.

Her question? It’s about fiber and Chronic Kidney Disease. But first, let’s find out exactly what fiber is. According to Harvard’s T. H. Chan School of Public Health at https://www.hsph.harvard.edu/nutritionsource/carbohydrates/fiber/,

Fiber comes in two varieties, both beneficial to health:

  • Soluble fiber, which dissolves in water, can help lower glucose levels as well as help lower blood cholesterol. Foods with soluble fiber include oatmeal, nuts, beans, lentils, apples and blueberries.
  • Insoluble fiber, which does not dissolve in water, can help food move through your digestive system, promoting regularity and helping prevent constipation. Foods with insoluble fibers include wheat, whole wheat bread, whole grain couscous, brown rice, legumes, carrots, cucumbers and tomatoes.

The best sources of fiber are whole grain foods, fresh fruits and vegetables, legumes, and nuts.”

We all know people need fiber, but do you know why? I found the answer stated the most succinctly on Verywell Fit’s site at https://www.verywellfit.com/all-about-fiber-2242215.

“Besides reducing the glycemic effect of meals and contributing to colon health, there is evidence that fiber may benefit us in other ways. It seems to help lower cholesterol and triglycerides, and also may help to prevent:

  • Ulcers, particularly in the beginning of the small intestine (duodenal ulcers)
  • Diabetes
  • Heart Disease
  • Cancer”

As a diabetic, I understand why I need fiber, but what about as a CKD patient? DaVita at https://www.davita.com/diet-nutrition/articles/basics/fiber-in-the-kidney-diet has that one covered:

“Adequate fiber in the kidney diet can be beneficial to people with chronic kidney disease (CKD) because it:

  • Keeps GI (gastrointestinal) function healthy
  • Adds bulk to stool to prevent constipation
  • Prevents diverticulosis (pockets inside the colon)
  • Helps increase water in stool for easier bowel movements
  • Promotes regularity
  • Prevents hemorrhoids
  • Helps control blood sugar and cholesterol”

Hmmm, this is very similar to reasons why everyone – CKD or not – should pay attention to fiber. But, take a look at this list of high fiber foods from the Mayo Clinic at https://www.mayoclinic.org/healthy-lifestyle/nutrition-and-healthy-eating/in-depth/high-fiber-foods/art-20050948:

Fruits                                              Serving size              

Raspberries 1 cup 8.0
Pear 1 medium 5.5
Apple, with skin 1 medium 4.5
Banana 1 medium 3.0
Orange 1 medium 3.0
Strawberries 1 cup 3.0

 

Vegetables Serving size Total fiber (grams)*
Green peas, boiled 1 cup 9.0
Broccoli, boiled 1 cup chopped 5.0
Turnip greens, boiled 1 cup 5.0
Brussels sprouts, boiled 1 cup 4.0
Potato, with skin, baked 1 medium 4.0
Sweet corn, boiled 1 cup 3.5
Cauliflower, raw 1 cup chopped 2.0
Carrot, raw 1 medium 1.5

 

Grains Serving size Total fiber (grams)*
Spaghetti, whole-wheat, cooked 1 cup 6.0
Barley, pearled, cooked 1 cup 6.0
Bran flakes 3/4 cup 5.5
Quinoa, cooked 1 cup 5.0
Oat bran muffin 1 medium 5.0
Oatmeal, instant, cooked 1 cup 5.0
Popcorn, air-popped 3 cups 3.5
Brown rice, cooked 1 cup 3.5
Bread, whole-wheat 1 slice 2.0
Bread, rye 1 slice 2.0

 

Legumes, nuts and seeds Serving size Total fiber (grams)*
Split peas, boiled 1 cup 16.0
Lentils, boiled 1 cup 15.5
Black beans, boiled 1 cup 15.0
Baked beans, canned 1 cup 10.0
Chia seeds 1 ounce 10.0
Almonds 1 ounce (23 nuts) 3.5
Pistachios 1 ounce (49 nuts) 3.0
Sunflower kernels 1 ounce 3.0

*Rounded to nearest 0.5 gram.

Source: USDA National Nutrient Database for Standard Reference, Legacy Release

Looks delicious, doesn’t it. So what’s the problem? Well, CKD patients are restricted in their diets… and even the permissible foods are restricted as far as amounts we can eat. It all depends upon our most current lab results. Do we need less potassium? Then we need to eat even less potassium rich food. The same is true for all the electrolytes. That means our diets may not contain enough fiber.

CKD is an inflammatory disease. Fiber can lower inflammation. So what’s a CKD patient to do?

My reader was recommended supplements by her doctor. One was Solfi Green, something new to me.

I went to MIMS in the Philippines (while a new site to me, they self-describe as “Asia’s one-stop resource for medical news, clinical reference and education”)  at https://www.mims.com/philippines/drug/info/solfi%20green?type=full  for the ingredients and found this:

Ingredients: Fructose, Mixed Fruit Powder, Mixed Vegetable Powder, Soluble Dietary Fiber, Physllium (sic) Husk, Oat Fiber, Wheat Fiber, Citric Acid, Wheat Grass, Alfalfa, Rooibos Extract, Contains Permitted Food Conditioner.”

Wait a minute, Psyllium Husk? I clearly remember writing that this can cause inflammation of the gastrointestinal tract. We need to decrease, not increase inflammation as CKD patients. I would steer clear of this.

Would my reader need to steer clear if she were a dialysis or transplant patient? Drugs.com at https://www.drugs.com/drug-interactions/psyllium.html  doesn’t seem to think any specific dosage reduction is necessary, but they also don’t mention it can cause inflammation or that it is high in potassium. Dialysis patients, beware. If you’re a transplant, you simply need to watch your labs as you would anyway. Just keep in mind psyllium husk can be both an inflammatory and laxative.

Another supplement suggested to my reader is C-lium fiber. I went directly to their website at http://c-liumfibre.com/faq/index.html#Q15  and found this warning in their FAQ:

“If you have rectal bleeding, history of intestinal blockage, difficulty swallowing, diabetes mellitus, heart disease, hypertension, kidney disease, or if you are on a low-sugar or low-sodium diet, contact your doctor before taking C-Lium Fibre.”

Obviously, my reader has gone to her doctor since these two supplements were prescribed by her doctor. I have to make a confession here. When something is prescribed for me, I research it. If I don’t like what I find, I speak with my doctor. If she can explain in more detail or tell me something that is not in my research which I should be aware of to make an informed decision and it’s all positive, I go with the prescription. If not, well….

Of course, you have to make your own decision, just as I do. Here’s hoping this has helped my reader.

Until next week,

Keep living your life!

Take Good Care of Yourself, Caretakers.

Tonight is New Year’s Eve. We all know what that means: resolutions. While they may be a good idea and we may intend to keep them when we make them, I think we can accept that most of us don’t. So instead of resolutions, I have some recommendations for a special group of people.

I am a Chronic Kidney Disease patient, holding steady at stage 3 for the last decade. While you all know that, I’m not so sure that many of you know that I am also an Alzheimer’s care partner. That’s what the Alzheimer’s Association calls the more commonly used term ‘caretaker.’ I love my husband, but this is hard… harder than I’d expected it to be, even though I’d been a caretaker before.

For those of you not in this position, a caretaker is “one that gives physical or emotional care and support,” according to the Merriam-Webster Dictionary at https://www.merriam-webster.com/dictionary/caretaker.

The Alzheimer’s Association offered me quite a bit of advice about how to preserve my own health while being a care partner. Lori Hartwell’s Renal Support Network does, too. And then there are so many, many other organizations offering advice that always seems to be helpful. Now I offer it as recommendations to you, the care partners of your loved ones.

Why? The Family Caretaker Alliance at https://www.caregiver.org/taking-care-you-self-care-family-caregivers phrases the answer to this question so well:

“On an airplane, an oxygen mask descends in front of you. What do you do? As we all know, the first rule is to put on your own oxygen mask before you assist anyone else. Only when we first help ourselves can we effectively help others. Caring for yourself is one of the most important—and one of the most often forgotten—things you can do as a caregiver. When your needs are taken care of, the person you care for will benefit, too.”

I had trouble with this idea at first, thinking it selfish when it was my husband who needed help – not me. I was wrong. The Mayo Clinic at https://www.mayoclinic.org/healthy-lifestyle/stress-management/in-depth/caregiver-stress/art-20044784 explains why:

As a caregiver, you may be so focused on your loved one that you don’t realize that your own health and well-being are suffering. Watch for these signs of caregiver stress:

  • Feeling overwhelmed or constantly worried
  • Feeling tired often
  • Getting too much sleep or not enough sleep
  • Gaining or losing weight
  • Becoming easily irritated or angry
  • Losing interest in activities you used to enjoy
  • Feeling sad
  • Having frequent headaches, bodily pain or other physical problems
  • Abusing alcohol or drugs, including prescription medications

Too much stress, especially over a long time, can harm your health. As a caregiver, you’re more likely to experience symptoms of depression or anxiety. In addition, you may not get enough sleep or physical activity, or eat a balanced diet — which increases your risk of medical problems, such as heart disease and diabetes.

Hmmm, that would explain the irritability and overeating, I suppose. But I had to do something about this or I’d be as large as my little house soon.

Let’s get back to Lori’s site for a minute. Dr. Michael Fisher guest blogged at https://www.rsnhope.org/rsn-blog/6-tips-to-survive-your-partners-kidney-disease-diagnosis/ and offered the following as one bit of advice:

Enlist friends and family to help you, or hire the help you need. Get a neighbor to drive the kids to and from school or enroll them in an after-school program for help with their homework; hire a housekeeper; negotiate flex-time or permission to work from home; and ask family members and friends to volunteer for regular assistance. This is an all-hands-on-deck occasion!”

He’s right. We now have a house cleaning service every other week, bottled water delivery, and a mobile vet. Decades ago when I was a caretaker for a different loved one and was in a pretty poor financial state, my friends and neighbors took my kids to school and after school activities. Family came on the weekends with marketing they’d done for us and to let me run down to the basement to do the laundry. While money makes it easier to have help, it’s not impossible to ask for help without money behind you.

U.S. News Health’s most important tip for caretakers is:

“If you’ve taken on the role of caregiver, the first thing to do is learn as much you can about your loved one’s disease or illness to know what to expectOtherwise, you’ll be driving blind.

Imagine getting in your car, turning on the ignition, closing your eyes and then driving. What do you think will happen? Before long, you’ll crash into something or someone, resulting in damage and even injuries.

The world’s roadways operate smoothly (most of the time) because drivers know what to expect and follow the rules. Likewise, caregivers who learn more about their care recipient’s disease will be more aware of the challenges that lie ahead.”

You can find them at https://health.usnews.com/health-news/patient-advice/articles/2015/05/01/the-2-most-important-caregiver-tips.

I always go for education first; I was a teacher for over 50 years. But sometimes that just isn’t enough. I know, I couldn’t believe it either when I first realized that. So?  I started listening to the advice about how to take care of my emotions while care partnering. VeryWell Mind at https://www.verywellmind.com/caregiver-support-caregivers-and-stress-relief-3144520 offered the best recommendation for me:

“It may be difficult for you to find time alone, especially if you’re the sole provider of care, but don’t forget that you need to give to yourself in order to have the ability to give to others. However, taking an hour or two for journaling in a coffee shop, seeing a movie by yourself, getting exercise with a long walk, or going to a nearby park and immersing yourself in a good book are all excellent, restorative options that can help you to stave off burnout.”

I found I craved silence… or just listening to the birds or the horses that lived behind my house. When I could leave my husband alone and couldn’t get the silence I needed while being at home, I took off to a coffee shop with my Kindle. It helped. Hopefully these recommendations will help the caretakers among you.

Have a happy and safe New Year’s Eve.

Until next year,

Keep living your life!

Happy Holidays!

The holiday season is upon us full strength right now, but you have Chronic Kidney Disease. You don’t need the stress associated with the holiday season. The National Kidney Fund at https://www.kidney.org/atoz/content/Stress_and_your_Kidneys explains why:

“As the blood filtering units of your body, your kidneys are prone to problems with blood circulation and blood vessels. High blood pressure and high blood sugar can place an additional strain or burden on your kidneys. People with high blood pressure and diabetes are at a higher risk for kidney disease. People with kidney disease are at higher risk for heart and blood vessel disease. If you already have heart and blood vessel disease and kidney disease, then the body’s reactions to stress can become more and more dangerous. Therefore, whether your goal is to prevent heart and/or kidney disease, or improve your health while living with heart and/or kidney disease, managing stress is an important part of maintaining your overall health.”

So what’s a CKD patient to do? First, you need to identify that you are stressed. In an article on caretaker stress at https://www.davita.com/education/ckd-life/caregiver/caregiver-stress-and-chronic-kidney-disease, DaVita outlined some of the symptoms. These are the same whether you’re the patient or the caretaker. I happen to be both a CKD patient and my Alzheimer’s husband’s caretaker, although we call me his care partner as suggested by the Alzheimer’s Association.

Physical signals

  • Inability to sleep or sleeping too much
  • Weight gain or loss
  • Feeling tired all the time
  • Change in posture—walking with your head down or with a stooped posture
  • Chronic headaches, neck pain or back pain

Emotional signals

  • Anger
  • Frequent crying spells
  • Inability to think clearly or concentrate
  • Excessive mood swings
  • Feelings of sadness that don’t go away

Behavioral signals

  • Withdrawing from usual activities and relationships
  • Quitting or changing jobs frequently
  • Becoming more impulsive and over-reacting to things
  • Using alcohol or drugs to feel better

Uh-oh, I recognize quite a few of these in myself. How about you?

Today is the last day of the eight day Chanukah celebration for us and all of you who celebrate this holiday. We usually throw a blowout party for anywhere from 30 to 50 people. But just a couple of months ago, we hosted a blowout pre-wedding potluck party for my daughter and her fiancé … and it was wonderful. Yet, it was clear that we can no longer handle undertaking such large parties. I had expressed my doubts last year about how long we’d be able to keep up the Chanukah party.

I was getting more and more stressed dealing with Bear’s medical issues and my own and then the party, so I did what I consider the logical thing to do, I delegated. We’ll still have the party, but a friend of my daughter’s will be hosting it. Instead of assigning different foods to specific guests, we’ve asked them to let us know what they’re be bringing. No prepping of the house (Shiloh sheds an entire other dog every few days) and no post party clean up. More importantly, no stress. I just bring the religious articles necessary and toss in a batch of cranberry chicken as my food contribution. Easy-peasy.

My very capable neighbor came in with cookies she’d just baked the other day. She knows about Bear’s sweet tooth. We started chatting as we’re wont to do and she brought up the point that she finds delegating stressful. Amy wants to make sure whatever it is that’s being delegated is done and done well, so she has to be careful about who she choices. I see her point, but I think that if you know your friends and family and how responsible (or not) each is, this shouldn’t be a problem.

But enough about me. What else can you do to reduce your stress at this time of year?

One thing is make sure you aren’t overeating. Avoiding comfort eating can be a real struggle. According to Baylor College of Medicine’s Dr. Sreedhar Mandayam in an article at https://medicalxpress.com/news/2017-11-overeating-holidays-bad-kidneys.html,

“For people with kidney disease, even eating normal amounts of food puts stress on their kidneys. If you consume large amounts of carbohydrates, protein or fat the stress on an overworked, half functioning kidney will get even worse and can accelerate your kidney dysfunction.”

How about exercising? This is when I get on the exercise bike and watch a good movie. Why? The Mayo Clinic at  https://www.mayoclinic.org/healthy-lifestyle/stress-management/in-depth/exercise-and-stress/art-20044469 explains far better than I could:

Exercise increases your overall health and your sense of well-being, which puts more pep in your step every day. But exercise also has some direct stress-busting benefits.

  • It pumps up your endorphins. Physical activity helps bump up the production of your brain’s feel-good neurotransmitters, called endorphins. Although this function is often referred to as a runner’s high, a rousing game of tennis or a nature hike also can contribute to this same feeling.
  • It’s meditation in motion. After a fast-paced game of racquetball or several laps in the pool, you’ll often find that you’ve forgotten the day’s irritations and concentrated only on your body’s movements.

As you begin to regularly shed your daily tensions through movement and physical activity, you may find that this focus on a single task, and the resulting energy and optimism, can help you remain calm and clear in everything you do.

  • It improves your mood. Regular exercise can increase self-confidence, it can relax you, and it can lower the symptoms associated with mild depression and anxiety. Exercise can also improve your sleep, which is often disrupted by stress, depression and anxiety. All of these exercise benefits can ease your stress levels and give you a sense of command over your body and your life.

 

Of course, you could give yourself permission to curl up with a good book for half an hour or so. You might like Portal in Time or Sort of Dark Places for sheer escapism or any of the SlowItDownCKD series (including What Is It and How Did I Get It? Early Stage Chronic Kidney Disease) for edifying yourself. Oh, the shameless self-promotion here! All are available on Amazon although,personally, if I’m stressed, I want pure escapism.

 

Until next week,

Keep living your life!

The Dynamic Duo 

Sorry Batman, not yours. I’m writing about Chronic Kidney Disease and diabetes. For a decade, I’ve been told diabetes is the number one cause of CKD. Got it… and (as you know) CKD. Then I learned that CKD can cause diabetes. Ummm, okay, I guess that sort of makes sense. And then, oh my, I developed diabetes. But how? I’d never questioned how that worked before, but I certainly did now.

Let’s go back to the beginning here. First of all, what is diabetes? I included this information in SlowItDownCKD 2013:

“According to MedicalNewsToday at https://www.medicalnewstoday.com/info/diabetes:

‘Diabetes, often referred to by doctors as diabetes mellitus, describes a group of metabolic diseases in which the person has high blood glucose (blood sugar), either because insulin production is inadequate, or because the body’s cells do not respond properly to insulin, or both. Patients with high blood sugar will typically experience polyuria (frequent urination), they will become increasingly thirsty (polydipsia) and hungry (polyphagia).’”

Guilty on all three counts as far as symptoms. It gets worse. I uncovered this fact in SlowItDownCKD 2014:

“According to Diabetes.co.uk at https://www.diabetes.co.uk/how-does-diabetes-affect-the-body.html,

‘The kidneys are another organ that is at particular risk of damage as a result of diabetes and the risk is again increased by poorly controlled diabetes, high blood pressure and cholesterol.’”

This is getting more and more complicated. But again, how is diabetes damaging my kidneys?

It seemed to me that I had just posted a fact about this on SlowItDownCKD’s Facebook page, so I checked. Yep, I did on September 7th.

“Did you know that high glucose levels can make your red blood cells stiffen? This hinders your blood circulation.”

And this affects the kidneys how? Let’s think about this a minute. Way back when I wrote What Is It and How Did I Get It? Early Stage Chronic Kidney Disease, I included this information:

“A renal artery carries the blood, waste and water to the kidneys while a renal vein carries the filtered and sieved waste from the kidneys.”

The American Society of Hematology at http://www.hematology.org/Patients/Basics/ tells us there are four parts of the blood:

  1. Red blood cells
  2. White blood cells
  3. Plasma
  4. Platelets

Hmmm, so red blood cells compose one quarter of your blood and high glucose can make them stiffen. To me, that means a quarter of your blood will be working against you.  Not what we need… especially when we’re already dealing with Chronic Kidney Disease.

Back to my original question (again): How do high glucose levels affect the kidneys?

Thank you to the National Kidney Foundation at https://www.kidney.org/atoz/content/Diabetes-and-Kidney-Disease-Stages1-4 for exactly the answer I was looking for:

  • Blood vessels inside your kidneys. The filtering units of the kidney are filled with tiny blood vessels. Over time, high sugar levels in the blood can cause these vessels to become narrow and clogged. Without enough blood, the kidneys become damaged and albumin (a type of protein) passes through these filters and ends up in the urine where it should not be.
  • Nerves in your body. Diabetes can also cause damage to the nerves in your body. Nerves carry messages between your brain and all other parts of your body, including your bladder. They let your brain know when your bladder is full. But if the nerves of the bladder are damaged, you may not be able to feel when your bladder is full. The pressure from a full bladder can damage your kidneys.
  • Urinary tract. If urine stays in your bladder for a long time, you may get a urinary tract infection. This is because of bacteria. Bacteria are tiny organisms like germs that can cause disease. They grow rapidly in urine with a high sugar level. Most often these infections affect the bladder, but they can sometimes spread to the kidneys.

I would say I’m heart… uh, kidney…broken about this development, but the truth is I’m not. I don’t like it; I don’t want it, but I can do something about it. I’d already cut out complex carbs and sugar laden foods in an abortive attempt to lose weight for my health. Well, maybe my daughter’s wedding on October 6th had something to do with that decision, too.

The point is, I’ve started. I’m aware of the carbohydrates in food and I’m learning how to control my intake of them… just as I’m aware that I have to break in the shoes for the wedding. Something new has to be gotten used to. I’ve had a head start.

Why the emphasis on carbs, you ask. I turned to my old favorite The National Institute of Diabetes, Digestive and Kidney Diseases at https://www.niddk.nih.gov/health-information/diabetes/overview/diet-eating-physical-activity/carbohydrate-counting  for help:

“When you eat foods containing carbohydrates, your digestive system breaks down the sugars and starches into glucose. Glucose is one of the simplest forms of sugar. Glucose then enters your bloodstream from your digestive tract and raises your blood glucose levels. The hormone insulin, which comes from the pancreas or from insulin shots, helps cells throughout your body absorb glucose and use it for energy. Once glucose moves out of the blood into cells, your blood glucose levels go back down.”

If you’ve got diabetes, your body either is not producing enough insulin or not interacting well with the insulin it is producing. Measuring my blood sugar levels when I awaken in the morning has shown me that when I’m sleeping – when I cannot help my blood sugar levels come down by eating protein or exercising, even in my dreams – is when I have the highest blood sugar. During the day I can keep it under control.

And that’s where my medication comes in. The usual – Metformin – can cause nausea, which I deal with more often than not, so that was out. However, a new medication on the market just might do the trick. It’s only been a few days, but I do notice my blood sugar upon waking is getting lower each day. This medication is not a panacea. I still have to be careful with my food, exercise daily, and sometimes counteract a high carb food with a protein. I’m not there yet, but I’m learning.

Until next week,

Keep living your life!

Coming Home

I’m not a joiner. I’ve never been one. That’s why I was so surprised that I joined the American Association of Kidney Patients… and even more surprised to find myself attending this year’s conference in Tampa Bay, Florida. Readers had been suggesting I do so for years, but I’m not a joiner. Let’s change that; I wasn’t a joiner. The AAKP conference made the difference.

What’s that you ask? Of course, you need to know what they are. This is from their website at https://aakp.org/,

THE INDEPENDENT VOICE OF KIDNEY PATIENTS SINCE 1969™

The American Association of Kidney Patients is dedicated to improving the quality of life for kidney patients through education, advocacy, patient engagement and the fostering of patient communities.

Education

The American Association of Kidney Patients (AAKP) is recognized as the leader for patient-centered education – continually developing high quality, professionally written, edited and reviewed educational pieces covering every level of kidney disease.

Advocacy

For nearly 50 years, AAKP has been the patient voice – advocating for improved access to high-quality health care through regulatory and legislative reform at the federal level. The Association’s work has improved long term outcomes in both quality of health and the ability for patients and family members affected by kidney disease to lead a more productive and meaningful life.

Community

AAKP is leading the effort to bring kidney patients together to promote community, conversations and to seek out services that help maximize patients’ everyday lives.

An IRS registered, Sec. 501(C)(3) organization, AAKP is governed by a Board of Directors. The current board is comprised of dialysis patients, chronic kidney disease patients, [Me here: You did notice ‘chronic kidney disease patients,’ right?] transplant recipients, health care professionals and members of the public concerned with kidney disease. The board and membership are serviced by a staff of five employees under the direction of Diana Clynes, Interim Executive Director, at the AAKP National Office located in Tampa, Florida.”

What’s not mentioned here is that the organization was started by only six patients. I find that astounding, but I’ll let them explain their history:

Founded by Patients for Patients

King County Hospital, New York

The American Association of Kidney Patients (AAKP) has a rich history in patient advocacy and kidney disease education. AAKP started in 1969 with six dialysis patients at King County Hospital in Brooklyn, New York. They wanted to form an organization that would elevate the kidney patient voice in national health care arena, provide patients with educational resources to improve their lives and give kidney patients and their family members a sense of community. They met twice a week in the hospital ward and while hooked up to primitive dialysis machines for 12 to 18 hours at a time they brainstormed, researched and eventually formed AAKP.

The group originally called themselves NAPH (National Association of Patients on Hemodialysis, which later changed to AAKP). AAKP joined forces with other patient groups to fight for the enactment of the Medicare End-Stage Renal Disease (ESRD) Program, testifying before congressional committees, seeking public support and creating a newsletter (the forerunner of today’s AAKP RENALIFE) to keep everyone informed. This effort was crowned with success in 1972 when Congress enacted the program that continues to provide Medicare funding for dialysis and kidney transplantation.

After winning the initial and critical battle for the Medicare ESRD Program, AAKP turned its attention to other important issues — the need to establish a secure national organization to preserve the visibility and influence of patients with Congress and to develop national, educational and supportive programs.

Today & Beyond

AAKP has grown into a nationally recognized patient organization that reaches over 1 million people yearly. It remains dedicated to providing patients with the education and knowledge necessary to ensure quality of life and quality of health.”

This former non-joiner has found her association. I originally avoided the conferences because I thought they would be focused only on dialysis and transplant patients. Boy, was I ever wrong. Here are some of the outbreak (small group) sessions that dealt with other aspects of kidney disease:

Social Media (You’re right: I signed up for that one right away since I identify as a CKD awareness advocate.)

Dental Health

How Kidney Disease Impacts Family Members

Managing the Early Stage of CKD

Understanding Clinical Trials

Treatment Options

Staying Active

Veterans Administration

Caregiver’s Corner

Living Well with Kidney Disease

Avoid Infections

Of course, there were many outbreak sessions for dialysis and transplant patients as well. And there were two opportunities to lunch with experts. That’s where I tentatively learned about governmental aspects of our disease. There were opportunities to learn about nutrition, medications, working, and coping. I’ve just mentioned a few of the 50 different topics discussed.

The general sessions, the ones everyone attended, informed us of what the government’s national policy had to do with kidney disease, legislation, nutrition, patient centered care, and innovation in care (Keep an eye out for Third Kidney, Inc.’s August guest blog.).

I have not covered even half of what was offered during the conference. Did I mention renal friendly food was available and you could dialyze near the hotel if need be? The exhibitors went beyond friendly and explaining their products to being interested in who you were and why you were there. This was the most welcoming conference I’d been to in decades.

AAKP President Paul Conway summed up my feelings about the conference when he was interviewed by The Tampa Bay Times on the last day of the conference,

“This meeting is a way for us to bring patients together and educate them on trends that could affect their own health.”

I met so many others who have kidney disease and so many others who advocate for different types of kidney disease and patients’ rights. I was educated about so many areas, especially those I previously had known nothing about, for example, legislation. It was like coming home. Would I attend again? You bet’cha. Would I urge you to attend? At the risk of being redundant, you bet’cha.

I was so excited about AAKP that I almost didn’t leave myself enough space to tell you about yet another freebie. The Book of Blogs: Moderate Chronic Kidney Disease, Part 1 is no longer in print since it has been divided into SlowItDownCKD 2011 and SlowItDownCKD 2012. But I still have a desk copy. Let me know if you’d like it. My only restriction is that you have not received a free book from me before.

Until next week,

Keep living your life!

Eating Makes Me Hungry

I couldn’t figure it out. I had my renal diet down pat (That only took ten years, she thought snidely.) When the foods I’m sensitive to had to be removed from that diet, I worked the new-reduced-possibilities-for-food-choices diet out pretty quickly, too. But then I noticed that I was hungry pretty much only after I ate.

I’d prefer to eat only if I’m hungry, but some of my medications require food first. Okay, so I knew I had to eat at least twice a day and graze several times during the day to keep my blood glucose level. I thought I took care of that by eating a small breakfast, lunch as my main meal when I got hungry, and a much smaller, almost snack type meal for dinner.

So why did eating make me hungry? Was I not taking enough food in? Nope. I counted calories to check and was not much under my allotted 1,200 per day. So what was it?

Women’s Health at https://www.womenshealthmag.com/food/g19920742/foods-that-make-you-hungrier/ named the following seven foods that make you hungrier:

  1. Whole wheat bread
  2. Fruit juices
  3. Egg whites
  4. Green smoothies
  5. Non-fact dairy
  6. Pickles
  7. Whole wheat crackers

Hmmm, between the renal diet and my food sensitivities I don’t eat any of these. Wait, I do eat whole eggs which contain egg whites, but I think Dr. Caspero meant only the whites for the purposes of this list.

Of course, I wanted to know why these foods make you hungrier. This quote is from the same article.

“For the most part, fat, fiber, and protein help with satiation,” says Alex Caspero, R.D. “So foods without those components will likely leave you searching for your next meal in no time.”

Reminder: R.D. means registered dietician.

I don’t eat whole wheat anything because I have sensitivity to it, but doesn’t it have fiber? That’s a yes and no answer. It does have fiber, but is more processed than regular flour which means less fiber. Fiber helps to fill you up. Side bar here:  Did you know that flour of any kind has wheat in it since it’s made from one or more of the three parts of the grain? That’s mean no bread for me.

Nope, Dr. Caspero didn’t answer my question as fully as I wanted it to be answered. Back to the drawing board, boys and girls.

Wait a minute. This from the BBC at http://www.bbc.co.uk/guides/zt22mp3 looks like it’s getting close to answering my question.

“Different types of food we eat affect the brain in various ways. For example, fatty foods trick the brain into believing that you have eaten fewer calories than you actually have, causing you to overeat. This is because fatty foods such as butter and fried foods contain a lot of densely packed energy.

However, other foods give a lasting sense of fullness. Fibre triggers the release of gut hormones that make you feel full. A low fibre diet though, with little or no wholemeal produce or fruit and vegetables, may leave you open to feelings of hunger.

Foods with a low GI (glycaemic index) such as nuts, vegetables and beans release energy more slowly than high GI food such as white bread and sugar. Eating more low GI foods will suppress your hunger by increasing levels of gut hormones that help you feel fuller for longer.”

Foods with a low GI, huh? This brings me back to the lessons from the Diabetes Nutritionist my family doctor sent me to when she discovered I was (and still am four years later) pre-diabetic. Okay, I can take a hint. What are some of these low GI foods?

The American Diabetes Association at http://www.diabetes.org/food-and-fitness/food/what-can-i-eat/understanding-carbohydrates/glycemic-index-and-diabetes.html  was able to help us out here:

“Low GI Foods (55 or less)

  • 100% stone-ground whole wheat or pumpernickel bread
  • Oatmeal (rolled or steel-cut), oat bran, muesli
  • Pasta, converted rice, barley, bulgar
  • Sweet potato, corn, yam, lima/butter beans, peas, legumes and lentils
  • Most fruits, non-starchy vegetables and carrots

Medium GI (56-69)

  • Whole wheat, rye and pita bread
  • Quick oats
  • Brown, wild or basmati rice, couscous

High GI (70 or more)

  • White bread or bagel
  • Corn flakes, puffed rice, bran flakes, instant oatmeal
  • Shortgrain white rice, rice pasta, macaroni and cheese from mix
  • Russet potato, pumpkin
  • Pretzels, rice cakes, popcorn, saltine crackers
  • melons and pineapple”

According the renal diet I follow, the Northern Arizona Council on Renal Nutrition Diet, I could eat all of these foods. According to my food sensitivities, I could only eat oatmeal, some fruits, and vegetables. Maybe that’s why eating makes me hungry.

Take a look at this. Redbook (and to think I smirked at my mom for reading this magazine when I was a teenager) at https://www.redbookmag.com/body/healthy-eating/g2819/foods-that-make-you-hungry/?slide=1 explains about fruit making you feel hungrier:

“’Fruit juice may already be on your no-go list, but if you’re eating more than one serving of the whole variety (i.e. one banana or one cup of berries), you may want to scale back. It may have nutritional benefits, but fruit is not going to help suppress your appetite,’ says Perlmutter. ‘It contains both fructose and glucose, which won’t signal insulin, causing your appetite to rage on.’”

Perlmutter is David Perlmutter, MD, a board-certified neurologist and author of Brain Maker.

Got it: More fiber, less sugar. Now the only question is can I get myself to adhere to that… and can you if you choose to stop being hungrier after eating than you were before.

Talking about magazines, Arizona Health and Living at https://issuu.com/arizonahealthandliving/docs/arizona_health_and_living_magazine__9a2d374f4dffc2 is helping me spread awareness of Chronic Kidney Disease. This is in their June 2018 issue.

 

Guess what I found when I was preparing my non-CKD book for last Thursday night’s reading at our local The Dog Eared Pages Used Book Store. You’re right. It’s a copy of the newly minted (um, printed) SlowItDownCKD 2017. Would you like it? All that I require is your address and that you haven’t received a free book from me before.

Random thought: I cannot believe I just chose a Father’s Day gift for my son-in-law’s first Father’s Day. Add my youngest’s upcoming nuptials and this is a very happy world I live in. Here’s hoping yours is a happy one, too.

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!

All of Me, uh, Us

When I was a little girl, I liked to listen to my father whistle ‘All of Me,’ written by Marks and Simon in 1931 when Charlie, my father, was just 16. Only a few years later, it became a sort of love language for my mother and him. Enter a former husband of my own and my children. When my folks visited from Florida and my then husband’s side of the family journeyed over to Staten Island from Brooklyn to visit them, they all sang the song with great emotion. (By then, Bell’s palsy had robbed my father of the ability to whistle.)

To this day, I start welling up when I hear that song. But then I started thinking about the lyrics:

“All of me
Why not take all of me?”

Suddenly, it popped. For us, those with chronic kidney disease, it should be:

“All of us

Why not take all of us?”

For research purposes. To “speed up health research breakthroughs.” For help in our lifetime. To spare future generations whatever it is we’re suffering… and not just for us, but for our children… and their children, too.

The National Institutes of Health has instituted a new research program for just that purpose, although it’s open to anyone in the U.S. over the age of 18 whether ill with any disease or perfectly healthy. While only English and Spanish are the languages they can accommodate at this time, they are adding other languages.

I’m going to devote most of the rest of this blog to them. By the way, I’m even more inclined to be in favor of this program because they launched on my first born’s birthdate: May 6. All of Us has its own inspiring welcome for you at https://launch.joinallofus.org/

This is how they explain who they are and what they intend to do:

“The goal is to advance precision medicine. Precision medicine is health care that is based on you as an individual. It takes into account factors like where you live, what you do, and your family health history. Precision medicine’s goal is to be able to tell people the best ways to stay healthy. If someone does get sick, precision medicine may help health care teams find the treatment that will work best.

To get there, we need one million or more people. Those who join will share information about their health over time. Researchers will study this data. What they learn could improve health for generations to come. Participants are our partners. We’ll share information back with them over time.”

You’ll be reading more about precision medicine, which I’ve written about before, in upcoming blogs. This is from All of Us’s website at https://www.joinallofus.org/en, as is most of the other information in today’s blog, and makes it easy to understand just what they are doing.

How It Works

Participants Share Data

Participants share health data online. This data includes health surveys and electronic health records. Participants also may be asked to share physical measurements and blood and urine samples.

Data Is Protected

Personal information, like your name, address, and other things that easily identify participants will be removed from all data. Samples—also without any names on them—are stored in a secure biobank.

Researchers Study Data

In the future, approved researchers will use this data to conduct studies. By finding patterns in the data, they may make the next big medical breakthroughs.

Participants Get Information

Participants will get information back about the data they provide, which may help them learn more about their health.

Researchers Share Discoveries

Research may help in many ways. It may help find the best ways for people to stay healthy. It may also help create better tests and find the treatments that will work best for different people.

I’m busy, too busy to take on even one more thing. Or so I thought. When I read the benefits of the program (above) and how easy it is to join (below), I realized I’m not too busy for this and it is another way to advocate for Chronic Kidney Disease awareness. So I joined and hope you will, too.

Benefits of Taking Part

Joining the All of Us Research Program has its benefits.

Our goal is for you to have a direct impact on cutting-edge research. By joining the program, you are helping researchers to learn more about different diseases and treatments.

Here are some of the benefits of participating in All of Us.

Better Information

We’re all human, but we’re not all the same. Often our differences—like age, ethnicity, lifestyle habits, or where we live—can reveal important insights about our health.

By participating in All of Us, you may learn more about your health than ever before. If you like, you can share this information with your health care provider.

Better Tools

The goal of the program is better health for all of us. We want to inspire researchers to create better tools to identify, prevent, and treat disease.

You may also learn how to use tools like mobile devices, cell phones and tablets, to encourage healthier habits.

Better Research

We expect the All of Us Research Program to be here for the long-term. As the program grows, the more features will be added. There’s no telling what we can discover. All thanks to participants like you.

Better Ideas

You’re our partner. And as such, you are invited to help guide All of Us. Share your ideas and let us know what works, and what doesn’t.

Oh, about joining:

Get Started – Sign Up

Here’s a quick overview of what you’ll need to do to join.

1

Create an Account

You will need to give an email address and password.

2

Fill in the Enrollment and Consent Forms

The process usually takes 18-30 minutes. If you leave the portal during the consent process, you will have to start again from the beginning.

3

Complete Surveys and More

Once you have given your consent, you will be asked to complete online health surveys. You may be asked to visit a partner center. There, you’ll be asked to provide blood and urine samples and have your physical measurements taken. We may also ask you to share data from wearables or other personal devices.

Before I leave you today, I have – what else? – a book give away. The reason? Just to share the joy that’s walked into my life lately. It’s easy to share the troubles; why not the joys? If you haven’t received one of my books in a giveaway before, all you have to do is be the first person to let me know you want this copy of SlowItDownCKD 2017.

 

I need to get back to that online health survey for All of Us now.

Until next week,

Keep living your life!

 

Published in: on May 21, 2018 at 10:38 am  Leave a Comment  
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Smoke Gets In Your Hair

Last weekend I was in Las Vegas renewing my vows to Bear as my brother and sister-in-law renewed their vows to each other. It was their 50th year of marriage, our 5th. I listened to what they had to say to each other during the ceremony and realized that was what I would have said to Bear on our 50th, if we were young enough to be able to count on having a 50th. And then I began to wonder how many people do reach this milestone in their lives.

More than the ceremony, it was the smoke in the casinos, the restaurants, the shops, and the cabs that got me to thinking about this. Even our non-smoking rooms had the scent of cigarettes. I know how much harm smoking can do to my kidneys, but what was this second hand smoke doing to them? If it clung to our hair and clothes, what else was it doing to us?

The very minute I was told I have CKD, I stopped the social smoking I had been doing. I would be surprised if I smoked a whole pack of cigarettes each month back then. But I wasn’t taking any chances on not raising my GFR. It was 39% at diagnose, so the smoking had to stop. Yet, it wasn’t until this past weekend that I became concerned about second hand smoke.

It appears that I’m not the only one concerned about second hand smoke. The National Kidney Fund (NKD) at https://www.kidney.org/blog/staying-healthy/second-hand-smoke-may-be-harmful-kidneys offers the following:

“Secondhand smoking was defined as living with at least 1 person who smoked, or having an elevated level of cotinine (a breakdown product of nicotine) in their blood. The researchers found that active smoking was associated with slightly lower kidney function and higher amounts of protein in the urine. Interestingly, secondhand smoke exposure was also associated with slightly lower kidney function in this study even after taking [into] account differences in age, sex, weight, demographics and parental education level. Differences in kidney function observed in the study were relatively small, but these small differences could have important effects on risk of developing hypertension and chronic kidney disease.”

What makes it worse is that hypertension, or high blood pressure, is one of the two leading causes of CKD. So second hand smoke could lead to CKD itself and/or one of the leading causes of CKD. Either way, it sounds like a losing proposition to me.

Of course, I needed to know more about cotinine. The Centers for Disease Control and Prevention (CDC) at https://www.cdc.gov/biomonitoring/Cotinine_FactSheet.html was able to help me out here:

“Cotinine is a product formed after the chemical nicotine enters the body. Nicotine is a chemical found in tobacco products, including cigarettes and chewing tobacco. Measuring cotinine in people’s blood is the most reliable way to determine exposure to nicotine for both smokers and nonsmokers exposed to environmental tobacco smoke (ETS). Measuring cotinine is preferred to measuring nicotine because cotinine remains in the body longer.

How People Are Exposed to Cotinine

Nicotine enters people’s bodies when they smoke or chew tobacco. When exposed to ETS from nearby smokers, smaller amounts of nicotine enter the body of the nonsmoker. Workers who harvest tobacco and produce tobacco products can also be exposed through their skin.”

While I don’t usually write about younger people and Chronic Kidney Disease, this quote from the Johns Hopkins Bloomberg School of Public Health at https://www.jhsph.edu/news/news-releases/2013/navas-acien-smoking-may-impact-kidney-function-among-adolescents.html caught my eye:

“’Tobacco use and exposure to secondhand tobacco smoke are major health problems for adolescents, resulting in short-term and long-term adverse health effects,’ said Ana Navas-Acien, MD, PhD, senior author of the study and an associate professor with the Bloomberg School’s Department of Environmental Health Sciences. ‘In this nationally representative sample of U.S. adolescents, exposure to tobacco, including secondhand smoke and active smoking, was associated with lower estimated glomerular filtration rates—a common measure of how well the kidneys are working. In addition, we found a modest but positive association between serum cotinine concentrations, a biomarker of tobacco exposure, among first-morning albumin to creatinine ratio. These findings further support the conclusion that tobacco smoke may damage the kidneys.’”

Lower estimated glomerular filtration rates???? No, thank you. I rarely go to casinos or any other place that allows smoking for that matter. I just don’t like the odor. Now I have a much more important reason to avoid such places.

Switching topics here. Something else I rarely mention is CKD cookbooks, probably because I don’t cook that often and firmly believe CKD patients need to eat according to their lab results. Months ago I received one such book in the mail and carefully explained to the author’s representatives that I don’t review CKD cookbooks on the blog. It’s an attractive book and always caught my eye just lying there on the kitchen counter for the last several months. During one of those in-the-house-trying-to-recoup-my-energy days after we got back from Las Vegas, I did the logical thing and picked it up to read.

Susan Zogheib, a registered dietitian with a Master’s in Health Science fulfilled my CKD cookbook dreams in her The Renal Diet Cook for the Newly Diagnosed in that she suggested repeatedly that we, as CKD patients, must work on our diets with our doctors and/or renal dietitians, especially if we have high blood pressure or diabetes. I also like that she clearly made the point that you have to take into account the stage of your CKD, your labs, your concurrent medical problems, and more. This, while including fairly easy recipes for some good looking meals. I never thought I’d like a cookbook. Well, there was the Betty Crocker one pre-CKD when I was a young bride still in college.

My 71st birthday is Friday. Naturally that means it’s time for a book giveaway. My birthday equals your gift. Three is my favorite number, so the first three book giveaway virgins (haven’t won a book before) to offer another bit of information about second hand smoke or CKD cookbooks win one of my CKD books. Sounds fair to me.

Until next week,
Keep living your life!

Banting

I can just about hear you asking, “What in heaven’s name is banting?” You know I like to read Victorian murder mysteries, right? The one I’m reading now is Murder on the Minneapolis by Anita Davison. In it, she has one character discuss a method of losing weight by strict eating limitations publicized by William Banting. I find it amusing that he was a celebrated undertaker, not that this had anything to do with the dietary restrictions.

According to Wikipedia – which is open to public editing –

“In 1863, Banting wrote a booklet called Letter on Corpulence, Addressed to the Public… which contained the particular plan for the diet he followed. It was written as an open letter in the form of a personal testimonial. Banting accounted all of his unsuccessful fasts, diets, spa and exercise regimens in his past, then described the dietary change which finally had worked for him, following the advice of a physician. His own diet was four meals per day, consisting of meat, greens, fruits, and dry wine. The emphasis was on avoiding sugar, saccharine matter, starch, beer, milk and butter. Banting’s pamphlet was popular for years to come, and would be used as a model for modern diets…. Initially, he published the booklet at his personal expense. The self-published edition was so popular that he determined to sell it to the general public. The third and later editions were published by Harrison, London. Banting’s booklet remains in print as of 2007, and is still available on-line. …He undertook his dietary changes at the suggestion of Soho Square physician Dr. William Harvey, who in turn had learnt of this type of diet, but in the context of diabetes management, from attending lectures in Paris by Claude Bernard.”

It’s starting to sound familiar, isn’t it? As Chronic Kidney Disease patients, and certainly if you’re also diabetic, we’re often told by our doctors to lose weight.

Have you heard of the Keto Diet? As a matter of fact, the app for that was included in last week’s blog. That’s one way to lose weight, but it’s too protein and fat heavy for CKD patients. Another way is to count carbohydrates or Bant.

I find it fascinating how the things I’m interested in seem to dovetail sometimes. For example, Chronic Kidney Disease, losing weight, Victorian murder mysteries, and banting.

I know. We need to back track a bit. Let’s start with carbohydrates. What are they anyway? According to the Merriam-Webster Dictionary at https://www.merriam-webster.com/dictionary/carbohydrate , they are:

“any of various neutral compounds of carbon, hydrogen, and oxygen (such as sugars, starches, and celluloses) most of which are formed by green plants and which constitute a major class of animal foods”

Here’s a list of carbohydrates from The American Diabetes Association at http://www.diabetes.org/food-and-fitness/food/what-can-i-eat/understanding-carbohydrates/carbohydrate-counting.html:

• grains like rice, oatmeal, and barley
• grain-based foods like bread, cereal, pasta, and crackers
• starchy vegetables like potatoes, peas and corn
• fruit and juice
• milk and yogurt
• dried beans like pinto beans and soy products like veggie burgers
• sweets and snack foods like sodas, juice drinks, cake, cookies, candy, and chips

Now that we have a definition and examples of carbohydrates, why limit them? The MayoClinic at https://www.mayoclinic.org/healthy-lifestyle/weight-loss/in-depth/low-carb-diet/art-20045831 has that one covered.

“Your body uses carbohydrates as its main fuel source. Complex carbohydrates (starches) are broken down into simple sugars during digestion. They’re then absorbed into your bloodstream, where they’re known as blood sugar (glucose). In general, natural complex carbohydrates are digested more slowly and they have less effect on blood sugar. Natural complex carbohydrates provide bulk and serve other body functions beyond fuel.

Rising levels of blood sugar trigger the body to release insulin. Insulin helps glucose enter your body’s cells. Some glucose is used by your body for energy, fueling all of your activities, whether it’s going for a jog or simply breathing. Extra glucose is usually stored in your liver, muscles and other cells for later use or is converted to fat.

The idea behind the low-carb diet is that decreasing carbs lowers insulin levels, which causes the body to burn stored fat for energy and ultimately leads to weight loss.”

Wait a minute. What are these “complex carbohydrates” they mention? This is what I found on MedlinePlus at https://medlineplus.gov/ency/imagepages/19529.htm:

“Complex carbohydrate foods provide vitamins, minerals, and fiber that are important to the health of an individual. The majority of carbohydrates should come from complex carbohydrates (starches) and naturally occurring sugars, rather than processed or refined sugars, which do not have the vitamins, minerals, and fiber found in complex and natural carbohydrates. Refined sugars are often called ‘empty calories’ because they have little to no nutritional value.”

Got it. Complex carbohydrates provide what our bodies need, but too much of them can raise our blood glucose levels or turn to fat.

If there are complex carbohydrates, does that mean there are simple ones, too? Healthline (Thank you again for including this blog among the six best kidney blogs of 2016 & 2017, Healthline.) at https://www.healthline.com/health/food-nutrition/simple-carbohydrates-complex-carbohydrates#2 was succinct in describing these:

“Carbohydrates are made up of three components: fiber, starch, and sugar. Fiber and starch are complex carbs, while sugar is a simple carb. Depending on how much of each of these is found in a food determines its nutrient quality.”

Just in case you’re not sure which foods to avoid, Everyday Health at https://www.everydayhealth.com/diet-nutrition/diet/good-carbs-bad-carbs/ has a beginner’s list for us:

• Soda
• Candy
• Cookies
• Pastries and desserts
• Sweetened beverages, such as lemonade or iced tea
• Energy drinks
• Ice cream

Before you ask, fruits and low fat or nonfat milk do contain simple carbohydrates, but these are healthy for you. You still have to include the milk in your phosphorous count on the renal diet.

This is amazing! Some blogs just flow while I get to the point of just about tearing my hair out to write others (Hey, stress is not good for CKD.) This one flowed.

Congratulations to Christine Barnard from South Africa. She was the first person to let me know she’d read last week’s blog. Instead of winning just one book, she won four: SlowItDownCKD 2012; The Book of Blog: Moderate Stage Chronic Kidney Disease, Part 2; SlowItDownCKD 2015; and SlowItDownCKD 2016. Why? Because she mentioned that there are few sources of Chronic Kidney Disease information in South Africa. Christine, please be sure to email me your physical address. Use SlowItDownCKD@gmail.com.

Until next week,
Keep living your life!