Missing the Connection

During this second week of National Kidney Month, we have another reader directed blog. She had stumbled across The Long Awaited Sulfa Blog and had some questions about it and NAC. Hold on, I’ll get to NAC in a moment. Let’s start with sulfite, which I had always thought was not the same as sulfa. Did our reader mistype? Her verbatim question was, “Have you heard anything about NAC and CKD with sulfite sensitivity?”

According to MedicineNet at https://www.medicinenet.com/script/main/art.asp?articlekey=27721:

“Sulfite sensitivity: Adverse reactions of an allergic nature to sulfites. Sulfites occur in fermentation and also occur naturally in a number of foods and beverages including wine. Sulfites are used for their preservative properties. Sulfite sensitivity occurs most often in asthmatic adults — predominantly women. It is uncommon in preschool children. Adverse reactions to sulfites in nonasthmatics are rare. Sulfite sensitivity reactions range from mild to severe and may include skin, respiratory, or gastrointestinal signs and symptoms. Bronchoconstriction with wheezing is the most common sensitivity response in asthmatics.”

While I do know this reader is a woman, I do not know if she is asthmatic or a wine drinker.

Let’s move along to NAC. Healthline at https://www.healthline.com/nutrition/nac-benefits#section12 (Yes, that is the same Healthline that chose SlowItDownCKD as best kidney blog two years in a row.) tells us, it is N-Acetyl Cysteine and explains what this supplement is and what it can do for you. I added asterisks next to definitions you may need.

“Cysteine is a semi-essential amino acid.

It’s considered semi-essential because your body can produce it from other amino acids, namely methionine and serine. It becomes essential only when the dietary intake of methionine and serine is low.

Cysteine is found in most high-protein foods, such as chicken, turkey, yogurt, cheese, eggs, sunflower seeds and legumes.

N-acetyl cysteine (NAC) is a supplement form of cysteine.

Consuming adequate cysteine and NAC is important for a variety of health reasons — including replenishing the most powerful antioxidant in your body, glutathione. These amino acids also help with chronic respiratory conditions, fertility and brain health.

Here are the top 9 health benefits of NAC.

  1. Essential for Making the Powerful Antioxidant Glutathione

NAC is valued primarily for its role in antioxidant production.

Along with two other amino acids — glutamine and glycine — NAC is needed to make and replenish glutathione.

*Glutathione is one of the body’s most important antioxidants, which helps neutralize free radicals that can damage cells and tissues in your body.

It’s essential for immune health and fighting cellular damage. Some researchers believe it may even contribute to longevity ….

Its antioxidant properties are also important for combatting numerous other ailments caused by oxidative stress, such as heart disease, infertility and some psychiatric conditions….

  1. Helps With Detoxification to Prevent or Diminish Kidney and Liver Damage

NAC plays an important role in your body’s detoxification process.

It can help prevent side effects of drugs and environmental toxins….

In fact, doctors regularly give intravenous (IV) NAC to people with an acetaminophen overdose to prevent or reduce kidney and liver damage ….

NAC also has applications for other liver diseases due to its antioxidant and anti-inflammatory benefits ….

  1. May Improve Psychiatric Disorders and Addictive Behavior

*NAC helps regulate levels of glutamate — the most important neurotransmitter in your brain….

While glutamate is required for normal brain action, excess glutamate paired with glutathione depletion can cause brain damage.

This may contribute to mental health conditions, such as bipolar disorder, schizophrenia, obsessive-compulsive disorder (OCD) and addictive behavior….

For people with bipolar disease and depression, NAC may help decrease symptoms and improve your overall ability to function. What’s more, research suggests that it may play a role in treating moderate to severe OCD ….

NAC supplements can also help decrease withdrawal symptoms and prevent relapse in cocaine addicts ….

  1. Helps Relieve Symptoms of Respiratory Conditions

NAC can relieve symptoms of respiratory conditions by acting as an antioxidant and expectorant, loosening mucus in your air passageways.

As an antioxidant, NAC helps replenish glutathione levels in your lungs and reduces inflammation in your bronchial tubes and lung tissue.

People with chronic obstructive pulmonary disease (COPD) experience long-term oxidative damage and inflammation of lung tissue, which causes airways to constrict — leading to shortness of breath and coughing.

NAC supplements have been used to improve COPD symptoms, exacerbations and lung decline ….

Those with chronic bronchitis can also benefit from NAC.

Bronchitis occurs when the mucous membranes in your lungs’ bronchial passageways become inflamed, swell and shut off airways to your lungs….

By thinning mucus in your bronchial tubes and boosting glutathione levels, NAC may help decrease the severity and frequency of wheezing, coughing and respiratory attacks ….

In addition to relieving COPD and bronchitis, NAC may improve other lung and respiratory tract conditions like cystic fibrosis, asthma and pulmonary fibrosis, as well as symptoms of nasal and sinus congestion due to allergies or infections ….

  1. Boosts Brain Health by Regulating Glutamate and Replenishing Glutathione

NAC’s ability to replenish glutathione and regulate brain glutamate levels can boost brain health.

*The brain neurotransmitter glutamate is involved in a broad range of learning, behavior and memory actions, while the antioxidant glutathione helps reduce oxidative damage to brain cells associated with aging….

Because NAC helps regulate glutamate levels and replenish glutathione, it may benefit those with brain and memory ailments ….

NAC supplements appear to improve both dopamine function and disease symptoms such as tremors ….

  1. May Improve Fertility in Both Men and Women

Approximately 15% of all couples trying to conceive are affected by infertility. In almost half of these cases, male infertility is the main contributing factor ….

Many male infertility issues increase when antioxidant levels are insufficient to combat free radical formation in your reproductive system. The oxidative stress can cause cell death and reduced fertility ….

In some cases, NAC has been shown to improve male fertility….

In addition, NAC may improve fertility in women with polycystic ovary syndrome (PCOS) by inducing or augmenting the ovulation cycle ….

  1. May Stabilize Blood Sugar By Decreasing Inflammation in Fat Cells

High blood sugar and obesity contribute to inflammation in fat tissue.

This can lead to damage or destruction of insulin receptors and put you at a higher risk of type 2 diabetes ….

  1. May Reduce Heart Disease Risk by Preventing Oxidative Damage

Oxidative damage to heart tissue often leads to heart disease, causing strokes, heart attacks and other serious conditions.

NAC may reduce heart disease risk by reducing oxidative damage to tissues in your heart ….

It has also been shown to increase nitric oxide production, which helps veins dilate and improves blood flow. This expedites blood transit back to your heart and can lower your risk of heart attacks ….

  1. Ability to Boost Glutathione Levels May Improve Immune Function

NAC and glutathione also boost immune health.

Research on certain diseases associated with NAC and glutathione deficiency suggests that immune function might be improved — and potentially restored — by supplementing with NAC….

High levels of NAC in your body may also suppress HIV-1 reproduction.

For your body to make the amino acid cysteine, you need adequate amounts of folate, vitamin B6 and vitamin B12. These nutrients can be found in beans, lentils, spinach, bananas, salmon and tuna.

While most protein-rich foods, such as chicken, turkey, yogurt, cheese, eggs, sunflower seeds and legumes, contain cysteine, some people choose to supplement with NAC to increase their cysteine intake.

NAC has low bioavailability as an oral supplement, meaning that it’s not well absorbed. The accepted daily supplement recommendation is 600–1,800 mg of NAC ….”

Okay, I don’t get it. Have I missed something about the connection between sulfite sensitivity and NAC? If you can find what I missed, please let us know.

Ah, if only I could have been more helpful.

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!

 

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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Running on Empty

For the last two weeks, I’ve not only been a Chronic Kidney Disease patient, but also a bronchitis patient and I am tired. I’m at the point where I can do a little something, say a load of laundry, and then it’s back to bed for a while. Or maybe I can make a meal for Bear (Poor husband, he has sinusitis.), but then back to bed for a while. I know I’m always tired when I’m recuperating, but once and for all, I want to know why.

You don’t have to tell me; I’ll go back to the beginning. I looked for a definition of bronchitis and – I kid you not – found the following one from The Merriam Webster Dictionary at https://www.merriam- webster.com/dictionary/bronchitis: “acute or chronic inflammation of the bronchial tubes.”

We know from the glossary in What Is It and How Did I Get It? Early Stage Chronic Kidney Disease that acute means, “Extremely painful, severe or serious, quick onset, of short duration; the opposite of chronic,” whereas chronic is, “Long term, the opposite of acute.” But “bronchial tubes” in the definition of bronchitis?  Oh, come on. How is that going to help?

Let’s jump back to my English teacher training at Hunter College a millennium ago.  Well, it feels like a millennium ago although it was really only five decades or so ago. That’s where I learned that ‘ial’ is a suffix (a group of related letters at the end of a word that changes its meaning) that means of or about, although The Free Dictionary at thefreedictionary.com/-ial tells me “characterized by” has been added to the definition since I graduated all those years ago.

Wait a minute. I remember quoting The Mayo Clinic at http://www.mayoclinic.com/health/bronchitis/DS00031 on bronchitis when I wrote The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2 – which I still intend to separate into two more manageable books if I can just stop getting sick.

“Bronchitis is an inflammation of the lining of your bronchial tubes, which carry air to and from your lungs. Bronchitis may be either acute or chronic.

Often developing from a cold or other respiratory infection, acute bronchitis is very common. Chronic bronchitis, a more serious condition, is a constant irritation or inflammation of the lining of the bronchial tubes, often due to smoking.

Acute bronchitis usually improves within a few days without lasting effects, although you may continue to cough for weeks. However, if you have repeated bouts of bronchitis, you may have chronic bronchitis, which requires medical attention. Chronic bronchitis is one of the conditions included in chronic obstructive pulmonary disease (COPD).

Treatment for bronchitis focuses on relieving your symptoms and easing your breathing.”

That clears up what bronchitis is, but why-oh-why am I so tired as I recuperate? Is it the coughing? The inflamed bronchi?

I turned to Verywell Health at https://www.verywell.com/acute-bronchitis-treatments-770331 looking for an answer. This site is comprised of “experienced doctors, nurses, patient advocates, and other experts, but may be vetted for accuracy by board-certified physicians” according to their webpage. This is what they had to offer:

“Acute bronchitis will make you very tired. This is due to both the infection and the persistent cough. It is important to rest as much as possible when you are sick. Although it may be difficult to sleep well when you have a cough, try not to exert yourself any more than is absolutely necessary so your body has adequate time to recover.”

Well, that’s stating the obvious. That first ten days I was a slug in our bed. Bear, even with his sinusitis, was waiting on me. He said it wasn’t that hard since I only ate so I’d have something in my stomach before taking my medications. I had to remind myself to drink, too.

I’d thought I’d take advantage of being in bed sick by watching movies and reading. Hah! I couldn’t concentrate, my head hurt, and I just wanted to stop coughing.

My daughters call me every day. We never decided upon that or made it a rule, they just do and I revel in it. Yet, I felt so bad that I asked them to text me instead so I wouldn’t have to talk.

I think we can understand how the cough could keep me awake which would make me very tired, but what about the infection? How did that add to the fatigue? Of course, we need to keep in mind that CKD itself can cause fatigue.

According to ABC News in Australia at http://www.abc.net.au/news/health/2015-08-06/how-does-your-immune-system-help-you-fight-colds-and-flu/6650768:

“What’s making you feel lousy?

The symptoms you experience when you come down with a cold or flu are not only the result of the infection, they are also the result of your body’s immune response to the infection.

For example, Dr Burns says: ‘Fever is the body’s response to the virus. Increasing body temperature can inactivate the virus.’

When you get an infection, as well as white cells your body also activates other systems including cytokines (chemical messengers) and the complement system (a series of proteins designed to kill infections).

These trigger inflammation and can cause symptoms like redness, warmth, swelling, pain. So your runny nose is actually caused by a local inflammatory response to the virus.”

So it’s as simple as that. My body was tired from fighting the infection. I guess the easiest answer is sometimes the correct one.

We have been so busy being sick in my house that we’ve ignored both Easter and Passover this year. I hope you haven’t and if you celebrate, it’s been a warm, family oriented celebration for you.

By the way, we have our very first grandchild – a boy – who was born March 30th. You’re right. Of course we have to have a book give away to celebrate! Be the first to wish us Mazel Tov – that means congratulations or best wishes in Yiddish – and win yourself a copy of SlowItDownCKD 2016. As usual, the contest is only open to those who haven’t won a book giveaway before.

I have a friend, one very dear to my heart, who also ends her missives to me with, “Blessed be, my friend.” I don’t think she’d mind my sharing that sentiment with you.

Until next week,

Keep living your life!