Father’s Day Equality Questions

Here’s hoping your Father’s Day was as much fun as ours was. By the way, Bear  – being the manly man he is – started the day by vacuuming.  I was impressed.

We were lucky enough to have almost all our children here except for Nima, who lives in New York.  We missed you, sweetie.  As it was, Abby had to leave early since she teaches blues dancing on Sunday nights and Sean had to come late due to work. 

I’d suggested we make this a day for all the foods Bear doesn’t eat anymore because they’re not on my renal diet.  He is wonderfully supportive of me, you know.

His requests: beer brats (I got to soak them!), potato salad (thank you, Kelly) , beer to drink (we’re such big drinkers that almost the entire case of beer bought for the wedding guests and left over is still sitting in the pantry), a dessert from Bear’s family called (I am not making this up) You’re-lucky-if-there’s-any-left made by Lara and root beer floats. Thanks for the makings for that and the tortilla chips I forget to get, Abby.

I just had to stick my two cents in by adding guacamole and chips, and fresh cherries. Since I couldn’t eat most of this food and Abby doesn’t like most of this, I also made turkey spaghetti sauce and angel hair spaghetti for us.

To our delight, everyone still here after dinner agreed they wanted to watch the movie Bear chose, “Red,” despite the fact that it was targeted to the over 50s.  I would not change my combined family of adult children for any other family in the world.

One step-daughter’s boyfriend did the grilling for us while the other changed our air conditioner filter. Why would anyone build a house with these filters on a ten foot ceiling? That’s when I started to notice the differences between the men and the women.

We women did not do any of the outside or maintenance jobs, although the men jumped right in to help with the cooking and clean up. Our guys are good ones and have accepted that there is no such thing as women’s work and men’s work, but have we women? And what does that have to do with Chronic Kidney Disease anyway?

Funny you should ask because I actually have an answer.  In an abortive attempt to clean off my desk this morning, I came across the March issue of Neprology News & Issues that I’d picked up at the last renal conference I attended. Being a firm believer in multi-tasking – after all, I was doing the laundry and overseeing the yard maintenance at the same time I was cleaning my desk - I decided to flip through it while I waited for a call from The National Institute of Health.

Right there on page 20, I found the following sentence, “However, both sexes experienced increased risks of all-cause mortality, cardiovascular mortality and ESRD with  lower estimated glomerular filtration rate and higher albuminuria.”

Let’s backtrack a little. Mortality deals with death, cardiovascular mortality with death from diseases of the heart and blood vessels including those in the kidneys, ESRD is End Stage Renal Disease, glomerular filtration rate and albuminuria are used to judge the degree of kidney function decrease.

There was only one thing wrong with this statement of equality as I saw it.  What did that “However” deal with?  I looked further back in the paragraph and found that a study had been preformed at the Johns Hopkins Bloomberg School of Public Health and the Chronic kidney Disease Prognosis Consortium which found that “… the overall risks of all-cause mortality were higher in men at all levels of kidney function.” Oh, I was confused!

I finally figured out that men were at higher risk of any medical cause of death whether they had kidney disease or not, while women had heightened mortality only if they had kidney disease. So, men and women aren’t equal?

My research sensors started tingling. What else was different about men and women with Chronic Kidney Disease?

According to a study published in US National Library of Medicine, National Institutes of Health at
http://www.ncbi.nlm.nih.gov/pubmed/9641172
, “This exploratory analysis of the MDRD study indicates a slower mean GFR decline in women as compared with men. The slower mean GFR decline and suggestive evidence of a lesser beneficial effect of the low protein diet and low blood pressure interventions in women suggest that gender differences should be considered in trials of the effects of these interventions on the progression of renal disease.” This is an older study (1998) and deals with gender differences in trials.  MDRD means modification of diet in renal disease. So, the study deals with whatever gender differences are associated with adhering to the renal diet.

The 2007 article Prevalence of chronic kidney disease in population-based studies: Systematic review by Qiu-Li Zhang^* and Dietrich Rothenbacher which appears at
http://www.biomedcentral.com/1471-2458/8/117
, concludes with the following sentence: “Accurately detecting CKD in special groups remains inadequate, particularly among elderly persons, females or other ethnic groups such as Asians.”

So first, it is suggested that women be included in CKD trials; then we’re told it’s difficult to get information about women with CKD.

Aha!  An article about a current study from the same Johns Hopkins Bloomberg School of Public Health and the Chronic Kidney Disease Prognosis Consortium (CKD-PC) mentioned above is posted at
http://www.sciencedaily.com/releases/2013/01/130130132417.htm
. It establishes that men and women are equal as far as Chronic Kidney Disease, ” ‘Our results contrast with some previous studies suggesting that the association of estimated glomerular filtration rate with mortality is weaker in women. We found the association between chronic kidney disease and mortality risk to be as strong in women as in men. Low estimated glomerular filtration rate or albuminuria should be considered at least as potent a risk factor in women as it is in men,’ said Josef Coresh, MD, PhD, MHS, the Consortium’s principal investigator and professor in the Bloomberg School’s Department of Epidemiology. ”

On another note, Dr. A. Narva of the National Institutes of Health gave me some really good news today.  Although they’re not necessarily advertised off the reservations, most reservations have CKD education programs included in their diabetes programs. I know I’m not responsible for getting CKD education on the reservations, but I definitely felt a sense of relief knowing that the information is available there.  I will continue to hunt for the few reservations without the information available and thank Dr. Narva for the referrals he offered me.

As for the book, I think I’ve lost track of sales.  They seem to be constant and holding their own.  Do I urge you to buy a copy for someone who is newly diagnosed? Absolutely.  Remember: digital and print versions are available at Amazon.com and B&N.com.  If you’d like a signed copy, contact me at myckdexperience@gmail.com. Should you know someone who needs it but can’t afford it, please forward his/her information to me.  The same for practices that need a copy.

Until next week,

Keep living your life!

Keep That Liver Lively

It feels so good to be (relatively) healthy again. I’ve spent the last several weeks being tested, running to doctors, and feeling like I just plain didn’t want to move… not even for a good cup of coffee.  I like the way I feel now.  Maybe I rest more than I’ve been used to, but I get to do whatever I want again.  That’s the way to live.  I like it so much that I intent to keep my life this way.

And that’s why I’m taking the series of Hepatitis B inoculations that are recommended for anyone with a compromised immune system. Chronic Kidney Disease presents us with one of those. Aren’t we just the lucky ones (she wrote with a keyboard that dripped sarcasm)?

“Hepatitis B is one type of hepatitis – a liver disease – caused by the hepatitis B virus (HBV). Hepatitis B spreads by contact with an infected person’s blood, semen or other body fluid. An infected woman can give hepatitis B to her baby at birth,” according to MedlinePlus, a service of the U.S. National Library of Medicine, National Institutes of Health located online at:
http://www.nlm.nih.gov/medlineplus/hepatitisb.html
.

Let’s backtrack for a little etymology here.  The Online Etymology Dictionary at
http://etymonline.com/index.php?allowed_in_frame=0&search=hepatitis&searchmode=nl
 shows the following: “hepatitis (n.)  1727, coined from Greek hepatos, genitive of hepar “liver,” from PIE root *yekwr- (cf. Sanskrit yakrt, Avestan yakar, Persian jigar, Latin jecur, Old Lithuanian jeknos “liver”) + -itis “inflammation.” While this is probably too much information, we can see that the term comes from the Greek for liver and the Latin for inflammation, and was first commonly used in 1727. The key word here? Liver.

Okay then, what’s the big deal with the liver you’re probably asking. While it performs over 500 different functions to keep your body going, one of its primary functions is to filter your blood – just like your kidneys.  If your kidney function is already compromised, you’ve got to be careful not to let your liver function become compromised, too.

We’ve all heard the stories about people with an alcohol dependency dying of cirrhosis – permanent scarring of the liver.  This is a Bubba Miseh. That’s Yiddish for an old wives’ tale.  You can have liver damage from any number of causes. Hepatitis B is one of them.

“Hepatitis B is a serious liver infection caused by the hepatitis B virus (HBV). For some people, hepatitis B infection becomes chronic, leading to liver failure, liver cancer or cirrhosis — a condition that causes permanent scarring of the liver.”  That’s from the Mayo Clinic at:
http://www.mayoclinic.com/health/hepatitis-b/DS00398
.  I especially recommend their site because it is written in the English we all know and is easily understood.

According to the handout from the U.S. Department of Health and Human Services’ Center for Disease Control and Prevention which I was given by my doctor’s medical assistant, the inoculations come in sets of three.  I’ve had the first and was told to come back in a month for the second, with the third scheduled for a month after the second.  In other words, they are spaced over a period of six months.

But what if my primary care doctor hadn’t recommended these to me, how would I know if I have Hepatitis B?  According to MedicineNet.com at
http://www.medicinenet.com/hepatitis_b/article
, “Acute hepatitis B is the period of illness that occurs during the first one to four months after acquiring the virus. Only 30% to 50% of adults develop significant symptoms during acute infection. Early symptoms may be non-specific, including fever, a flu-like illness, and joint pains. Symptoms of acute hepatitis may include:

• fatigue,
• loss of appetite,
• nausea,
• jaundice (yellowing of the skin and eyes), and
• pain in the upper right abdomen (due to the inflamed liver).”

Those are fairly common symptoms for many illnesses and as many as half the people with this virus may not know they have it.  I might have been one of that 50%.  So might you.

For chronic (long term) Hepatitis B, like Chronic Kidney Disease, there are no symptoms until the damage is done and the liver starts to fail.

Am I urging you to be vaccinated?  No, you’re quite capable of making up your own mind.  Besides, as I keep mentioning, I’m not a doctor.  Did I start the Hepatitis-B inoculations?  Absolutely!  Life is sweeter than it’s ever been.  I want it to go on and on.

Talking about life going on, the project to bring Chronic Kidney Disease to the Native American reservations has a name: SlowItDown.  You can expect to see both a Facebook page and a Twitter account with the same name this week.

The National Kidney Foundation asked me to guest blog for them this month and I discussed the project there, too. The address for this is:
http://nkfstayinghealthy.wordpress.com/2013/06/06/what-is-it-and-how-did-i-get-it-early-stage-chronic-kidney-disease-experiences/
  The NKF expects to promote it on their own Facebook page tomorrow. While this is not the first time they’ve asked me to write for them, each time they do I understand the honor it is and I thank them for the opportunity to spread CKD information via their site.

You already know DaVita (DaVita.com) has offered to supply Chronic Kidney Disease Educators to the tribes within sixty miles of Phoenix.  I have been speaking with the Health Directors of several tribes, but need help getting on the reservations.  I’ve found one or two reservations with Diabetes Education Program that we could easily piggyback on, but none with Chronic Kidney Disease Education Programs.  My appeal to my readers? Please, if you know anyone who is Native American, have him/her email me at myckdexperience.com or ask them for their number or email address and send it to me.

It’s funny: this blog started as publicity for the book and yet I hardly mention it any more.  Thank you to those of you who have bought or recommended the book. Thanks to some lovely people I met at Landmark Worldwide (formerly Landmark Education) the book is now in British Columbia and at the Evans Community Army Hospital in Colorado.  Any way this news can be spread is a good way in my book.  Oh, I meant that literally and figuratively!

Until next week,

Keep living your life!

Coffee, The Elixir of The Gods (Or Did I Just Make That Up?)

With all that’s going on in my life and in the world, I awoke today thinking, “Coffee, today’s blog is going to be about coffee!”  First thing I did was make the coffee (my turn today) and then pop back into bed with Bear and check Facebook.

And there it was, right in front of me.  And now, here it is, right in front of you. Mark Rosen shared MedicalPk’s coffee post (
http://www.medicopk.com/health-benefits/some-surprising-health-benefits-of-coffee/
).  Mark originated The Kidney Disease Ideas and Help Page I follow on Facebook and MedicalPk is a medical blog for students.  Look at all the benefits of coffee mentioned in this chart!  I made that a very large reproduction so you could read it. I wasn’t so sure this could all be true since I remembered the old adage, “If it sounds too good to be true, it probably is.” *Notice, the article also mentions the negatives of coffee so look at the website.

Of course, as Chronic Kidney Disease patients, we can’t run wild in our pursuit of the perfect cup of coffee and how often we can have it. It’s 16 ounces (two cups) maximum for me so I want to have the best taste I can. Coffee Masters’ Jamaican Me Crazy is my favorite.  We discovered it while choosing our wedding cake at Bakery-Wee in Glendale and immediately ordered a ten pound bag.  I sort of, maybe, kind of knew that our wedding guests were not going to drink that much coffee.  Hence, almost two months later, there it is – waiting for me – on the kitchen counter next to the coffee machine everyday.

But it’s become one of those once-in-a-while-heaven-descends treats for me. I haven’t quite figured out how it can have the “richest, sweetest essence of the darkest tropical island rum” without containing alcohol, despite what it says on the package. That’s a topic for another blog.

Going a step further in my coffee research, I found an article at http://www.medicalnewstoday.com/articles/257888.php that explains the benefits of Greek coffee and how that works.  The part that intrigued me was this:

“The endothelium is a layer of cells that lines the blood vessels, which is impacted by lifestyle habits and aging. The researchers focused on coffee because earlier research has proven that moderate coffee intake may decrease the risk of coronary heart disease, they [sic]} wondered whether it could have a positive impact on other areas of endothelial health.”

According to the article based on the findings which were published in Vascular Journal earlier this year, it did. If you look at the chart, you’ll see heart disease mentioned as one the ailments coffee may help prevent there, too.

Another article, this one from Digestive Disease Week, offered more good news about coffee:

“Coffee consumption helped protect against the autoimmune liver disease known as primary sclerosing cholangitis (PSC), a disorder of the bile ducts that causes inflammation and obstruction and that can lead to transplantation or death.”

This one is discussed on MedpageToday at:
http://www.medpagetoday.com/MeetingCoverage/DDW/39292
.  On the chart, liver cirrhosis is mentioned as another ailment coffee may help prevent.

There’s a wonderful slide show of both the merits and drawbacks of coffee consumption at:
http://www.medscape.com/features/slideshow/coffee?src=ptalk#12
.  I urge you to see this for yourself. On this slideshow, not only are the benefits mentioned in the chart about Parkinson’s disease, gout, cancer, diabetes, and heart disease also noted, but there are also slides about improving glucose metabolism, promoting weight loss in the overweight (obviously, you need to drink more than the two cups a day I do), lessening of the risk of developing depression, slowing the progress of Hepatitis C, benefitting dry eye syndrome, and preventing MRSA infections (those are the antibiotic resistant ones).

Coffee does initially raise blood pressure, but it also has the potential to lower it long term… one of life’s little dichotomies. Among the other drawbacks of my favorite beverage are the obvious ones: it can contribute to anxiety, insomnia and tremors (so that’s why my mother and her father had these.  Or was it the Parkinson’s disease that seems to run in the family?) Coffee can exacerbate withdrawal symptoms and there is the potential for it increasing the risk of glaucoma.

The article I liked the best during my research is at:
http://bodyodd.nbcnews.com/_news/2012/11/20/15309215-coffee-helps-you-see-the-bright-side
.  It offers a detailed explanation of how dopamine is elevated by drinking coffee.  In layman’s terms, that means coffee can make you feel good.  As a non-drinker, non-smoker, I can personally attest to the fact that my two cups of coffee per day make me feel great… and not simply in terms of energy.

Talking about coffee, yesterday the Transplant Community Outreach from Facebook invited me to a lunch gathering of people from different parts of Arizona and California. I write KIDNEY MATTERS for the group so they knew I wasn’t a transplant.  I marveled as they ate pretty much whatever they wanted.  The conversations centered on their various transplants and other diseases, but it was so definitely not a pity party.  These people realized they were on their second or third chances and were enjoying life tremendously.  Thank you for inviting me, Janet Peralta.

Kidney educators are waiting to start their kidney education classes on the local Native American reservations.  I am still waiting to get them on the reservations.  If you can think of any access at all, please let me know.  There is nothing like saving a life… even indirectly.

The book has been introduced to British Columbia via Patti Telford and Colorado’s Evans Community Army Hospital via Deanna Leclair.  Thank you both for being the cause of these new avenues for getting the information where it’s needed.  And thank you LandmarkEducation for giving me the opportunity to get this information to places I hadn’t even realized it was needed.

Until next week,

Keep living your life!

Stop It Before It Starts

First things first: thank you to Bear and every other veteran – living or not – for the sacrifices you made for the rest of us.  I wasn’t quite sure I believed in the military until I watched the attacks on 9/11… while my children were in the city.  Then I knew.  That day, soldiers and police officers became the most respected people in my world. It’s been close to a dozen years, but I still find myself weeping when I think of it.  If this is post traumatic stress for me, what is it like for our returning soldiers?

There is no way to slide into a blog from that so I won’t. There was a question on What Is It And How Did I Get It? Early Stage Chronic Kidney Disease‘s Facebook page (
https://www.facebook.com/WhatHowearlyCKD
) about the inoculations that are suggested for those who have Chronic Kidney Disease.

Before we even get to the different kinds of inoculations, why do we need any in the first place?  According to
http://www.davita.com/kidney-disease/overview/treatment-overview/immunizations–which-shots-you-need-and-why/e/4837
:

“Immunizations may prevent people from contracting other diseases, infections and viruses. The immune system of a person with chronic kidney disease (CKD) becomes weakened, making it difficult to fight off many diseases and infections. Patients with CKD may become more susceptible to illness and even death if they do not receive regular immunization treatment. Getting the proper immunizations is an essential part of a person’s kidney care.”

I have been on bed rest for several days, ever since I showed up at my primary care physician’s office for my Hepatitis-B vaccine and was told I’d have to come back for that at a later date.  I either had pneumonia or bronchitis. I didn’t know.  I thought I’d just been pushing my physical limits and needed to take some time off. Why mention that here?  Consider it proof that our immune systems become weaker with CKD.

I clearly remember (because it was only a few years ago), becoming sick for only a day at a time.   Then I noticed that maybe once a year I’d end up with the flu which had me down for about ten days.  This year, it’s been ten days with the flu, ten days with sinusitis, and now whatever this is.  You know I’ll be running to Dr. Zhao’s office for the inoculations as soon as my lungs are clear!

Now that I’ve convinced you they’re necessary, what are the inoculations?  There are three that DaVita suggests. The first, as mentioned, is Hepatitis-B. Let’s go back a little bit and define the disease. “Hepatitis B is a serious liver infection caused by the hepatitis B virus (HBV). For some people, hepatitis B infection becomes chronic, leading to liver failure, liver cancer or cirrhosis — a condition that causes permanent scarring of the liver. ” That’s what the Mayo Clinic has to say about it.  You can read more at:  
http://www.mayoclinic.com/health/medical/IM02250
.

A Hepatitis-B infection may lead to kidney failure. What’s worse is that some adults never exhibit the symptoms of this disease.  Your kidneys are already compromised, as is your immune system. To the best of my knowledge, the drugs to treat Hepatitis-B may also adversely affect the kidneys.

Think about it: your liver and your kidneys are the two most important blood filters you have. We already know we need to maintain as steady a blood pressure in the kidneys as we can to do no more damage to them.  The liver does this by releasing angiotensin which constricts your blood vessels. Don’t forget the liver helps maintain your blood sugars.  If it can’t do that due to infection,  kidney function can be further reduced. The liver also filters toxins and drugs from the blood.

The liver performs quite a few of the metabolic functions necessary to keep you alive, much less healthy, certain of which affect the kidneys. Metabolic means the “chemical processes occurring within a living cell or organism that are necessary for the maintenance of life,”  according to www.thefreedictionary.com. If your kidneys are already compromised and then your liver is, what happens to your blood pressure and blood sugars without any kind of regulation?  I know I’m already having problems with both and don’t need any more. This much I knew.

As I researched, I discovered that the liver also converts blood ammonia – which is toxic -  into urea. Remember the kidneys turn urea into urine and that the amount of urea directly affects our kidney function.  What I didn’t know is that Hepatitis-B is one of the infections that can inflame  the glomeruli.  These are the parts of the kidneys that do the filtering.

I’m sure you’ve all heard of cirrhosis of the liver.  Guess what.  It can lead to kidney failure.  Get the vaccine!

I’ve spent most of the blog on the Hepatitis-B because it’s relatively new and I, for one, didn’t know much about it.  I’ve already written several blogs about the flu vaccine, so I’ll just add this tidbit from
http://www.esrdnetwork6.org/utils/pdf/immunizations.pdf
, which is the website of the Southeastern Kidney Council, Inc.”

• Cardiovascular disease is the leading cause of death among patients with CKD
•  Infectious diseases are the Infectious diseases are the second most common cause of death among cause of death among patients with CKD

That statement speaks for itself.

Ah, now the third vaccination: Pneumococcal.  Sounds terrible, but it’s really just the pneumonia inoculation. MedicineNet at
http://www.medicinenet.com/pneumococcal_vaccination/article.htm#who_should_consider_pneumococcal_vaccination
  tells us this is,

” a method of preventing a specific type of lung infection (pneumonia) that is caused by pneumococcus bacterium. There are more than 80 different types of pneumococcus bacteria — 23 of them covered by the vaccine. The vaccine is injected into the body to stimulate the normal immune system to produce antibodies that are directed against pneumococcus bacteria.”

Naturally, the next question is why CKD patients? Dr. Joseph A. Vassalotti, Chief Medical Officer of the National Kidney Foundation and Dr. William Schaffner, President of the National Foundation for Infectious Diseases have explained it better than I ever could:

“One reason people with CKD are at greater risk for pneumococcal disease is because kidney disease can weaken the immune system and make the body more susceptible to infection.

2 Doctors and researchers have found that infections in people with CKD such as those caused by pneumococcal disease are worse and can be more serious than in people who don’t have CKD.

3 In some people, infection can cause death.”

You can read more about that at:
http://www.kidney.org/atoz/content/Pneumococcal.cfm

It’s time for me to crawl back into bed.

Until next week,

Keep living your life!

Audrey Hepburn: “Nothing is impossible, the word itself says ‘I’m possible’!”

What an incredible weekend!  My youngest daughter, Abby Wegerski,(who I also have to thank for the title of today’s blog) and I attended a LandmarkEducation course called ‘Communication: The Access to Power.’  As  I’ve already written, my LandmarkEducation (www.LandmarkEducation.com) project for the Self Expression and Leadership Program I’m enrolled in there is to develop self-sustained, free Chronic Kidney Disease information programs on the Native American  reservations out here in Arizona by the end of August.  Of course, I had no idea who was going to do the education when I got this bright idea.

As of this weekend’s course, the project is now to develop self-sustained, free Chronic Kidney Disease information programs globally within the next two years. And again, I had no idea who was going to be doing the educating.

But I do now.  In pursuing the local project, I’ve been calling individual nephrologists to see if they could donate time to educate.  They are extremely busy people. You can get that when you realize 1 out of every 9 people in the United States has Chronic Kidney Disease.  To date, only one – Dr. Jamal Atalia who happens to be another LandmarkEducation graduate – has offered to do so, even though it would have to be on a limited basis given the amount of time he has to devote to the people he’s already treating.

I decided to attend the fairly new Kidney Smart Classes offered by DaVita to see if that would lead to some referral for CKD educators for my project.  Yes, Davita IS a dialysis provider, but also invested in the humanity of staving off dialysis as long as possible.  On their homepage at www.DaVita.com  you can find education about both early and late stage CKD, and dialysis, as well as information on just what CKD is and help in locating a doctor.

This is how I described this company in What Is It And How Did I Get It? Early   Stage Chronic Kidney Disease: “I’d been told about http://www.DaVita.com at my doctor’s office. This was a website from a private company that provided both the much dreaded dialysis and the much needed kidney education. Maybe that wouldn’t be so foreboding for me. I went to the website and clicked on every possible   thing I could click on. This was a little better, but it was a dot com – a for profit site. Maybe it was one that offered all this information so that when you needed dialysis, you would turn to them since they had been so helpful all along. And what, if anything, was wrong with that?”

I have changed my opinion of DaVita drastically as of this afternoon.  Remember my reason for attending their new Kidney Smart Classes was to find an instructor or two who might be willing to volunteer his time to my project.  I started getting uncomfortable that there really wasn’t any integrity in attending the classes under false pretenses, although I was definitely going to attend.

In an effort to restore my integrity, I emailed the person I thought was going to be the instructor, Melanie Follett, the Kidney Smart Care Coordinator of DaVita Westside Division (The Phoenix Valley is usually divided into the east and west valley.) to see if she would be willing to teach some classes on the reservation.  I knew it was a long shot.

It turned out that she was the wrong person to approach although she was thrilled enough with my project to immediately email back saying she had forwarded my email to the right person – Annette Folmer who is the Certified Kidney Smart Educator-Care Coordinator of DaVita Westside Division.

Annette called me in record time.  What came out of this conversation is that she had the Chronic Kidney Disease educators available and ready to work.  When I told her about expanding the project so that it was global within the next two weeks, she offered to provide the educators nationally.  In addition, she requested that I contact DaVita’s Media (read press releases) person in regard to publicizing the project.

So Friday, I had no clue as to how to provide Chronic Kidney Disease educators for this project other than calling nephrologists (doctors who specialize in the kidneys and high blood pressure) one by one.  Today, Monday evening, there is an entire organization of Chronic Kidney Disease educators available and eager to disseminate this information for free on the reservations and in the rest of the nation.  All I can say is WOW!

 

I see the other aspect of the short term project is gaining access to the reservations.  Somehow, I’m just not worried about that after this amazing opportunity with the educators.  I intend to contact the Tribal Councils and am so very open to any suggestions you may have.  I urge you to email them to me at: myckdexperience@gmail.com.

But wait!  That’s not all.  Locally, people have been searching for live support groups and coming up empty.  You know you can find the online support groups in the blog role, but sometimes people want the live interaction.

It’s here, now, thanks to DaVita’s new Kidney Friends and Family Social Support Group.  This is the information from the flyer Annette just sent me:

Kidney Friends and Family Social Support Group

                                                                                                                                                                               Thursday, June 13 from 3:00pm-4:30pm

                                                                                                                                                                Arrowhead Lakes Dialysis 20325 N. 51^st avenue # 184

                                                                                                                                                                                           Glendale, Arizona  85308

                                                                                                                                                                          June’s Education Topic: Medication Assistance

This group is open to kidney patients, along with their families, friends, and care partners at no cost. This is a positive, friendly, educational gathering that meets monthly.

                       

For more information please contact: Annette Folmer 480-208-1170

I am overwhelmed with gratitude at how quickly this project is falling into place.  I clearly remember how frightened I was when I was first diagnosed and thought it meant I was either immediately going to be tethered to a dialysis machine for the rest of my life or die immediately. That fear is simply no longer necessary in this world.  There are people determined to make certain no one feels that way… and I’m one of them.

Until next week,

Keep living your life!

Eat And Be Well

Here’s hoping all you mothers – and fathers being both mother and father to your children – had a wonderful Mother’s Day. There are just too many such fathers to mention individually here.

I don’t know where the idea originated that you had to give birth to your children to be their mother, but I see examples every day of non-birth mothers being terrific mothers.  That one’s for you, sweet Sharon.

My step-daughter Kelly and her fiancé Sean made a Mother’s Day bar b q and invited her sister Lara, along with Lara’s love, my daughter Abby, and Bear and me.  That’s my kind of Mother’s Day.  The only thing that could have made it better is if my NY daughter, Nima, had been there.

As usual, Sean asked me first how I needed my chicken seasoned and if the piece he had chosen for me was small enough. That kind of thoughtfulness is a given with this gracious man.  Alex brought the sweetest watermelon… something else I could eat.  Someone brought potato salad which I admit I had a teaspoon of “just to taste,” and someone else brought potato chips.  I had no trouble eating my limited permitted share of those.  Kelly even made a cup of coffee just for me.

I see today’s blog is going to be about food.  Keeping that in mind, I found this general guideline to healthy eating at: http://healthfinder.gov/HealthTopics/Category/health-conditions-and-diseases/diabetes/eat-healthy

The Basics

Your body needs the right vitamins, minerals, and other nutrients to stay healthy. A healthy diet means that you are eating:

• Vegetables, fruits, whole grains, and fat-free or low-fat milk products
• Seafood, poultry, lean meats, eggs, beans, peas, seeds, and nuts

Limit foods high in:

• Cholesterol, sodium (salt), and added sugars
• Tans fats – Trans fats may be in foods like cakes, cookies, stick margarines, and fried foods.
• Saturated  fats – These fats come from animal products like cheese, fatty meats, whole milk, and butter.
• Refined grains – Food products with refined grains include white bread, noodles, white rice, and flour tortillas

 

What I found interesting here is that what the general population is urged to eat is not that much different than what we early stage Chronic Kidney Disease sufferers are told to eat.  We do have to limit the fruits and vegetables to three different sized portions of each.  The portion depends on the particular fruit or vegetable. We also need to cap our limited types of seafood, poultry, lean meats, and eggs to five ounces per day.  As for seeds and nuts, those are no-no’s for us.

Look at the foods the government feels we should avoid.  Look familiar?  Take a look at the renal diet your nutritionist gave you and you’ll find them on that as foods to limit (or avoid), too.

You probably noticed the above information was taken from a website dealing with diabetes.  That’s because diabetes is one of the leading causes of Chronic Kidney Disease and vice-versa. That’s another reason to watch your intake of foods with a high glycemic index – the indicator of how quickly your blood sugar rises after eating the food – which includes not only what we usually consider sweets, but ice cream, too.

You know we need to stay as healthy as possible, including keeping our weight down. One way to do that is NOT skipping breakfast.  Why?  This is how study researcher Dr. Tony Goldstone, M.D., Ph.D. of Imperial College London in the UK explains it:

“Through both the participants’ MRI results and observations of how much they ate at lunch, we found ample evidence that fasting made people hungrier, and increased the appeal of high-calorie foods and the amount people ate.”

You can read more about the study that led him to come to this conclusion at:
http://www.medicalnewstoday.com/articles/251709.php

You need to understand that skipping breakfast (literally breaking the fast you incur while you sleep) is a form of fasting.  If you take medication that requires food along with it, you’re also delaying the effects of the medication since you’re not taking it until later in the day.

Here’s an interesting finding on a study publicized in The Journal of Renal Nutrition in 2009:

“Long-term fish consumption was independently associated with improved kidney function among elderly individuals, a finding that extends the current knowledge regarding the benefits of fish intake on human health.”

But we knew that, didn’t we?  Take a look at:
http://www.jrnjournal.org/article/S1051-2276(12)00181-1/abstract
for more, slightly technical, information on this study.

By the way, are you taking Omega 3 (fish oil) supplements?  There’s a theory it helps retard the progress of CKD. I’ll been taking it all five years since my diagnosis and I’m still at stage 3A.

While that’s something I would suggest – and please remember:  I’m not a doctor.  You need to run my suggestions by your nephrologist before you even think of acting on them! – something I will  caution you  about is grapefruit or grapefruit juice.  Let’s go back to Healthfinder.gov at:
http://www.healthfinder.gov/News/Article.aspx?id=670988&source=govdelivery#.ULPppKAFqXI.twitter
for the information about this:

“Even small amounts of grapefruit or grapefruit juice have the potential to cause sudden death, acute kidney failure, respiratory failure, gastrointestinal bleeding and other serious side effects when paired with these medications. Included are certain cholesterol-lowering medications, blood pressure drugs, cancer treatments and antibiotics such as erythromycin, the researchers said.”

And star fruit (carambola)!! Avoid it at ALL costs, because the cost could be your life.  It is toxic to people with Chronic Kidney Disease.  It’s a tropical fruit so chances are you’re not going to run into it too often.  I am so glad I wasn’t adventurous enough to try it in Nigeria all those years ago.  My daughter, Nima, did try it when our Nigerian friends (Remi Okunoye and her children Moriyika, Oliaton, and Benga) were living with us back on Staten Island, but she immediately spit it out.  She was a young child, not used to the taste, and it was too strong for her. Now that she’s at risk for CKD since I have it, I’m glad she did that.

I took the following quote from an article beguilingly entitled It’s not just what you eat, but when you eat it: “When a species’ typical daily rhythm is thrown off, changes in metabolism also happen. For example, in people, night shift workers have an increased prevalence of obesity and metabolic syndrome, and patients with sleep disorders have a higher risk for developing obesity. Also, less sleep means more weight gain in healthy men and women.”  This is discussed more technically at:
http://www.eurekalert.org/pub_releases/2012-11/uops-inj110612.php

Enjoy what you do feel safe eating – and there is quite a bit of that type of food available, you know.

Until next week,

Keep living your life.

The Less Than Sexy Sinuses

Happy birthday TODAY to my first born, Ms. Nima Beckie, whose name means (in Tibetan)  the sun up in the sky.  You were, and always will be, my miracle. I was never quite sure I would be pregnant and give birth in this life until there was you.  Thank you, my love.

This weekend was also the celebration of our first month of married life and I spent it in bed, but not the way you might think.  I have a whopping sinus infection: bacterial, non-contagious infection.  First of all, no one (and I mean no one) will believe me that it is non-contagious.

I wasn’t even sure that I believed it, so I researched it – of course. Viral commonly means an airborne virus which doesn’t respond to drugs since it needs a host to live in , and so, is already  inside our cells by the time we become ill. One way we spread this type of infection is by sneezing and coughing in public.

Bacteria, on the other hand, do respond to drugs like the 500 mg. of ciprofloxacin I’m taking twice a day for ten days. (I ran this prescription from my primary care doctor by both the pharmacist and the nephrologist to make certain the drug wouldn’t harm my kidneys… and I trust my primary care doctor!)  Bacteria need no host and are cells in their own right.

Now, can I please leave the house?  Or will you at least visit me?  Actually, once I could crawl out of bed, I found myself busily updating and vetting another book I’m working on with pretty good results.  I also found things in the house I didn’t even know were missing.  Not bad for someone who hates to be down and out for the count. I’m not so good at being a patient.

Sinuses are the area of the body that give Bear and his family trouble, not me or mine.  I like trying new things, but this is not exactly what I had in mind.  The obvious question is, “How did I suddenly develop an infection in this part of the body of all places?”.

According to MedlinePlus at
http://www.nlm.nih.gov/medlineplus/sinusitis.html
,

“Sinusitis can be acute, lasting for less than four weeks, or chronic, lasting much longer. Acute sinusitis often starts as a cold, which then turns into a bacterial infection. Allergies, pollutants, nasal problems and certain diseases can also cause sinusitis.”

Well, I have allergies.  And sinusitis just means an inflammation of the sinuses – which is what an infection is.

But what, if anything, does this have to do with Chronic Kidney Disease?  You’ve got to remember that your immune system is already compromised.  Your kidneys aren’t working at 100% (see your GFR).  Your medications have to be monitored and sometimes modified.  If your body is not releasing the meds at full capacity via the kidneys that aren’t working at full capacity, you may need to take less of them, lower the strength, or lengthen the time between doses.

Back to the sinuses.  I knew where they were because I could feel them when I first realized I was ill.  I’m still not that quick to realize when I’m ill and was at my primary care doctor’s office for the required annual Medicare Wellness visit (How’s that for irony?) when she quickly changed it to a non-Wellness visit and asked me to schedule another Wellness visit.

The Mayo Clinic has this to say about acute sinusitis:

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

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

You can read more at:
http://www.mayoclinic.com/health/acute-sinusitis/DS00170
.

Before we get any more detailed here, a few reminders (taken from What Is It And How Did I Get It? Early Stage Chronic Kidney Disease’s Glossary):

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

Antibiotic  – medication used to treat infection.

Chronic  -  Long term, the opposite of acute.

Chronic Kidney Disease – damage to the kidneys for more than three months, which cannot be reversed but may be slowed.

GFR – Glomerular filtration rate which determines both the stage of kidney disease and how well the kidneys are functioning.

Medicare – U.S. government health insurance for those over 65, those having certain special needs, or those who have end stage renal disease.

Nephrologist – renal or kidney and hypertension specialist.

Hmmm, I hadn’t realized how often I use technical terms which have become part of my personal vocabulary.  I’ll make a determined effort to be aware of that in the future.

I intend to have the acute kind of sinus infection.  I can’t see making this a lifelong practice, so I’ll try to avoid it.  I’m not quite sure how just yet.  Here are some suggestions I found at:
http://www.essortment.com/prevent-sinus-infection-62926.html
, which calls itself “your source for knowledge.”  I am not familiar with the site, although I did like that they differentiate between viral and bacterial sinusitis.

“Be sure to blow your nose frequently to prevent a mucous buildup. Apply a warm, but not hot, washcloth or compress to your face for five or ten minutes at a time, perhaps twice a day, to help loosen stuffy passages. Very warm showers or baths likewise can help to release tight muscles and open the sinuses to let them flow. Enjoy hot tea on a regular basis. Filled with flavenoids and antioxidants that can track down and kill bacteria, tea’s steam can open up and loosen your sinus passages to prevent problems from developing.”

This is the simplest and most direct picture of infected sinuses I could find.  I felt as if I had swollen glands, could barely talk, could not stop blowing my nose, and (the worst part for a CKD patient who avoids NSAIDS) had a headache that stopped me cold.

Not quite half way into the antibiotic regime, I’m ready to go conquer the world again… or at least work on getting CKD information on the reservations, but something tells me to hold off another day or so.  Oh, right, it’s Bear.  He keeps saying it’s a better idea to deal with this now than keep having to deal with it in the future.  I married such a smartie!

Until next week,

Keep living your life.

The Wild West Isn’t So Wild These Days

Things are settling down now.  We had our first sleep-late-and- have-fruit-laden- pancakes (from scratch) since the wedding furor started.  Not bad!  Less than a month and we’re back to ourselves.  Of course, we did have several years to try it out so we knew what ‘ourselves’ meant first.

I’m not sure I mentioned this, but when people asked what we’d like for our no gifts wedding, I always answered, “Please, donate to a charity in our names if you feel you must give a gift.” Thank you, family, for taking me up on that.  Cousins Paul Brosnan, Marlene Mines, Flo Knudsen, and Mikki Knudsen (yes, the award winning children’s author – that Mikki Knudsen) donated to different cancer research units. Cousins Rich and Sheila Slotnick donated to The National Kidney Fund. 

How generous is that?  You are a wonderful family!  Peckolick side, we are so looking forward to seeing you at next year’s Florida reunion.

I’ve mentioned that I’m a LandmarkEducation graduate several times on the blog.  I’m taking a course now that involves creating a sustainable project.  Naturally, I chose something to do with Chronic Kidney Disease.  It’s easy for me to do whatever it is myself, but this requires my not doing it, but rather setting it in place for other people to do, benefit from, and keep going.

What I want to do is bring CKD education and testing to the many Native American reservations here in Arizona, and then in the country, and finally, the world.  Native Americans have a higher incidence of CKD.  Some of the reservations do have Diabetes Prevention Programs in place now.  Diabetes is the primary cause of CKD, but CKD may cause diabetes, too.

Native Americans have the highest rate of diabetes in the world, yet they comprise only 1.5% of this country’s population. This is striking when you think about it.  Do you?  Has it ever crossed your consciousness?  I know it hadn’t crossed mine.  

Well, there are many tribal members who also have never thought about it. Someone needs to bring this to their attention, educate them, and maybe even prevent them from developing CKD which would prevent them from End Stage Kidney Disease (stage 5 when you need dialysis or a transplant – it’s when your kidneys stop functioning at all).

My thinking is that the educational aspect will lead the participants to be tested for something they probably have never heard of – CKD. While Caucasians are usually diagnosed around age 60, Native Americans develop diabetes most often in their mid-thirties.  All those extra years to be at a substantial risk of CKD!

I am requesting that anyone who knows anyone who is somehow involved with the reservations contact me. Words aren’t any good without action.  I’m looking for people who can help me get this started by introducing me to someone on the reservation.

This is a chart showing the high incidence rates of CKD among different races.  Notice, it only tracks up to 2009. 

You can see the chart and more information about the prevalence of CKD in different races and age groups at: http://kidney.niddk.nih.gov/kudiseases/pubs/kustats/

According to DaVita, “The rate of end stage renal disease among Native Americans with diabetes is six times higher than among non-Native Americans.” You can read more about Native Americans, diabetes, and Chronic Kidney Disease at:
http://www.davita.com/kidney-disease/causes/assessing-your-risk/native-americans-and-chronic-kidney-disease-ckd/e/5007

I found this abstract of a study at:
http://www.keepthefaith1296.com/parkinsons/reducing-the-burden-of-chronic-kidney-disease-among-american-indians-MTgzMzQyNDI=.htm

“In order to address the growing burden of CKD, the Indian Health Service established the Kidney Disease Program to improve the screening of and the management of diabetics with CKD. Routine reporting of eGFR, yearly monitoring of protein excretion, utilization of renin-angiotensin system (RAS) antagonists, and aggressive control of blood pressure were implemented in association with enhanced patient and provider education. By 2006, 82% of hypertensive diabetics were receiving a RAS antagonist. Implementation of these efforts has been associated with a 31% decrease in ESRD incidence among AIs/ANs with diabetes. This program of improvements in CKD care implemented by a federal agency serving a high-risk population with limited resources may be a useful model for others.”

It sounds like exactly what is needed.  There’s only one problem.  Not one of the many Native Americans I’ve encountered while teaching at Phoenix College, Gateway Community College, Estrella Mountain Continuing Education Center, or three different campuses of Glendale Community College has ever heard of this program.  Not one of the many Native Americans I’ve met during film, television, or  commercial shoots, auditions, or live theater performances out here has ever heard of the program. Not one of the many Native Americans I’ve met at the countless dances I’ve attended here or the numerous LandmarkEducation courses has ever heard of this program.

After more research, it became clearer to me why.  Already underfunded, the Indian Health Service – which, by the way, is a division of The United States Department of Health and Human Services – has been hit hard this year by budget cuts.  So we have budget cuts to an already underfunded program.  I guess there is a need for outside help. I may have neglected to mention it, but another part of my idea is that it be free. 

Arizona is a fairly large state with over 6% of the population being Native American.  There are 21 federally recognized tribes here with two others petitioning for recognition as of March, 2007.  According to http://www.aaanativearts.com/tribes-by-states/arizona_tribes.htm, these are the federally recognized tribes as of that same date:

• Ak Chin Indian Community of the Maricopa (Ak Chin) Indian Reservation
• Cocopah Tribe of Arizona
• Colorado River Indian Tribes of the Colorado River Indian Reservation (Arizona and California)
• Fort McDowell Yavapai Nation
• Fort Mojave Indian Tribe (Arizona, California and Nevada)
• Gila River Indian Community of the Gila River Indian Reservation
• Havasupai Tribe of the Havasupai Reservation
• Hopi Tribe of Arizona
• Hualapai Indian Tribe of the Hualapai Indian Tribe Reservation
• Kaibab Band of Paiute Indians of the Kaibab Indian Reservation
• Navajo Nation (Arizona, New Mexico and Utah)
• Pascua  Yaqui Tribe of Arizona
• Quechan Tribe of the Fort Yuma Indian Reservation (Arizona and California)
• Salt River Pima-Maricopa Indian Community of the Salt River Reservation
• San Carlos Apache Tribe of the San Carlos Reservation
• San Juan Southern Paiute Tribe of Arizona
• Tohono O’odham Nation of Arizona (formerly the Papago)
• Tonto Apache Tribe of Arizona
• White Mountain Apache Tribe of the Fort Apache Reservation
• Yavapai-Apache Nation of the Camp Verde Indian Reservation
• Yavapai-Prescott Tribe of the Yavapai Reservation

Wow!  I have my work cut out for me… and so do you, help me get this sustainable program started.

Until next week,

Keep living your life!

Guilty Pleasures

I read this phrase somewhere and that’s what today blog is: my guilty pleasure.  It’s my pleasure because my mission is to keep informing about Chronic Kidney Disease and it’s my guilt because I indulge myself in using my own life experiences to ease into this information.

I did promise to write about our wedding reception today.  The first thing that comes to mind is music, lots of it.  Abby Wegerski, Nima Rosensfit (my biological daughters) and Michelle Davis (Cheryl’s daughter and my daughters’ cousin) – all professional singers at one time or another – regaled us with “Going To The Chapel of Love.”  My Arizona buddy, Karla Lodge (another professional singer) blew us away with her own solo.

I don’t know how it happened, but I sang “Hava Nagila,” in a full, clear voice.  That’s odd because I gave up singing since I could no longer stay on key and my voice had become thin and reedy.  It certainly wasn’t that way at our wedding.

One of our guests was Robert Arthur who I met when he was a student in one of the writing classes I taught at Phoenix College almost a decade ago.  We played his original album during the reception when no one was singing.

People who didn’t know each other started to interact and I loved it.  At one point, I noticed our best man – Michael Payne – in a tuxedo having a discussion with an unshaven young man wearing worn jeans and an ill-fitting shirt.  The dichotomy tickled me.

Karla, my Staten Island buddy Janet Le, and Michelle, who I still think of as my niece (despite no blood relationship) handled all the kitchen duties so I could just “be the bride.”  Michael made a beautiful toast. So much happened, but it reminds me of child birth; I don’t remember very much of it!

So let’s get to the heart of today’s blog: pregnancy when you have Chronic Kidney Disease (like the way I slid into that?).  According to the physicians’ journal BMJ,

“Pregnant women with chronic renal [kidney] disease adapt poorly to a gestational [pregnancy] increase in renal blood flow. This may accelerate their decline in renal function and lead to a poor pregnancy outcome.”

That blatantly gives you the bad news first, but it’s not the end of any thought of pregnancy with CKD. You can read the fairly technical, yet highly informative article at: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2213870

The following is a 1980 view of pregnancy’s effect on kidney disease.  Keep that date in mind since it is 33 years ago:

• Increase in proteinuria [protein in the urine]
• risk of preeclampsia [hypertension (a sharp rise in blood pressure), albuminuria (leakage of large amounts of the protein albumin into the urine) and edema (swelling) of the hands, feet, and face]
• worsening of anemia [low red blood cell level]
• lessening of renal function.

While I’ve paraphrased, it’s clear pregnancy with ckd was frowned upon all those years ago.  The study I found the information in can be located at this address:
http://webdoc.nyumc.org/nyumc/files/med_nephrology/attachments/Pregnancy%20and%20CKD.pdf

Okay, lots of definition in the above outdated article.  Let’s see what thoughts about the subject are fairly current.

Pregnancy and Chronic Kidney Disease: A Challenge in All CKD Stages. That’s the title of an article I found at:
http://cjasn.asnjournals.org/content/5/5/844.full
.  The word ‘challenge’ caught my eye, so I did my best to understand the article which summarized information garnered between 2000 and 2009 about the subject.  According to the article, more cases of CKD were discovered during pregnancy than had been expected.  Of course, I immediately wondered if this were a new way of diagnosing CKD.  Of course, I knew I could not be tested this way.  Of course, you know I’m kidding.

“Chronic kidney disease complicates an increasing number of pregnancies, and at least 4% of childbearing-aged women are afflicted by this condition. Although diabetic nephropathy [kidney disease from long term diabetes] is the most common type of chronic kidney disease found in pregnant women, a variety of other primary and systemic kidney diseases also commonly occur. In the setting of mild maternal primary chronic kidney disease (serum creatinine <1.3 mg/dL) without poorly controlled hypertension, most pregnancies result in live births and maternal kidney function is unaffected. In cases of more moderate and severe maternal primary chronic kidney disease, the incidence of fetal prematurity, low birth weight, and death increase substantially, and the risk of accelerated irreversible decline in maternal kidney function, proteinuria, and hypertensive complications rise dramatically. In addition to kidney function, maternal hypertension and proteinuria portend negative outcomes and are important factors to consider when risk stratifying for fetal and maternal complications. In the setting of diabetic nephropathy and lupus nephropathy [kidney inflammation caused by lupus], other systemic disease features such as disease activity, the presence of antiphospholipid antibodies [antibodies that might be in your blood and might increase the incidence of blood clotting and pregnancy termination], and glycemic control [eating low carbohydrate foods to help manage diabetes] play important roles in determining pregnancy outcomes. Concomitant with advances in obstetrical management and kidney disease treatments, it appears that the historically dismal maternal and fetal outcomes have greatly improved.”

The above is taken from Chronic Kidney Disease and Pregnancy: Maternal and Fetal Outcomes by Michael J. Fischer at:
http://www.sciencedirect.com/science/article/pii/S1548559507000055
, which is dated April 2007.  I included the entire paragraph since it makes so clear that pregnancy outcomes “have greatly improved.” And that was six years ago! By the way, I added the definitions in brackets.

I seem to be having trouble finding anything more recent, so I’ll summarize what I have found:

1. Speak with your nephrologist about a high risk team before you become pregnant, if possible.
2. Pregnancy in early stages of CKD has better outcomes.
3. CKD may be discovered during pregnancy.
4. Pregnancy is not an impossibility if you have CKD.
5. Treatment in pregnancy in CKD is continually improving.
6. The risks are caused by increased renal blood flow along with other factors.

Considering my age, I’ll take my mother’s advice: “Better you than me.”  Don’t let CKD cause you to miss out on one of the wonders of life, but don’t be foolish.  Take care of that baby you intend to bring into the world by taking care of its mother.  Reminder:  giving birth to a baby is not the only way to become a mother.

Until next week,

Keep living your life!

Weight A Minute

We’ve been married for one week and one day (and no, I don’t feel any different.  Being married to Bear is just as delicious as co-habitating with him).  We just got our pictures back from our future son-in-law and videographer, Sean Rasbury.  They’re beautiful.  We’re beautiful.   Our family is beautiful. Our friends are beautiful. The wedding was beautiful.

But, you know it’s important to keep your weight down when you have Chronic Kidney Disease and the pictures were a rude awakening for me.  I thought I was doing just that.  Hah! I was not the beautiful blushing bride, but the beautiful bountiful bride.

Keeping your weight down is one of the ways to help retard the progression of the disease.  How? By not allowing yourself to become obese. Obiously, if you keep gaining weight, you can become obese.  Obesity is one of the contributing factors for developing diabetes.  Diabetes may lead to, and complicates the treatment of, ckd.

Look at my wedding picture again. Based on my BMI (Body Mass Index) I am obese. This is from What Is It And How Did I Get It? Early Stage Chronic Kidney Disease:

“The BMI formula was something about your weight divided by the sum of your height in inches squared times 703.  I think. I have researched and researched this,

but still do not understand it.  I did discover later on that there are free BMI Calculators online, such as the one on the United States Department of Health and

Human Services’ website [http://www.nhlbisupport.com/bmi/bminojs.htm], so you really only need to know our height and weight. If I’d known that at the time,

I just might not have felt so overwhelmed.”

You can order the book in either print or digital at:
http://www.amazon.com/s/ref=nb_sb_noss?url=search-alias%3Daps&field-keywords=What+Is+It+And+How+Did+I+Get+It%3F+Early+Stage+Chronic+Kidney+Disease
(which is Amazon) or
http://www.barnesandnoble.com/s/What-Is-It-And-How-Did-I-Get-It–Early-Stage-Chronic-Kidney-Disease?keyword=What+Is+It+And+How+Did+I+Get+It%3F+Early+Stage+Chronic+Kidney+Disease&store=allproducts
(which is Barnes and Noble).  If you’d like an endorsed print copy, just email me at myckdexperience@gmail.com or call (623) 266-2609.

You can see from the family wedding picture that some of us are naturally thin. They don’t seem to watch their diets or exercise, either. I notice that they need to start doing just that once they approach 30.  I sort of remember that being the case for me, too.  Then again, I danced all the time, studied Judo, ice skated, skied, and basically was moving all the time.  My diet was another story.  I didn’t have ckd at the time and, like any other 20 something, thought that I was immortal. 

Here’s a chart from Health Travel Guides that offers the other benefits of losing body fat.  You can see it’s an overall positive action to take for your body’s health.

Medical News Today published this information in an article:

“A University of Bristol team, with funding from the British Heart Foundation (BHF), has now identified that a target found to be critical in the brain’s regulation of body weight,

is also crucially involved in the development of obesity-associated conditions. Researchers describe the mechanism behind a key molecule, known as melanocortin-4-receptor (MC4R),

whose mutation or loss in both human and animal models has shown to cause severe obesity with type 2 diabetes.”

The title of the article is Scientists Identify Culprit In Obesity-Associated High Blood Pressure. Hmmm, high blood pressure (hypertension), another contributor to ckd. This is preliminary research so we can’t just pop a pill that will magically control our weight.  We need to do that ourselves. You can read the article for yourself at:
http://www.medicalnewstoday.com/releases/255768.php
.

If you read another article at:
http://news.health.com/2013/02/06/vitamin-d-loss-attributed-to-obesity/
, you’ll find that obesity also may lead to a drop in vitamin D, something we can’t afford as ckd patients.  This is the vitamin that regulates calcium and phosphorous blood levels as well as promoting bone formation, among other tasks.  It also affects the immune system. If you’re like me at stage 3A, you’re already taking vitamin D supplements since we need to control phosphorous levels, which means we cannot afford to lose any more of it.

Yet another caution about obesity from Medical News Today is not only for ckd patients but any woman of child bearing age.  The headline says it all: Obese Women Taking Certain Contraceptive May Be At Increased Risk For Type 2 Diabetes.  Keep in mind that diabetes, as mentioned before, may contribute to the development of ckd.  Want to read the entire article?  Here’s the link: http://www.medicalnewstoday.com/releases/256099.php

According to DaVita at http://www.davita.com/kidney-diet-tips/?p=1872

1.                                        ”… people with a BMI 35 or greater had higher death rates than normal weight, overweight and mildly obese patients, so becoming more obese is a concern.

•                                         Obese people are more likely to have chronic diseases like diabetes, high blood pressure and heart disease, which could mean they receive more medical care
•                                                                                                                                                                                                                                       and monitoring compared to normal weight people.
•                                         Excess weight may be a source of energy during illness or injury—a benefit the lean person does not have.
•                                        A person can have different degrees of  health and fitness regardless of their BMI or weight. Factors such as nutrition status, diseases, health history, where
•                                                                                                                                                                         fat is stored (abdominal  vs. lower body), eating habits influence your level of fitness.

The message here is that while excess weight may not affect your general health and may even be of some benefit during times of ill health, we have a chronic disease and cannot afford the luxury of the benefits in being overweight.

We offered no goodies except the wedding cake at our shindig.  Our dinner was all pasta based with plenty of salad and an additional side of string beans.  We had enough champagne for a toast.  That’s it.  We were able to provide the usual wedding dinner with options for those with ckd (ME!). The only thing we each had to control is how much of each we ate.

We spent time enjoying instead of gorging.  All our daughters took part in the ceremony:  Abby Wegerski sang Marry Me and Nima Rosensfit sang I Would Love To Be Your Last, Lara Garwood was in charge of the candles for the family blending part of the ceremony, and Kelly Garwood read ‘Corinthians.’  Bear and I wrote our own vows and tailored the officiant’s vows to our beliefs.

Our audience consisted of only Janet Le, my long time buddy from Staten Island; Karla Lodge, my Arizona buddy; and Alex Gilman, Lara’s beau, because I wanted to become Bear’s bride under the palo verde tree in our backyard with only our dearest and nearest in attendance – that, of course, includes Sean Rasbury, who is Kelly’s fiancé, and Michael Payne who was Bear’s best man.  Even Bella, our dog, showed up for the ceremony wearing her new red collar with the red hibiscus the Kurrs and Doris Widmayer had brought back from Hawaii for me.

More pictures next blog and further descriptions for what we did for fun, instead of gorging, at the reception.

Until next week,

Keep living your life.