It’s the Long Promised Sulfa Blog!

Since I mentioned sulfa drugs in a blog a few weeks ago, I’ve been asked some questions, including one wanting to know if these drugs could have caused a particular reader’s CKD.  Although I used the British spelling, I also wrote about my experience with sulfa drugs in What Is It And How Did I Get It? Early Stage Chronic Kidney Disease (page 90):

I knew I wasn’t feeling well at all, so I called my primary care physician for an appointment.  Her medical assistant  [M.A.] told me my doctor was out of town for a Book Coverweek and to go to the urgent care center near my home since, as a CKD patient, I should not wait.  When I told the receptionist at the urgent care center that I had CKD, she sent me to the emergency room at the local hospital in case I needed blood tests or scans for which the urgent care center was unequipped.  The hospital did run a scan and blood tests.  This way, they were able to see if I had an infection, blockage or some imbalance that might not only make me feel sick but worsen the CKD.

I already knew I had a higher than usual white blood cell count from my previous fasting blood test for the nephrologist about a month before the emergency room visit.  He’d felt it was not significantly high enough to indicate an infection but was, rather, a function of a woman’s anatomy.  Women have shorter internal access to the bladder, as opposed to those of men.  Looked like my nephrologist might have misjudged.

However, he quickly picked up that the medication prescribed by the emergency room physicians, despite my having reiterated several times that I have CKD, was a sulfur based drug.  He quickly made a substitution, saving possible further damage to my kidneys.  The hospital insisted I only had Stage 2, so this was a safe drug for me.  I was nervous about this as soon as they became defensive about prescribing this medication.  You need to stick to your guns about being taken seriously when it comes to CKD.

All right, let’s go back to basics, first.  The Medical Dictionary at http://medicaldictionary.thefreedictionary.com/sulfa+drug defines sulfur drug as

“Any sulfur-based antibiotic, in particular sulfonamides.”

sulfaGreat. Now we just need to know what sulfonamides are.  The same dictionary tells us these are

“medicines that prevent the growth of bacteria in the body”

and that they are frequently used with urinary tract infections. Yet, there’s also a warning that people with kidney disease should be sure to warn their doctors about their kidney disease should one of these drugs be prescribed.

Well, why do you need to avoid such medications with CKD? As you already know, compromised kidneys don’t do the job they were meant to do as well as they did before we had CKD when it comes to eliminating drugs from our bodies.  The kidneys are the organs that clear this particular drug from the body, not the liver (which is another organ that can clear drugs from your body). That means the drug may build up… and cause problems.

Here’s one of those problems from MedicineNet.com at http://www.medicinenet.com/sulfonamides-oral/article.htm#what_are_the_side_effects_of_sulfonamides,

“Other rare side effects include liver damage, low white blood cell count (leucopenia), low platelet count (thrombocytopenia), and anemia. Formation of urinary crystals which may damage the kidney and may cause blood in the urine. Adequate hydration is needed to prevent the formation of urinary crystals.”

We are already prone to anemia since we’re not producing as many red blood cells as we could (another job our kidneys have). Sure, adequate hydration may prevent these crystals, but just how much is adequate.  After all, as CKD patients, we do have fluid restrictions.

As for actually causing kidney damage, yes, sulfa drugs can do that. As The National Kidney Foundation phrases it at http://www.kidney.org/atoz/content/kidneysnottowork.cfm:NKF-logo_Hori_OB

“Other things that can damage the kidneys include kidney stones, urinary tract infections, and medications or drugs.”

 An allergic reaction to sulfa drugs can also cause kidney damage.  Allergies.About.Com at http://allergies.about.com/od/medicationallergies/a/sulfa.htm reports:

“People with sulfa allergy may also develop a type of hepatitis, and kidney failure, as a result of sulfa medications.”

However, they are careful to point out that this is an uncommon reaction, occurring in less than 3% of users.

The antibiotics Bactrim and Septra are two of the most common sulfa drugs prescribed today.  Most often, they’ll be prescribed for a urinary tract or bladder infection.  What makes it harder to pinpoint which drugs are sulfa drugs is that they don’t always have ‘sul’ in their name.

That’s also what makes it so important for you to impress upon your physician that you

the medical alert plate1. do have CKD and

2. will not be taking any sulfa drugs

Wearing a medical alert bracelet might help you remember to be downright insistent that you will NOT be taking any sulfa drugs.

The emergency room doctor did try to speak with my nephrologist before prescribing the drug for me, but couldn’t get through… a situation we’re all familiar with.  He was not a specialist and made a judgment call that sulfa drugs would be all right for me.

Yet, when I finally got a response to my own calls to the nephrologist, he was horrified.  This guy was not an emotional man so this really put me into a panic, especially since CKD was so new to me and I didn’t really know the rules yet.

Some blogs just flow and some are hard to write.  This was one of the hard ones.  I spent more time trying to tease information from the internet and my source books than writing.  I gather this is neither a popular topic nor one that is usually visited.  That makes me even more hopeful that I’ve answered your questions about CKD and sulfa drugs.NYC

I left NY in 2002, but we’re going back for a visit soon.  Nima, my NY daughter, will be taking me to High Line and The Urban Museum.  Are there any other new places you think we should visit?  While I lived there, the city was our playground… but it’s been a dozen years.

Until next week,

Keep living your life!

The State of The Mind Address

Monday again… and I, for one, am so glad to see it.  It’s blog day and I’ve got a lot to say today.  I’ve been down – well, as down as my optimistic nature allows – with all the medical issues surrounding me the last few weeks. My very, very dear friend and sometimes ‘sister’ has been diagnosed with stage IV bowel cancer, diabetes, hypertension, depression, and anxiety. One of my children is being successfully treated for depression and anxiety, but has developed a pre-diabetic condition and elevated cholesterol.

So, what did I do?  What else?  I researched mental life’s effect on physical health. I found information I’d always taken for granted proven scientifically and some – like the different types of smiles – I hadn’t thought about.

In EurekAlert!’s July 30th article, I zeroed in on the following.

Poor mental health linked to reduced life expectancy

“There is a possibility that mental health problems may be associated with biological changes in the body that increase the risk of diseases such as heart disease.

In this study, approximately a quarter of people suffered from minor symptoms of anxiety and depression, however, these patients do not usually come to the attention of mental health services. The authors say that their findings could have implications for the way minor mental health problems are treated.”

Of course there’s more to the article, which you can read at: http://www.eurekalert.org/pub_releases/2012-07/wt-pmh073112.php

It made sense to me.  Another one of my children had troublesomely high cholesterol when she was agonizing over a major life decision three years ago.  She took her medication, ate the right foods and made certain she exercised and it kept right on rising.  Fast forward to a few months after she made and acted upon her decision. She faced her fear (thank you, Landmark) and returned to her doctor for a complete physical even though she had stopped taking the medication and ignored her diet. As a dancer (she IS my daughter), exercise wasn’t a problem. I’m so glad she did go back to the doctor.  There is no sign of elevated cholesterol.  Why?  I’m laying it on the fact that she’s happier now.

I tend to smile quite a bit and look for reasons to smile even when life seems hard.  I wondered if that were helping me with my own health and, if so, would it help others. Then I located this Aug. 1, Medical News Today article:

Smiling Reduces Stress And Helps The Heart

“A new study suggests that holding a smile on one’s face during periods of stress may help the heart. The study, due to be published in a forthcoming issue of Psychological Science, lends support to the old adage ‘grin and bear it,’ suggesting it may also make us feel better.”

The article goes on to distinguish between the different kinds of smiling.  You can find it at:

http://www.medicalnewstoday.com/articles/248433.php.

I found something unexpected to be happy about this week: Medical ID Fashions.  If you remember (and even if you don’t), I’d taken them off my blog roll because I ordered one of their medical alert bracelets and when it was delivered, there was a note in the box saying it could not be submerged in water.

I have osteoarthritis and could not (oh, all right, so I just didn’t want to) spend precious minutes a day struggling to get it off and on before I hit the shower. I just wanted something pretty that I could put on and ignore. I emailed the company about not warning the consumer that it wasn’t waterproof BEFORE the bracelet was purchased and received.

I heard nothing for months on end. Then the bracelet started to tarnish and I cleaned it.  Mistake!  Seems it could not tolerate the cleaning supplies I was using because there was some kind of protective coating over the brass and copper parts of it – a coating I knew nothing about since there was no information about cleaning on the website nor was any sent with the bracelet.

Again I sent an email.  This time I got a reply in less than 24 hours with a request to call them.  When I did and explained the problem, they offered to replace the bracelet with a waterproof stainless steel one for the difference in the price of the two bracelets.  I also noticed the websites now mentions which bracelets are waterproof although nothing is included about NOT being waterproof in the other bracelets’ descriptions.  There’s also still a lack of information about how to clean the bracelets.

I have already return mailed my old, ruined bracelet (who knew trying to be neat and clean could cause such problems?) and PayPal-ed the $20.  Now I wait. So I won’t have the pretty silver-copper-brass bracelet I wanted. I’ll have a waterproof, cleanable stainless steel one instead.  It may not be stylish but it could be a life saver.

I’m starting to see sales in England!  That’s something else to make me smile.  And thanks to AKDHC’s flier campaign, I’m starting to receive telephone calls from people who want the book but don’t have or know how to use a computer. I have a bunch of books I keep in the office for those without computers.  They can also be personally inscribed, if you’d like.  Just send me an email at: myckdexperience@gmail.com.

Time to get to researching cataract surgery and ckd.  Mine are scheduled for August 14th and September 4th.

Oh, got an email from a reader whose tests showed she had NO ckd, although she’d been diagnosed at stage 3.  Being a smart one, she retook the tests.  The first set of tests had false results.  No one knows quite how that happened, but if you should find you suddenly have test results, good or bad, that are totally unexpected, please have them redone.  We all want NOT to have CKD, but need to pay attention to it if we do.

Until next week,

Keep living your life!

Mid Week This And That

This is what I was thinking about while in Chattanooga:

1. Be wary when you order medical alert jewelry bracelets. Without mentioning the specific company in question, I received my bracelet in the mail with a note enclosed stating that I needed to take this bracelet off before showering or going into bodies of water in which it might be submersed.  What?  I have arthritis.  Taking bracelets off and putting them on is akin to torture for me – even with the device that was invented to help in just those circumstances.  Why not mention this BEFORE the item is ordered?  When I emailed them with my complaint, I received no response.  Boy, did I ever feel duped.  You will not find them on the blog roll.

2. On the other hand, the app KidneyDiet responded in a timely fashion when they were emailed.  The complaint was that new foods could not be added.  Otherwise, this is a really good app that adds calories, potassium, phosphorous, protein and sodium.  In other words, perfect except you were limited to the foods on their list.  They are now working  on a way for their users to add new foods.  Thank you, KidneyDiet.

3.  Send me an email at: myckdexperience@gmail.com to order a book at discount.  I have plenty of leftovers from the Chattanooga Renal Symposium just waiting for a new home.  They are new, in excellent condition and discounted at $10/book rather than the usual $12.95.  Email me, pay via PayPal and the book is yours.

This is fun, this midweek update.  It’s like emptying my mind without having to wait for Monday!  I look forward to your orders (oh boy, do I!).

Until Monday,

Keep living your life!

World Kidney Day Is Only Six Years Old

Each Monday, I find it progressively more difficult to choose a topic.  I am amazed at how much information is being disseminated about kidney disease and its treatment and/or underlying causes these days.  Since March 8 is the sixth World Kidney Day, I thought we would go back to the basics to start today’s blog.  Thank you, again and again and again to The National Kidney Foundation for all the information they make available to us.  This is their World Kidney Day posting:

Top 10 Reasons to Love Your Kidneys

Sometimes the more you know, the more you love.  The National Kidney Foundation urges Americans to get to know two humble, hardworking organs: the kidneys.  To help raise awareness and appreciation for all the vital functions the kidneys perform, the National Kidney Foundation offers 10 reasons for Americans to love their kidneys and take steps now to preserve kidney health:

1. Filter 200 liters of blood a day, removing two liters of toxins, wastes and water

2. Regulate the body’s water balance

3. Regulate blood pressure by controlling fluid levels and making the hormone that causes blood vessels to constrict

4. Support healthy bones and tissues by producing the active form of vitamin D

5. Produce the hormone that stimulates bone marrow to manufacture red blood cells

6. Keep blood minerals in balance

7. Keep electrolytes in balance

8. Regulate blood acid levels

9. Remove drugs from the blood

10. Retrieve essential nutrients so that the body can reabsorb them

In my book, I discuss how important it is to tell every doctor you see about your Chronic Kidney Disease.  Notice #9. “Remove drugs from the blood.”  You may need to take a lower dosage of whatever drug was prescribed or, perhaps, take it less often.  If your kidneys are not fully functioning, the drugs are not effectively being removed from your blood.  It would be similar to willfully taking a drug overdose if you do not make your doctors aware of your CKD when they prescribe for you.  Make sure your pharmacist knows about your CKD, too.  You cannot rely on your doctors – specialists or not – to remember every warning on every label.  That’s where your pharmacist comes in.  He or she has that same information.  You are ultimately the one in charge of your health.  It makes perfect sense to draw upon all your resources.

I also discuss in my book the problem in my local hospital’s emergency room when I had a bladder infection.  Just in case you don’t remember, my primary care doctor wasn’t available, so her M.A. told me to go to an Urgent Care facility rather than wait since I have CKD.  When I arrived and told the receptionist I have CKD, she immediately sent me to the hospital emergency room in case I needed blood or other tests for which the Urgent Care wasn’t equipped.  After a battery of tests in the emergency room, sulphur drugs were prescribed, although I’d took them repeatedly about having CKD.  Sulphur drugs can harm the kidneys even more.

This got me to thinking about if I were brought into the e.r. under true emergencies conditions – as in unconscious.  How would they know I had CKD before they located someone who could tell them about my medical background?  Or access my records elsewhere? I knew the answer was a medical alert bracelet, but spent quite a bit of time ignoring the issue.  Then I got sick again – a simple flu – but the bracelet idea popped back into my mind full blown, so I started searching for one.

I wanted something that looked like jewelry, but not too much like jewelry because I have simple tastes.  So, I did what I do best: researched.  This is what I came up with:

I chose the black plate and had “Chronic Kidney Disease” inscribed on two lines on the back.  Now, the bracelet itself:

It’s jewelry like, something I’m comfortable wearing and it does the job of making me feel secure should I ever have a true emergency.  I’ll be adding  http://www.medicalidfashions.com/ to the blog roll later on.  They are one of several sites with the type of medical alert i.d. bracelet I’ve been discussing.  Feel free to click through now or wait for the address to be added to the blog roll.  You know, don’t you, that I have nothing to do with any of the companies I mention to you except that I want to share what I’ve found.

Ah, talking about sharing!  I found this review of the book on Amazon and walked on air for the rest of the day!

5.0 out of 5 stars The Best Info on Kidney Disease around!, February 20, 2012
This review is from: What Is It And How Did I Get It? Early Stage Chronic Kidney Disease (Kindle Edition)

This is an incredibly well-researched, well-written book written by a woman who herself developed kidney disease. Her book provides clear and comprehensive information for all about the care patients need to have, and responds to the fears and concerns of all involved with coping with kidney disease. It is an honest, very personal accounting of her experience, and I found it to be written clearly, providing tons of pertinent information about every facet of how to cope with this illness. I think Ms. Rae wrote this book for the ordinary person who learns that they will be living with kidney disease from the moment of diagnosis, on. But after reading, I believe that it is also a book that every family member, every friend of someone who has developed kidney disease ought to read as well, in order to better understand what their loved ones are going through. I also believe that this book will benefit every professional in the medical community who deals with patients coping with Kidney Disease. It has helped me, and will help everyone involved with the patient on any level to be better able to understand their patient’s concerns, anxieties, needs and limitations. For these reasons I think it is a great guide for the medical community as well as for the patient/family/friends, as it can help professionals understand the kind of information their patients need to have in order to take good care of themselves. Don’t pass this book up!

Got to go check out a symposium that sent me an invitation to exhibit.  This is a new one for me.

Until next week,

Keep living your life!