Movin’ On Up

Considering my family’s history, I’m vigilant about having colonoscopies. This year, however, there was an additional test – an endoscopy. You may have heard of this as an upper endoscopy, EGD or esophagogastroduodenoscopy. The names are interchangeable. Whatever you call it, I was intrigued.

What is an endoscopy, you ask. According to the Mayo Clinic at https://www.mayoclinic.org/tests-procedures/endoscopy/basics/why-its-done/PRC-20020363:

An upper endoscopy is used to diagnose and, sometimes, treat conditions that affect the upper part of your digestive system, including the esophagus, stomach and beginning of the small intestine (duodenum).

Okay, but that doesn’t explain what the procedure is. The National Institute of Diabetes and Digestive and Kidney Diseases at https://www.niddk.nih.gov/health-information/diagnostic-tests/upper-gi-endoscopy can help us out here:

Upper GI endoscopy is a procedure in which a doctor uses an endoscope—a flexible tube with a camera—to see the lining of your upper GI tract. A gastroenterologist, surgeon, or other trained health care professional performs the procedure, most often while you receive light sedation to help you relax.

Relax? I was out like a light. First I was being shown was the device that was going to hold my mouth open and hold the tube that would be going down my throat, the next second I awoke in my room… or so it seemed.

Now the biggie: why have an endoscopy in the first place? I went to Patient Platform Limited at https://patient.info/health/gastroscopy-endoscopy and found this,

A gastroscopy may be advised if you have symptoms such as:

• Repeated (recurring) indigestion.
• Recurring heartburn.
• Pains in the upper tummy (abdomen).
• Repeatedly being sick (vomiting).
• Difficulty swallowing.
• Other symptoms thought to be coming from the upper gut.

The sort of conditions which can be confirmed (or ruled out) include:

• Inflammation of the gullet (oesophagus), called oesophagitis. The operator will see areas of redness on the lining of the oesophagus.
• Stomach and duodenal ulcers. An ulcer looks like a small, red crater on the inside lining of the stomach or on the first part of the gut (small intestine) known as the duodenum.
• Inflammation of the duodenum (duodenitis) and inflammation of the stomach (gastritis).
• Stomach and oesophageal cancer.
• Various other rare conditions.

Wait a minute. I can already hear you asking what that has to do with Chronic Kidney Disease. Claire J. Grant, from the Lilibeth Caberto Kidney Clinical Research Unit in London, Canada, and her colleagues’ answer was reported in PhysciansEndoscopy at http://www.endocenters.com/chronic-kidney-disease-adversely-affects-digestive-function/#.WiLwjrpFxaQ,

“CKD adversely affects digestive function,” the authors write. “Abnormalities in digestive secretion and absorption may potentially have a broad impact in the prevention and treatment of both CKD and its complications.”

Not good. We know that CKD requires close monitoring and life style changes. This may be another facet of the disease to which we need to pay attention.

I had some biopsies while I was under sedation. Nope, didn’t feel a thing.

But I now know I have gastritis and an irregular Z-line. The silver lining here is that I don’t have Helicobacter pylori or H. pylori, a type of bacteria that infects the stomach which can be caused by chronic gastritis. Mine seems to be the food caused kind. Generally it’s alcohol or caffeine, spicy foods, chocolate, or high fat foods that can cause this problem. I don’t drink, eat spicy or high fat foods, and rarely eat chocolate, but nooooooooooooooooo, please don’t take away those two luscious cups of coffee a day.

I wasn’t sure what this Z-line thing was so started poking around on the internet, since I didn’t catch it before seeing the gastroenterologist for my after visit appointment. Dr. Sidney Vinson, University of Arkansas for Medical Sciences/UAMS College of Medicine explained:

This refers to the appearance of the tissue where the esophagus and stomach meet. The z-line is a zig-zag line where these 2 different type tissues meet. Occasionally it can be irregular and protrude more into the esophagus and not have the typical appearance. This is generally a benign condition but can occasionally represent mild barrett’s esophagus, a precancerous change caused by reflux.

My source was HealthTap at https://www.healthtap.com/user_questions/198269-in-regards-to-upper-gi-endoscopy-what-is-an-irregular-z-line

Apparently my normal duodenum was biopsied to see if my doctor could find a reason for the pain I was experiencing in the upper stomach. Well, it was more discomfort than pain, but he wanted to be certain there wasn’t an ulcer… and there were no ulcers. Yay!

Hmmm, I have gastritis which is an inflammation and CKD, which is an inflammatory disease. Which came first? Did it matter? If I treat one will the other improve? I’ve been following the renal diet for all nine years since my diagnose and have made the appropriate life style changes, too.

What more could I do? There’s the ever present to struggle to lose weight. That could help. I wasn’t willing to take more medication as my gastroenterologist understood and accepted. I was already taking probiotics. I examined the little booklet produced by Patient Point that I was given more closely ignoring all the advertisements for medication.

Look at that. It seems sleeping on your left side can help. “Since your stomach curves to your left, part of it will be lower than your esophagus.” I can do that, although I wonder if it will be awkward while wearing the BiPap.

I also learned that skipping late night snacks and eating smaller meals would be helpful since there would be less acid produced by smaller meals and I wouldn’t have to deal with acid while I slept if I stopped eating at least two hours before bedtime. Acid is produced to help digest your food.

For Thanksgiving, I was part of a video produced by Antidote Me (the clinical trial matching program I wrote about several weeks ago). The topic was What I Am Thankful to Medical Research for. I think I can safely add endoscopy to that list. https://drive.google.com/file/d/1Mwv-vBRgzRFe8-Mg6Rs7uUIXMOgOMJHX/view

I was also invited to participate in two separate book signings and have a video from one of them. I’ll post it as soon as I can figure out how since I don’t own the rights yet. Oh, I feel a new year’s resolution coming on – learn more about the technology I need for my writing.

Until next week,
Keep living your life!

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This Former Hippy Wannabe Likes HIPAA

Each day, I post a tidbit about, or relating to, Chronic Kidney Disease on SlowItDownCKD’s Facebook page. This is the quote from Renal and Urology News that I posted just a short while ago:

“Patients with stage 3 and 4 chronic kidney disease (CKD) who were managed by nephrology in addition to primary care experienced greater monitoring for progression and complications, according to a new study.”

My primary care physician is the one who caught my CKD in the first place and is very careful about monitoring its progress. My nephrologist is pleased with that and feels he only needs to see me once a year. The two of them work together well.

From the comments on that post, I realized this is not usual. One of my readers suggested it had to do with HIPPA, so I decided to look into that.

The California Department of Health Care Services (Weird, I know, but I liked their simple explanation.) at http://www.dhcs.ca.gov/formsandpubs/laws/hipaa/Pages/1.00WhatisHIPAA.aspx defined HIPPA and its purposes in the following way:

“HIPAA is the acronym for the Health Insurance Portability and Accountability Act that was passed by Congress in 1996. HIPAA does the following:

• Provides the ability to transfer and continue health insurance coverage for millions of American workers and their families when they change or lose their jobs;
• Reduces health care fraud and abuse;
• Mandates industry-wide standards for health care information on electronic billing and other processes; and
• Requires the protection and confidential handling of protected health information”

Got it. Let’s take a look at its last purpose. There is an infogram from HealthIT.gov at https://www.healthit.gov/sites/default/files/YourHealthInformationYourRights_Infographic-Web.pdf  which greatly clarifies the issue. On item on this infogram caught my eye:

“You hold the key to your health information and can send or have it sent to anyone you want. Only send your health information to someone you trust.”

I always send mine to one of my daughters and Bear… and my other doctors if they are not part of the hospital system most of my doctors belong to.

I stumbled across National Conference of State Legislatures at http://www.ncsl.org/research/health/hipaa-a-state-related-overview.aspx and learned more than I even knew existed about HIPAA. Take a look if you’d like more information. I finally tore myself away from the site to get back to writing the blog after following links for about an hour. It was fascinating, but not germane to today’s blog.

Okay, so sharing. In order to share the information from one doctor that my other doctors may not have, I simply fill out an Authorization to Release Medical Information form. A copy of this is kept in the originating doctor’s files. By the way, it is legal for the originating doctor to charge $.75/page for each page sent, but none of my doctors have ever done so.

I know, I know. What is this about doctors being part of the hospital system? What hospital system? When I first looked for a new physician since the one I had been using was so far away (Over the usual half-an-hour-to-get-anywhere-in-Arizona rule), I saw that my new PCP’s practice was affiliated with the local hospital and thought nothing of it.

Then Electronic Health Records came into widespread use at this hospital. Boom! Any doctor associated with that hospital – and that’s all but two of my myriad doctors – instantly had access to my health records. Wow, no more requesting hard copies of my health records from each doctor, making copies for all my other doctors, and then hand delivering or mailing them. No wonder I’m getting lazy; life is so much easier.

Back to HealthIt.gov for more about EHR. This time at https://www.healthit.gov/buzz-blog/electronic-health-and-medical-records/emr-vs-ehr-difference/:

“With fully functional EHRs, all members of the team have ready access to the latest information allowing for more coordinated, patient-centered care. With EHRs:

• The information gathered by the primary care provider tells the emergency department clinician about the patient’s life threatening allergy, so that care can be adjusted appropriately, even if the patient is unconscious.
• A patient can log on to his own record and see the trend of the lab results over the last year, which can help motivate him to take his medications and keep up with the lifestyle changes that have improved the numbers.
• The lab results run last week are already in the record to tell the specialist what she needs to know without running duplicate tests.
• The clinician’s notes from the patient’s hospital stay can help inform the discharge instructions and follow-up care and enable the patient to move from one care setting to another more smoothly.”

Did you notice the part about what a patient can do? With my patient portal, I can check my labs, ask questions, schedule an appointment, obtain information about medications, and spot trends in my labs. Lazy? Let’s make that even lazier. No more appointments for trivial questions, no more leaving phone messages, no more being on hold for too long. I find my care is quicker, more accessible to me, and – believe it or not – more easily understood since I am a visual, rather than an audial, person.

Kudos to American Association of Kidney Patients for postponing their National Patient Meeting in St. Petersburg from last weekend to this coming spring. The entire state of Florida was declared in a state of emergency by the governor due to the possible impact of Hurricane Irma. The very next day, AAKP acted to postpone placing the safety of its members over any monetary considerations. If I wasn’t proud to be a member before (and I was), I certainly am now.

Aha! That gives me five found days to separate The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1 and The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2 each into two separate books with indexes. I never was happy with the formatting of those two. I plan to reward myself after this project. How, you ask. By writing a book of short stories. I surmise that will be out next year sometime. Meanwhile, there’s always Portal in Time, a time travel romance. Geesh! Sometimes I wonder at all my plans.

Until next week,
Keep living your life!

It’s Unfolding Now

Remember when I was lucky enough to catch the flu just after Christmas? (She wrote sarcastically.) When I went to the Immediate Care facility my doctor is associated with, the doctor there had my records and knew I’d had pleurisy at one time. But now, he ordered a chest x-ray to check for pneumonia. What he found instead was news to me… so, of course, I’m telling you about it.

IMG_2982To quote from the final result report of the X-ray: “There is unfolding of the thoracic aorta.” Huh? In The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1 there’s an explanation of thorax.

“What?  The what? Oh, the thorax. That’s ‘the part of the human body between the neck and the diaphragm, partially encased by the ribs and containing the heart and lungs; the chest’ according to The Free Dictionary at http://www.thefreedictionary.com/thorax.”

Thoracic is the adjective form of thorax; it describes the aorta in this case.

Do you remember what the aorta is? I sort of, kind of did, but figured I’d better make certain before I started writing about it. MedicineNet at http://www.medicinenet.com/script/main/art.asp?articlekey=2295 was helpful here.

“The aorta gives off branches that go to the head and neck, the arms, the major organs in the chest and abdomen, and the legs. It serves to supply them all with oxygenated blood. The aorta is the central conduit from the heart to the body.”

Now I get the connection between Chronic Kidney Disease and the aorta. Did you catch “oxygenated blood” in that definition? And what organs oxygenate the blood? IMG_2980Right. Your kidneys. This excerpt from SlowItDownCKD 2015 may help.

““The National Kidney and Urologic Diseases Information Clearinghouse …explains.

‘Healthy kidneys produce a hormone called erythropoietin, or EPO, which stimulates the bone marrow to produce the proper number of red blood cells needed to carry oxygen to vital organs.  Diseased kidneys, however, often don’t make enough EPO. As a result, the bone marrow makes fewer red blood cells.’”

With me so far? Now, what the heck is an unfolded aorta? I turned to the British site for radiologists, Radiopaedia.org, at https://radiopaedia.org/articles/unfolded-aorta for the definition. “The term unfolded aorta refers to the widened and ‘opened up’ appearance of the aortic arch on a frontal chest radiograph. It is one of the more common causes for apparent mediastinal widening and is seen with increasing age.

It occurs due to the discrepancy in the growth of the ascending aorta with age, where the length of the ascending aorta increases out of proportion with diameter, causing the plane of the arch to swivel.”

thoracic-aortaI purposely left the click through definitions in so you read them for yourself. You know the drill: click on the link while holding down your control key. For those of you who are reading the print version of the blog, just add the definition of aorta to the common terms we know: arch and ascending.

Mediastinal, according to the Merriam-Webster Dictionary at https://www.merriam-webster.com/dictionary/mediastinum is the adjective (describing) form of mediastinum or “the space in the chest between the pleural sacs of the lungs that contains all the tissues and organs of the chest except the lungs and pleurae; also:  this space with its contents.”

Hang on there, folks, just one more definition. I searched for a new site that wouldn’t offer a terribly technical definition of pleura (or pleurae) and found verywell at https://www.verywell.com/pleura-lungs-definition-conditions-2249162.

“The pleura refers to the 2 membranes that cover the lungs and line the chest cavity. The purpose of the pleura is to cushion the lungs during respiration.

The pleural cavity is the space between these 2 membranes and contains pleural fluid.”graduation

Side note: I definitely feel like I’m back teaching a college class again.

Okay, so now we have a bunch of definitions, we’ve put them together as best we can and where does it bring us? Are you ready for this? Nowhere. An unfolding of the thoracic aorta is nothing more than a function of age.

FullSizeRender (2)However, with CKD, it’s somewhere. As was explained in What Is It and How Did I Get It? Early Stage Chronic Kidney Disease, “Hemoglobin is the protein in red blood cells that carries oxygen from the lungs to the rest of the body.”  We’re already not getting enough oxygen due to our poor, declining in function kidneys.

Am I concerned about the unfolding thoracic aorta? No, not at all. It happens with age; I don’t think I can do anything about that. But, the CKD that also lowers our oxygen production? Oh yes, I can – do – and will do something about that by protecting my kidneys as best I can and keeping the remaining kidney function I have.

Kidneys.com, quoted in The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1, did a nice job of laying out a plan for me to do just that.

“Along with taking your prescribed blood pressure medications, lifestyle changes such as losing weight, exercising, meditating, eating less sodium,  drinking  less  IMG_2982alcohol  and  quitting  smoking  can  help  lower  blood pressure. Better blood pressure control helps preserve kidney function.”

I added using my sleep apnea machine and aiming for eight hours of sleep a night. I also stick to my renal diet – which limits protein, phosphorous, potassium, and sodium (as mentioned by kidney.com) – for the most part and keeping my kidneys hydrated by drinking at least 64 ounces of fluid a day.

Is it hard? I don’t know any more. It’s been nine years. They’re simply habits I’ve developed to live as long as I can and, sometimes, even raise the bottled waterfunction of my kidneys.

When my New York daughter was with us over the holidays, I realized how differently we eat than other people do. My husband has chosen to pretty much eat the way I do. So she actually had to go down to the market to pick up the foods that people ordinarily eat.  It would have been funny if I hadn’t been sick. I would have gone with her and laughed each time I answered, “No,” when she asked, “Do you eat this?”laughing

Until next week,

Keep living your life!

The American Kidney Fund Blog

AKF logoI was honored that The American Kidney Fund (www.kidneyfund.org) asked me to write a blog for them. This is that blog. Once it was published last Thursday, I started thinking. If you share the blog and ask those you shared with to share it, too, and they asked their friends to share it, too… image how many people would become aware of Chronic Kidney Disease. Will you do that?

Slowing Down CKD—It Can Be Done

When a new family doctor told me nine years ago that I had a problem with my kidneys—maybe chronic kidney disease (CKD)–my first reaction was to demand, “What is it and how did I get it?”

No doctor had ever mentioned CKD before.

I was diagnosed at stage 3; there are only 5 stages. I had to start working to slow it down immediately. I wanted to know how medication, diet,stages of CKD exercise and other lifestyle changes could help. I didn’t want to be told what to do without an explanation as to why… and when I couldn’t get an explanation that was acceptable to me, I started researching.

I read just about every book I could find concerning this problem. Surprisingly, very few books dealt with the early or moderate stages of the disease.  Yet these are the stages when we are most shocked, confused, and maybe even depressed—and the stages at which we have a workable chance of doing something to slow down the progression in the decline of our kidney function.

I’ve learned that 31 million people—14 percent of the population—have CKD, but most don’t know they have it. Many, like me, never experienced any noticeable symptoms. Many, like me, may have had high blood pressure (hypertension) for years before it was diagnosed. Yet, high blood pressure and diabetes are the two leading causes of CKD.

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

Another critical piece of slowing down CKD is medication. I was already taking meds to lower my blood pressure when I was first diagnosed with CKD. Two more prescriptions have been added to this in the last nine years: a diuretic that lowers my body’s absorption of salt to help prevent fluid from building up in my body (edema), and a drug that widens the blood vessels by relaxing them.

For a very short time, I was also taking a drug to control my pre-diabetes, but my doctor and I achieved the same effects by changing my diet even more. (Bye-bye, sugars and most carbs.) The funny thing is now my favorite food is salad with extra virgin olive oil and balsamic vinegar. I never thought that would happen: I was a chocoholic!

Exercise, something I loved until my arthritis got in the way, was also important. I used to dance vigorously several nights a week; now it’s once a week with weights, walking, and a stationary bike on the other days. I think I took sleep for granted before CKD, too, and I now make it a point to blues dancersget a good night’s sleep each day. A sleep apnea device improved my sleep—and my kidney function rose another two points.

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

I was sure others could benefit from all the research I had done and all I had learned, so I wrote my first book, What Is It and How Did I Get It? Early Stage Chronic Kidney Disease, in 2011. I began a blog after a nephrologist in India told me he wanted his newly diagnosed patients to read my book, but most of them couldn’t afford the bus fare to the clinic, much less a book. I published each chapter as a blog post. The nephrologist translated my posts, printed them and distributed them to his patients—who took the printed copies back to their villages. I now have readers in 106 different countries who ask me questions I hadn’t even thought of. I research for them and respond with a blog post, reminding them to speak with their nephrologists and/or renal nutritionists before taking any action… and that I’m not a doctor.

What is itEach time I research, I’m newly amazed at how much there is to learn about CKD…and how many tools can help slow it down. Diet is the obvious one. But if you smoke or drink, stop, or at least cut down. If you don’t exercise, start. Adequate, good quality sleep is another tool. Don’t underestimate rest either; you’re not being lazy when you rest, you’re preserving whatever kidney function you have left. I am not particularly a pill person, but if there’s a medication prescribed that will slow down the gradual decline of my kidney function, I’m all for it.

My experience proves that you can slow down CKD. I was diagnosed at stage 3 and I am still there, nine years later. It takes knowledge, commitment and discipline—but it can be done, and it’s worth the effort. I’m sneaking up on 70 now and know this is where I want to spend my energy for the rest of my life: chronic kidney disease awareness advocacy. I think it’s just that important.

IMG_1398SlowItDownCKD 2015 Book Cover (76x113)

 

SlowItDownCKD is the umbrella under which Gail Rae-Garwood writes her CKD books and blog, offers talks, participates in book signings, is interviewed on podcasts and radio shows, and writes guest blogs. Her website is www.gail-raegarwood.com.

Until next week,

Keep living your life!

Two Levels?

I am now the very satisfied user of a Bilevel Positive Airway Pressure Machine (BiPAP). I fought against this for years, preferring to use a Mandibular Advancement Device (MAD) instead so I wouldn’t be ‘tethered’ to a machine. After only two nights of sleeping with the BiPAP, I have more energy and less brain fog. Heck, that happened after only one night. I wonder just how much of the low energy and high brain fog that I was attributing to Chronic Kidney Disease was really from not enough oxygen and too much CO2 in my lungs.

Whoops, here I am jumping in at the end again. Maybe a reminder of what a MAD is would be the logical place to start. This is what I wrote in The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2,Digital Cover Part 2 redone - Copy

“…the MAD forces your airway open by advancing your lower jaw or mandibular.”

If your air passages are restricted, you’re simply not getting enough air into the lungs.

After well over two years, my sleep apnea started becoming worse instead of better, even when the MAD had been extended as far as it could go to keep that airway open. (Laughing over here; it sounds like an instrument of torture. It isn’t.)

You’re probably wondering what this has to do with CKD. I used my baby, What Is It and How Did I Get it? Early Stage Chronic Kidney Disease to find out.

What is it“The first mention of the lungs was in an explanation of your nephrologist’s ROS. ‘Then came the Review of Systems [ROS]. …, the lungs were referred to with questions about coughs, shortness of breath and dyspnea.’”

That does still leave us with the question of why the lungs were covered at all in this examination for CKD. According to http://www.ncbi.nlm.nih.gov/pubmed/20676805, one of the National Institutes of Health’s sites, sleep apnea can raise blood pressure, which in itself is one of the problems of CKD.  It can also result in glomerular hyperfiltration.  The chart below is from their site.  Notice ‘eGFR declines’ is one of the results. These three areas are the most important to us as CKD patients, which doesn’t mean the other effects should be ignored.

 

NIHMS233212.html

What was missing for me was why it was so important to get as much air into the lungs as possible. Livescience at http://www.livescience.com/37009-human-body.html was able to help me out here.

“….The lungs are responsible for removing oxygen from the air we breathe and transferring it to our blood where it can be sent to our cells. The lungs also remove carbon dioxide, which we exhale.”

Why not a Continuous Positive Airway Pressure (CPAP) machine then, you ask? WebMD at http://www.webmd.com/sleep-disorders/sleep-apnea/continuous-positive-airway-pressure-cpap-for-obstructive-sleep-apnea explains:

“A CPAP machine increases air pressure in your throat so that your airway doesn’t collapse when you breathe in.” CPAP

Got it… and necessary when you have sleep apnea. So the next logical question is why was I prescribed a BiPAP instead. Notice in the explanation from Livescience above that the lungs also remove carbon dioxide. Yep, not enough was being removed as I slept.

I liked this explanation of the difference between the CPAP and the BiPAP from verywell at https://www.verywell.com/what-is-bipap-3015273 :

“The key distinguishing feature of BiPAP is that the pressurized air is delivered at two alternating levels. The inspiratory positive airway pressure (IPAP) is higher and supports a breath as it is taken in. Conversely, the expiratory positive airway pressure (EPAP) is a lower pressure that allows you to breathe out. These pressures are preset based on a prescription provided by your sleep doctor and alternate just like your breathing pattern.”

It’s when you breathe out that you rid yourself of carbon dioxide. But I wanted to know why too much of that in your system is not a good thing. I was delighted to find this scientific, yet understandable, (albeit older) posting by then Ph.D. candidate Shannon DeVaney at http://www.madsci.org/posts/archives/2005-06/1118758011.Gb.r.html. MadSci is a service provided by Washington University in St. Louis.

“…much of the body’s excess carbon dioxide ends up in the blood…. The net effect of increased carbon dioxide in the blood is lowered blood pH (that is, the blood becomes more acidic). The ability of hemoglobin to bind with oxygen decreases with decreasing pH in a phenomenon called the Bohr effect (sic). Because of the Bohr effect, increasing CO2 concentrations indirectly reduce the oxygen carrying capacity of the blood.

BiPAPCarbon dioxide can also react with parts of the hemoglobin molecule to form carbamino compounds. The formation of these compounds directly reduces the ability of hemoglobin to bind with oxygen and therefore also reduces the oxygen carrying capacity of the blood.

So, in these two ways (indirectly by reducing blood pH and directly by reacting with hemoglobin) carbon dioxide can reduce the ability of our blood to carry oxygen to tissues throughout the body where it is needed. It’s a good thing, then, that the excess carbon dioxide in our blood diffuses into our lungs, where it leaves the body when we exhale.”

Except in my case, it wasn’t. Hence the BiPAP to help me out.  If the results of the last two nights continue, it seems I needed an awful lot of helping out… and I didn’t know it. So far today, I have booked a combined 70th birthday cruise to Cuba for Bear and me, conferred many times by phone SlowItDownCKD 2015 Book Cover (76x113)and text with my wonderful sister-in-law – Judy Peck (mentioned several times in SlowItDownCKD 2015) – about cabins, insurance, land excursions, packages, etc., then gotten back to our travel agent with our decisions, spoken with three different doctors and two labs, communicated with three of my daughters, contacted our donation center for pick up, and scheduled several maintenance jobs for my house – and I’m not tired. I haven’t yawned once. I could learn to like living like this.

By the way, between Medicare and my secondary insurance, this is not costing me a thing. Oh goody, more money for our birthday present to ourselves.

Until next week,DIGITAL_BOOK_THUMBNAIL

Keep living your life!

The Breath of Life

Valentinr'sHere’s hoping you had a wonderful Valentine’s Day whether your Valentine was someone else or yourself.  I spent years celebrating myself in various ways: an afternoon at the bookstore, an evening dancing at a new dance hall, even simply coffee with a friend I hadn’t seen in a while, and enjoyed all of it.

This year I decided to celebrate with a book giveaway contest and was thrilled when one of the winners told me she’d never won anything before.  What better gift could I give her than a new experience? So that you can see SlowItDownCKD is a family affair,  the link for the video of the ‘drawing’ is http://www.youtube.com/watch?v=oQZSou8-Nc8. Our wondrous cancer free dog, sweet Ms. Bella, chose the winners while my even sweeter husband, Bear, did the videoing and helped me see what I couldn’t.2015-04-18 21.39.40

I was a bit sad to discover my Kidney Walk days are over (Thanks, neuropathy, you meanie you.), but I’ll be celebrating National Kidney Month in a different way this year and hope you’d like to join me.  The National Kidney Foundation of Arizona at https://azkidney.org/ will be hosting their joint conference with The Cardio-Renal Society on March 11 & 12.  I’ll be attending on the 11th.

Kidney ArizonaSome of you have already asked if you can accompany me.  Of course you can!  Here’s the address for the conference: http://www.swnc.org/. Register there and then contact me at SlowItDownCKD@gmail.com or via a comment on the blog and we can arrange to meet there.

There have been so many medical issues since last week that I wasn’t quite sure which one to use as the topic of today’s blog, so I decided to use the first one that came up chronologically.  That was the pulmonologist. When I was in New York back in October, I experienced some shortness of breath and a burning sensation in my chest while walking at the typical New Yorker’s pace (Oh, how I have forgotten what that’s like.) and climbing stairs to the subway and elevated train two, three, or four times a day.NYC

When I told the pulmonologist, who I was originally seeing for sleep apnea problems, he ordered a lung x-ray be completed two weeks before my appointment.  My lungs were perfectly clear. Yay! Hurdle number one passed.

Next, a breathing test.  While I wouldn’t exactly call this fascinating, it was interesting… and the technician administering it made it even more so as she explained what we were doing each step of the way and, more importantly to me, why we were doing it. I sat in a glass box while she alternately fed oxygen into my lungs or asked me to empty my lungs of the same by forcibly exhaling into a tube.

WebMd at http://www.webmd.com/lung/copd/diagnostic-tests?page=3 has an easy to understand explanation – the kind I like best – of these tests.glass booth

  • Nitrogen Washout: You breathe pure oxygen, and the air you breathe out is collected and analyzed for nitrogen content.
  • Helium Dilution: You breathe a gas mixture of helium and oxygen.
  • Body Box: This is the most accurate of these types of tests. You sit in an enclosed chamber, made of glass or clear plastic and perform a series of small panting breaths. While very accurate, the equipment requires specially-trained technicians to operate it.

My results were not perfect, but my lung capacity was 97% which was just fine for my age.  There goes that qualifier again: for my age. It’s hard for me to accept that time will have an effect on your body, although it’s perfectly logical. Although this is not something terrible, there have been so many borderline issues lately due to my age.

What is itOf course you’re wondering why I’m even writing about this in a Chronic Kidney Disease blog, right? To that end, I took a little jaunt into What Is It and How Did I Get it? Early Stage Chronic Kidney Disease to clarify the issue for us. The first mention of the lungs was in an explanation of your nephrologist’s ROS.

“Then came the Review of Systems [ROS]. My primary care physician asked me questions about my constitution, the functional habits of my body such as weight changes, fever or chills. The cardiac part of my health was covered with questions about chest pain or palpitations. Finally, the lungs were referred to with questions about coughs, shortness of breath and dyspnea.”

That does still leave us with the question of why the lungs were covered at all in this examination for CKD. I found my answer in The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2, in an inquiry into erythropoietin, or EPO.Digital Cover Part 2 redone - Copy

“The National Kidney and Urologic Diseases Information Clearinghouse at http://kidney.niddk.nih.gov/kudiseases/pubs/anemia/anemia_508.pdf explains.

Healthy kidneys produce a hormone called erythropoietin, or EPO, which stimulates the bone marrow to produce the proper number of red blood cells needed to carry oxygen to vital organs.  Diseased kidneys, however, often don’t make enough EPO. As a result, the bone marrow makes fewer red blood cells.”

If you have fewer red blood cells, you are carrying less oxygen to your vital organs… which are the following according to livescience at http://www.livescience.com/37009-human-body.html

“The human brain….The human heart…. The job of the kidneys is to remove waste and extra fluid from the blood. The kidneys take urea out of the blood and combine it with water and other substances to make urine. The liver….The lungs are responsible for removing oxygen from the air we breathe and transferring it to our blood where it can be sent to our cells. The lungs also remove carbon dioxide, which we exhale.”

Okay, so the lungs are responsible for gathering oxygen from the air (for one thing) and healthy kidneys produce red blood cells to carry oxygen to your vital organs (again, for one thing). CKD reduces the oxygen you have since it reduces your red blood cell production. Add unhealthy lungs that gather less oxygen and you’re in for a very tired time.

Keep breathing, keep enjoying, and keep on top of your health.DIGITAL_BOOK_THUMBNAIL

Until next week,

Keep living your life!

Just Breathe

I was in Culver City, California, at a Landmark two day class this past weekend, so this blog was written before I left.  During these weekends, there’s very little free time which means I would have had to spend all Monday morning writing the blog… with a laptop that’s died at least three times already.

Rather than take that chance, I wrote this late Thursday night, since I flew to California on Friday and wouldn’t return until Wednesday. There were relatives to see there and sight-seeing, too.  Sony has a studio with sound stages there (first called Columbia Studio) and, as a recently officially retired actor, I found that too enticing to pass up. There’s a lot more to the studio’s story, but it doesn’t belong in a blog about CKD – unfortunately for me.NIHMS233212.html

Have I ever told you I have sleep apnea?  And that this affects CKD patients? I do and it does. According to http://www.ncbi.nlm.nih.gov/pubmed/20676805, one of the National Institutes of Health’s sites, sleep apnea can raise blood pressure, which in itself is one of the problems of CKD.  It can also result in glomerular hyperfiltration.  The chart above is from their site.  Notice ‘eGFR declines’ is one of the results. These three areas are the most important to us as CKD patients, which doesn’t means the other effects should be ignored.

In order to combat these problems, to say nothing of the rare risk of death due to not breathing, I wear something called a mandibular advancement device (MAD).  I know it sounds like my writing, but I did not make up that acronym.  Honest! The picture is very similar to the one I wear nightly. (I am not promoting that particular brand; it was just the best picture I could find.)mad

I didn’t want a Continuous Positive Airway Pressure machine  or CPAP, as it is commonly called, because I don’t like the idea of being tethered to anything – the same reason I am doing everything in my power NOT to get to the point when I need dialysis.

I didn’t want surgery because of the drugs involved.  I’m down to 48% kidney function, so I’d rather keep anything I haven’t checked previously out of my body. Last time I had surgery, before the operation, I asked for and was given a list of the drugs to be used.  I checked each with my nephrologist, but then – without advance warning – different drugs were used during surgery.

There’s a little more than meets the eye to keeping your oral (mouth) airways open at night. I love that play on words.  Back to serious:  the picture below shows how the MAD forces your airway open by advancing your lower jaw or mandibular.  A really nice by product is that you don’t snore anymore, either.

A dentist who is a sleep apnea specialist needs to monitor your progress.  When I first started, I was having so many episodes of sleep apnea (which means you stop breathing) that it was dangerous.  And here I’d thought I was just a noisy sleeper.

This specialty dentist advanced the metal bars holding the top and bottom of the device together so that my lower jaw was moved further and further forward while I slept and my airway opened more and more. I also used the same rubber bands people who wear braces obstructionuse. I use them to keep my mouth pretty much closed.

While I am out of the danger range, I am still having those episodes  of apnea so I keep driving from my home to Tempe (between an hour and an hour and a half each way depending on the traffic) to have the device checked and adjusted every few months. This specialty dentist, the only one in the Valley of the Sun, then loans me a machine to measure the extent of my sleep apnea and the effectiveness of my MAD.

But that’s not all.  Since the mandibular is forced forward – good to open the airways, not so good for the muscles in the jaw – I also wear a retainer about half an hour after I remove, polish, and rinse the MAD.  This retainer stays in my mouth for about 15 minutes, but I need to physically push the mandibular back in place so that my lower teeth can meet the retainer on my upper teeth.  Result: I can’t talk. (I think Bear really likes this part of the treatment for my Obstructive Sleep Apnea.) Then this has to be brushed and dried, too.

In addition, I use a little machine that looks just like a jewelry cleaning machine in which I place a denture cleaning tablet once a week because there usually is some kind of buildup on the MAD.

This is quite a bit of work (adding to my daily routine of exercise, wearing hand braces at night, putting drops in my poor little macular degeneration suffering eyes… can I get a little sympathy here?), but well worth it.  I am not only saving my life, I’m saving my kidneys… and my heart… and my liver, according to the latest medical discoveries.

The down side?  Well, if I open my mouth while I’m wearing the MAD, I drool. I can hear Bear clapping now: more  silence from me. I could also risk stretching my jaw muscles if I don’t use the morning retainer.  Not using the retainer could result in a small, but permanent, shifting of my teeth as well.  And there is pain when I first take out the MAD.  Maybe I should write discomfort or minimal pain instead. muscles

If you snore, get checked for sleep apnea.  Many people just don’t know they have it and, YES, it could be life threatening.

Did you see today’s (meaning Monday) Wall Street Journal.  In ‘Encore,’ Laura Landro wrote about SlowItDown and me.  I haven’t read it yet, but will be sure to post a link to it on WhatHowEarlyCKD and SlowItDown’s Facebook pages and Twitter accounts.  If you haven’t liked either of the Facebook pages, why not take a look at each of them and do it now?

Again, please be leery of Campusbookrentals.com and Chegg.com which are both attempting to rent What Is It And How Did I Get It? Early Stage Chronic  Kidney Disease for short periods at prices that are higher (for one of them, double) than that of the book.   Make use of the KindleMatchBook deep discount instead.

I’d discovered a place marker as well as the book cover on Amazon’s French site so I wrote them an email requesting they remove the place marker.  They removed both.  I think I’d better brush up on my French.

Until next week,

Keep living your life!Book Cover

To Sleep: Perchance to Dream

First: credit where credit is due.  Thanks to the Bard, William Shakespeare, for providing the title for today’s blog.  Anyone recognize it from Hamlet’s soliloquy?

Although I’d planned to write about my odd experience with the threat of heart disease in next week’s blog, people have already started asking what heart disease has to do with Chronic Kidney Disease. The American Association of Kidney Patients has an easily understood, comprehensive article about just that. In a nutshell, “Individuals with kidney disease are at a high risk of developing hardening of the arteries resulting in heart attacks, heart failure and strokes.” I’d recommend reading the entire article at: http://www.aakp.org/aakp-library/heart-disease-and-kidney-disease/

In addition, although I am not astute enough to completely understand the studies I read about women and EKG testing, there does seem to be conclusive evidence that the female heart IS more sensitive to the EKG (just as Dr. Waram told me) and could provide a false positive for heart disease. Phew!  I feel like I dodged a bullet on that one.

So, what is today’s blog topic? Sleep!  If you remember, I’d had a sleep study just before the EKG panic but never got to write about sleep apnea and CKD.  You should know that I’d spent over four years trying to convince my nephrologist that I was tired because the CKD prevented me from producing enough red blood cells and he spent the same amount of time trying to convince me that wasn’t why I was always so tired.

In retrospect, it’s surprising that neither one of us ever considered sleep apnea.  It wasn’t until one of my many daughters was diagnosed with OSA that I started wondering if I could have it.  Of course, then I spent some time wondering if I were going to consider myself a victim of whatever health problem anyone I knew had. Once I got beyond that, help was on the way.

I found a study at http://www.medscape.com/viewarticle/538872 which clearly links sleep apnea and hypertension. Dr. John J. Sim makes the connection very clear:

“We think there may be a causative factor here; that sleep apnea may be causing direct glomerular injury,” Dr John J Sim (Kaiser Permanente, Los Angeles, CA) told renalwire . “We already know that sleep apnea causes hypertension and that hypertension causes kidney disease.”

If some degree of causality can be shown, it’s possible that treating sleep apnea may slow the progression of kidney disease, the authors speculate.

This is an older study from 2005, but it seems to lead the way to further proof that sleep apnea  does affect CKD. It’s also the only one I could understand {sometimes I do wish I were a doctor} which even mentions glomerular injury.

I think we need a definition of sleep apnea – also called obstructive sleep apnea or OSA – before we go any further, preferably a non-medicalese one. The simplest definition I could locate is from Yahoo! Health: “Obstructive sleep apnea is a condition in which a person has episodes of blocked breathing during sleep.” I should add the episodes usually last 10 seconds or longer.

During those episodes, you wake yourself up by gasping or snorting in an effort to start breathing again.  Now that I understand exactly what is happening, it’s sort of scary.  I hadn’t realized this could be serious.  But, being me, I’m not going to let it.  Hence, the sleep study. 

You don’t just walk into a sleep center to request one of these.  My family doctor, the ever vigilant Dr. H. Zhao of Deer Valley Family Practice, referred me to several pulmonologists – lung and respiratory tract specialists. I chose Dr. Loreman of Central Arizona Medical Associates and was glad I did since I found her personable, informative and easy to engage in a specific discussion about my health. Her suggestion?  A sleep study.  Off I went to make my appointment with Valley Sleep Center.

While they did a terrific job of monitoring my sleep patterns during different sleep states, I was unimpressed.  I don’t know what I expected, but they hooked me up, sent me to sleep, then woke me up to put on a CPAP and sent me back to sleep.

According to WiseGeek.com, “A CPAP machine has a small box connected to tubes through which air flows. The tubes are connected to a mask worn on the face. Straps around the mask fit it to the face over the mouth and nose. For those with sleep apnea, the CPAP is used at night during normal sleep.”

A CPAP was recommended for me. I am not thrilled and made it clear I’d like to try an oral {sometimes called dental} device to see how effective that is before I agreed to the CPAP.  I have reservations about being hooked up to a machine.  Those are my personal reservations.  Many, many people are perfectly comfortable with the CPAP.

There are several different types of dental appliances, so I’ll have to tell you about them at another time.  I don’t know anything about them yet. I had to postpone my appointment with this dental specialist since I had the emergency appointment with the cardiologist at the same time {see next week’s blog}. But before this appointment, there is one of   the two cataract surgeries.

Looks like my body is catching up to my chronological age.  It was bound to happen.  I just didn’t expect it all to happen in one month!!!!

Until next week,

Keep living your life!