Five Things I’ve Learned So Far in Dialysis

Five Things I’ve Learned So Far in Dialysis

I am approaching two months of dialysis very shortly and I want to write about what I have experienced so far.

Several things I have learned about myself in this “new normal”:

  • New co-working space (sort of): Outside of a coffeehouse and a library, I have found that a dialysis clinic is a good place to zone out and be with your own thoughts. After all, you’re not doing much for 3.5 hours, three times a week, but watch television, read a book, or have your nose in your phone. I’ve started to watch The Food Network a lot recently. Not that I’m hungry, but I’m interested to see how you cook food better and be creative.
  • Pass on the water: Drinking water or liquids is good. Too much of it can result in cramping during treatment. Your kidneys can only flush so much out of your system. The same goes with a dialysis machine.
  • Appetite: I don’t have much of an appetite anymore. I have also started to dislike certain foods that I ate regularly before. I get violently sick after nibbling on a Reese’s peanut butter cup or a Sunbelt granola bar.
  • Physical challenges: my balance is a little off, since I’m not carrying so much edema in my legs. It’s weird as hell seeing your legs go from the size of cannons to “normal”. Getting around takes a little more time. My vision has changed slightly. I’m so not ready to get new glasses. I just got new prescription sunglasses in February.
  • Speech and Brain: This is where I have the most trouble with. I didn’t know what septic shock was, until my physician mentioned it after I was released from the hospital in May. Since starting dialysis, I have been unable to form complete sentences, and stuttering and slurring certain words. As I read about the affects of septic shock, I can only conclude why I was stuttering: septic shock effects the entire body: major organs, brain, and limbs.

According to the Sepsis Alliance, nearly 1.4 million people survive sepsis, but they face life-long challenging changes. Sepsis have a high death rate, particularly with the elderly, young, or patients with weakened immune systems. Since I live with diabetes, I fall into the latter category.

In a 2010 article, Medpage Today reported that 59.3% of patients hospitalized with severe sepsis saw worse cognitive or physical function or both by their first post-sepsis assessment.

I knew my kidneys have failed, but no one was able to figure out why I am unable to talk smoothly. Septic shock leaves a mark, permanent or temporary, on your motor and cognitive skills. You feel like you are trying to get out of mud.

The brain, by nature, process what you see or hear, and then sends a message to the mouth to relay what we hear and see. As a life long mild stutter, it has become increasingly difficult to say what I am thinking or want to say.

It is frustrating to run into friends and people I know, and not know their names right away and recognize them, as well as carry a normal conversation without stammering constantly.

The inability to have a conversation with people have become a rather embarrassing predicament.

The cognitive and motor skills are the nerve centers to how we process and dispense information. When those skills are affected, or taken away, by a stroke for example, patients feel trapped inside their own bodies. We take talking as a simple task for which we blindly take for granted.

I will need intense speech therapy/rehab in order to relearn how to talk. I love to write, but not everyone wants to read your thoughts…they want to hear it.

My body is going through changes that, to be honest, frightens me. Have I been sick for so long that I didn’t realize that it was silently killing me?

Going through kidney dialysis, and the goal to get on the transplant list in the fall might be the easiest tasks to do.

It’s my mental and vocal capacities that I worry about. I need those in order to communicate.

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“Off Center”

“We have a chair ready for you.” 

Those six words rung in my head as I started outpatient dialysis this week.

The mere notion of kidney dialysis would make a millennial grimace with visceral pain, shrug it off and go “well, at least it isn’t me.”

Well, since this is about me, being on dialysis has been a strange experience , not just for the obvious reasons.

Dialysis, be definition, is a process for removing waste and excess water from the blood, and is used primarily as an artificial replacement for lost kidney function in people with kidney failure. I had always carried a lot of fluid or excess water in my legs. It was that way for a long time, to which I had taken diuretics to flush the water out. There is so much water in my legs, that when dialysis is used, my legs cramp up. It can be crippling and yet effective.

But that’s not the only thing that has effected me physically when it comes to dialysis.

As a life-long clutterer/stutterer, I have always prided myself with how I speak. Since I’ve started, my brain and motor skills has been so disjointed it scares me. The process of dialysis is to restore equilibrium and to purge the toxins and excess out of your blood stream. As a result of that, my “balance” is way off. On Saturday when visited me at the hospital, I couldn’t spit out one consistent sentence without hitting a block. The more I listened to myself during my conversations with others, the frustrated I got in how I couldn’t say words that would normally come out.

I don’t know how to explain it, but it is weird on how my speech can be out of sorts as I begin dialysis I wonder if anyone has had any strange occurrences or have felt “off-kilter” while starting or have been going through any type of dialysis, “clean-living” or any type of body purge?

Needles Are Easy…Life’s a Challenge

Needles Are Easy…Life’s a Challenge

This is part 1 of 2 of what we call “longreads”, or stories that are longer than 1,000 words. 

On a warm sunny Sunday in late May, my grandfather and I opened up the shed in his backyard. Back in early December, Grandpa said that he had some boxes of stuff that belonged to my mom, sister, and I, that didn’t end up on the moving truck when Mom moved from Waterloo to the Quad Cities 15 years ago.

There was a scrapbook I was frantically searching for to use as a display for my 20th high school reunion the night before. After combing through my apartment for weeks, I all but given up hope of finding it. I ended up bringing my senior yearbook, several team photos from football and basketball, and a graduation announcement to the reunion .

Grandpa and I pulled the boxes out and start sifting through what was in them. One of the boxes didn’t belong to me…it was box of my cousin’s toys. In the other boxes, I found my old junior high and freshmen football jerseys, an old student manager polo shirt when I was worked in the cafeteria in college, and books and term papers (lots of them) from college. I did find that scrapbook, and all of the photos I thought I would never find for the reunion.

But there was one item that stood out. A small white 5′ x 8′ card was sticking out of a pamphlet. On the card was a meal plan and a set of food choices, with a date: 8/15/94. That card was a missing link that perplexed me for the last five years. I knew the events of that day, the month and the year, but never the exact day. After going to Time and Date and looking up the 1994 calendar, the timeline made sense.

August 15th was my appointment to see Polly Eide, a certified diabetes educator.

The card in question. My first diabetes meal plan.
The card in question. My first diabetes meal plan.

Twenty years ago this week, August 12th, I was diagnosed with diabetes. It may mean little to those who have never lived or been associated with diabetes, but similar to cancer and major life events, you remember a significant moment in your life. What transpired over these 20 years has been, at times, a discovery, frustration, isolation, and small victories.

I was always an overweight stocky kid. Smart, polite, timid…and always self-conscious when it came to my waist size. I hated running, but I was somewhat decent when it came to playing sports in P.E. class. I played football, managed the basketball team, participated in band, and worked diligently to maintain good grades in school. What most of my classmates didn’t know was that my parents were going through an ugly divorce and remarrying different people. As a stutterer, it was hard to convey my feelings and thoughts to anyone. I didn’t need further embarrassment as a teenager.

I love food. Check that. I loved sweets. Donuts, cake, ice cream, kool-aid…whatever that was not a vegetable, it was going down in my tummy like Ron Burgundy and scotch. It was common for me to ask for a second helping of food. It was just the way it was at home. Food was a security blanket. I also stayed cooped up in my room, left to my imaginations and thoughts. If I wasn’t doing homework, I would have the radio on listening to a game on AM radio and designing maps of fictional cities and highways.

The summer of 1994 was a period of transition. I was graduating from high school and was heading to college. Between that, a trip to Washington, D.C. and a family reunion in Ohio. The D.C. trip was great, but the trip to Canton and the Pro Football Hall of Fame was going to be the cherry on top of the sundae. Late July, my family drove to Canton. I don’t remember much of the drive there, but I kept getting thirsty and reaching for cans of Mountain Dew from the cooler. We visited the HOF, attended the reunion, and headed back home. I remember the drive back home. I was still thirsty and I needed to go to the restroom badly. No one, including I, noticed any signs at all that something was wrong.

I was scheduled to have a physical exam on Friday, August 12. I had planned on trying out for the football team at Wartburg and an exam was mandatory. I drove over to the Schoitz Medical Building. Schoitz was formerly a hospital before consolidating with nearby St. Francis Hospital to become Covenant Medical Center. Ted Lederman was my family physician. I went in, went through the exam, urine test, and blood test, and then I was sent back out to the waiting room, anticipating to be discharged. The nurse came out and asked me to come back inside and sit in Dr. Lederman’s office. Lederman walked in and sat down. With a matter-of-fact calm manner, he announced that my blood test came back, with a fasting blood glucose reading of 227. “You have type 2 diabetes.” I cocked my head slightly, still confused at what he said to me. I have what?

As he spoke, I wasn’t paying attention at all. It wasn’t learning that I had diabetes that scared me….

…it was telling mom what he said is what scared the hell out of me.

This is what I was expecting when I got home…with diabetes in tow…

Lederman scheduled an appointment for me to see a certified diabetes educator for the following Monday. There goes a chance to play football. Mom’s going to kill me. No more sweets. I drove home. That 10 minutes back across town felt like 20 minutes.  My mind was wrapped around on how to tell my Mom and sister what’s wrong with me. It was bad enough to go through a divorce and getting remarried, but your child has a disease?

I pulled up, walked in and sat down on the stairs. Mom and my sister were waiting for me. The nurse beat me to the punch by calling mom and told her of my diagnosis. I forgot that I told the nurse to go ahead and tell mom, sparing me from dropping the equivalent of a family atomic bomb.

With an exasperated look, with a twinge of being upset, Mom said that we were going to work through this the best way we can. That soften the blow, but we knew that it was going to be a whole new world after the weekend was over.

Polly Eide was waiting for me when I walked into her office. As a certified diabetes educator (CDE), her job was to help newly diagnosed and current patients manage their diabetes. A CDE is usually the first line of support if your blood sugar was out-of-whack, wasn’t sure if a certain food was safe to indulge in, and how to balance a daily routine around diabetes.

The first lesson Polly taught me was how to check my blood glucose. She pulled out an One-Touch II meter. A gray hard-shell case, with a calculator-sized meter, a strange-looking pen-like device called a lancet, and a plastic container of test strips. I was frozen in fear as she took the lancet, primed it, and press the button for the lancet to prick her finger, drawing blood. I hated being poked for blood. I would scream bloody murder if a needle was within 2 feet of me.

After Polly tested herself, she told me to try it. I wiped my right middle finger with an alcohol swab, shook it dry, primed the lancet, and placed it on my finger. I kept flinching as I tried to press the button until Polly took the lancet out of my hand and drew the blood from my finger. How in the hell I’m going to handle pricking my finger like this all day? The next lesson was drawing and delivering insulin. Polly said that there were several ways to administer insulin: in the leg, arm (common area for injection), or in the abdomen. Being the wuss that I was, I chose the lesser of three evils. After all, with the love handles I had around my waist, I figured I could handle it without stabbing my leg or arm. We practiced drawing insulin from the vial, and injecting it into an orange.

If you ever wanted to learn how to give yourself a shot, practice with an orange. It’s the most common form of practice for diabetics.

As a way to show that I was brave and I could do it, I plunged the needle into the side of my abdomen slowly, took a few deep breaths, and then pushed the plunger, sending the cloudy like substance into my blood stream.

It was a different story at home. I would stand in the bathroom, upwards to 30 minutes, mentally coaxing myself to take that syringe, grab a pinch of skin to inject the insulin. I was beating myself up for coming down with this diabetes. My parents warned me to not eat so much food. Now, I was paying for it…for the rest of my life.

My father stopped by the house on Friday afternoon to pick my sister and I up for the weekend in Des Moines. There was still some acrimony my father had towards my mom. Mom, however, moved on, remarried, and had custody of my little sister and I. We hopped in the car and he started to drive. My sister nudged me a bit to tell him the news. I hesitated, so she went ahead and said it.

It was like I ruined his birthday weekend. My sister and I could only afford to get him a birthday card. He expected more. However, my diagnosis of diabetes was the buzz kill I don’t think he ever got over. It was because his father, my grandfather, had diabetes.

It was a big adjustment period when I got to Wartburg. I didn’t understand what subsidized and un-subsidized loans were, what my scholarship entailed and it’s requirements. Nor did I comprehend time management. I thought I knew how to study. Everything was overwhelming out of the gates. It was one long (four-year) learning curve. What wasn’t a learning curve was sneaking into the restroom, locking myself in a stall, checking my blood sugar and taking a shot, in private.

I only told a few people, but that was as close as I was in being open about it.

Twenty years of this has become a normal part of life. Life, on the hand, isn't always normal.
Twenty years of this has become a normal part of life. Life, on the hand, isn’t always normal.

There are 29.1 million Americans that live with diabetes. Out of that 29.1, 8.1 million Americans are unaware (or worst, denying the fact) that they are diabetic. Most people assume that diabetes is a man-made health issue. That’s not entirely true. Only part of it. A significant factor is hereditary. If a parent (or another family member) lives with diabetes the chances of you living with it increases. It’s affects skinny people, fat people, people regardless of race, sex, religion, class, and geography. It’s not just sitting on a couch and watching television all day, eating junk food, not being physically active, and playing X-Box. Diabetes affects people who are healthy and physically active. It’s knows no boundaries.

Diabetes is caused by your pancreas’ inability to produce some or no insulin to offset the levels of glucose (blood sugar) in your system. Insulin is the gas that keeps your body from running on empty…or a potential road trip to death.

The struggle with living with diabetes intensified after college. A groin infection and high blood sugar landed me in the hospital. I went through three endocrinologists at Mercy in a two-year span, not because I was a bad patient. Far from it. It was that they all decided to go into private practice.

Imagine one of these doors falling on you. Yeah, not a good feeling.

There was one night where I went to bed, and I woke up the following morning, in front of my closet door, with the one of the sliding closet doors off its hinges, on my back. I had a serious hypoglycemic episode during the night. The only recollection I had was rolling out of bed and trying to crawl, in my sleep, and my muscles froze. I laid there, having hallucinations in my sleep, talking out loud.

In 2011, there were 282,000 emergency room visits due to hypoglycemia (low blood sugar) and 175,000 visits due to hyperglycemia (high blood sugar). Diabetes is a constant balancing act of numbers, blood, carbohydrates, protein, and other stuff. You can’t be too low and too high. It’s like trying to find that sweet spot on a baseball bat. When you know where that spot is, you’re assured of getting a base hit every time.

When your glucose is high, you feel lethargic and tired. Your mouth feel like someone stuff a bag of fruit-flavored cotton in it: it’s dry and have an awkward fruity smell. The blood in your body feels like it was replaced with oil sludge. You feel like crap. You’ll feel even worse when you test your glucose. 200…300….335…or higher. Low blood sugar is vastly different: a cold sweat, body shaking, you become irritable and cranky. You’re looking for juice, candy, any type of sugar to boost your glucose level back to normal. It’s like being drunk, without the alcohol.

I am not shy in admitting I was not a role model when it came to managing my diabetes. I’m also not shy in saying that I’ve been a survivor through this current recession.

But being a survivor nearly came at a cost.

(End of Part 1)

Update from “Reset”

Thankful to see this skyline, family, and friends. It could have been much worse.

I wanted to give you an update on a blog I wrote on September 26th, titled “Reset”, where I wrote about my recent diagnosis of proliferative (advanced stage) diabetic retinopathy, a condition that is caused by damage to blood vessels of the retina due to long-term and/or poor control of Type 1 or Type 2 diabetes.

The encouraging news is that the treatments (laser and medicinal injection in both eyes) have dramatically reduced the swelling and eliminated most of the damaged blood vessels.  Now, I need to stress that the treatments does not cure diabetic retinopathy, only to slow down and stop the progression of further retinopathy for the time being.

You could suggest that I’m back to normal, but what is normal these days?  What is the “new” normal, as some people defined the period after the 2001 domestic attacks?  In my view, you try to get to as close to normal as you can.  It doesn’t mean that everything will return to what it was.  It doesn’t work that way.

There is a sense of newness, sort of the start of a new chapter where the story starts to get weird, with its twisted plots.

Nevertheless, life has resumed to its normal pace.  I can drive, with the restriction of no freeways, hopefully until Christmas; limited schedule at work with weekly treatments; my A1c is down nearly 50%, and I feel like my old self again.

Well, not entirely my old self.  I’m 36 and as an adult, you have to make some adjustments when it comes to ensuring that your health isn’t taking a leap off of the “fiscal cliff”, if you catch my drift.

If there is anything that is thankful is that my vision is improving each day.  So, I can’t use that as an excuse when it comes to resuming full-time with this blog.

I have a lot of guardian angels around me, that’s for sure.

To that, I give thanks to all of you.

The Second Eighteen Years

Support is important.

This past Saturday, I celebrated an anniversary.  It wasn’t the wedding variety, a breakup, or the time I taught myself how to catch a baseball with my right hand, so that I wouldn’t have to use my left hand to catch the ball, slip my left hand out of the glove, and throw it.

Saturday marked the 18th anniversary that I was diagnosed with diabetes.  August 18, 1994 was the day I learned that I was going to live with a chronic illness for the rest of my life.

The first 18 years of my life was being a kid.  The second 18 years has been much different.  I don’t consider myself a perfect diabetic by any means.  I’ve had my good and bad days, and days that made me say “how in the hell did this happen?”  Case in point:  In 2005, I thought my blood glucose was doing well one night after a pasta dinner.  Around 10:30 that evening, I headed off to bed.  The next thing I know, I’m on the floor, in front of my bedroom closet, with one of the sliding doors on top of me. 

Hypoglycemia is unkind to us PWDs (people with diabetes). 

In assessing the second 18 years of my life, I’m fortunate.  I still have my eyesight, though glasses do help see things that some umpires miss.  Limbs still intact, though I’ve had some issues with my legs.  It’s no fun when your legs and feet swell up and feel like the Goodyear blimp.  That’s what ottomans are for.  Your feet needs to relax too.

People ask me if I wished I didn’t have diabetes.  For a while, I didn’t have a good answer to offer.  On one hand, fate assigns you something that you didn’t ask for, and on the flip side, there is a reason and a purpose for you to be dealing with it.  I’m in a position today in which I can say that I would rather live with diabetes.  Why?  Because I have a story to tell and people who need to hear it, if they’re willing to hear it.

Which is why despite telling friends and acquaintances about living with diabetes, there seems to be a level of apprehension or indifference towards talking about it.  We are comfortable talking about cancer, simply because we know more people who were diagnosed and have survived cancer.  Cancer is more commonplace, given it’s profile by individuals like Lance Armstrong and groups like the Susan G. Komen Foundation.

When it comes to children, we’ll bend over backwards, go to the moon and back to ensure children get the best care, love, and tools they need to be successful.  That’s a natural response by adults to that.

However, when it comes to our health, as adults, we turn skittish, for fear that what we reveal may bring unwarranted scorn or shame.  Mental health, multiple scerlosis, and other chronic illnesses and diseases are still considered as taboo in public to talk about, especially among those in my age group (young professionals). 

For me, it is not worth keeping silent about diabetes.  If I have a hypoglycemic (low blood sugar) episode, I want my friends to know what to do to if I start to feel dizzy and slurring my words.  If I need support, I want my friends to show support, whether advocating, financial, or in spirit, to educate others what diabetes is.

I don’t ask a lot out of my family and friends, because it’s not my nature to do so.  I would rather give than receive.  But I know that eventually I have to ask for support and help.  My health isn’t going to remain the same in the next 18 years, as it was in the first 18 years and the second 18 years. 

The Central Iowa Step Out to Fight Diabetes Walk will be held on October 6th, starting from Nollen Plaza, thru East Village, to the Capitol and back to Nollen.  To learn more about participating in this year’s walk, contact the American Diabetes Association of Iowa at 515.276.2237 ext. 6865, or jmatalone@diabetes.org

“This Old Cub”: Ron Santo (1940-2010)

 

Ron Santo (1940-2010)

This morning, beloved Chicago Cubs third baseman and radio color analyst Ron Santo passed away at age 70 from complications from bladder cancer.  Santo played 15 seasons for the Cubs and then 20 seasons in the radio booth with Harry Caray, and then with Pat Hughes since 1996.

I’m sitting here, tapping on my desk, wondering how to write something about someone who wasn’t just a part of my daily routine between April and October, but a person who made the day go by with ease, click your heels when the Cubs win, and moan in agony when the Cubs find a way to lose in spectacular fashion.  Yes, Ron Santo wasn’t the best color guy in sports or the most-polished.  He didn’t need anyone to tell him that.

 

Though I am Cubs fan, Jack Buck's passing in 2002 was tough to deal with as a baseball and sports fan..

 

 

He already knew he wasn’t perfect.  His body told him that when he was 19, when he was diagnosed with Type 1 diabetes.  His heart told that when he had bypass surgery, and when his legs were amputated after years of living with diabetes.

Despite all of that, and his critics, either fair or unfair, Ron Santo was perfect in the blue pinstripes on white.  He was perfect inside Wrigley Field.  He was perfect for the Cubs fans.

Why?

Ron was himself.  The same person playing behind the bag at third base, was the same guy behind the microphone, and the same guy away from Wrigley.  As a diabetic, he didn’t simply raise money for the Juvenile Diabetes Research Foundation (JDRF), he advocated the awareness of diabetes.

People loved him, for his foibles and enthusiasm.  No one knew what he was going to talk about, whether it was his toupee or his teammate Randy Hundley.  It always came back to the game he was calling.

 

"My oh my!" was Dave Niehaus' calling card in Seattle. The Voice and Face of the Mariners died in November 2010.

 

 

Maybe it’s why I can’t come up with the perfect words to offer a perfect tribute to Ron Santo.  Jack Buck was the Cardinals, Phil Rizzuto was the Yankees, and Dave Niehaus was the Mariners, until his recent passing.

Today, on the northside of Chicago, Ron Santo was and will be the ultimate Chicago Cub.

If I had the opportunity to ask Ron, like so many others, what would be the most important thing for him, the answer is easy.

Holding a World Series trophy.

Sports and News Links – August 17, 2010

Edmonton manager Brent Bowers and umpire Billy Van Raaphorst. Courtesy of Brian Gavriloff/Edmonton Journal

It’s been a week-and-a-half since I aggregated some stories of interest to post.  Let’s take a look at a few today as the rain continues to fall on the Iowa State Fair.

Jeff Perlman, Sports IllustratedBrent Bowers outburst towards umpire Billy Van Raaphorst in a minor league baseball game was not a surprise.  But it was what Bowers said to Van Raaphort that forced him to resign and brings light into the gay and lesbian angle in the world of sports.

Carl Hartman, AP via ABC News:  Several Democrats and Republicans are advocating a return to civility as they point to Calvin Coolidge as a great example.  I wrote a post about civility in June featuring former Congressman Jim Leach.

Francisco Rodriguez aka K-Rod aka K-O'ed for the year

Lisa Olson, Fanhouse:  New York Mets reliever Francisco Rodriguez (aka K-Rod) physically assaulted his girlfriend’s father near the team’s family room inside Citi Field after a game.  The after-effects of the incident puts the Mets in familiar territory:  how to mishandle a PR fiasco without really trying.

Alan Schwarz, NY Times:  a peer-reviewed paper to be released on Wednesday could reopen the diagnosis of ALS and Lou Gehrig.  The study suggests that the demise of athletes like Lou Gehrig and soldiers given a diagnosis of amyotrophic lateral sclerosis, commonly known as Lou Gehrig’s disease, might have been catalyzed by injuries only now becoming understood: concussions and other brain trauma.

Nicole Purcell, dLifePurcell writes a poignant column about how her aunt’s choice in not taking care of her diabetes led to her death have made Purcell vigilant in managing her diabetes and making the choice to live.