March Madness

I'm in Vegas.

Starting March 10 11

join me here on the blog to celebrate

National Kidney Month

UPDATE: I've been sidelined for the past couple of days due to a fever and stomach issues.  I hope hope HOPE to have a finished post up tomorrow. 

Stay well, peeps.

"But you're so young!"

It's the last week of  National Kidney Month.  Boo! I hope you enjoyed it as much as I did.  Can't leave without one last post.  Happy Kidney Month!

I've talked a little about my story and how I learned I had kidney disease in my "About Me."  But I thought it would be great to just reiterate a few things that I've said, and talk about what I've learned over the last 10 years, living with kidney disease and a chronic condition.  If this helps one person, then this post has done its job :)

You don't have to be old to get sick.  Most people know this but I get it all the time--the surprised reactions when I tell people I have kidney disease.  Kidney disease, or any disease, can strike at any time, when you least expect it.  I don't say this to scare anybody, but just because it's a fact.  I was diagnosed with FSGS  when I was 16 years old.  And at 26, people still remark "You look so young." That's because I am young!  I just also happen to have a chronic condition.  

You don't have to have an unhealthy lifestyle to get sick.  I've mentioned before that my mom cooked all our meals growing up.  We rarely ate fast food or ate at restaurants, and no one in my family is obese.  And as a teen I was pretty active. I did ballet for 10 years.  I say this because kidney disease is a condition that has many factors that can play into developing it.  Those factors are high blood pressure, obesity, and diabetes.   All of those conditions are linked to what most people perceive as "unhealthy lifestyles"-- eating too many fattening and high sodium foods and not exercising.  I believe that everything in moderation is fine; that taking a handful of vitamins every day will never be enough; that eating meat is still OK; that going organic is just a good practice in general, because who wants extra pesticides in their food; that making things from scratch is rewarding; and that exercising makes you feel good.  I believe all of these practices make you stronger and make you feel great, but they don't make you disease-proof. Some things are genetic.

You don't always feel sick when you are sick.  I've read stories of people finding out they have kidney disease at the last possible minute.  Basically, when their kidneys had failed.  That's because with many conditions, you may not actually feel sick until things get really bad.  I didn't start developing symptoms of kidney disease until winter of 2002.  And they would have gone unnoticed.  Teenagers aren't always as quick to point out that they're not feeling well.  I however, was feeling fine. Great actually!  But after a weekend band competition in Florida, I noticed there was swelling in my ankles, and it seemed like I'd even gained a little puffiness in my midsection.  Well, swelling and weight gain aren't that unusual, so my parents told me to just put my feet up or soak in the bath. No big deal. I went through three weeks of this, all the while feeling just fine.  Then I woke up one morning, face inflated like a balloon.  I still felt fine, but my parents agreed, that it might be time for a trip to the doctor.  It's the little things like this that tend to go unnoticed.  Fatigue can be excused by too many late nights.  Nausea can be explained undercooked meat perhaps.  This is unrelated, but my fiance's wrist has been hurting for at least five years now!  But the point is:  why don't we investigate these things?  Is it because ignorance is bliss, or are we scared to find out that something might be wrong?  The reason I've been able to keep my crap kidneys for the past 10 years, without dialysis until now, was because of early detection.  Annual doctor's visits, or more often if you know your medical history, are essential to stopping a disease in its tracks.  

Sickness doesn't have to define you. There's a lot of people who were surprised to hear that my kidneys were failing.  And these were people that I'd say are pretty close to me.  It's because the first thing I say when I meet people is not "Oh, I have kidney disease and I need a transplant."  And it's never been that way.  Sure it may come up in conversation, but before this blog, I don't think I even talked about it that much with other people besides my family.  And I'm proud of that.  I've never wanted the fact that I'm sick to hold me back from doing anything.  Hell, I don't even want to cancel my wedding OR honeymoon!  But just because I don't go around telling every single person I have kidney disease right away does not mean it doesn't affect me.  Because it is a chronic condition, more than half of the decisions I make in a day are influenced by my illness.  But what about the other half? I try to use the other half of my decisions to make life as great as possible for myself and someone else hopefully. 

When I was first diagnosed with kidney disease, I seriously thought my life was over. All that was in my line of sight was death. But two nights ago, I was saying my prayers. And I started praying to God as I usually do, thanking him for my apartment and my job...then I suddenly thanked him for "my swollen ankles." Then I started thanking him for all the things in my life that are...less than desirable I suppose you can say.  I know it sounds crazy but I started thanking him for all the symptoms of my disease! I don't know why, because I know that God does not wish suffering on me.  But what I've realized over the past 10 years that all of this, the course that my life has taken, it's for a reason. It's part of a bigger plan. And I can honestly say that because of that day 10 years ago, when I face puffed up like a balloon, I am a better person.  Nowadays, when I tell people I have to have a transplant and they say "Oh, I'm sorry," I almost want to say "I'm not."  I'm not sorry.  In fact, there's some days where I feel so blessed that I don't think I could feel more blessed even if I was healthy. And I think that's the biggest lesson I've learned out of all of this.  

 

World Kidney Day 2013!

It's the third week of  National Kidney Month.  Yay!  So throughout the month you'll see more posts on the science of kidney disease, treating kidney disease, and living with kidney disease.  And most importantly, what you can do to support yourself or anyone you know with chronic kidney problems.  Happy Kidney Month!

So I didn't wear anything orange today. Boo! I know.  But the only orange shirt I happen to have is from when I volunteered with NKF for KEEP back in February.  And it's an orange T-SHIRT.  Not exactly work appropriate.  But that doesn't mean I can't celebrate!  Today is World Kidney Day. Yay!  Go kidneys!  Here are some random facts, courtesy of the National Kidney Foundation:  

• 26 million Americans are affected by Kidney Disease
• A lot of these people are located in the South, where all the good homecookin' is...but also where a lot of obesity, high blood pressure, diabetes and kidney disease is
• 1336 people in Maryland, Virginia, D.C. and West Virginia are on dialysis
• Alabama, Mississippi, and Tennessee are home to about 1500 dialysis patients
• Our kidneys do more than filter blood; they help create it, as well as stabilize salt, potassium, and acid levels in the body.  
• Early detection is the key to surviving kidney disease.  Many people who have it, don't know they have it!  And the same goes for people who are at risk.
• There is no cure for kidney disease.
• Dialysis or transplantation are the only ways for patients with End Stage Renal Disease to survive.
• The average waiting time for a kidney transplant from a diseased donor is four to eight years. 
• Kidneys from living donors have the highest success rates!  Patients with end stage renal disease can live off a kidney from a living donor for as long as 20 years! 

When I was diagnosed with kidney disease, I didn't know what to expect. And neither did my parents.  But early detection saved my life!  I know many people I talk to hate going to the doctor, but I highly recommend having an annual physical if you have a history of kidney disease, diabetes, heart disease, high blood pressure or any chronic condition in your family.  

On World Kidney Day, spread awareness about this disease and the risk factors.  Check your blood pressure. Have your friend's blood pressure checked!  Take on a low-sodium, non-processed foods diet for a day.  And if you feel called to, look into becoming a donor for someone who needs it at http://www.kidney.org/transplantation/beadonor.cfm. 

Seriously, the gift of life is one of the greatest gifts you can give! AND...I think you get tax breaks if you do it.  I think I would totally donate my organs if I thought someone would want them.  But right now, I'm pretty sure if I donate my kidneys, the recipient would probably only be able to get a weekend...maybe a week's worth of function out of them.  Yeah so, if you're entire body hasn't gone to sh*t, donate something!
 
 

Know Your History, Know Yourself

It's the second week of  National Kidney Month.  Yay!  So throughout the month you'll see more posts on the science of kidney disease, treating kidney disease, and living with kidney disease.  And most importantly, what you can do to support yourself or anyone you know with chronic kidney problems.  Happy Kidney Month!

Last month, Saturday, Feb. 9, I woke up at about 7 A.M.  I was feeling a bit nervous.  I didn't know what to expect.  I ate a big breakfast and put on comfortable but decent clothes, wondering about what every one else would be wearing that day.  I wondered if anyone would talk to me, or if everyone would separate into their own, "We know each other and we know what we're doing" cliques.  I was a little sad because I was taking part in this new experience for the first time without Ben.  Not that I can't do things on my own, but it would have been nice to know SOMEONE I remember thinking. But I had to remind myself: this wasn't about knowing people or having someone to talk to.  It was about helping people, and learning how I can spread awareness about kidney disease.  And, fortunately, I was able to (I think) succeed, in helping one person, spreading a little bit of awareness, and I even met and talked to some incredible people!  This, ladies and gentlemen, was my first experience at KEEP.

For the past few years, I've been wanting to volunteer with the National Kidney Foundation.  It took embarking on a new goal-setting adventure with my friend Abe for me to finally get it together.   After procrastinating for too long, I last minute committed to participating in a Kidney Early Evaluation Program (KEEP) event. KEEP is one of NKF's biggest, monthly volunteer events.  For about four to five hours, volunteers welcome members of the public into a location like a school, church, or convention center, and test them for free to see if they are at risk for or have kidney disease.  Isn't that cool?!  NKF draws in volunteer nurses, doctors, dieticians, and people who can't do anything really, like me, to help run these programs.  I was with a group of women that ran the registration desks.  Part of my job was to make sure each person that registered for KEEP was eligible for the free test.  To get the free test the patient had to meet one or more of these criteria:

• the patient has high blood pressure
• the patient has diabetes 
• the patient's mother, father, brother, or sister, has one of the above and/or kidney disease

A positive answer to any of those risk factors entitled the patient to a FREE blood pressure check, blood draw, and urine check, and a meeting with one of the doctors and dieticians.  Of course, some people didn't know if they had either of those risk factors, which meant they could only get their blood pressure checked for free.  And believe it or not, a good chunk of people found out THAT DAY that they had high blood pressure.  Remember, what I told you about HBP being the "silent killer."  Lucky for them, they were able to get it checked for free then continue on throughout the rest of the KEEP program to see if there were any other warning signs.  Early prevention is the best way to go!  I've heard several stories of people not finding out they had kidney disease until both the kidneys failed!  

Besides volunteering, another thing that I have been longing for ever since getting diagnosed, and ever since finding out that I need a transplant, was a connection.  In my bubble of personal relationships, there's not really anyone who's had to go through something like what I have.  Recently, my aunt had a biopsy on her brain, and the tumor turned out to be noncancerous (Yes!).  I talked to her about her surgery, which was comforting because she was another person who'd had major surgery.  But really, nobody else...gets it.  No one else is sick :-/  And no one else has ever been the process of recovering from being sick. And I mean really sick.  Like this kinda sick.  Like "you need another person's organ to stay alive" sick!  Well, secretly, before going to KEEP, I hoped that I would meet people I could talk to about this.  And it turns out, that volunteering with KEEP at NKF is the best place for this.  I met a woman who donated a kidney to her coworker a few years ago.  She helped us check in folks at the registration desk.  Another girl on my registration team, looked like she was a bit older than me, and on her second transplant, and she'd gone through dialysis before.  And my registration desk partner...well she was just there because she loves volunteering with NKF!  

It's weird but, I sort of felt like I belonged to a little club now.  I love love love getting those encouraging words from my friends and family members.  It really helps a sick gal like me.  But somehow talking to people who have already gone through the process turned the light switch on, and it allowed me to see that people, real people, people who really have no clue who I am except that my kidneys are failing...people who also only have one kidney, are making it through this, and they know I can make it to because they made it already.

Anyways, the moral of this blog post, volunteer somewhere!  It doesn't have to be with NKF.  If it is, awesome!  That's a great way to commemorate National Kidney Month.  If it's not with NKF, awesome! It's still a great way to give back and help someone, the way so many others have helped a sick gal me.

Cookin' & Realistic Expectations

It's National Kidney Month officially today.  Yay!  So throughout the month you'll see more posts on the science of kidney disease, treating kidney disease, and living with kidney disease.  And most importantly, what you can do to support yourself or anyone you know with chronic kidney problems.  Happy Kidney Month!

In another life, this blog would be a food blog.  You know the saying, "Eat to live"?   Well, I LIVE TO EAT! Growing up, my mom stayed at home with my sisters and me for a few years. And five out of seven nights a week, she made dinner for us.  Yes, you read that correctly.  My mom cooked dinner for us just about every day until I left for college.  It wasn't until I grew up that I learned this practice of cooking dinner every day is uncommon, or even unnatural.  But living with kidney disease reaffirmed why it's even more important for me to control what goes into my body.  Many people with kidney disease also have high blood pressure, diabetes, heart problems, and mild to severe obesity.  And I have to wonder:  have I managed to maintain this much energy and health so late in the game of kidney failure because of my diet? People often balk when I tell them that at 26, I cook five days a week, and only allowing myself to cheat on my diet with fast food or restaurant trips on the Saturdays and Sundays.  It doesn't work for everyone, but here's five reasons why I do it:

1.  Money:  It costs 1/4, about $25, of Ben's and my grocery budget to eat a meal at one of our favorite restaurants.  I try to budget $100 a week for groceries. It may seem like a large number, but that amount pays for breakfast, lunch, dinner, snacks and dessert for five, sometimes six days a week.  Making my lunch at home costs me about $3.50 per day when you break it down.  That's HALF of what it would cost to eat at Chipotle ($7/meal) every day. 

2.  Sodium:  The majority of people with kidney disease also have high blood pressure (HBP). HBP is known as the "silent killer."   Doctors say one in five people who have HBP don't know they have it, because there are no visible symptoms. Meanwhile, HBP spends years quietly attacking your heart, lungs, kidneys, and brain if left untreated. One way to lower your blood pressure, is to reduce your sodium intake.   A while ago I read a book that said the amount of added salt in American food has increased by a whole teaspoon over the last 50 years.  Which means,  most Americans are eating food that's too salty, they just don't know it because our taste buds have adapted to the increase. The only way to control how much salt is in your food is to...cook it yourself!  When we purchase food prepared by someone else, we give  control of our diets to another person, and trust them not to poison or kill us.  But not every chef  knows each person's state of health. 

3.  I Can Have It My Way: Another easy way to cut back on sodium, I've found, is to cut out as many "processed foods" as you can bare.  For the purposes of this blog, processed foods refers to canned soups or bottled sauces, frozen dinners or snacks, box meals like Hamburger Helper, and processed meats like sausages.  And there's a whole bunch of other items that would go into this category.  Basically, if you're buying something not from the produce aisle and it says anything like  "Heat for five minutes and then you have a fabulous dinner or snack!" it would be considered processed. And if you look at the nutrition labels on the backs of these items, you'll see that the makers load all of these types of meals with sodium, sugar, and saturated fat. Now, some things are better out of the bottle. Like Ketchup! But you can actually make ketchup, and all of the other things listed above from scratch, with fresh ingredients, and with half the sodium, fat and sugar content.  Amazing right?!  Obviously, convenience meals have their place. After a "hell day" at work, sometimes I want nothing more than to warm up some Kraft "blue box" mac n cheese.  And I love a good frozen chicken nugget.  But I can't eat that stuff every day anymore, unless I want to make myself VOMIT nonstop.  Ask Ben.

4.  Fun:  I don't just cook for myself because I want to stay healthy, but I actually enjoy it.  I really do love the process of chopping, mixing, heating and baking--creating--and then finally EATING.  

5.  Education:  I've found that the biggest roadblock to cooking for yourself can simply be lack of know how.  I didn't grow up watching my mom cook for my sisters and me.  In fact, she usually yelled at us to get out of the kitchen!  And I remember the first thing I cooked for Ben--  peanut butter cookies.  And they were disgusting.  I cried and I cursed and wondered "What went wrong?!" But I didn't give up...because I love eating.  But I'm also financially challenged. And I realized that the only way I was ever going to get the amount of food I want, for the amount of money I have, in the way I need it to be made was to put those ca-ca cookies behind me get back into the cooking saddle.  I try out new recipes to keep things interesting but also to learn how to do new things. 

So if you think I'm pretty strict now, once I have the transplant my diet will go into overdrive.  There's a huge list of things I won't be able to eat, or will have to eat in severe moderation.  But I stopped huffing and puffing about my diet a long time ago, and have learned to just go with the flow, and treat myself every once in a while. 

However, let me be clear:  I am NOT someone who thinks cooking for yourself, going vegan, eating completely organic or going on a juice cleanse or whatever extreme, trendy diet you name will prevent you from falling seriously ill.  I think SH*T Happens.  Life Happens. Sometimes people take all the right vitamins and do all the right stuff and STILL get cancer.  And sometimes people eat off the Dollar Menu every day and live until they're 100.  I don't believe that a healthy diet like mine or any other can prevent any severe illness.  Ask my doctors:  I didn't get kidney disease because of something I did or didn't do.  But I do believe that making healthier choices about what to eat over time can strengthen the immune system, making it easier for you to fight off and overcome whatever health battles we face in our lifetime.