NKF at the Expo!

Earlier this month, my mom, one of my sisters and I volunteered with the National Kidney Foundation at the NBC4 Health Expo! 

Photo Credit: National Kidney Foundation Serving the Capital Area

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.

Things Remembered

“Friendship is born at that moment when one person says to another: “What! You too? I thought I was the only one.”

~C.S. Lewis

I was staggering about in my company's "pantry," the employee lounge that's filled with free coffee and tea dispensers and rows of snacks that would rival any 7 Eleven and Whole Foods check-out counter.  I needed gluten-free chocolate chip cookies, then a pack of Gushers and of course a straw for my covered cup of hot water.  I dipped in between pairs of people standing around, talking about their days up to that point, and football. I carefully stepped in between a man and a woman--a woman who, with concern in her voice, was asking "How are you?  How was dialysis today?" 

I had already walked away from them to put my stash on my table. But I did what a very nosy Jewel would do and walked back up and stood very close to the couple, pretending to grab a pack of barbecue Pop Chips.  I pretended to grab other things too, like packets of sunflower seeds, another bag of gluten free cookies, while sneakily pulling tidbits from this man's and woman's conversation.  Like a cat, I was waiting for my time to strike, to jump in and show him our commonalities.  To show him that even though he is a middle aged, white man and I'm a young, black woman, that we share something.  We both know what it's like when our bodies fail us. We both know what it's like when someone tells you that you need something, and you don't have any control over when or how you'll get it.  

Several more "fake" trips up to the grocery aisles of my job's employee lounge, the man and woman finally end their conversation. And I take my shot.  

"I'm sorry but...did you just say you were on dialysis?"

From the moment the question left my mouth, we were engaged in such a lively conversation you would have thought we were old friends.  Anyone walking in would have said, "Wow, they seem to have a lot in common.  They must know each other well."  The truth was that I didn't know him before that day.  Yet somehow, after I asked my question and he answered, it was as if we knew a whole lot about each other.  

We exchanged disease explanations and kidney functions.  I gave him some tips on getting a donor set up as quickly as possible.  I told him about my transplant.  I told him about my doctors and my hospital.  We made plans to have lunch together.  

Ten months ago, I was walking around in that same pantry, grabbing what was probably my fifth cup of coffee for the day.  I was exhausted. I looked exhausted.  Dull. Bored.  Unhappy.  Ill.  And some might say lifeless.  And I would walk into work every day wishing that I wasn't there.  Or even wishing that someone could just just know automatically what I was going through so I wouldn't have to explain it to them.  That way I wouldn't have to answer a billion "Are you OK?" questions throughout the day.  No, I'm not OK, was what I wanted to say all the time.  But I didn't say that because, when you have a chronic illness, sometimes it's just not worth getting into with someone who might not even be able to relate.  

I hope that I was that person for my new friend from the pantry. I hope that I was the person who can relate.  The person for whom you don't have to explain everything to.  I hope that I was the person who just gets it already.  

I wonder if he knows that he was that person for me.  I'm nearly a year out of transplant and technically, I don't have kidney disease anymore.  It was still such a blessing to meet someone who just gets it without me having to explain it to him.

My new friend from work has kidney disease and is currently on dialysis.  

Like me, he needs a kidney transplant. 

 If you or anyone else you might know is interested in becoming a living donor, feel free to leave a comment on this post or email me at jeweledwardsdc@gmail.com.

Why Not Me?

One of the first things Ben and I learned at our transplant consultation is the number of people on the transplant waiting list.  That is the number of people waiting for a life-saving organ transplant from a diseased donor.  If you go to UNOS.org, the homepage shows you the number of people currently on the list (119,467), the number of active candidates (76,506), the number of transplants that have occurred since January (14,105), and the number of donors (6,961).  When I looked at those numbers back in January, the time that I was added to the list, I felt sad, confused, and frustrated.  Nine months later, I’m still baffled by them.  

If you can look at those numbers and honestly say that nothing is wrong, then good for you. I wish I could be that optimistic. But when I look at those numbers, I see that something is very wrong with nearly 120,000 people who need a transplant to live and only 14,000 people receiving them.  And many of the people on the waiting list have been there for years.  YEARS.

. 

FACT:  The majority of the people on the transplant waiting list need a kidney.  80% of those people are waiting for a kidney.

FACT:  The average waiting time for people hoping to receive a kidney from a diseased donor ranges from 5 to 8 years.  Does anyone else think that is a crazy long time to be waiting for something you NEED TO LIVE? Because I do.

FACT:  18 people on the waiting list die every day while waiting for an organ transplant.  As someone who went through the waiting process, this thought crossed my mind often.  My kidneys didn’t work.  There were nights when I’d lay awake thinking about when I’d die. How long would it take the poison that my kidneys weren’t removing from my body to reach my heart or my brain? 

FACT:  Any healthy person can be an organ donor.  Ever since coming forward with my story about receiving a transplant from my dad, more and more people have asked me about becoming an organ donor. And I think that is freaking fantastic.  No, you don’t have to be dead, like it says on your driver’s license.  You can be a living, breathing, healthy person and offer to be an organ donor for someone.

FACT:  You have two kidneys, but you only need one.  Trust me.  I only have one kidney, it’s not even mine, and I’m doing jussssst fine.  Don’t believe me? Ask the best dad in the ENTIRE WORLD, my dad.  In fact, I think he has MORE energy now than he did before the transplant. And he only has one kidney.

FACT:  You can donate to someone who’s not a family member.  Sometimes family members aren’t the best donor matches because of hereditary conditions.  Really, anyone can donate to anyone, as long as blood types match and tissue types match.  But the doctors take care of that and make sure everything is in order.

FACT:  You can donate to someone you don’t know.

I say all these things because most people I’ve talked to have so many misconceptions about organ donation, especially kidney donation.  But the questions people ask me are actually more complicated than the donation process itself.  Really.  My hope is that one day, I’ll go to UNOs website, and I won’t see some crazy number like 100,000 people waiting for an organ with only 6,000 donors.  My hope is that people who want to donate but haven’t yet because they don’t know where to begin get more education on the process and are able to go through with donating, if it is their wish to do so.  And that’s a pretty sweet wish, if you ask me.  

I have never been in the business of pressuring people.  But I’ve always been blunt (you’ve been reading this blog, right?).  So that’s why I’m not afraid to ask, why don’t you donate?  Because I honestly think if more people asked themselves that question, there’d be a lot more donors, and a lot less waiting.   

Anyways, enough about you and more about my friend, Jean.  Well, we’re not really friends, but we’re more like friends in the struggle.  Jean is from California and has been living with a form of kidney disease called polycystic kidney disease.  Like me a few months ago, Jean needs a kidney, stat.  Like, she needed it yesterday.  And her family and friends are really hoping to find a donor for her soon.  Like all of the people on the transplant list, Jean cannot wait five years for a kidney.  I’m sorry but, that’s just not going to cut it.  But guess what, inside everyone, there is a living donor. A living donor for blood, bone marrow, eye balls, hands, tissue, liver portions, lung portions, and whole kidneys.  Because, like I said, normal people have two.   

Do me a favor would ya?  Ask yourself, “Why don’t I donate?”  If you can’t come up with a good reason not to, then let Jean’s team know.  And then buy yourself an ice cream cone and some salt free pretzels because you just potentially saved someone’s life.  And if you do ask yourself, and determine that today is just not the day for you to donate, then please tell someone else about Jean.  Pass it on until she finds someone.  

If you’d like to help Jean then email:  friendsofjeanloewenberg@gmail.com

If you’d like to help SOMEONE, ANYONE, then sign up to be a living donor: donatelife.net

What You Got in Those Genes?

4+ Months with the Kidney

Back in February, while I was in the thick of being evaluated and having my donor evaluated for a kidney transplant, I wrote about my sister Jocelyn.  Jocelyn was kind of one of the first people to agree to donate her kidney for me.  I say kind of because there was almost no asking her if she wanted to donate her kidney to me.  I guess being that she is the sister closest to me in age, my family just assumed that she would probably be the best candidate to donate to me. And when the time came, she didn't voice any opposition.  She actually seemed quite calm about the prospect of having surgery. Whereas, I was enduring self-induced panic attacks thinking about the prospect of me waking up in the middle of having surgery. I know. My mind...there's...something wrong with it.    

Well, to recap what happened after my sister volunteered...had 14 vials filled with her blood...a CT scan and a kidney function test...she was rejected as my kidney donor.  Yep.  We all got the shock of our lives the day that happened.  That was the day when the thought that I might not actually get what I want began to sprout from its roots in my psyche and yield it's first blossoms of pessimism.  My family and I...and Jocelyn...had counted on her being the donor--so that we could stop wondering and looking and testing, so that this trial would all be over, so that I'd be healthy and able to live a long life.  We didn't count on her not being able to donate.  You know that saying about making God laugh by telling him your plans?  Well I prefer to think of the exchange between me and him going something like this:

Me:  Yo...God...What happened?  I thought Jocelyn was gonna be the donor.  Isn't that why you gave me a sister?  Not because I needed someone to play Barbies with and boss around...but so I could have another semi-twin body to harvest organs from in case I need them!

God:  Yeahhhh welll, about that....I never said she was your little organ harvest clone. And I never said you were getting the transplant in February.  You came up wit dat yo' self.  But, I've always loved your wild and crazy imagination.  That's why I made you a writer. Duh.  

So yeah, that's what happened. Jocelyn got her walking papers from the transplant evaluation crew.  I didn't get her kidney in February.  And everyone was really upset for a while.  The reason Jocelyn was rejected was due to the results of some research I did at the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK).  I participated in one of the studies the institute did to find out what some of the causes of kidney disease might be.  As part of the study, the researchers found that I have a certain genetic marker.

"The researchers found that African-Americans with two copies of the APOL1 variants have about a 4 percent lifetime risk of developing FSGS. Those who develop kidney disease tend to do so at younger ages than other FSGS patients, with 70 percent diagnosed with FSGS between age 15 and 39, compared to 42 percent in that age group for people with one or no APOL1 variants." --NIKKD

Bummer, right?  Well, this research is still kind of new and it's pretty early to tell what this all means.  But the doctors at the hospital wanted to project Jocelyn as much as possible, since she was graciously volunteering to donate her kidney to me.  The doctors thought she would be served better if she found out if she has the same gene variant that I have.  

Well, Jocelyn gave more blood to find out what her genes are made of.  Not some expensive blend of Rock and Republic cotton.  But also...not risk alleles...or at least not the ones I have! YAY!  In Jocelyn's words, her reaction to the news that she does not have the genetic marker for FSGS:

"I felt like 'wow, well I coulda told you that.'  I feel like [the doctor] made it a bigger deal than it needed to be, and he was being cautious but I don't feel like he was being rightly cautious.  I feel like if I had something similar to what [Jewel] had, and [Jewel] got [her's] when [she] was 16, I just would have gotten it when I was 16.  In the event that [Jewel's] kidney doesn't last in 35 years, then I want to be able to be the one to donate to [Jewel] without [her] having to go through this long process of finding someone else." 

Aw. Isn't that great. I really love that Jocelyn found out she doesn't have the same genetic marker that I have, because having kidney disease is kind of a downer.  I mean, granted, I've learned how to live my life with it and have been molded by my experiences with kidney disease.  But nobody wants their family members to have to go through any type of scary health situation.  Ain't nobody got time for that.  And Jocelyn's in college...so she really doesn't have time for that. Or money for that, either.  I also love that STILL, she volunteers to donate her kidney to me in the event that my dad's kidney fails.  However, I'm really hoping that some of God's plans for me involve me keeping my dad's kidney forever and a day.  

Mostly, I love having not one, but two amazing sisters.  They were not made to be organ harvest clones for my failing body. They were made for something so much greater than that. God only knows the plans he has for such incredible human beings.

 

 

Volunteer Weekend and The Point of All This

I get a lot of things from my mom.  And not that I expected this, but I also inherited her love for volunteering.  While going through the kidney transplant process and as things grew a bit more stressful with the wedding planning, my volunteer aims sort of fell through the cracks. My gig working with kids at the homeless shelter in my city ended, partly because I was tired and partly because I had to commit a few more hours to planning a big party for 200 people. 

Well, as I'm sure you can imagine, I have a LOT more free time on my hands now.  The wedding happened (THANK GOD). The transplant happened (THANKS AGAIN, GOD).  And this cray cray summer schedule is starting to wind down.  Which means I can finally dedicate more time to "giving back."  I kind of hate that saying.  It annoys me a little.  Maybe because I've heard it in too many rap songs and PSAs.  But, I'm scarily unoriginal for a blogger, so we'll just go with it.

This past Saturday, I "gave back" with a few other volunteers from the National Kidney Foundation.  NKF leaders, directors and volunteers are incredibly dedicated to the prevention and treatment of kidney disease, and spreading awareness about the disease.  I joined them on Saturday at a small scale health fair/family fun day in an affordable housing community. NKF had a booth, halfway situated in the hot sun, and the other half under the shade of tents.  

 

The community where the fair was held is predominately, if not 99.9 percent, African-American.  So I think we were definitely in the right place.  African-Americans and other minorities are at a greater risk for kidney disease, due in part to the prevalence of other diseases in these minority groups that can put wear and tear on the kidneys.

At these fairs, when passing out the information, I try to make sure people have an idea of what they are reading.  One of the most important pieces of paper, in my opinion, is the risk sheet.  It asks three questions to determine your risk for kidney disease:  A) do you or does anyone in your family have a history of kidney disease? B) do you or does anyone in your family have a history of diabetes or high blood pressure?  C) are you in a minority group? 

Unsurprisingly, because of where we were at, at least 80 percent of the people who stopped by our booth met at least one of the risk factors.  

Going off on a slight tangent here, this blog post was supposed to go up on Wednesday.  But I received news that a family friend who had just had a kidney transplant, died suddenly, just a day or two after the operation.  His family does not yet know the cause of his death.  After hearing this I had this intense sinking feeling in my gut and tried to make sense of what happened.  I prayed for his family as they also tried to make sense of what happened.  And I all of a sudden became aware of my own mortality.  Tomorrow is not promised.  For anyone.  And living with a kidney transplant, almost makes me even more aware of the fact that every day is a gift.  My life is a gift.  Every minute that this kidney is filtering, weeding out toxins, regulating blood pressure, and just doing it's job...is a gift.  

It is my hope that through volunteering NKF, I can give people something that my family didn't have when I was 15, when I still took my life for granted: knowledge.  And that's also part of the reason that I started this blog.  

• If you or anyone in your family has a history of high blood pressure, don't wait another second before changing your lifestyle.  In some cases, mild cases of elevated blood pressure can be resolved with increase exercise and a switch to a low-sodium diet.  What people don't realize is, the salt content in our food has increased significantly over the last 50 years with the spread of fast food restaurants, convenience meals, and processed foods.  A low-sodium diet isn't just good for people who have or are at risk for high blood pressure and kidney disease, but it's something that should be adopted by the general public.  
• I want to stress this:  high blood pressure is a disease.  It is a disease that comes with no symptoms most of the time.  Which means, you could have it, but don't know it.  If left untreated, high blood pressure can seriously wreck your kidneys and your heart. 
• If you are at risk for kidney disease, make sure you ask for a creatinine test.  Creatinine is removed from the blood by the kidneys.  If your creatinine is too high, there's a chance the kidneys aren't working correctly. 

I think back my first appointment with my pediatric nephrologist, Dr. Yao.  And how scared and confused I was.  And how my blood pressure was 140/90.  And how there was protein in my urine.  I also remember how I had no idea what it all meant.  I'd made it through my childhood and preteen years with no health problems. Then all of a sudden my kidneys were only functioning at 30 percent.  I wonder nowadays how many other people out there are like I was back then. 

Well, judging from the health fair, there are still a lot of people who are unaware.  For that reason, I thank God that I went through this trial. 

If you're reading this and you really could care less about blood pressure or salty food or waste levels, well that's OK.  Because I care about your blood pressure, your salt intake, and your waste levels.  And I'm going to continue caring until we have a cure.  

In memory of Hugh West, Jr.