Return to Metro

I went to my first  "return to original nephrologist" appointment since the transplant on Sept. 12.  For the past four months I've been under the care of the hospital physicians, nurses, and my surgeons.  But once I passed the 90-day milestone and returned a clean biopsy (no FSGS!!) I attended my first follow-up appointment with my nephrologists at Metropolitan Nephrology.  

I've been with my nephrologists since I graduated from college, when I hadn't even considered kidney failure an option, at least not in my 20s.  For all my years of college, I felt pretty fine.  I drank, went to class in my PJs sometimes, ate all the regular food in TDR (American University's beloved caf), I had a roommate, I went to Mexico for five months, I stayed up until 4 A.M. studying.  As far as I was concerned, I was healthy.  As far as I was concerned, things were going to be just fine.  Sure I had to take some medicine, but it was nothing compared to what I'm taking now.  My disease didn't limit me then.  

When I started seeing a doctor for grown-ups after graduating, I learned that it was procedure for a doctor to explain to me (not my parents) what my lab work said.   And according to my first set of lab results at that visit, my kidneys had continued to decline during college and were functioning at 30 percent by that point.  I wish I could have documented that first visit.  Because I was so naive.  I was still smiling at that point.  Hearing 30 percent function, you'd think I would have been freaking out.  But I think I actually said, "Oh, well that's good."  Not knowing much about my situation, I figured if they weren't insisting that I start dialysis or get a kidney transplant then, then maybe I didn't need one.  Maybe I could live a long, healthy life like that.  I still felt healthy.  Sure things weren't going great, but everyone's got their problems, I thought.  I figured 30 percent was good enough.  

Clearly, I didn't study math in college.  Because 30 percent of anything is not something to smile about.  30 percent of a pizza is two slices.  Just two! And I usually can throw back three slices. 30 percent of my paycheck takes care of my rent.  Nothing else.  30 percent of my clothing leaves me walking around in my underwear.  30 percent of the answers correct on a test is a failing grade.  A failing grade.  My kidneys were failing.  Why didn't I get that?  Probably because it was taking so long to happen that I believed it wouldn't happen at all.  

So I started my diagnosis journey with Drs. Yao and Fildes, pediatric nephrologists.  And my transplant journey began with my doctors at Metro.  

Walking into the doctors' office for the first time since April felt a bit like walking into your parents' house for the holidays, after being away for a few months.  The tree is already set up and decorated.  The familiar aroma of mom's cooking wafts through the rooms.  Those same sounds that can only come from your childhood home are moving through each part of the house.  And you get the feeling that this is where it all started.  That's how I felt coming into the office on Sept. 12.  

The nurses and the office manager were behind the reception area.  "Is that Jewel?" one called out.  I responded that yes it was me.  And they gave me a welcome that shocked me a bit.  It was like coming back from being at sea for a few months. I'm not in the navy so I'm not sure why I made that reference.  But I didn't even get that big of a welcome with I came back from studying in Mexico after four months.  I was surprised because they do work at a nephrology office.  Don't people get transplants all the time?  Then quickly, I answered my own question.  People don't get transplants all the time, because there aren't enough donors.  

The nurse took my weight and my blood pressure (normal!) and escorted me back to the doctor's office.  My doctor walked in and I was pretty happy to see him.  He asked me about my wedding.  And he reviewed my lab work.  I remember being pretty thrilled with 30 percent during my first appointment at Metropolitan Nephrology.  I was incredibly stupid, obviously.  But this time, as my doctor went down the line of the analysis of all the blood taken, and reported that everything was normal...EVERYTHING...not some things, but everything, I let out a loud sigh of relief and smiled.  The last time I was in this doctor's office was a couple days before my transplant.  EVERYTHING was wrong with me.  It's nothing but a miracle that everything is RIGHT with me.  

After the appointment, I went out and recounted the tale of my transplant adventure and recovery process to the nurses, who listened intently and seemed to cling to every word.  I showed them some pictures from my wedding and they couldn't believe I hosted 180 people for a party a month and a half after getting my new kidney.  

Telling this story to them, nurses who've seen many patients receive kidney transplants and do well, I realized that THIS was something to be excited about.  THIS is something to celebrate.  Words like "miracle,"  "amazing," and "hero," in reference to my dad, were tossed up. It's so great to return to a place where people know you, your struggle, where you started out, and how far you've come.  Where people can rejoice with you, celebrate with you, and smile with you, because you used to be bringing in failing grades...but now you've passed the test.  With flying colors. 

100 Is Not a Lonely Number

When I started this blog back in January, I figured I’d be lucky enough to write five posts about kidney disease and my life before the blog faded into the black hole known as “blogs that people start and never continue.”  But as the title of this post indicates, this is my 100^th post on this blog.  100.  Who could have known that I’d have enough material in my over-analyzing brain to fill up 100 spots on the internet?  It seems kind of inappropriate that the internet continues to allow me to write down my random, sometimes incoherent, complex, simple, funny or unfunny (despite how funny I try to be), long or short thoughts on life, love and living against all odds.

I thought about what I wanted to say in my 100^th post, because you can never get it back. I didn’t want to waste it on some picture of me watching football in a restaurant surrounded by rib bones.  Or me maneuvering an oversized cart through the aisles of Costco searching for trash bags and rinse aid.  Or a picture of me and my sisters picking apart pieces of chicken for dinner on Saturday while talking about boys and friends and my younger sister’s driving.  Because that’s kind of what I did this weekend.  I didn’t want that to be the 100^th post.   

I kept dwelling on the number 100.  It’s not a particularly special number or anything, but it’s a far cry from 001.  I wondered how many 100s can I think of that relate to my life right now. 

100 days:  After I started this blog I had a tube curling through my stomach and was two weeks shy of starting dialysis.

More than 100:  180 of our closest friends and family members were able to witness our marriage after 8 years of dating.

100 Dollars:  The value in gift cards I received from my wonderful coworkers when I received my kidney.

Less than 100: 90 days after my transplant, I saw the Grand Canyon with my husband.

Less than 100: The days that Ben and I have been married (95 today).

Way more than 100: The number of views that Ben was received on his blog about waiting for me in the hospital while I was having surgery.

123:  The number of days that I felt sick this year.

141:  The number of days that I felt sick this year.

141:  The number of days that I've spent running my hand over my stomach.  

141:  The number of days that I’ve been thanking God for this scar on my right side. 

100: The number of posts about pain, joy, recovery, love and life on this blog. 

As you can see, my life is not moving at the pace of my blogging schedule.   And I didn’t want to fib and say something stupid like “I’ve been Bambi 100 times” or “I’ve eaten ice cream 100 times.”  Although…one of those statements might be true.  HMM

I’ve learned so much from the past 100 posts. I know it’s weird saying that because I am writing but it’s true.  But I feel like I’m just now beginning to discover why I’ve loved writing since I was six years old.  Since I definitely crushed my five-posts goal that I set for myself at the beginning of the year, I’m definitely ready for another 100.  Not ready to do more proofreading.  I kind of hate it.

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

Living for the Weekend-- Live to Eat

This weekend was pretty great. Just like I thought...once Labor Day passed my schedule became wide and clear. And I'm enjoying this less busy version of my life.

• This weekend I ran a few errands then cooked a Thai fusion meal with my youngest sister. She loves Asian food.  But has never tried her hang at cooking it.  One of my favorite things I made was the summer roll. I love eating summer rolls at this Thai place near my job and we loved recreating them. They are spectacularly easy by the way.  And I thought making summer rolls would be fitting with the season ending in two weeks.  I might just make these every weekend until fall finally arrives.  
• I kind of got obsessed with sending my friends and family "selfie" pictures of my cat.  He takes a good selfie, no?
• And I accomplished part of a major project to redo the wall in my dining room.  I've got frames, waiting to be filled with some wedding and engagement pictures.  
• Sunday was pretty much a dream day. My husband and I did two of our favorite things: watched football and slept. Yeah I know. Boring newlyweds much?

Speaking of newlyweds...my great friend and forever college roommate got engaged over the weekend!  And I could not be any happier for her and her fiance because I'm pretty damn happy right now!!  You think you're happy when a proposal happens to you. But the only thing that's better is watching your loved ones find their perfect matches and ride off into the sunset together.

And what makes my friend's story super sweet is that her and her fiance's set up was totally a love at first sight scenario!  Ben's and my first meeting was sooo not that. But I can appreciate how wonderfully romantic their story is.  And I'm just so excited for them to experience being together forever and enjoying a lifetime of love and happiness together.  Plus, I get another married friend!   She's probably having a spectacular day now, and the rest of the week and month will be just the same.  To Love and Happiness.

 

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.

 

 

Unofficial End of Summer

"If it could only be like this always - always summer, always alone, the fruit always ripe..."

Evelyn Waugh

I know, I know.  Summer is not officially over until Sept. 22.   Even though I've been out of school for a while, and haven't had a "summer break" in four years, I still associate Labor Day with the end of summer.  Like I've told you in the past:  I still get really annoyed/irritated/pissed off when I see or hear back-to-school commercials.    All the places that I attended school, except for Texas and Kansas, we started school the day after Labor Day.  The weekends leading up to it were spent cleaning our rooms, or shopping at JC Penney and the PX or Wal-Mart, writing those summer reading papers, or actually trying to finish reading the book and praying that the teacher would extend the paper deadline. Then Labor Day would arrive.  My parents could always be counted on to light up the grill for one of our summer al fresco meals. And that familiar smoke would fill my nostrils for one last time.  I'm sure there were some rainy Labor Days, but I remember more days with that perfect summertime weather: no clouds, perhaps a bit humid, but it was hot.  Which is, in my opinion, how all summer days should be.  I ain't no Maine chick, ya hear me? I'll take hot and humid over snowy and frigid any day.  

So anyways, this has been A summer.  I've had some awesome days and weeks.  I've definitely had bad days and weeks this summer, but thank God the good outweigh the bad by so much.  Summer trumped winter and spring of this year.  Summer left winter and spring of this year in the dust.  However, spring comes in at a very very close second because that was the season that my life changed, and I welcomed my dad's kidney to it's new home.  

After this Labor Day, we'll have three more weeks to pretend like summer is still here.  But it'll be difficult because after the first week, the media will be urging us to break out our sweaters and boots and order another round of pumpkin spice lattes for the group.  And it'll be hard to resist because I love a good pair of boots, and pumpkin spice lattes sooth my soul.  

So, until next time, summer.  Thinking of your arrival each year makes my heart smile.  

Enjoy some collages from a few of my summer experiences. 

DISCLAIMER: things not shown include the hour-long argument Ben and I had over my car battery and the fact that I didn't have a new one yet; not attractive but tasty homemade burritos; me living my life the way I usually live it on a daily basis.