Less than five months away from the wedding, it finally feels real. When you first get engaged, there's this feeling of "Is this really happening? Am I really getting married?" Ben knows because he was on his knee for probably what felt like a year while I screamed "are you serious?!! Am I in the Matrix?!" during his thoughtful, random, surprise proposal. Sorry Ben.
Even in the first stages of the planning process, it's all so new that you think, this can't be real. Then you see the costs of things and it's all so expensive that you pray, please, don't let this be real! You get the venue and you may even get the dress, but depending on how long your engagement is, it just doesn't quite feel like you're getting any traction in your planning yet. And then people keep telling you to enjoy your engagement. What does that even mean? I'm serious! What does it mean? It's not that we're not having fun. There are days where we're planning the wedding and we're so excited that we're jumping on our living room couches throwing the cat in the air. Then there are other days when someone's calling someone else's idea stupid. I would love to meet someone who tells me that the process of planning their wedding was fun and not stressful the entire time. Then I would tell that person I don't believe them and that it doesn't matter how many lies they tell, they will not get their own Oprah's Next Chapter special (yes, that's a Lance Armstrong is a lying doper reference).
One thing we did get accomplished last week: we finally signed a contract for our cake.
I'm also proud to announce that we have bridesmaid dresses. Finding a baker to do our sweet things was one of my favorite parts of the process. But I have to see, ensuring all the maids got their dresses was my least favorite. Things I didn't like about picking the bridesmaid dresses:
Having to remind people to order their dresses.
Having to remind people to order their dresses.
Ummm, having to remind people to order their dresses.
Not being able to promise my maids that their dresses would be cheap.
Not being able to promise my maids that their dresses would be something that they'll wear again and again and again.
Coming to the conclusion that it is impossible to find every maid a dress that she will be able to wear again.
Having to remind people to order their dresses.
But, I think the worst is over! And I am beyond grateful to my girls for agreeing to participate in this wedding. I've never been a bridesmaid/ But after being a bride, I feel like I am more than prepared to be a maid in someone else's wedding. Just tell me what to buy, when to buy it, where to show up. To the future brides selecting me as one of their maids: you won't hear one bit of sass comin' from this ol' mouth!
Another project that was super fun: hiring our super awesome invitation designer Tina Tabibi. Tina is who I would want to grow up to be if I was ever to become an invitation designer. Ben and I met with Tina back in November, I believe, and just gave her us, who we are as a couple. We gave her our personalities, what we wanted our wedding to be like, , and what makes us happy. And Tina took the big bucket of random that we gave her and she has turned it into a product that we'll be mailing out in about a month.
I can't wait to get married. Seriously. I like being engaged, but I just can't wait to be married. Especially, since having the wedding essentially means that the kidney transplant will be over and done with and hopefully successful! And it also means VACATION.
I have to say, in times like these, trials and tribulations, it's nice to have something to look forward to. And it's nice to be reminded of the things that really matter.
I'm having a great time planning my wedding, and every once in a while it's fun and cool to make myself stressed out over DIY table numbers. But other times, I'm grateful for my health situation, as bad as it is, because it reminds me that nobody is going to care about those table numbers or those expensive flowers that will die in a few hours. What's important is that hopefully i'll be healthy, and I'll be there with Ben. One of best things about planning a wedding while you have something even bigger happening around you being able to flippantly say "You know what, I know I should give a crap what kind of shoes you wear. But I don't. I just really don't! I've gotta go, I have a doctor's appointment. Kidneys failing as we speak. Just wear flip flops!" Yeah...silver linings. Gotta love 'em.
Gosh, don't you just love the internet. I do, sometimes. Especially when it comes to videos. There really is a video for everything. So guess where I decided to begin my personal research on kidney transplantation. Noooo, forget WebMD. Forget Wikipedia. And I already tried convincing my med school friend to videotape a stranger's surgery for me (it could work with the sneaky camera app!), but she didn't bite. So Jocelyn and I had no other other options except YouTube. That's right. If you ever get bored and want to gross yourself out, just type laparoscopic nephrectomy into the search bar on YouTube, on an empty stomach. And if you decide to watch these videos at work, position your mouse on top of the minimize button for easy, discrete window minimizing abilities.
One of my favorite videos was this one-- a touching video from UCLA about a brother who donates his kidney to sister:
Since my sister is first up on the transplant donor's list, I could definitely relate to this story. Growing up, I begged my parents for a sister. It was crazy how much I wanted a sister! I never would have imagined that she would give me one of the greatest gifts a person could give. Now that we're in this situation I look to Jocelyn for so much more than her kidney and her blood type. I'm six years older than her and I also look to her to calm me down when I'm freaking out about the surgery and needles and anesthesia. If she's nervous at all, I can't tell. I'm thankful for that. One of us needs to be the grown up here.
With the chances of us both going through this surgery together, Jocelyn agreed to watch the UCLA video and a few others with me on YouTube. Our initial reactions:
In the video, you can see the donor being operated on with long Wall-E arms. And to me, it kind of looks like the surgeons are playing Foosball. I don't know if they do this still, but the procedure for donors used to be a lot more invasive, usually ending with a long scar somewhere on the donor's side or stomach. I don't really think Jocelyn should suggest the old "regular type" of kidney extraction. The chances of the robot arms acquiring a Skynet-type awareness are probably slim to none. What amazes me more is how doctors can separate the blood and guts from the actual organs on those computer screens.
This makes me wonder how many classes in medical school are devoted to A) learning to recognize organs on an ultra-sound machine and B) learning to use robot arms to extract organs...while staring at a television displaying several questionable objects.
Yesterday, while at work, my sister called to say that I'd been approved for a kidney transplant and that she could now begin the donor evaluation process. To back up a bit, my sister and one of two maids of honor, is beginning the "audition process" to become a living kidney donor. Many people have asked me if I have a donor lined up already, since I know I need a transplant. It's really not that easy actually.
In December 2012, I began my evaluation process as a candidate for transplant. In order to be cleared for a major surgery of this kind I had to give a lot of blood and have several other procedures done to prove that I am even healthy enough to receive a transplant. Inova Fairfax (I don't know if other hospitals do this) gives you 90 days to complete all the necessary steps. Well, s*** sorta hit the fan, and my GFR dropped to 11 percent so I had to push myself to complete the process sooner. All together, it took me about a month and a half to complete all the steps. I'm not officially listed yet. I need my insurance to give the final say, but because I "passed" the evaluation, my potential donor can now begin their evaluation. That's how it works.
So, next week, hopefully, Jocelyn will be on her way to the hospital or doctor's office going through everything I went through. It's a huge relief to me because the approval means that I'm actually OK to receive a kidney. Some older patients can be too sick, or too old, to get a new kidney. Which means their only option is dialysis. We're trying to avoid that. Dialysis would really cramp my style, for real. I'm more than thankful. Seriously, it is GRACE that I'm not there yet!
This is also a relief because I'm one step closer to being DONE WITH ALL OF THIS. Lately, I've been feeling like the prospect of actually having the transplant is....annoying. I've been thinking about it too much. Making myself anxious and nervous and excited and angry. I really just want to get it over with so that I can know really if it's as bad/good as I'm thinking it is. And also so that I can do things like actually give my bridesmaids a date for the bachelorette party they're planning. Or actually make plans for my birthday (which is on Valentine's Day). Sometimes I feel like I'm just stuck, waiting for it to happen. I can't...plan ahead. Not only do I have chronic kidney disease; I have chronic planners syndrome. I just don't want to stop, but I know I have to. I have to take things one day at a time.
During my sister's evaluation process, she'll also be tested to see if she is a blood and tissue match. So here's the deal: a lot of people, myself and Ben included were hoping that Ben would donate his kidney to me. Awwwww. Yeah....it is kinda romantic :) You know that whole "flesh of my flesh, bone of my bone" thing. Yeah, it's a nice thought. And that still could happen! We're not ruling it out. But there's just one thing. Ben doesn't know his blood type. He's never donated blood or given it (I think). What we do know is that Jocelyn is O+. Up until one week ago I swore up and down that I was A+. I'm pretty sure I even wrote that on some applications for volunteer work. WRONG. Dear blog readers, find out your blood type. It could save your life one day. I am actually O+, just like Jocelyn. And since we're sisters, she is more likely (not guaranteed) to be a tissue match, which decreases the chances that my body will go crazy on my new kidney and try to destroy it. If Jocelyn's a tissue match, my little cells and antibodies and everything will be a little more...tolerant. That's what we want. As wonderful and awesome as it would be to have been in the next operating over, both of us enjoying sleepy time medicines, while being sliced open, we can't waste anymore time. Ben's going to find out his blood type in the meantime, so that he can be on backup if needed.
So after getting the good news, I get a phone call at 10 AM from my dad. He wants to get the entire family on a 5 way phone call so that we can talk about everything that's happened. I've said it before, but it never gets old: I. Love. My. Family. My dad wanted Jocelyn and I to know that we're not alone in this. That getting this failing kidney situation sorted out is our number one priority and that he and my mom are here to help. One word: thankful. There are thousands of people on the transplant waiting list. Just waiting. Sometimes I wonder if they just have no one willing to step up, willing to give. I'm thankful for my family's selflessness.
Enough sentimental stuff: shortly after, over the phone, I asked Jocelyn if she checked the "constipation" box on her medical history form. My younger sister Danyelle, who was so quiet during the phone meeting that I thought she'd hung up, cackled and revealed that Jocelyn had selected the seemingly less problematic "change in bowel patterns" box. Figures. You have to be honest on those medical things. What did Lance Armstrong say? The truth will set you free.
Anyways: this is for my family. The best one ever. And three special out of town friends. :)
The first thing to cross my mind--first thing--upon
hearing that it’s time for me to move forward with having a kidney
transplant was, “I hope this doesn’t ruin the wedding.” When my young
and friendly doctor broke the news, I sat across from her in my chair
with tears streaming down my face...thinking about all the plans I’d
made.
When
I was first diagnosed with FSGS, I became obsessed with planning and
scheduling things. Pages of my high school journals were filled with
lists and itemized to-dos
like “5:30 PM, do math. 5:55 PM go to the bathroom and take a break
from doing math. 6:00 PM ask mom what’s for dinner. 6:05 PM, resume
math assignment.” Who does that?! A teenage girl trying to regain
control of her life when she’s placed in a situation where she has
absolutely no say or control over how things are going to turn out.
That’s who. Making lists and plans were a way for me to have a say, a
way for me to control a scenario for once. Blood pressure up again?
Well, I couldn’t do anything about that but I could make sure my bed was
made at exactly 6:32 in the morning.
After
I went into remission (where my disease was no longer causing any
symptoms), I went to college. I still made lists. I still planned
things. But I relaxed a bit. I realized that there’s no way you can
have a schedule for everything. There's only person who knows how things are
going to turn out and that’s just the way it is. But
sometimes I have to remind myself of that.
When
Ben and I got engaged, I did know that at some point I would need a
kidney transplant. Ben, my sisters, my mom and I found this out during a
February visit to the National Institute of Health. But we thought
maybe I’d be a few years out. I’m 25, going on 26, so we thought perhaps
27 or even 28. Just three months ago, I started thinking about the
possibility of my surgery happening before or even very close to my
wedding. And this month, Ben and I purchased honeymoon insurance
to protect ourselves in case something comes up before or while we’re in
Greece.
A wedding and a honeymoon aren't just some
plans. Or some schedule that you type up on the the notes section of
your iPad. It’s an event that Ben and I have been dreaming about, hoping
for, and spending money on since
March 2012. The thought has crossed my mind of postponing the
honeymoon. The wedding is just one day and if I need to be there in a
wheelchair and then leave after dinner so be it. But I guess I’m
stubborn, or optimistic that we won’t have any health-related snags to the
day.
We’re less than five months away now and we’re doing stuff every weekend for the
wedding. Every day I get more excited about the wedding. I also get
nervous, not necessarily about the prospect of having surgery. I
get nervous about regular things--like flowers, my dress, my vendors,
whether favors are stupid or not. And I’m excited about walking down
the aisle, pledging my life and love to my best friend, the greatest man
I know (besides my dad of course!), my rock, my partner, my supporter
and everything in between. If I can control it, I’m not gonna let two stupid, failing kidneys ruin that moment at all.
Welp, things have officially gotten real! My glomerular filtration rate (GFR) on Jan. 15, exactly five months from the date of the wedding (whoop whoop!) dropped to 11 percent. Yes. We're falling fast. To give you some perspective, in November, my GFR was 15 percent.
During this doctor's appointment I was so mad at myself. I'm pretty emotional--one of my least favorite things about my personality. I cry during everything, which could partially explain why I'm a Disney fanatic. Just mention The Fox and the Hound and my eyes start to well up. So before every doctor's appointment I have, I have to build myself up to prevent the tears from tumbling out of my eye sockets. But the shock of hearing that I've now reached that point where I need a kidney transplant immediately was simply too much.
I'd been clutching onto the idea of a GFR 15 since November. Believing steadfastly that the transplant would indeed happen after the wedding. That my plan would work. I'm doing yoga. I cook ALL my food so that I can monitor the salt, fat, cholesterol, protein, iron, and fiber content (I'm 25 and I limit myself to eating at restaurants twice a week). I limit myself to one beer or glass of wine per week. I take my medicine. I'm doing everything by the book.
It's tough sometimes, to get all "Life's not fair," "why can't I control this." At the end of the day I try to remind myself of three truths:
Romans 8:28-- "..all things work together for the good of those who love God--those whom he has called according to his plan."
Things could be so much worse. I'm lucky that kidney transplants are one of the most successful, easy, common surgeries performed in this day in age. For others, the scenario is much more dire.
Miracles do happen.
And like this post's title states, at least my life isn't a Lifetime movie. There's a new documentary show on Lifetime where real people come forward and tell their tales of how their life was turned upside down. Think of every Lifetime movie you've ever seen. Now imagine that the plot of that movie is real and happening to you or somebody you know Yeah. No thank you. I'll take a transplant over vanishing husbands, a sexting scandal, and a neighbor who tries to murder you with meat preservatives. Nooo thank you!
To learn more about glomerular filtration rates, and to see what yours is, visit NKF's GFR web site.
There
are several physical exams you have to complete before being approved to have
a kidney transplant. After my FUN day at the hospital, I knew I’d have
to schedule the next exam separately, with my primary care doctor.
Women receiving kidney transplants are required to get a pap smear.
I’m
almost 26, so I’ve had several paps done. This wasn’t my first time in the stirrups. But it was however, my first time waiting 20 minutes ...alone...naked...in a doctor’s office for my test to begin. They
were pretty busy there that afternoon apparently.
I
made it a point to arrive 15 minutes early for once to the appointment.
I wasn’t called to the back until the exact time it began, but that
was fine by me. I was just happy that I actually obeyed the sign on at
the receptionist’s window that says “Please Arrive 15 Min. Before Your
Appointment.” Success. I took a piece of candy from the candy jar.
After
being called back I was weighed (132), I had my temperature taken ( 99
degrees F), and then my blood pressure (150 over 100. Yeah I’m sick.).
Then the nurse took me back to the examination room. I struggled to
remember the date of my last period and I secretly slapped myself
because they ALWAYS ask before you begin a pap, and I ALWAYS decide to not
check the calendar before leaving home. Doh! She directed me to take
off all my clothes, change into the paper robe that opens in the front,
and wait for the doctor. She left the room and I hopped up on the paper covered table. I twiddled my thumbs, hummed. Thought, "The doctor should be in any minute now." I was wrong. Five minutes later, still no doctor. This was the first time I'd ever had a few minutes to think before lying back and trying to relax, as they always say before breaking out the scary pap tools. Things that crossed my mind:
That Kelly Clarkson song blaring the walls of a neighboring office is right. What doesn't kill you makes you stronger.
Staring at a medical diagram hanging on the wall, I began to wonder how many ear infections I had as a child.
I wonder if I have time to read that old issue of "People" magazine about Jessica Simpson and her new baby.
I know I don't need it, but sometimes I get jealous of other people on Weight Watchers. I want to be worth it. I want to believe in myself.
They always have a picture of an island on the ceiling. That's a nice touch. I wonder what island it is.
I'm really excited for my honeymoon.
This would be a great time to practice my yoga breathing.
I guess things could be worse. Kidney transplants are done all the time, at least that's what they tell me.
I started getting comfortable with the reason I was doing all of this, all of these medical procedures, back to back, within a two week period. And then finally, my the doctor walked in,I had my test and I should have been on my way. Except I was convinced to get a flu shot and my arm proceeded to hurt for the following week.Several people at my job turned up with the flu after that. So the whole trip wasn't an entire waste.
The
first order of business after completing my four hour informational
meeting with a kidney transplant nurse, dietitian, social worker,
financial planner, and appointment coordinator was to show up at the
hospital prepped and ready for another four hours of medical procedures.
I
decided to spare Ben from having to request another day off work, and
demanded that my sister accompany me to this next appointment as part of
her maid-of-honor duties. I played the "...but you're the maid of honor" card. I'm not gonna lie--sometimes it’s fun to be a Bridezilla.
Another early morning, and this time, there was McDonalds...for Jocelyn. I had to fast for 8 hours. And this time, I documented the whole experience. First up: there will be blood!
I don’t mean to brag, but I’m pretty good at getting my blood drawn. After ten years of doing this, I
know which veins are going to be automatic. And by automatic, I mean ripe for blood drawing. From years of experience I've learned that an "automatic vein" is one that practically jumps out of your arm when you show it to the nurse, prompting the nurse to say "Wow! You have good veins!." I know how many times to
squeeze my fist or the little red ball and then when to release once the needle is inserted. I’m not squeamish and I don’t
get dizzy. This is what 10 years with a chronic condition can do for a
person: give them a whole new skillset related to withdrawing blood.
The picture above shows the 14 tubes that I had to fill with my blood--by far the most tubes of blood that I've had to fill up. I usually don't worry about whether I'll have any trouble giving blood, given that most instances involve two or three tubes. This one time, at the National Institute of Health, I had to fill up six tubes! And I thought I was actually going to pass out then. Now my mindset is more like, "Six tubes? Whatever man. Whatever. Come back when you're serious about taking my blood."
Next up: only the second ultrasound I've ever had in my life. And I've never been pregnant. I have to admit, ultrasounds are not my favorite medical procedure. Doesn't everyone want to see their insides, you ask? Well, first of all, I don't know how anyone can determine anything on those machines. Everything looks the same. And second, in this day and age I guess we still can't find a way to warm up the ultrasound gel BEFORE rubbing it all over someone's stomach. If I yelp because of the temperature of the gel, you might have a problem.
The picture above is one of my favorites of the day. In the first post, I rambled on about how glorious McDonald's breakfast is. In this post, you'll hear about one of the most gratifying meals I've ever eaten: hospital breakfast. Yes, after ten hours of fasting, 14 tubes of blood, and an ultrasound that went on a little too long (I guess two crippled kidneys don't show up on screen very well), my sister and I sat down to a delicious, freshly prepared hospital breakfast. It cost me $4. Since then, I've suggested to many people, "Hey, lets hit up Fairfax Hospital for some flapjacks." Or "Hey, you know who has great coffee and cheap biscuits? The hospital." If it were closer, I'd never eat anywhere else. For the last three procedures I don't have any pictures because I had to do them topless. And this isn't that kind of blog. I will end with this:
Just like the ultrasound gel, those little stickers they put on your boobies for the echo cardiogram are freezing cold. Why?
After ten years of doing it infrequently, getting my blood pressure checked still gives chills (149 over 101 during this visit; not good).
More than anything, my favorite part of these experiences is getting to spend time with my family, especially one of my sisters. My faith that God will work everything out in the end keeps me going. But I'll also be forever in debt for the rest of my life to my family, who have cried with me, and mostly laughed with me, prayed for me, driven me to the hospital, eaten 40 cent eggs with me, and took pictures of me for my "sick people problems" blog. I can't thank you guys enough.
Organ
transplantation. I know it’s not something that’s unheard of in 2013,
but still, when I say the phrase out loud, “I’m being evaluated for a
kidney transplant,” I can’t help but feel like i’m having an out of body
experience--watching a science fiction movie about a girl who says
she’s me. She looks like me. Even acts like me a little bit. But who
within the year will be operating off of a kidney that’s not her own.
Sometimes, I kind of feel like Ripley, from Alien. Except, hopefully
my kidney won’t bust out of my side if the other cells in my body decide
to reject it.
When
I make a list of events I used to think would occur in my lifetime,
“kidney transplant” isn’t on it. Things like “marry a black doctor”
and “become an astronaut” used to take up the top two spots on my short
“When I Grow Up” goals list. Well, my fiance is white, and I willed
myself to stop doing math (really, I stopped) years ago, so becoming an
astronaut was just out of the question.
Having
a kidney transplant definitely would have made the list of “events that
are highly unlikely to occur in my lifetime,” if there ever was one.
Nonetheless,
Dec. 6, 2012, was the day that I officially began my journey toward
transplantation. I’d worried about that day and prayed about that day
leading up to the morning of the appointment. Ben (my wonderful fiance)
was my rock, because for the first time since I’d been diagnosed with
the disease, way back in 2003, I had decided not to invite my family to a kidney appointment. Just Ben.
Ben
and I are notoriously bad at going to bed early, which means we were
terrible at waking up on time to get to my 8:30 A.M. appointment. When
the first alarm went off, we convinced each other that if we slept five
more minutes, we’d have enough time to make eggs and bacon for
breakfast, which only takes about 10 minutes. As we hit snooze on our
cell phone alarms again, we convinced each other that we don’t need 10
minutes for eggs and high sodium bacon. Five more minutes of sleep and
we’d have enough time to shower, pour some bowls of cereal and be on our
way. Another round of snooze buttons later and we were already talking
about the plethora of nutritious and freshly prepared meal items that
we could choose from the McDonald’s breakfast menu.
One
thing I’ve learned about all of my kidney doctor appointments, is that
eating beforehand is a necessity. You never know when you’re going to
have blood drawn, or have to give a urine sample, perhaps get hooked up
to an IV for a thousand milligrams of steroids, or in this case, sit
through four hours of five different people talking about organ
transplantation with only a mini bottle of warm water at your disposal.
We
pulled out of the parking lot outside our apartment complex, salivating
at the thought of having an egg mcmuffin and two greasy and crisp
McDonald’s hashbrowns. I started up the directions to the INOVA
transplant facility on my iPhone. Only 20 minutes away. Doable, plus,
there was no traffic. And extra plus--we were getting Mickey Dee’s for
breakfast. I was on my way to a doctor’s appointment where major surgery
was going to be discussed. Yet, I felt like a little kid at 9:30 AM on
a Saturday morning, watching X-Men as my dad walks in with Hot Cakes
meals for the whole family. Everyone knows, there’s just something about McDonald’s breakfast.
We
rode in silence, both of us glancing around for a glimpse of those
sacred “golden arches.” We hadn’t spoken a word until we reached the
intersection where I thought, but wasn’t certain, that there would be a
McDonalds.
My jaw literally
dropped in disbelief as Ben passed the McDonalds. My dream of english
muffins topped with microwave eggs and cheese, my coffee with two
creams, evaporated into thin air.
It’s
hard to say exactly what went wrong. Nearly a month after the
incident, we don’t know if Ben passed the McDonalds because his favorite
song was on the radio, or maybe I was too distracted by the moving
arrow on my Google Maps app, worried that we wouldn’t make it to the
appointment on time. But on that early morning, before my first
appointment to begin my transplantation adventure--before learning that
the transplant would cost me likely $14,000 out of pocket...before
hearing that i’d have to take up to 10 pills per day for the rest of my
life...before learning that i’d have to give up my hobby of eating a
warm grapefruit because it’s too high in potassium---Ben passed the only
McDonalds en route to the transplant center. As fate would have it,
Ben drove past the only fast food establishment within 20 miles of the
transplant center.
For
four hours, Ben and I tried our best to digest the waterfall of
information on everything kidney-transplant related. It’s funny how
discussing a life-changing circumstance like receiving a transplant can
be diminished by the moans of an empty stomach.
Don’t
worry! This story has a happy ending. The appointment eventually
ended, and Ben and I went straight to Firehouse Subs and gorged on
high-sodium concoctions sandwiched between thick slices of bread, and
lots of sauce. It was just what we needed. And I was reminded of how
truly blessed I am to have a partner in this whole mess of failing
kidneys and surgeries. Now that I think of it Ben could have easily
dropped me off at the appointment, drove 20 minutes back to the
McDonalds, and picked me up outside the transplant center later. But he
didn’t. We stayed together--learning together...and starving together.
And after lunch and on full stomachs we couldn’t help but laugh at the
fact that I it was a lack of McDonalds breakfast that ruined the
morning.
