Monday, April 29, 2013

How to Be Semi-Productive

4 Days 'Til Transplant

You know what I thought would be unfair?  Writing out a whole checklist of things that I’m supposed to do before the transplant, then leaving the faithful readers of this blog hanging by not updating you all on what I actually DID.  

  • Cleaning the apartment?  We cleaned the apartment!  And it was no easy task. We entertained Ben’s friends on Friday night, so the morning after we were confronted with a hurricane of beer bottles and leftover salsa.  Don’t worry, I didn’t partake in the drinking. However, I did come up with an awesome drinking game that no one wanted to play.  Ben did me a favor by staying home and cleaning, and even doing laundry for the day, while I attended the family BBQ at my family’s house.  We’ve still got a few more loads to do but the apartment is 75 percent done.

  • Take care of a handful of major wedding things?  We did some wedding things.  My mom purchased my veil for me, which I’m super grateful for. I am running low on wedding funds and that is an understatement.  However, Ben did NOT get his new suit tailored--a casualty from the night of drinking and a day of cleaning.   My final dress fitting is happening Monday (today).  Unfortunately the marriage license is being put on the backburner.  But it’s not exactly like we’re running out of time to get it.  And I was able to make a few lists of projects for various family members and wedding party members.

  • Make arrangements at work?  Arrangements made!  I’ve told my boss about my surgery, I retrieved my FMLA paperwork from my doctor’s office. I still have to set up my out-of-office messages and clean off my desk.

  • Have the hard discussions with Ben?  Sort of.  The conversation pretty much went like this: 

Me:  Hey Ben, remember that paper that I was supposed to sign that gives you power of attorney…or whatever?
Ben:  Yeah?
Me:  Well, I’m basically gonna sign it over to you.
Ben:  Ok.
Me:  Cool.

So, yeah, basically, Ben knows if anything happens to me, he has a say in everything.

The past weekend went by FAST.  Which is always a sign that something big is about to happen.  Monday morning I’m going in for pre-op, which is additional blood tests and a physical tests to make sure I’m still healthy enough for surgery.  At this point, it’s still too early to feel super nervous.  Lately, I’ve just been thinking about:  all the foods I’m going to eat after the transplant; the length of time it will take to recover; if I can leave the hospital after just a few days instead of a week; if I’ll get sick of being at my parents house for a week; what Ben will eat for dinner for a week; what I’ll feel like once I have a new kidney. 

I just feel very fortunate to have this opportunity. Part of me still feels like this is surreal, and sometimes I ask myself, “Why me?” As in, why am I so fortunate that I get a new kidney before the thousands of people on the waiting list.   I’m so excited to be receiving a new lease on life, but at the same time I feel pinch of sadness for the thousands who die each year while waiting for a kidney donation.  I think about the thousands who have been on dialysis for five years. I’ve had kidney disease for 10 years, and been on the waiting list for kidney for six months. 

My dad made this dream of getting a kidney before the wedding a reality.  There are some situations where just throwing money at it isn’t enough.  Sometimes, it takes more. Sometimes it literally takes guts to change someone’s life.

Thank you God for the dads, and thank you God for all the living donors.   

Friday, April 26, 2013

How to Prepare for a Transplant

 1 Week 'Til the Transplant

Every Thursday, Ben and I begin making a list of all the things we want to accomplish or do over the weekend.  And it hit me that this would be my last weekend before the transplant. WOW!  So naturally, there are a lot of things on our weekend to do list.  We have things to do for the wedding, things to do with our families, and things that we're doing for ourselves.  I'm no expert on preparing for a transplant or major surgery, but I'm trying my best.  Here's what I managed to come up with:

  • Cleaning the apartment:  Once I depart for surgery May 3, I won't be back in Ben's and my apartment until the weekend of May 17.  I'll be staying with my parents, who live 30 minutes away, for a short period of time.  One thing my transplant team has really been enforcing is the importance of staying away from tons of bacteria and germs. Which means really, really washing your vegetables when you get them from the super market, throwing out and purchasing new sponges and dish towels regularly, and just all around good behaviors that most of us slack off on when things get busy.  So hopefully Ben and I will be able to clean the apartment top to bottom this weekend, as well as do many loads of laundry.
  • Take care of a handful of major wedding things:  We're planning to focus on this for the next five days. After that, wedding planning will go on hold for a week, until  Mother's Day, which is probably when I'll leave the hospital. Our big priorities include getting Ben's new suit tailored; purchasing my veil; attending my final dress fitting; and apply for our marriage license. And hopefully, I'll get a chance to make a small list of things that I can delegate to different members of my wedding party and my wedding coordinator and they can get to work on some of these things while I'm on bed rest for 1-2 weeks.
  • Pay Rent and handle any other monetary issues:  I'll probably make a list of all my passwords and credit cards to give to Ben. And I also need to get my checkbook. There are a couple of checks I need to write during my off period, mostly for vendor payments.
  • Make arrangements at work:  I won't be working for an entire month.  My employers have been really understanding throughout this whole ordeal and I've prepped them for my departure. I just have to make a few lists for the people filling in for me while I'm gone; turn in my FMLA paperwork, in case I have to go into unpaid leave; set up out-of-office messages and message forwarding, and clean off my desk, which has been a long time coming.
  • Have the hard discussions with Ben:  One of the things I've learned during this entire process is what it will really mean to be married.  The first time I went through these health issues, I was 15 years old, and was just diagnosed with kidney disease.  During that time, I leaned solely on my parents, because I am their child, and I was their dependent, emotionally, financially, in every way. Now, I'm 26 years old, going through the same thing, but things have changed. I live with Ben and part of being married is learning to depend on and lean on your spouse during hard times, every time.  A friend of mine described the change best:  when you're not married, you run to your family first; when you're married you run to your partner first.  And that's how I feel.  I am CRAZY CLOSE with my family.  Like, I talk to all of them at least six times a day.  All of them. And I see them every weekend, just about.  I know it's definitely been hard for them, not always being in the loop about every aspect of my life, especially when I'm sick and have all sorts of problems.  But I kind of feel like, that's how it's supposed to be.  I think getting married doesn't mean that I'm leaving them out in the dust completely, but that I'm starting a new family and I have to learn how to put that new family first when it comes to the decisions Ben and I make about every aspect of our lives together.  I know most parents understand this, because at one time they had to make the same choice.  So this weekend, Ben and I are going to talk about the difficult things-- like money, post surgical care, and emergency decisions.  We are becoming our own family now, and it feels pretty good.
So those are the big boring things, I guess you can say.  We've also got some fun stuff on our radar.  Ben and I are hosting his annual "Draft Day" party at our apartment.  I probably won't be there the entire time because I don't find watching the NFL draft as riveting as most people (?).  Then on Saturday, my parents are throwing a family barbecue at their house!  My mom has even agreed to offer up some low-potassium options since I'm trying to stay on the straight and narrow until the surgery.  Lord, give me strength!  I'm already making plans for a "Post Transplant Junk Food Binge Eating Party." 

Happy Weekend :)

Wednesday, April 24, 2013

Wedding Wednesday: High Gear & Death to RSVP Cards

52 Days Til the Wedding

Today is a much needed day off work! YES!  I have a visit with the surgeon who's going to perform my kidney transplant (in 9 days, I might add).  I'm looking forward to getting some information on the procedure, as well as what I can do to prepare, how things are going to go afterward, and when I can start traveling!  And since I'm taking the entire day off, I'm going to use some of the time to get a little wedding planning done without the pressure of having just left the office.    Anyways, below is the planning breakdown. Weird to think that the next wedding planning post I do will be 45 days before the wedding.
What We Did Over the Past Few Days:
  • So on Saturday, Ben and I agreed: No more messin around! And we decided to get serious about one thing that has been getting on our nerves for the past five two months.  We finally ordered our wedding bands!  Actually, I have mine in the apartment because they had it in stock.  Ben's should be here at the beginning of May.  They are sort of matching bands, hehehe!  I don't know but I kind of like that idea. My friend got married last summer and she and her husband had matching gold bands and I thought that was just the most romantic and cutest thing.  
  • In semi-unexpected turn of events, Ben reordered a completely different suit.  At this point in time, usually the bridal party has all of their attire.  They may not have it in possession, but it's ordered, perhaps fitted and almost ready to go.  Well, Ben had to reorder his because it wasn't the right side. We thought about just letting it slide but then we decided, no.  He's the groom. This is OUR wedding.  We're paying a lot of money for this event, and for the photos of the event. I know nothing can be perfect but we're going to try to get him as close to that as possible. Reordering of the suit, which happened to actually be more expensive, turned out not to be that much of a cost difference. So we think it was a good choice.
  • We took our engagement pictures!! And I'm soooooo happy we finally did. I CAN NOT WAIT to see what they look like. And surprise bonus: Ben actually had fun doing it.  Crazy, right?  Yeah. In fact, I think he had so much fun doing it that I could probably convince him to do it again!
What Sort of Makes Me a Little Bit Mad.  Mad enough to complain about it on my blog, but not mad enough to say anything else about it again:
RSVP Cards are a COMPLETE waste of time and money.  You've heard me talk a lot on this blog about how enamored Ben and I were with our RSVP cards, designed by our wonderful invitation designer. Well, turns out other people love them too because I'd say of the 80-90 invites/RSVP cards that we sent out, we've probably only received back about 40.  Everyone else, we've had to call or email them about whether they're coming to the wedding or not.  We included those cards specifically in the invitation suite, with stamps so that we wouldn't have to do that.  Well, ladies and gentlemen, this situation has led me to the conclusion: the age of the RSVP is DEAD.  If family members can't even send in postage paid card to say yes/no to the invite, then I've lost faith in everyone.  If you, dear reader, decide to plan a wedding, ignore every piece of etiquette on RSVP cards.  If I ever have another wedding, or maybe a vow renewal, best believe I'm doing online invitations.  People just don't care that much anymore sadly. 

What's Next:
  • Let's purchase a veil, shall we? OK then.  Doing that this weekend, especially since my second dress fitting is April 29!!!
  • Ben and I have been talking about our marriage license. We might have one of those come Monday since in Virginia you can get it up to 60 days before your wedding.
  • Pay considerable attention to my DIY projects.
  • We're meeting with our officiant/my cousin this Saturday.  My parents are throwing a BBQ which will be an added bonus.
  • This might be reaching honeymoon?? Let's hope so! We're aiming for September.

Monday, April 22, 2013

When A Door Closes, A Dad Knocks It Down

11 Days 'Til Transplant

And the countdown has started. Crrraaazzzy.  Also, it's kind of weird that I started the countdown for days-til-the-wedding on this blog at 100 days, and this countdown starts at 11 days.  Just sayin.  

It didn't dawn on me until a few days ago that I'd probably left quite a few details out about what exactly happened with my sister, Jocelyn.  If you've been reading this blog since January, you'd know that originally, for the past 10 years, we've all been telling my younger sister Jocelyn (20 years old) that she was going to give me a kidney someday.  It just made sense to us. She's my sister; she's young and she's healthy. And she's one of my best friends so this would have made for a pretty great movie I think.  Oh...actually that movie already came out. And we weren't in it.  Anyways, Jocelyn was like "Neo." The one.  The one who would fix everything.  And I always thought, "Wow, God, Thank you.  I knew there was a reason you gave me a sister who steals all my clothes. It was so that I could have her kidney.  Thank you." But no, not really, at least not yet. 

Jocelyn was 90 percent done with her evaluation to be my donor.  She was all set to meet the surgeon and she passed all the physical tests.  In her meeting with her nephrologist, they made a discovery related to a little test I did 10 years ago at the National Institute of Health.  When I was first diagnosed with FSGS, my pediatric nephrologist recommended to my parents that we seek out a second opinion on treatment options, just in case there was anything besides thousand-milligram steroid treatments that we wanted to try. Before I started that treatment we took a visit to NIH to participate in some research studies on FSGS to see what was out there as far as treatments.

Last year, I went back to NIH, to get a second opinion on treating kidney disease, since my stage of renal failure had progressed to stage 4.  During that meeting with the same researchers, they revealed that from the blood I gave 10 years ago, they discovered I was a carrier of a special gene.  Their research has shown that people with that "special gene" are at a much higher risk of developing kidney disease. All of this research is being done  so that a cure can eventually be found.  

Fast forward to about two months ago, at my sister's meeting with her nephrologist.  He told her that he discovered my participation in the research at NIH, and the results (me having the gene) . He was worried because we're sisters. Basically, there's a 50/50 chance Jocelyn could have that gene as well, and that if she donated, she could develop FSGS too.  Because of that, Jocelyn's nephrologist would not give her the approval to donate, until she's had her own gene testing done as well.  

Of course, we were all DEVASTATED, for a number of reasons.  We didn't want to hear that Jocelyn had the gene, or was at risk for FSGS.  And also, this meant that I would have to start making preparations for dialysis.  A whole month and a half wasted.  A month and a half of kidney function that I would never get back.  That I haven't gotten back.

So, what did this mean?  What's happened since then? The doctors suggested that my dad try out to be my donor.  To us this was not really THAT ideal because he's older.  He's not as "fit" I guess you can say as he was in his 20s, like Jocelyn is.  And also, because of those two things, who knew what kinds of things were wrong with him. This is what we thought.  We were all wrong.

My dad is SO HEALTHY.  Healthier than me, actually!  And his age isn't going to be a problem.  My dad stepped up to plate, passed all the physical tests with flying colors, changed his diet to low sodium (like me) and was approved to be my living donor last Wednesday, April 17.  On his birthday.  

I can't imagine what that feeling must be like for a parent.  I was telling a friend of mine on Skype the other day that I just realized that people die if their kidneys don't work.  My dad is SAVING MY LIFE, really.  .  And I'm not sure if he ever expected to have to do this with one of his children.  

So hey Dad, I know you only read this some of the time but I love you. And I'm blessed/lucky/fortunate to have you as a dad, and I definitely do not deserve a dad like you. Especially all those times that I was...a pretty bad kid.  But I'm so thankful for God's grace, and that He saw fit to give me a great father like you.  

Ben also says, he thinks "it's swell," what you're doing.  You know how he talks.  He says "swell."   

Friday, April 19, 2013


Thankful. Speechless.

Surprised?  Me too.

The countdown to transplant starts now.

In the meantime, have a good weekend.

I know I will.  :)


Wednesday, April 17, 2013

Wedding Wednesday: The Art of Not Getting Things Done

59 Days 'Til the Wedding

OK so you know how sometimes you have the best intentions of waking up early and doing everything on time and according to the plan you have laid out for the day?  And then you know how sometimes even with the best intentions you end up waking up about two hours later than you wanted to, leaving an hour later than you wanted to, making a last-minute added stop at a restaurant for lunch (even though you had a huge breakfast just hours before), and then end up not really getting all that much done because of circumstances beyond your control?  Well, that's pretty much how my year of planning this wedding has been.  

This past Saturday Ben and I had a schedule, a plan. We were going to wake up early, eat breakfast, go wedding band shopping, pick up his tailored suit and other accessories for Ben's wedding day outfit, and go grocery shopping for the week.  

Well, we managed to accomplish two of those things.  Wedding band shopping was a bust for the second time this year.  We showed up prepared to buy!  We even worked on our negotiation strategy.  The place where we were going to get our rings isn't like a chain jewelry store that's open the same time as mall hours.  And for once I wished it was, because as it turned out they were closed on Sunday.  We walked right up to the doors, just to turn around and walk back to the cars.  So the wedding is in less than two months and we don't have our wedding bands.  

While we're on the topic of things that didn't get done for the wedding this weekend, let's talk about things we don't have/haven't done yet for the wedding in general, shall we? OK!

  • Rehearsal Dinner Stuff:  We handed over the responsibility of securing a tent for the dinner to Ben's dad, thankfully.  Meanwhile, Ben and I were planning to research tables, chairs, and decorations.  I've done the research, but no money has been spent.  
  • A Veil:  Prreeeetty sure I said I was going to do that this weekend. 
  • Stuff to Keep the Kids Busy:  We're having kids at our wedding.  Kids?! I know. And guess what-- I don't care!  I actually like kids.  We're planning to have special items at the seats for kids.  Again, no money has been spent on these items yet.
  • Sheet Music for the Communion Song:  Waaaaaay overdue, but apparently Citipointe is not in the business of making sheet music for piano players.  So we're having to improvise.
  • A Marriage License:  In Virginia you can get these 60 days in advance.  So we'll be getting ours before the end of the month.  
  • A Guest Book:  I keep trying to think of something that's NOT boring.  But I haven't had much time for that these days.  
 What I'm Proud of Myself for Doing:  writing a bunch of timelines for the wedding day and wedding weekend and sending them to people!  It was only then that I've been looking forward to this day for the past year and it's going to go by extremely fast.  Sigh.  

Next Up on Our Radar:   Ben and I did spend the weekend SHOPPIN!  I never buy clothes because I'm trying to save money for vacations and weddings.  So of course, we had to hit up the mall for outfits to wear for our ENGAGEMENT PICTURES. We're scheduled to have our photo shoot (wow, I feel so fancy) this Friday.  It's also scheduled to RAIN this Friday according to the weather. I'm praying that it doesn't rain so that we don't have to go through the trouble of rescheduling.  Blah.  Either way, I'm realllly excited to have some awesome, professional pictures of Ben and I.  Nearly 8 years of dating, and finally, pictures that will actually look great!!

Also Next:  Hopefully we'll be rescheduling our honeymoon!  I talked to our honeymoon planner.  Seriously...a God-send.  He is the greatest person and so understanding.  And he's agreed to work with us when we hear about what's happening with the transplant situation.  And we're really hoping to find out something soon.  Things are getting down to the wire!!  Postponing the honeymoon was not what we wanted, but I'm just happy that we can still go!  And right now we're trying to think of good, reasonably priced mini-moon excursions.  For us, a minimoon has to A) utilize the least amount of annual leave days possible, because we are still planning to take our big-moon this year; B) be on the East Coast, so that if we have to fly it's not as expensive as, say, flying to California. It would also be a shorter flight; C) include some kind of atmosphere where we can go to fancy dinners and also get massages and do spa treatments.  We really want to use our mini-moon time after the wedding to decompress from everything, and relax.  But we don't want to go so crazy that we end up not being able to do what we really want to do:  which is swimming in an eternity pool and drinking wine in Santorini.  It's one of those things where we have to look at the big picture and our long term goal. 

And we're open to suggestions for any mini-moon ideas.  So if you're reading this, and already have a little mini-moon planned (because I honestly don't) holla atcha' girl :)

Monday, April 15, 2013

10 Things, One Tube

It's April 15 and I've officially had a plastic tube coming out of my stomach for a week and five days.  And a happy Monday to you, too!

Prior to the PD catheter placement surgery, I didn't know what to expect, as far as how I would feel after the surgery.  Everything happened so fast, it seemed.  I did a little research online, including my favorite type--video research on YouTube--but other than that it was hard to know how I would feel after the surgery and what the rest of my life would be like with this tube in my stomach.  And by "rest of my life" I kind of mean, next few weeks, months if things just end up not unfolding like I hope they will.  

My catheter is just about healed all the way up, and next Monday I start dialysis training for half a day, for a whole week.   A lot of people have asked me how I feel about this tube, what it looks like, do I feel like an alien, do I feel like an iPod (I think that's just my sister Danyelle though).  So here we go, 10 things I've learned in the past 12 days with a catheter in (with pictures at the end for people who want to get to know me a lil better ):

1.  Your abdominal muscles control everything.  And I mean everything.  Well, maybe not everything, but most things.  I hope that there will only be one other time in my life where I'm begging, pleading, and crying with my fiance to not make me laugh because last week, laughter became synonymous with literal gut wrenching pain.  And so did sneezing, walking, getting out of bed and going to the bathroom...both numbers.  

2.  Stomach surgery will cause night terrors.  The first night after my surgery, the pain medication and the numbing agents had worn completely off and I found myself at war with my mattress, trying  to get in a comfortable sleeping position. I should have known:  comfort and stomach surgery do not go together. I feel so bad for Ben because that first night I moaned and groaned and screamed "THEY CUT ME?! THEY CUT ME?! WHYYYYYY?!"  Why, indeed.

3.  Exercising is bad, at least right after the surgery.  Because my abdominal muscles were pretty much shot and the catheter in my stomach was all new and still sort of bleeding, anytime I wanted to sit up from the lying-down position in my bed, Ben had to help me and slide a bunch of pillows behind my back.

4.  Bacteria is bad too.  Two days after the surgery I visited Devi, my PD nurse, with my sister Danyelle. During that visit she removed the first bandage I was given, cleaned around the catheter exit sight and rebandaged it.  During this process, Devi removed each portion of the new bandage, the iodine and even her latex gloves from each package and emptied them onto a sterile surface. She emphasized the importance of handwashing when cleaning the exit sight and using sterile tools.  The catheter is a tube that has a closed end.  When that end is opened for too long, it provides a direct access line for bacteria to the inside of my stomach.  So taking all the necessary safety precautions when cleaning the exit sight is pretty important.

5. Filling my stomach with even a cup of dialysis solution feels weird.  During that first visit with Devi, she flushed my catheter.  That involves opening the tube (in a safe and sterile way), connecting it to the PD dialysis solution bag, and letting about a cup of fluid into my peritoneal lining, then draining it right after. And we repeated that for about 4/5 times.  She did this to make sure the catheter wasn't filled with blood or clotted.  When the liquid entered my stomach, I felt a little bit of cramping in my pelvic area.  I don't know if this feeling will go away with time.  I have to remember that my catheter is still new and is not all the way healed.

6.  Ben and I look funny in those SARS masks.  When cleaning the exit sight and doing dialysis, every person around the catheter has to wear a mask covering their nose and mouth, to prevent the spread of bacteria.  Ben and I gave ours a try when we had to change  my bandage together for the second time.  

7.  A shower is out of the question.  Since my catheter is still healing and covered in a bandage, I can't get that portion of my stomach wet.  So for the past 12 days, I've been bathing in about 5 inches of hot water in our bathtub.  

8.  Number 2 becomes number 0.  So this might be TMI but it's my blog so HA!  And this could be valuable information for anyone about to have surgery.  Basically, before you're put under for a surgical procedure they make you drink this highly concentrated ExLax to empty out your bowels.  Advice:  drink this when you're at home for at least a good six hours.  When the procedure actually happens, because of the anesthesia your intestines pretty much go to sleep.  They take a long coffee break and stop working.  After surgery, it takes a little while for the intestines to wake up.  And the doctors will tell you, before they wake up, take precautions!  Eat tons of high fiber foods and keep some "supplements" on hand especially if you've had stomach surgery. Or else the same way laughing and sneezing cause pain, going to the bathroom will also bring you the same amount of pain.  Real talk.

9.  I can still be cute with catheter.  I was worried about how I would look with this tube in my stomach, both in and out of my clothing. Hey, I'm human.  But surprisingly I haven't had any problems. And my stomach, which was significantly bloated after my surgery, went down to its normal size. 

10.  It's easy to forget.  Now that a lot of the pain has subsided, I'm starting to forget that it's even there.    Even when I lift up my shirt to get a glimpse at it, I think "oh that's not so bad." And I'm sleeping a lot better nowadays, able to sleep in my normal positions too.  Some days I think, I might actually be able to do this whole dialysis thing.

And NOW for the good stuff.  Zee photos.  The following pictures are rated PG and feature some brown skin and cords emerging from someone's stomach.  

Jewel, by day.

Jewel, the alien.

With this catheter, I can now drink all my sodas again...along with a lot of toxins and acid.

Wednesday, April 10, 2013

Wedding Wednesday: DIY Time and Comin' to Terms

66 Days 'Til the Wedding

Oh wow...I am getting prrrreeetttty excited about this wedding y'all.  A few months ago, if you had asked me, I would have said that I didn't want the wedding to come up soon, only because it felt like I had so much planning to do.  Now that we're nearly 60 days away from the wedding, I still have a ton of planning to do but I kind of don't care! I'm just excited to see family members I haven't seen in a while. And hopefully friends I haven't seen in a while too.  And I'm excited to just be married and stop saying things like "Oh, I can't wait until we're married!" Anyhoo, the weekly breakdown. 

What We Did:
  • We submitted our playlists. After a year of collecting songs that we liked, we still ended up doing most of the song-picking in a few hour long listening sessions during the last week of March.  I'll admit, I'm kind of nervous, to hear what our DJ thinks.  He just seems soooo cool and like he likes a lot of cool music. And we hired him because we liked how cool he is, and we think we're sort of cool too.  But what if we're not really?!  What if we're lame and our music choices are lame?! I've already decided that I'm dancing no matter what. Even if no one else does.
  • I tried on veils. I know, I KNOW. We are getting down to the wire. But you know, something is just holding me up. I think it's the fact that there are real, living, breathing human beings out there who think I should pay $200 for a long sheet of tulle connected to a comb.  I think that's what's been keeping me from pulling the trigger. I swear it's probably just the addition of the word "wedding" onto wedding veil that jacks the prices up a full 75 percent. 
  • Ben and I got serious and drew up a few wedding day timelines for our wedding party and our parents.  We figured it's about time we got them involved in the happenings up the day.
What We're Not Looking Forward Doing:
I think I mentioned this before, but over the past few weeks, Ben and I have been preparing ourselves mentally and emotionally to cancel our honeymoon.  I think I'm little more prepared than Ben though.  Here's the deal: Six months ago, Ben and I hired a honeymoon planner to help us navigate the world of Greek tourism.  This awesome planner found us two hotels to stay at, and a couple excursions and private tours that we could take during our 10 day visit to Greece.  Upon booking him, we put down a little less than half of a deposit on the honeymoon.  Next week, the rest of what we owe is DUE.    

I asked my nephrologist his serious thoughts on the issue:  with the way things are going with my health, would my nephrology team give me the thumbs up to go to Santorini for my honeymoon.  He gave me an honest "no, probably not."  On one hand, he thinks that while I've started the preparations to go on dialysis, he doesn't think I'll be experienced enough to try out my new dialysis skills in a foreign country by June.  On the other hand, he thinks that if I do get my transplant before the wedding, the transplant team would recommend that I not go overseas just yet.  He recommended that I postpone the trip. 
I cried when he told me this.  I love traveling so much. And I haven't been on a real vacation in a year.  All because I've been saving up for this honeymoon. I have a TON of vacation days saved up just for this occasion. 
But...silver lining...sort of? Maybe?  Ben and I have vacation insurance. So even if we did have to cancel what we booked of our honeymoon we would get our money back.  And I am 100% open to the idea of post-poning the honeymoon with our planner, if he'll let us. As long as I get to go, I'm good.  But Ben I can tell, has not come to terms completely with this. If it were me, I would be emailing the planner right now to let him know the situation and discussing options for how to fix it.  Ben wants to wait a few days.  He says he's still optimistic.  We have exactly ONE week for something to happen.  Basically, this week I need to AT LEAST get scheduled for a kidney transplant.   And if....IF...that happens, then I'll ask my transplant team what the chances are of me traveling after the wedding. 
A lot of things are working against us here for a Honeymoon taking place on June 17.  I've already started entertaining the idea of a minimoon somewhere on the East Coast in the U.S., or even here in D.C.  United With Love, a popular D.C. wedding blog is offering a giveaway for a free "minimoon" at the Mandarin Oriental.  I've only been there once, for a conference. And let me tell you: the lobby is pretty swanky. I'd love to see what the actual rooms look like.  

But I really admire Ben's optimism.  It reminds me that while a situation may seem impossible for us, there's also a higher power in control. It would be pretty awesome to look back on this time after the wedding, recalling everything that's happened--all the negative health reports and recommendations to postpone the honeymoon--and say "But God...But God, had something else in mind. Something better, in spite of everything."  I'm still hoping...
Other Things on Our Radar:
  • We received the first set of materials for a sign DIY we're doing.  So we might get started on that this weekend.
  • We have to finally purchase our wedding bands this weekend.
  • I'm buying a veil. That is all.

Monday, April 8, 2013

Living for the Weekends-- Spring to Life

Despite, hobbling around for most of the weekend, and still hunched over in a little bit of pain following the catheter placement, it was a pretty good weekend. For one, it was the first real Spring Weekend, where we just had nice weather all the way around.  And second, I got to spend quality time with my family and fiance.  I'm really happy that I felt good enough to start walking around more.  Also, huge plus, it dawned on me that I haven't felt as fatigued!  Yeah, I haven't taken a two hour nap in a while! Some highlights:
  • I took Danyelle to Krispy Kreme on Saturday following another dialysis appointment.  
  • Ben and I enjoyed a great picnic at the park where we're planning to take our wedding photos.  
  • While Ben was hanging out with his friends, he dropped me off at my parents' house so they could babysit me.  There was dinner, there was laughter, and there was my purty white little dog, Lilo.  :)  
 I also talked to my dad for a long time about the family's new diet plan:  a low sodium diet!! Can you believe it?! My dad, that guy who said he would NEVER change the way he ate because his grandparents ate whatever they wanted and lived to be 99 years old.  Really, they did.  Well, there's a reason my dad changed his eating habits. I'll share more on the blog for Friday's post, and also what it's like to walk around with a tube coming out of my stomach. Not gonna lie, it is a bit uncomfortable, and I told Ben that I'm kinda already getting sick of it. But I try not to let it cramp my style.

And still am. Thank goodness. 


Friday, April 5, 2013

Tube-in-my-Stomach UPDATE

Originally, I was going to post a video I made of myself on my iPhone a few hours after the surgery.  Naturally, since it's technology, something went wrong and I wasn't able to upload it to the blog for today's post.  In case I don't get to upload it later, the gist is that the surgery went well. They gave me Valium.  I think they also gave me the Michael Jackson drug.  So I was OUT.  I spent the rest of the day/night resting up in bed, with moderate soreness. 

Everybody told me day two would be worse. And everybody was right.  

The good news is that I'm writing this at the end of day two and I'm regaining a lot of my mobility.  My stomach still HURTS, and I can't believe I let someone cut into it in two different places. Of all the surgeries to get, I feel like stomach surgery is one of the worst.  EVERYTHING is connected to your core muscles-- laughing, peeing, hell, even walking is.  So it's been a bit rough. But I'm making it.  

Serious shout out to the great doctors at Healthqare.  I was really nervous before the procedure but they were super nice and made me feel really comfortable.  And that place is serving some seriously good Apple Juice. For real!!  Why do the hospitals have all the good food?? 

Also, thanks to my baby sister, Danyelle, who I don't write about that much on the blog because we don't have the same blood type so she's not relevant to the conversation.  JUUUSSSST KIDDDDING!  She is relevant, and one of the most generous people I know.  Thanks to her for driving me to my doctor's appointment on Friday. 

And finally...goes without saying, thanks to Ben.  You know how I feel about you.  And no words I write on this blog will ever be able to convey it.  

Ben and I engulfed in daytime trash TV before the surgery.

Wednesday, April 3, 2013

Wedding Wednesday: Go DJ

73 Days 'Til the Wedding

Today, is a special Wedding Wednesday post. For one, I'm off work today because I'm having my catheter placement surgery this afternoon.  Ben also took the day off with me to be my caretaker and make me smoothies and rub my head.  Love him.  And second, this post is allll about the music!  

It's time for Ben and me to submit our playlist for the wedding!  Now, here's what I think, and this is just my opinion, which is obvious since it's my blog. Music can make or break a wedding. I've been a wedding guest maybe five or six times. My takeaway and advice for anyone else who wants advice on planning a wedding:  people will forgive you if you don't have real flowers (seriously, who cares?) and the food only has to be so-so (people rave about the food at their favorite restaurants, not at weddings).  But what people WILL remember is if the music was good, if they could dance to it, or if the DJ seemed to be stuck in a slow, jazzy mood, or if he played random duds.  People also remember if there was no music at all (yeah, I've been to a wedding like that).  Honestly, that's what I feel determines whether a wedding is fun or not. Which is why our DJ was the SECOND vendor we booked.  My requirements: someone who could play different styles; someone who would play hip hop and soul; someone who's DJ'd at clubs or bars.  My sisters and I love dancing and I've already practiced doing the robot in my wedding dress.  And after my surgery, I bet I'll either be sleeping, watching television, or having a dance party in my bed with my Beats by Dre (Thanks Boo!).  Join me in celebrating (?) a plastic tube coming out of my stomach with a little Wedding Mix dance party to some of the jams Ben and I have chosen for the wedding :)

People will be mingling and talking...and drinking.  Kendrick Lamar is one of my favorite hip hop artists, and I thought his "Swimming Pools" would be the perfect way to get the party started a little as people start to get a little tipsy. 

Now see, this is why I needed a DJ who could play different styles and make it not seem crazy.  Ben's pick from the Proclaimers, "I'm Gonna Be," is one of the songs he put on a mixtape for me.  I'll admit, I do love this song.  

I discovered Jazzanova when I was in college, during my "I don't really need to listen to music with a lot of words" phase.  Jazzanova was one of the few groups that managed to stick with me once I grew out of that.  I thought their "Behold These Days" would be the perfect dinner music, without giving off too much of a "smooth jazz feel."

Now Ben and I have been working pretty hard on the actual "dancing" part of the playlist.  We want to make sure we get everything we want on the playlist and we hope that our talented DJ can fill in the gaps.  But one thing we all agreed on--there needs to be a ton of Michael Jackson songs on the list.  A few birthdays ago, Ben purchased "Michael Jackson the Experience" for me.  And then one day, while playing, he scored hire than me on one of the dances.  In fact, he kept the high score for a while! I was so upset that I practiced for 8 hours one weekend, just to beat his score. And finally, I can say that I AM the reigning queen of "Smooth Criminal" in the Edwards/Ashman household.  What can I say? I'm bad.

Monday, April 1, 2013

Donate Life Month: A Thank-You

You may not have saved a lot of money in your life, but if you have saved a lot of heartaches for other folks, you are a pretty rich man.  ~Seth Parker

Dear Donor,

So guess what this month is?  It's Donate Life Month.  Donate Life Month is a special time set aside for people who made the commitment to give of themselves so that someone else could survive and thrive.  These people may have given blood, kidneys, portions of their liver, or bone marrow.  They may know the person who received their donation.  Many do not.  Some are no longer here with us.

Donors, and aspiring donors, I hope you can understand the power that you possess--the power to preserve, to give life, to help, not knowing of or expecting anything to be reciprocated.  What you possess is true compassion, true selflessness, and a true heart for other people.  Your donations are unmatched to what you could possibly give, ever.  

Thank you for being such a blessing.  


Since I was first diagnosed with kidney disease, I have been overwhelmed with the number of people who have come forward offering to donate their kidney to me.  I would love to list all of your names but then again I run the risk of missing someone. Which would not be cool :) 

But I will say that many of you have volunteered your blood types (O+ people, what's up?!).  Some of you have offered to find out your blood type :)  Some of you are my family members.  Some, my future family members. Some of you I've known since high school.  Others, I only met last year.  One in particular volunteered to go through a complicated plasma exchange process so that he could donate (Ben lol).   One of you has already completed the donor work up, and hasn't given up hope (Jocelyn).  Another, will hopefully find out soon if he's the one (Dad).  

My doctors have told me that most people don't have as many people lined up to donate as I do.  And I am so fortunate have more people than I can count on two hands who have offered to step up. You guys ROCK. And thank you so much. 

But I would add that even if I'm not the recipient, please consider donating something, anything to someone else.  The average wait time for a kidney right now is 5 years, because there are just not enough kidneys.  Please consider being a living donor.  You have no idea what you can do for someone.  

So I just want to say thank you to all the past, present, and future donors. We sick people need you. We love you. And we thank you for caring.

For more information on living donation, visit My Transplant Life.  
For more specific information on donating a kidney, visit National Kidney Foundation.