What Can Blue [and Green] Do for You?!

About a week ago Ben and I joined a new organization--we became volunteers with the Washington Regional Transplant Community, aka Donate Life Ambassadors!

Post by Washington Regional Transplant Community.

Celebration Time

The Transplant-iversary

New Posts Coming 

April 28

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.   

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 :)

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."   

Developments

Thankful. Speechless.

Surprised?  Me too.

The countdown to transplant starts now.

In the meantime, have a good weekend.

I know I will.  :)

 

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.