A Celebration!

And new blog posts coming May 13, 2013!!

I'm excited to share my take on the surgery, the first week of recovery, and what it's like to be...healthy. Whoa! Can't believe I just wrote that.

When Your Fiance Gets a Transplant -- Ben's View

Hi Readers! Jewel, here. I'm resting up, but my wonderful fiance is taking over blogging for me for a bit.  Enjoy, and I'll see you soon :)

4:30 A.M.  I am woken by the sound of Eminem’s “Lose Yourself.”   I dozily realize that Jewel has elected to start the most important day of her life, to date….with a song about a white rapper and the trials of battling in the ghetto.

I consider for what must be the millionth time how strange my fiancé is, but then brush it off along with the sleep in my eyes.  It is a cool morning so I am grateful for the warm water in the shower.  I contemplate how this may very well be the only relaxing thing I do all day long.  My thoughts are interrupted by Jewel requesting that I hurry up.

Breakfast is not in the cards for us this morning.  Jewel isn’t allowed to eat or drink so I figure the polite thing to do would be to not gorge in front of her. 

We arrive at Inova Fairfax Hospital by 6:00 AM.  Several members of Jewel’s family are already there, including some out-of-towners.  They greet us as one group of zombies greets other--mostly with grunting and awkward shuffles.  We settle into our seats in a spacious waiting room.

Jewel and her father are called into the back for processing.  I am struck by a strange parallel between a hospital wing that specializes in organ transplant and a slaughter house.  I push it aside and follow at Jewel’s heels.  Her father, Dallas, is accompanied by his wife, Waltina.  

Jewel heads to prep room “R”.  This tiny rectangular room might as well be a torture chamber.  For the next two hours, six different nurses come in to perform various tasks.  One takes her blood pressure.  Five minutes later another has her sign some consent forms.  A third asks her about her medication history.  Yet another asks if she has a living will.  The experience is peppered with Jewel’s whimpering:

“Ouch.  That IV needle really hurts”

“I’m really nervous”

“I’m very cold and thirsty.”

“I’m scared.”

Each sentence she speaks pangs me.  Her words are so heavy.  I cannot remember the last time I ached with sadness.  I barely spoke at all.  I feared that if I opened my mouth or even made eye contact with Jewel that the dam would break and I’d begin sobbing uncontrollably.  I feign interest in some medical equipment hung on a wall and struggle to hold up appearances.  I’m supposed to be strong for Jewel’s sake-- to inspire confidence and make her feel at ease.  But this day the only “support” I could muster was to not crumble to pieces.  If Jewel’s mother had not also made her way into the room I question if I would have been able to do it.  

Jewel asks me if I am sick.  She tells me I don’t look well.  Apparently, I’m not faking being OK very well.  I’m cautious to not make anything more than very brief eye contact for fear that she will see my eyes glistening with moisture.

I am afraid Jewel will die.  ‘No operation is without risk’ one nurse had said.  This fact has been drilled into me for the past year.  I’m convinced this is the last time I will see the love of my life.

And like a flash they inject Jewel with some drug that begins to force her eyes shut.  Half-assed goodbyes are exchanged.  No kiss.  No “I love you.”   Not even a, “I’ll see you soon!  Good luck!”

“Goodbye.”

*************************************************************************************

Four hours pass. Amy (the post-op nurse) introduces herself.  She speaks:

“Unfortunately…

Jewel is still in surgery.  There must have been some confusion but I’m here to clear that up for you.”

Really?  REALLY?!  You led with ‘unfortunately’?!?!

She explains that only Dallas is in recovery.  A previous nurse had earned a collective sigh of relief from Jewel’s entourage by informing us that both she and Dallas had successful surgeries and were in the recovery area slowly coming out of anesthesia.

The anxiety begins to creep back into me.  I’m already sore in my shoulder and neck from being so tense earlier.  What’s another few hours of wondering about the welfare of your future wife?  We thank Amy and she skips away.

Two more hours pass.  I’ve found distraction in answering technology questions for Jewel’s family and responding to the flurry of emails and text messages coming through both of our phones.  I am in the middle of responding to a text message when a nurse appears in front of me telling us that the surgery was a success and both patients are in recovery.   I may see Jewel in about 30 minutes.

I am escorted to the recovery area with Waltina, Jewel’s mother.   Jewel’s area is a mess of tubes, machines, and IV bags with long, complicated words printed on them.  Another nurse pokes Jewel in the head and she wakes up.  Her eyes struggle to focus and then she locks on me.  The word “Hi” limps out of her along with a tiny smile.  I repeat the sentiment and beam back at her.

“Am I healthy?” she asks.

I smile even brighter than before and kiss her on the forehead.

“Yes, Jewel.  You are”

T-Day: The Art of Remembering

Transplant Day

By the time this is read by most, I'll be asleep on a hospital table, while surgeons do what has taken more than 50 years to perfect.  May 3 is the last day that the kidneys that were provided to me at birth, perform their last few functions, and curl up and die.  May 3 is also the first day of my second chance at living.  

In the days leading up to the surgery, my nervousness played second fiddle to excitement.  Two years ago, when I was told that my kidneys, which had been declining in function for the past ten years, would eventually fail I rejected the idea that I would need a transplant. I protested.  I kicked, and screamed, and cried.  I was angry at myself, my family, my fiance...God.  Fast forward to May 3, and the thing I want most is to have this transplant. The thing I want most is to not be on the last leg of my life.  I want to feel what it's like to be 15 years old again, because that was the last time my kidneys worked perfectly.  

After everything is said and done, and I regain energy, stamina, health...I don't want to ever forget this time.  I want to have this past year burned into my brain and imprinted on my heart.  I want to think about this period of my life everyday.  I want to photograph my scar. I want to stare at it.  I want to flaunt it. I don't want to wake up one morning and forget what it has been like to cry, to wish I was dead, to wish I was alive, to wake up feeling awful, to go to sleep feeling awful, to be in pain, to feel alone. I don't want to forget what it was like to miss out on things, to take it easy, to quit drinking, to watch what I eat.  I don't want to forget what it was like to have to call for help, to have to rely on Ben, to have to depend on God every second of every day. To count on God to perform miracles. I don't want to forget what it was like to watch other people, healthy people, and feel happy, sad, or jealous.  I don't want to forget was it was like to want to give up, but then decide to push forward just one more day.  I don't want to forget what if feels like to know you can't live without your kidneys. I don't want to forget all the people who have done so much for me. I don't want to forget what God has done for me. I don't want to forget that this has been the worst and best year of my life. 

I want to remember this time so that there will never be a doubt in my mind that I am stronger than I think I am. That even when I feel most alone, I can count on more people than I could have imagined to be in my corner.   That Ben and I can conquer anything, together.  That hope is enough to keep two crippled kidneys chugging along for a whole year, functioning at less than 10 percent.  That nothing is impossible for God.  That He is good, all the time.

I don't want to take anything for granted. I want to be thankful for every single thing.  Good and bad, because at the end of the day, it doesn't go to waste. It's all absorbed and becomes part of who we are.

"We continue to shout our praise even when we're hemmed in with troubles, because we know how troubles can develop passionate patience in us, and how that patience in turn forges the tempered steel of virtue, keeping us alert for whatever God will do next.  In alert expectancy such as this, we're never left feeling shortchanged.  Quite the contrary--we can't round up enough containers to hold everything God generously pours into our lives through the Holy Spirit."

Day/Night Before

I wasn't planning on deviating from my three-day posting schedule, but what the hell. It feels almost unnatural to NOT do a "before" post just as something as huge as getting a kidney transplant is about to happen.  It seems like it goes against everything we know about changes or expecting them and experiencing them.  How can you know where you're going until you know where you've come from, right?  I don't know if that really applies in this situation...but oh well. This whole blog is kind of like a "before" post.  

Anyhoo, the transplant is tomorrow.   I'm feeling...calm right now, as I'm writing this.  I was actually just a little bit bored before I decided to do this post.  This whole day has been a pretty good day.  I went to work, which was a surprise to some people. Not because I didn't have crap to do at home today.  Trust me, I had a lot of last minute items.  But really because I needed the extra paid day of leave.  And there will definitely be a blog post coming up on what it's like to work and not work when you have a chronic illness and/or surgery.  Stay tuned.

I went to work.  A coworker of mine made lemon bars. I ate two and experienced bliss while eating them.  I'm actually planning to make them during my "spring break."  I finished cleaning off my desk. I emptied out my email inbox.  I didn't drink coffee when I went into the office! Yes!  This is kind of a big victory for me.  The nurse practitioner at the transplant center told me to stay away from coffee at the beginning of the transplantation period.  I balked because until today, that has been impossible for me. Hi, my name is Jewel. And I'm a coffee addict.  Or maybe not...anymore.  Yesterday, while I was in the middle of my second cup of coffee, every sip I took caused pain in my abdomen.  Seriously! Every time I took a sip, knives. Stabbing me.  That's when, of course, I went to WebMD. I either have a tumor or some condition that is exacerbated by eating or drinking certain things, like coffee.  And just like that, I quit coffee, right then and there.  I think it's safe to say I have enough health issues (my tooth started hurting last week).  I don't need to deal with another thing RIGHT NOW.  

So instead of my usual cup of coffee, I downed a bottle of cranberry juice.  For lunch, I walked to the bank in GORGEOUS weather, and deposited three checks.  I returned to my desk with a cute card on it, signed by all my coworkers.  Everyone was REALLY nice to me all day.  Not that people aren't nice.  In fact, at my job, there are hardly any mean people.  But everyone was wishing me good luck and asking me a lot of questions, and saying they'll be thinking of me.  It was pretty great.

I came home, started packing.  Ben cleaned out the refrigerator. With me off my feet, he won't be cooking much at all so I told him it might be a good idea to get rid of everything that could rot, i.e. all the fresh vegetables.

And now I'm just...waiting for the next thing I guess.  Ben and I are going to dinner tonight.  A celebration.  Last meal. Last hoorah.  Whatever you may call it. Then we'll probably turn in for the night.  

After writing posts like this sometimes I wonder:  what ARE you supposed to do the day before a transplant, besides fast after midnight?  You know?  Sometimes I feel like we're expected to live bigger than things actually are.  I blame it all on Facebook and Instagram and the pressure to make it seem like whatever you're doing is awesome all the time.  And it really could just be eating a taco.  In a way it's nice, because it makes you celebrate the little things in life, like tacos.  And other times,  it's annoying because..they're just tacos.  And this is JUST a transplant.  I'm kidding. This is a big deal. But I have no regrets about how I spent this day.  Sure, there haven't been any shots of tequila, and there won't be any tomorrow either.  I'm content listening to Ben shave before dinner and watching the cat sleep in his climbing tower.  This is the day before a kidney transplant.  It's been a pretty good day.

Wedding Wednesday: Taking a Break

45 Days 'Til the Wedding

YAAAAAAAAY.  In a month and a half, I'll be a married woman!  Woo hoo!  I'm excited.  I'm finally super excited. My "excitement" level took a bit of a hit sometime in the middle of the engagement, when I ran into a few snags booking vendors and accepting my monetary limitations.  But now that we're heading towards the homestretch, I'm really looking forward to the wedding day, and formally starting my life with Ben.  

I basically went through a rundown of all the wedding details I wanted to accomplish over the weekend. And on Monday, I did complete my second fitting for my wedding dress.  I LOVE the dress. It looks perfect. Dare I say, I look perfect??? I don't know! But it's awesome and I'm excited for Ben to see it.  

SO:  What now?  More honeymoon drama unfortunately.  I've written about several "realizations" we've had to come to when planning this honeymoon.  A recap:

• Realization Number 1:  Back in January when we booked the honeymoon to Greece, Ben and I agreed it would be good to purchase vacation insurance, just in case we needed to cancel our trip.
• Realization Number 2:  At the beginning of April, Ben and I finally accepted that we would have to postpone our honeymoon until a few months after the wedding.  
• Realization Number 3:  And this is a new one.  I discovered Monday after going through the pre-surgery teachings, that planning an overseas honeymoon probably won't be practical, or safe, in the year 2013. And now, Ben and I are talking about scheduling it for Spring 2014.   

The reason we're thinking about postponing it even further into the future is because after the transplant, for at least six weeks I'll be going to the transplant clinic for check-ups twice a week.  During first 3 months after the transplant I have to be closely monitored to ensure my body doesn't reject the kidney, and if there are any signs of rejection I need to be close to my home transplant center.  The doctors are OK with travel after three months from the procedure, but that kind of only means travel within the continental U.S., where there's more certainty with acceptance of health insurance and more available information on U.S. transplant centers.  
This is not ideal of course.  But we really have no other choice. As much as I just want to be like, "Well, f*&K it! Let's just go anyways!" I also kind of want to be healthy, after such a long battle with being unhealthy.  

Right now, Ben and I are looking into other honeymoon options within the U.S.  At this point it sounds like we're doing a 2-3 day thing after the wedding, then a five-day thing three months after the transplant, then EVENTUALLY, a 10-day celebration in 2014.  That doesn't sound so bad, right?  I'm getting used to the idea.  I guess it doesn't matter where we go or even when because I'll be with my HUSBAAAAAAND. Aw...yeah!

Another teeny-tiny drama:  RSVPs.  I'm telling you, NOBODY returns these things anymore.  The RSVP deadline is this Friday and right now I'm waiting on 15 more responses.  But so far the guest list for the reception is at 163. When everything is said and done we'll have about 175 heads for dinner, I believe.  And so far we have 13 children attending. 

What's Next:  Well...nothing really.  The "Wedding Wednesday Series" and I are taking a 12-day planning vacation due to the fact that I'm going into surgery Friday morning.  I'll be diving back into the planning pool May 15, exactly 30 days away from the wedding, and there will be lots to plan and talk about.  I'm kind of looking forward to this new phase of planning, because two obstacles for me will be gone! I'll have a new kidney, so hopefully I will have that super-strength and super energy that everyone talks about. And second, I won't be at WOOOORK.  I like working, but honestly, working can suck when you're engaged. You have to coordinate all your vendor meetings and planning sessions either after work hours (which for me, means AFTER 6 PM) or during the weekends.  So that combined with my illness, makes it feel like I have no time to do anything! I'm hoping that by eliminating the 8-9 hour block of working from my day, I'll be able to accomplish more things in a more relaxed manner.  Plus, I'll have a chauffer to drive me to meetings (Jocelyn) if I need to.  I can see us having little planning sessions at home over tea and big breakfasts or lunches.  Which could be fun!

Welp, here goes. Wedding planning pause starts...NOW. ;)