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."

"But you're so young!"

It's the last week of  National Kidney Month.  Boo! I hope you enjoyed it as much as I did.  Can't leave without one last post.  Happy Kidney Month!

I've talked a little about my story and how I learned I had kidney disease in my "About Me."  But I thought it would be great to just reiterate a few things that I've said, and talk about what I've learned over the last 10 years, living with kidney disease and a chronic condition.  If this helps one person, then this post has done its job :)

You don't have to be old to get sick.  Most people know this but I get it all the time--the surprised reactions when I tell people I have kidney disease.  Kidney disease, or any disease, can strike at any time, when you least expect it.  I don't say this to scare anybody, but just because it's a fact.  I was diagnosed with FSGS  when I was 16 years old.  And at 26, people still remark "You look so young." That's because I am young!  I just also happen to have a chronic condition.  

You don't have to have an unhealthy lifestyle to get sick.  I've mentioned before that my mom cooked all our meals growing up.  We rarely ate fast food or ate at restaurants, and no one in my family is obese.  And as a teen I was pretty active. I did ballet for 10 years.  I say this because kidney disease is a condition that has many factors that can play into developing it.  Those factors are high blood pressure, obesity, and diabetes.   All of those conditions are linked to what most people perceive as "unhealthy lifestyles"-- eating too many fattening and high sodium foods and not exercising.  I believe that everything in moderation is fine; that taking a handful of vitamins every day will never be enough; that eating meat is still OK; that going organic is just a good practice in general, because who wants extra pesticides in their food; that making things from scratch is rewarding; and that exercising makes you feel good.  I believe all of these practices make you stronger and make you feel great, but they don't make you disease-proof. Some things are genetic.

You don't always feel sick when you are sick.  I've read stories of people finding out they have kidney disease at the last possible minute.  Basically, when their kidneys had failed.  That's because with many conditions, you may not actually feel sick until things get really bad.  I didn't start developing symptoms of kidney disease until winter of 2002.  And they would have gone unnoticed.  Teenagers aren't always as quick to point out that they're not feeling well.  I however, was feeling fine. Great actually!  But after a weekend band competition in Florida, I noticed there was swelling in my ankles, and it seemed like I'd even gained a little puffiness in my midsection.  Well, swelling and weight gain aren't that unusual, so my parents told me to just put my feet up or soak in the bath. No big deal. I went through three weeks of this, all the while feeling just fine.  Then I woke up one morning, face inflated like a balloon.  I still felt fine, but my parents agreed, that it might be time for a trip to the doctor.  It's the little things like this that tend to go unnoticed.  Fatigue can be excused by too many late nights.  Nausea can be explained undercooked meat perhaps.  This is unrelated, but my fiance's wrist has been hurting for at least five years now!  But the point is:  why don't we investigate these things?  Is it because ignorance is bliss, or are we scared to find out that something might be wrong?  The reason I've been able to keep my crap kidneys for the past 10 years, without dialysis until now, was because of early detection.  Annual doctor's visits, or more often if you know your medical history, are essential to stopping a disease in its tracks.  

Sickness doesn't have to define you. There's a lot of people who were surprised to hear that my kidneys were failing.  And these were people that I'd say are pretty close to me.  It's because the first thing I say when I meet people is not "Oh, I have kidney disease and I need a transplant."  And it's never been that way.  Sure it may come up in conversation, but before this blog, I don't think I even talked about it that much with other people besides my family.  And I'm proud of that.  I've never wanted the fact that I'm sick to hold me back from doing anything.  Hell, I don't even want to cancel my wedding OR honeymoon!  But just because I don't go around telling every single person I have kidney disease right away does not mean it doesn't affect me.  Because it is a chronic condition, more than half of the decisions I make in a day are influenced by my illness.  But what about the other half? I try to use the other half of my decisions to make life as great as possible for myself and someone else hopefully. 

When I was first diagnosed with kidney disease, I seriously thought my life was over. All that was in my line of sight was death. But two nights ago, I was saying my prayers. And I started praying to God as I usually do, thanking him for my apartment and my job...then I suddenly thanked him for "my swollen ankles." Then I started thanking him for all the things in my life that are...less than desirable I suppose you can say.  I know it sounds crazy but I started thanking him for all the symptoms of my disease! I don't know why, because I know that God does not wish suffering on me.  But what I've realized over the past 10 years that all of this, the course that my life has taken, it's for a reason. It's part of a bigger plan. And I can honestly say that because of that day 10 years ago, when I face puffed up like a balloon, I am a better person.  Nowadays, when I tell people I have to have a transplant and they say "Oh, I'm sorry," I almost want to say "I'm not."  I'm not sorry.  In fact, there's some days where I feel so blessed that I don't think I could feel more blessed even if I was healthy. And I think that's the biggest lesson I've learned out of all of this.  

 

The New Dealio

Last week, we got the news:  Jocelyn will not be donating her kidney to me at this time. So now I'm back at square one, without a donor, and without a new kidney.  And we were pretty sad about it, but I'm happy to say that I've officially...moved on!  Yep!  In fact, for the first time in months, I feel FREE.  I didn't know it, but waiting for a kidney transplant actually put me in the mindset of...waiting for a kidney transplant...if that makes any sense!  I kind of adopted the attitude of "when I get my kidney transplant...I'll do this" or "after I have my transplant, I'll do this!"  Well, sure that worked fine when I thought my transplant was going to be in like two weeks.

When I received the news about my sister, I thought, what am I going to do now.   How much longer do I have to wait?  Is it ever going to happen?  What about my plans?! MY PLAAANS!  Then it dawned on me.  Instead of waiting for my new post-transplant life to begin, I need to just move on with my current, "sick person life", and really...actually...this time, try to make the very best of it.  Once I realized this, it was like a door opened.  Two doors, actually, that's what I envisioned.  They opened and there was light!  A big bright light! And I walked through those doors and into that light and I flew. I was free!  Is it possible?  Is it possible to just do this "sick person life" forever? Maybe I don't even need a transplant!  And that's when I made yet another plan (of course) to...move on!   Here, I'll break down the plan.

First, I'm going to throw myself into wedding planning.  We're less than 100 days away now, and despite a few issues here and there, I'm actually CRAZY excited.  I think about the wedding every day now, and not with panic about appointments or projects, but with joy. I get a sugar rush every time I think about walking down the aisle to Ben. Eeeeee!  I all of a sudden feel more motivated to hand address those invitations that are supposed to be sent out on the 15th.  

Second, and this isn't set in stone, but I'm going to start dialysis as soon as possible.  This is my life now. My kidneys just can't take it anymore and I need to get acclimated with the process.  I've been doing a lot of research to find out what it's like to live life on dialysis.  This could be where "naive Jewel" takes over, but it doesn't sound like it's ALL bad.  Definitely highly inconvenient, and expensive but it's doable.  People do it for years before ever getting a transplant. And a positive (even though I thought we were done with that), I might even feel better!  And, I can still live a full life.  Which leads me to the final part of the plan.

Ben and I are still going to go to Greece.  I'm going to check with my doctor to see what he thinks about traveling.  And regardless of what he's saying, I'm going.  But something tells me he'll be OK with it.  They have dialysis centers all of the world and even in Santorini!  And I've read articles from people who have traveled with dialysis.  You just have to make preparations in advance.  And we all know how much I LOVE that.  :) 

I think I'm happier now than I was a year ago.  I almost don't even CARE about getting a new kidney.  HA!   I'm still hoping for a miracle, because Ben says I have to or else I should just kill myself.  But there's also a comfort in feeling that maybe God doesn't want me to have my new kidney right now, at this moment.  I know He doesn't want me to suffer; He wants me to prosper.  But maybe for me, the time is not right.  Maybe I'm not ready.  I don't know...but I have to believe that He wants the best for me.   I think I'm just supposed to be here in this place right now. 

Anyways, I found this great prayer on this devotional website.  I hope this helps someone today as it's helped me:

"Dear God, Thank you for being with me through my suffering. This present suffering does not compare to the future Glory that you have for us. Keep my eyes on the prize so that I can hold on to the hope that I have for a better tomorrow. Use me today to help somebody who might be suffering to encourage them that weeping may endure for the night but joy comes in the morning. I rejoice that you trust me with trouble because as a result I’m stronger, wiser, so much better. Without you God, I never would have made it. In Jesus Name, Amen"

Real talk.  Can't wait to be "stronger, wiser, and so much better."