Five Years Max

I think it's time for a little kidney update. So, here goes.

My transplant nephrologist recently told me that I'm probably only going to have my dad's kidney for another two years.  That would put its transplant life at just five years.

Trust me. I know that's not a long time.  We all hear and read stories of people having their kidney transplants for 10, 20, even 30 years.  Well, this is the story of the girl who only had her transplant for five years.  

I really wished, hoped, and at one time I prayed, that I would get to be in the first group, regaling others with the success story of my kidney transplant. But five years is not a success story.  It's more like a failure. 

Translantiversary--How to Stay Healthy Post-Transplant

The Transplant-iversary

The one-year anniversary of the day I received my kidney transplant is approaching.  Yesssss!  I'm excited about it.  Why?  Because it means I'll have accomplished what seemed like a daunting goal nearly 12 months ago. The goal-- to keep my kidney.

A lot of things could have happened between last year and this year.  I could have gotten really sick.  Or, I could have decided to not take my medicine for like a whole week.  Or, I could have just had bad luck and had the kidney fail.  

But we are SO CLOSE y'all!  So close to being able to truly breathe that sigh of relief knowing that I survived the first year of living with a kidney!!  Surviving the first year of marriage doesn't get here until June 15.  The jury's still out on that goal.  

If you have a transplant, I think it's important to accept that the new kidney does not have kidney disease.  It has taken me all year basically to get used to saying I don't have kidney disease anymore.  You spend so long having one thing be "your truth."  Once that thing is no longer the truth, it's not easy to completely switch into a new mindset, even if the new truth is so much better than the old one.  I had to really learn to walk in this new space of being healed and free from disease! But, it's just as important to recognize that we have some control over our health. And even though I'm OK now, I like to try to maintain some semblance of a healthy lifestyle, even with a suppressed immune system.  

Follow a healthy diet.  So the transplant fixed 98 percent of my health problems. But I knew that I couldn't just go all cray-cray and dive into a bowl of heavily salted cheese puffs just because I am walking around with a working kidney.  I was determined to maintain some piece of the diet that I've been trying to remain dedicated to for the previous 10 years prior to my transplant.  I absolutely love food.  I live to eat, for real.  And let me tell you one thing that I've learned:  that desire for food just grew stronger after receiving a kidney transplant.   No joke, at a recent surprise party I thought someone was going to have to burn the pizza boxes because I was CONVINCED that I needed to eat an entire pizza.  

Since the transplant, I've continued to follow the wonderful low-sodium diet.  It's the only diet you'll ever hear me advocate for on this blog.  I eat just about everything except for raw fish.  So I'm not the person who's gonna tell you to just eat kale.

The key to doing this low-sodium thing is to cook your own damn food.  That's the number one way to control how much salt you put into your body.  Too much salt = high blood pressure = possibly kidney disease, heart disease and other s*%t you probably don't want happening to you.

Attempting exercise.  This is definitely an area that I struggle in.  I wake up every morning to exercise, saying "I hate mornings. And I hate working out" without fail.  I'm just...not a gym rat. I like the feeling that I get after working out but during the exercising process, I'm less than thrilled.  However, I have to do it now that I'm "normal."  My post-transplant diet allows me to eat more foods and my cravings are stronger because my kidney is working correctly.  Which means...I can gain weight!! It's not uncommon for a transplant recipient to receive an organ and come back a year later with an extra 50 pounds on them.  I don't want to be that person.  So, I cry and curse and force myself to do lunges every morning until I forget what I'm doing and where I am.  

Taking temperatures and blood pressures.  This kind of saved my life a few times.  If I was ever having a day where I felt crappy I'd take my temperature to see that yes, I was indeed feeling crappy with a low-grade fever.  Before my last stint in the hospital, I'd taken my temperature every day and it was normal.  The day I went to the E.R. it had spiked to 100 degrees. I say this because, this isn't something regular people do--take their temperatures every day.  But it's something transplant patients should do frequently to make sure they don't have some kind of infection brewing underneath the surface.  Before this, I didn't know what it felt like when you have a temperature. But now I do, and that makes the difference between catching something that could destroy your kidney super early as opposed to finding out later, after you're back on the waiting list for a new organ.

Keeping a transplant healthy is not difficult at all when it comes to the things I can control. Its the other factors, the natural way our bodies are built to defend against a foreign presence and the effects of medicines that suppress our immune systems.  Those things, we can't control. But then I guess one of the best ways to keep yourself healthy post transplant involves building up a good attitude about your new situation.  Not worrying. Learning how too celebrate and be thankful for what you have in that moment. Understanding that even if you have CMV or forget a dose of meds, there's still a chance to fight to keep what we've been given. 

Throwback Bonus!

 A portrait of me, running around like a chicken with no head or wings, the week of my transplant last year.  Enjoy (again)!

How to Be Semi Productive

Celebration Time

The Transplant-iversary

New Posts Coming 

April 28

That One Time I Missed Most of March Because of White Blood Cells

Oh Haaaaaaaay.  How has your March been?  Pleasant?  A bit cold? A bit boring?  Have you been sick for the past two weeks?  Have you been thinking, 'Oh maybe I just won't get better until April and will have an excuse to take the rest of the month of March off'?  No?  Really?! How bout that.

Well, I'm back to the world people.  I'm finally remembering what it's like to not lay in bed 24 hours a day.  I enjoy the taste of food again.  I enjoy fresh air and sitting in a clean apartment, sleeping on clean sheets, not worrying about how many additional viruses are burrowing their way into the mattress while I breathed hot, infected air into my pillow.  I am alive. I am not a zombie. I am real and I am on my way to healing.

If you came to this blog in the past two weeks, you probably saw nothing.  Nothing good anyways.  It's true.  I've been sick for two weeks.  And let me tell you:  I ain't felt death that near since this time last year when I was gearing up to start dialysis treatments.  And I wanted it. I wanted it so bad. I wanted to go home and be with Jesus.  Dance with the angels and break thermometers because I knew I would never need them again.  That's how sick I felt.  

Why and how in the world did I end up like this?  Well, you can thank my kidney transplant for that. I'm sort of joking but sort of not because it is kind of sort of relevant to how all of this happened.  

Remember when I told you that now, with my kidney transplant, I was going to have to take medicine for the rest of my life?  Those medicines are called immunosuppresants.  In case you missed biology (don't worry; pretty sure I slept through 80 percent of it) your immune system is what keeps you healthy.  It's [hopefully] made up of a bunch of white blood cells who's purpose in life is attack foreign objects and bacteria that make their way into your body.  Usually those foreign bacteria (stuff not made by you), can make you really sick if they're not dealt with correctly.  So most normal people have a good army of white blood cells who fight off these things and keep you from having to take any sick days, in case you were wondering why you never get a cough every once in a while.  I'm sorry, but this is probably it.

White blood cells are good for stuff like head colds and the flu.  But bad for stuff like organ transplants.  Because even though my kidney transplant is good for me and keeps me alive, it's still foreign.  So according to my WBCs, it needs to go.  And this is why, I take immunosuppressants:  to keep my WBCs from building up their army, so that they can't call out my kidney for being a foreign object.   The results:  my dad's kidney gets to live in my body as a spy forever, working alongside my natural organs....but I also am more at risk for contracting things like CMV. 

Cytomegalovirus.  In a nutshell, you probably have it because apparently 90 percent of the population gets it at one point in their life.  It just doesn't make everyone want to die because most people are healthy.  

For the rest of us--the 10 percent who randomly never got the virus and the immunosuppressed--when we are infected by this nearly harmless virus...it can make us feel like solid S&#T until we get treated for it.  

So, now I present to you:  five things I wouldn't wish upon anyone:

1.  Diarrhea.  

2.  Pain in your eyeballs so bad that you start to wonder if you have a brain tumor and regret that time when you didn't wash your hands for exactly 20 seconds before putting a new pair of contact lenses on.

3.  This weird thing in the upper middle part of your abdomen that makes you cry when you walk and also makes you think you have an ulcer and/or cancer according to WebMD.

4.  Sleeping for 24 hours.  Unless you're into that sort of thing, which I am only SORT OF into that type of thing. I love sleeping, but I don't love worrying about getting a blood clot that's going to travel to my heart and I won't know about until I'm on the plane to Greece.

5.  Cats who clearly don't understand "Noooo I DON'T want to get up!" when you're lying in your bed face down for the 15th hour in a row.  They seem to think: maybe I'll just meow LOUDER and then the human will move.  It doesn't work like that, cat.

I am finally starting to feel better people.  I'm eating again.  I went to the gym. I'm staying up late again.  Ben and I hugged for the first time a few days ago.  Things are looking up.   

 

 

Things Remembered

“Friendship is born at that moment when one person says to another: “What! You too? I thought I was the only one.”

~C.S. Lewis

I was staggering about in my company's "pantry," the employee lounge that's filled with free coffee and tea dispensers and rows of snacks that would rival any 7 Eleven and Whole Foods check-out counter.  I needed gluten-free chocolate chip cookies, then a pack of Gushers and of course a straw for my covered cup of hot water.  I dipped in between pairs of people standing around, talking about their days up to that point, and football. I carefully stepped in between a man and a woman--a woman who, with concern in her voice, was asking "How are you?  How was dialysis today?" 

I had already walked away from them to put my stash on my table. But I did what a very nosy Jewel would do and walked back up and stood very close to the couple, pretending to grab a pack of barbecue Pop Chips.  I pretended to grab other things too, like packets of sunflower seeds, another bag of gluten free cookies, while sneakily pulling tidbits from this man's and woman's conversation.  Like a cat, I was waiting for my time to strike, to jump in and show him our commonalities.  To show him that even though he is a middle aged, white man and I'm a young, black woman, that we share something.  We both know what it's like when our bodies fail us. We both know what it's like when someone tells you that you need something, and you don't have any control over when or how you'll get it.  

Several more "fake" trips up to the grocery aisles of my job's employee lounge, the man and woman finally end their conversation. And I take my shot.  

"I'm sorry but...did you just say you were on dialysis?"

From the moment the question left my mouth, we were engaged in such a lively conversation you would have thought we were old friends.  Anyone walking in would have said, "Wow, they seem to have a lot in common.  They must know each other well."  The truth was that I didn't know him before that day.  Yet somehow, after I asked my question and he answered, it was as if we knew a whole lot about each other.  

We exchanged disease explanations and kidney functions.  I gave him some tips on getting a donor set up as quickly as possible.  I told him about my transplant.  I told him about my doctors and my hospital.  We made plans to have lunch together.  

Ten months ago, I was walking around in that same pantry, grabbing what was probably my fifth cup of coffee for the day.  I was exhausted. I looked exhausted.  Dull. Bored.  Unhappy.  Ill.  And some might say lifeless.  And I would walk into work every day wishing that I wasn't there.  Or even wishing that someone could just just know automatically what I was going through so I wouldn't have to explain it to them.  That way I wouldn't have to answer a billion "Are you OK?" questions throughout the day.  No, I'm not OK, was what I wanted to say all the time.  But I didn't say that because, when you have a chronic illness, sometimes it's just not worth getting into with someone who might not even be able to relate.  

I hope that I was that person for my new friend from the pantry. I hope that I was the person who can relate.  The person for whom you don't have to explain everything to.  I hope that I was the person who just gets it already.  

I wonder if he knows that he was that person for me.  I'm nearly a year out of transplant and technically, I don't have kidney disease anymore.  It was still such a blessing to meet someone who just gets it without me having to explain it to him.

My new friend from work has kidney disease and is currently on dialysis.  

Like me, he needs a kidney transplant. 

 If you or anyone else you might know is interested in becoming a living donor, feel free to leave a comment on this post or email me at jeweledwardsdc@gmail.com.

Go Bloggy, It's Ya Birthday...

OK so I know I'm late, about 15 days. But if it hadn't been for the "lost week" then maybe I would have made it on time instead of having to celebrate this milestone belatedly.

If you've had enough of my vague references...IT'S MY BLOG'S BIRTHDAY!  

Happy Birthday 

"Love in the Time of Transplant!"  

You are OFFICIALLY one-year old.  I guess that makes you a toddler, right?

As a writer and as someone who just assumes that people want to read about my life,  I've started quite a few blogs over the past five or six years.  All of them died in their infancy, fizzling out after about a month and maybe one or two posts.  For some blogs I was only able to fill out an "About Me" section stating how excited I was to share a certain aspect of my life, my experiences, adventures and thoughts.   I invested so much effort into creating the perfect layout and description for the blog that I suppose I exhausted all of the excitement and energy that I should have used to, oh, I don't know, write an actual blog post. It was actually my husband (always him) who encouraged me to start this blog and to see where it takes me.  

When I experience something, be it big (like a kidney transplant or a wedding) or small (like a stupid common cold) I immediately want to write about it.  This is the case for all writers I suppose.  After our first meeting with the transplant coordinator, as sad and unfortunate as it was to have to talk about surgery and knives and expensive health care, I couldn't help but think that the experience would make a funny story because Ben and I were starving during that meeting!  I love reading that blog post, my first one.  Really, it's such a great summary of how this entire year and experience with kidney failure, my family and my husband has been.  There's always been something to smile about and laugh at, even when what we were dealing with was really no laughing matter.  And for that, I am grateful.

Not every post I have written has a funny angle.  There are plenty of sad ones.  Strangely enough, many of those posts are the ones I'm most proud of.  When I started this blog I had no idea what it would turn into, what other types of things I would write.  But as I wrote more and more, I realized that I didn't just want my blog to show the "funny side" of things or the silver linings, or the times when I was being optimistic or positive or hopeful.  I read a lot of blogs like that and I love them for what they are. I truly do love looking at life in the best way possible and trying to make the best out of things.  But I also believe in what's real. I believe that sometimes...life f*&ck$% SUCKS.  And that you don't always feel good about what's going on in your life.  And that's OK.   If you've ever gone through something terrible and had someone tell you to "stay positive" then you know what I'm talking about.  Sometimes, you just don't feel like doing that at that second!  And that's OK!  Some people may not agree with me but I totally encourage pity parties, alone or with friends or family members...or brownies.

I've also loved all of the posts I've written about my faith.  I didn't intend to turn this space into a "Christian blog" or anything like that.  Not because I didn't want to make anyone feel like they couldn't read it because they're not Christian.  Mostly because, I am not the "perfect" Christian I guess you can say.  I curse in many of my posts. Ben and I were shackin' up before marriage.  I don't immediately go to the WORD when I'm feeling a certain negative way about things.  I didn't want people to look at me and say "Oh, she's a Christian and she's doing this and that."  But, I can't control other people and what they think. I can't control what you the readers think either.  But I love you nonetheless. And I love God. And I know that "while we were yet sinners, Christ died for us."  I write about my faith not because I'm trying to change people.  Only God can do that. But I like sharing what I learned in church or during my private study, and how God saved me and has done so much for me in my life.  He's the reason I can write to you today and say "Hey! I had a kidney transplant! And it worked! Huzzah!"

Anyways, one-year of writing, sharing, and being real.  I love this blog. I'm grateful that other people love it too.  Thank you readers.  I guess I'll keep going.  

To Celebrate LITOT's 1st Birthday, Revisit the TOP 5 MOST READ Posts from the Past Year!

When Your Fiance Gets a Transplant   
This makes my heart happy :) Y'all loved this amazing post from my husband, who is an awesome AWESOME writer.  I really need to get him to write more.  Please help me convince him!

 The Best Rehearsal Dinner Ever...Probably
I guess everyone really wanted to know how our rehearsal dinner went!  Or...you were scanning for wedding information :) Don't worry...I've got wedding recaps coming Feb. 3.

10 Things, One Tube 
One of my favorite "list posts."  I'm glad so many people wanted to know what life was like with a tube coming out of my stomach...a.k.a. a peritoneal dialysis catheter.

The Best Thing About My Dialysis Appointment Was Krispy Kreme 

 This was one of the longest posts I've written, I think.  So many of you took in my thoughts on learning about dialysis and then nursing my broken heart with Krispy Kreme.

Mini-Moon and a Blogcation
Surprisingly, a lot of people read my last post before my first vacation post-transplant.  I can't wait to see how many of you read about Greece (3 months til departure)!!  

Scenes from the Lost Week

So last week was pretty rough for me.  How was it for you guys?

Yeah...for me...it was RUFFFFF.  For the first time, I have to say I really I felt like I could call myself a Ruff Ryder, even without the bass ass motorcycle. Last week, I battled my first cold since the transplant. I'd been dreading this moment, and it finally arrived. 

When you get a kidney transplant, the doctors and nurses let you know that the medications they prescribe afterward are immunosuppressants.  These drugs weaken the immune system which, you know, helps you fight off illnesses and infections and stuff.  Basically, it attacks stuff that's not supposed to be in your body like, for example, another person's organs!  

People ask me why would my immune system try to destroy my kidney when it's working to keep me alive.  The immune system would just be doing its job, and our immune systems, when strong enough, are really good at finding and detecting abnormalities in our bodies (Check out more about your immune system here).

Taking immunosuppressants works wonders for basically "tricking" your immune system into thinking there's nothing amiss among the organs.   It trucks along, doing it's daily immune patrol duties, taking roll call of all the organs, not even being able to detect that "one of kidneys things is not like the others."  It's abilities are somewhat compromised and this works wonders for preventing organ rejection.  But this also makes it so people who take immunosuppressants are more susceptible to viruses and infections.  

There is a whole list of things that people who take immunosuppressants are supposed to do to reduce the risk of falling ill.  Actually, the list should be renamed "Stuff That the General Public Should Really Be Doing All the Time but They Don't Because They're Busy, Lazy, or Nasty."  But that's just me.  The list includes things like washing your hands regularly, throwing out old sponges, and cooking your meat until it's done.  KA-RAAAAAZY right?  

Medical professionals also recommend immunosuppressed patients get all the necessary vaccines, including a yearly flu shot.  I've gotten a flu shot every year since 2009.  I ended up getting mine a little late in the game, on Jan. 16 after reading a bunch of reports about the flu virus picking up in parts of the country, affecting most severely young adults who chose to forgo an annual flu shot (BEN...I'm looking at you.  Also, praying for you because I don't want you to be sick.  Love youuuuuuu).  So I marched right into the minute clinic and got stuck.  My arm hurt for about two days.

I felt fine (besides the arm) until about Sunday morning when a scratchy throat and a few sniffles started to settle in.  If you've ever had a cold in your lifetime, then you know that's how it starts.  That first morning you feel little beads of snot in your nose dripping down to the back of your throat.  I figured because I was on immunosuppressants that I might get a few symptoms from having the flu shot but then eventually, over the next day or two, the symptoms would go away.  As that Sunday wore on, I started to feel worse.  My sniffles morphed into gale force sneezes.  I could barely keep my eyes open during afternoon church service.  When I went to my parents' house for dinner that evening, I had to take a little nap in the guest room.  After my one-hour timer went off, I didn't want to wake up.  

I spent Monday, MLK Day, in our bed...the entire day.  Well...until it was time to make dinner.  I told Ben that since we had that day off I would make his favorite dinner...chicken parmesan...something I don't make very often because it's really involved. I managed to get out of bed an make the quickest dish of chicken parmesan I've ever made (and perhaps the best?) and I felt encouraged that I was able to do it.  Surely, I thought, this cold or whatever was on it's way out.  

Tuesday morning, the first real workday of the week arrived,  I decided to call out and spend the rest of the day in bed.  I worked a half-day on Wednesday and ended up staying home on Thursday.  I made my first full-day appearance at work on Friday. And that was the first time that I could honestly say that I was feeling "better."  

Now, I don't know if colds and viruses hit transplant patients harder. But far too many times I found myself crying out to God, begging him to "take me home"...over sinus congestion.  But it was pretty bad, y'all!  My sister called one day and I told her that I wanted to go to the hospital to get anesthesia.  At least that helps you get to sleep, which I managed to get only 4 hours of each night.  I even kicked myself out of Ben's and my bedroom and slept on the couch two nights because I couldn't stop sneezing, crying for air and blowing my nose.  

I should explain, however, that this was BEFORE, I...broke down and begged Ben to buy me some Sudafed.  Up until that point, I was doing at-home remedies, which are good alternatives to medicating before you have a cold, in the early stages of a cold, or even for short term sniffles and sore throats.  If take so many medicines and it can be hard to keep track of what medicines interact or interfere with the effect other ones.  Natural treatments are a good start to treating any illness.  Some of the things I did, pre-decongestant:

• steep pieces of ginger with lemon in hot water for a "tea;"
• boiled a big pot of water with pieces of ginger and inhaled the steam that was produced from the boiling;
• drank mint tea; and
• made a soup with a nice broth. I chose a chicken tortilla soup.  I used the broth but left out the chicken because I didn't have any.  

But since I was having too hard of a time sleeping at night I had to give in to the pharmaceutical industry.  I'm sorry but I don't have any small babies crying for me to feed them at night.  And I'm not about to live like I do until I really have to, OK?  I called my transplant coordinator on what would be the last really bad day of my cold and asked her if I could take Sudafed. If you are a transplant patient, or someone who already takes a lot of medicines, I recommend that you consult a health care professional before you take anything over-the-counter.  I've heard from some people who just don't respond to certain medicines very well, be it aspirin or a decongestant.  

After taking a decongestant one night I was finally able to sleep for like five hours instead of just four.  Things were looking up. And as I'm writing this blog post I'm 85 percent back to my healthy self.

I didn't intend to write a post about having a cold, out of all things.  I was probably going to write about donors or marriage or something somebody said to me recently.  But you know, sometimes, sickness happens. And I know that all too well.  I didn't get any blogging done last week, along with any actual pay-me-money work, any chores or other grown-up to-dos.  But whatever.  

Let's end this post with a song, shall we? OK!  Anybody like Daft Punk? 

Of course you do.  Good luck this week. Stay healthy. 

Throwback Pic: From One Winter to the Next

Remember these?

What a difference a year makes, right?  These pictures were taken last year, just as I was beginning my kidney transplant adventure at Inova Fairfax Hospital.  My sister took these with my cell phone because I told her I was thinking of starting a blog to document my journey.

I look at these pictures and I think, "Wow, this girl was really excited." And, "Wow this girl has no idea that things are just going to get more complicated."  And also, "Wow, this girl doesn't really know how many vials of blood are going to have be taken from her body and pumped back into her body and taken out again."  I didn't know so many things then.

This picture was taken six months before Ben's and my wedding day. And now, I sit here writing this, thinking about how we've been married for about six and a half months.

Life is incredible, you know.  It's amazing how 12 months ago I was facing down kidney failure. I truly did start off 2013 with a bang.  An impending wedding and a bum kidney.  And I'm ending it with near perfect health.  No, really, I am. I went to the doctor the other day and my medical report said that my creatinine is 1.4, and all my nutrition levels are normal. I'm even allowed to stop one of my medicines now so I'm only down to taking three pills medicines. Still a little anemic but some things don't change I guess.

I'm ending 2013 healthy and in an wonderfully blessed marriage to my best friend.  I know I'm lucky. I know this is a miracle.  I know there are kidney disease patients out there who started the year on dialysis and will end it on dialysis, again, for lack of available donors. 

As I talk to more and more people about kidney disease and transplantation I find that many still don't know what a gift they can give by donating their kidney to someone who needs it.  And how safe it is.  

My goal for the next 12 months is to continue writing on this blog, about my journey through the first year of transplant, living life with kidney disease and my marriage, but I also want really drive home the fact that living donation is safe.  Living donation is cheap (the recipient pays for everything!).  And that living donation is necessary.  It's saving lives.  It saved my life.  And it can save more.  I'm hoping those of you that have stuck with me this long reading this blog when I post will stick with me just a little longer.  Until we have too many donors and not enough recipients.  That could happen in the next 12 months, right?  

Either way, Happy New Year, Y'all.  May God give you everything you need, all the desires of your heart, over the next 12 months and beyond.

Want to read the post where these pictures were featured?  Click HERE to start my transplant journey from the beginning! 

More than six months without coffee and I haven't killed myself or anyone else...yet

I may have mentioned this before...oh, I don't know, six months ago, but I quit coffee.  Cold Turkey.  I know what you're asking:  are you out of your mind, Jewel?  Well, yes and no.   

In April, just a few days before my kidney transplant, I sipped on a nice hot cup of delicious coffee provided by my job.  If you knew where I worked, then you'd immediately be jealous because my job basically has it's own cafe with different flavors of hot and iced coffee...and SNACKS...and they are all delicious.  I had been sipping on possibly the second of my typical three, three and a half cups that I usually downed during the day, when I felt a shooting pain run through my gut.  It threw me off for a bit.  It really startled me as most shooting pains do. I sat at my desk and pondered why my stomach could possibly be upset with this liquid black gold; this precious drink that keeps me running like a well-fueled worker- bee at my desk just type, type, typing away and not sleep, sleep, sleeping on my keyboard.  I took a beat, a few seconds to allow my body to regroup and settle itself, and proceeded to take another sip of my coffee.  Another shooting pain.  And this time, the pain rocketed up to my neck, briefly latching onto my gag reflex.  

My stomach was hurting and I was actually about to throw up my coffee.  My COFFEE.  

This really upset me because I don't like coffee--I love it.  And at the time it wasn't that I simply wanted my coffee--I needed it.  I can recall too many nights spent at one of the  coffee shops at my university.  At that time I was still pretty new to coffee and its wonders.  Too scared to try it black or with just cream, I grew fond of the chocolatey java mixes known as Mocha.  A few years later, I expanded my palette and added vanilla lattes to my roster of super cups.  On trips to Puerto Rico and Hawaii, I sought out cafes to try their best local brews. I remember waking up at 2 A.M. with Ben to drive to Maui's dormant volcano to see the sunrise. We took along two friends--two strong cups of Kona coffee.  And it was a beautiful sunrise because I was able to open my eyes and take it all in, instead of squinting beneath droopy eyelids.

When I started work after college, four years ago, I stupidly treated myself to a medium cup of Dunkin Donuts blend every morning. I say stupidly because I realized a year later that buying coffee everyday is quite an expensive habit to have.  When the company I work for was bought out by another larger company, were were provided with a whole "cafe" of different flavored coffees all made for us throughout the day.   And it's FREE.  

FREE.

Because of my husband's and my penchant for staying up insanely late on weekdays (with our heads hitting the pillow at midnight or 1 A.M.), and my incredibly poor kidney function just six months ago, you can imagine how mornings and me are not friends.  No, we do not go together like "rama lama lama ka dinga da dinga dong" (GREASE reference for those of you cooler than me).  Hell, to me, is asking me to wake up early every day for the rest of my life.  Can you tell I'm not a parent nor am I emotionally and mentally mature enough to be one right now? 

Before my transplant, I was definitely one of those people who'd scream "DON'T TALK TO ME!" when walking to the employee cafe in the mornings...until I got my coffee.  Then, once I had that warm cup of java in my hand, I became all softness and light, sweet and contrite...until about 11 A.M. when my first crash of the day hit.  I'd grab another cup of coffee and I was all good to go until the post-lunch crash, then I'd grab my third cup.  Around 4 PM sometimes I'd fill half a cup with some Earl Grey, just to give me that extra push to 5:30.  Ridiculous, I know.  Who needs coffee to make it through the last hour and a half of a workday? I did.

Looking back, I won't go as far as to say I was a crazy coffee addict.  There are more people in the world who drink a lot more coffee than I did.  But the coffee wasn't really doing me any favors.  Sure, it has antioxidants according to whatever MSN Living post you're reading today, but those antioxidants didn't really keep my kidneys from failing.  To make matters worse, on the weekends, when I wasn't at work and just an elevator ride from four different blends of hot coffee, I had to suffer through headaches, yawning, and drowsiness on Saturdays and Sundays because I was too cheap to go to Starbucks and didn't want to be tempted by McGriddles at Mickey Dee's while buying coffee for a buck.  But there was always Monday, I thought.  I always had Mondays at work to look forward to, not because I was SOOO eager to go to work but because there would be coffee.

One guess how I reacted when my transplant coordinator told me to quit coffee after my transplant.  No idea?  Well, my face dropped.  Not just my jaw, but my entire face slid onto the floor.  In fact, my head just started spinning trying to picture my life without coffee.  No, I thought.  Impossible.  I didn't sign up for this!  I signed up for a kidney transplant!  Not TORTURE!!  

You know me--Drama Town.

Now, to be fair, she didn't say that I should completely stop drinking coffee forever, just for about six weeks after my transplant while I was still monitoring my urine output.  Coffee is a diuretic, which means it causes urination more often than if you just drink water or juice. This can really confuse things when you're trying to measure the urine output of a new kidney.  There is some research that coffee can have some affect on your kidney function, however, none of my doctors ever told me to kick my coffee habit in the 10 years that I lived with FSGS.  My coordinator was mostly telling me to avoid caffeine, including black tea or breakfast tea and Chai, so that I could more accurately measure how well my new kidney was working.  

Well, let me tell you, it was easier to quit coffee and black tea than I thought it would be.  Here, want my recipe for quitting coffee and caffeine?  I'll give it to you!

• Add 10 minutes of shooting pains in your stomach while you're trying to do work in the office;
• Sprinkle on about six minutes of nausea;
• Fold in 10 years of kidney disease; 
• Mix, then bake.  Frost with a layer of impending kidney transplant, then
• For the topping, line about a thousand dollar bills on top, you know, because medical procedures aren't cheap;
• Then finish it off with \beautiful frosted calligraphy, in red, with the phrase "I really don't have time/can't afford for anything else to be wrong with me right now so I guess I can't finish this coffee."  

And Viola!  You've successfully quit coffee.  

Since the day that I threw a 3/4 full cup of Sugar Cookie blend with half and half into the garbage can, my life has mostly been the same.  I still have to wake up early for work.  And I still stay awake until midnight.  But, that's without ANY caffeine.  I drink GREEN and HERBAL teas now.  With no caffeine.  And I make it through the day, without crashing, without complaining, and without screaming.  I make it.  

I'm pretty sure I can drink coffee now if I wanted to, or black tea, since I'm not monitoring my urine output.  But I'm too scared I'll relapse. I still have dreams about drinking coffee.  And I love the smell of a freshly brewed cup (someone else's) just a little too much.  Way too much. 

I'm recovered coffee drinker, but you know how it goes.  Once a coffee-addict, always a coffee-addict. 

My new homies--the tea section at my job.

Return to Metro

I went to my first  "return to original nephrologist" appointment since the transplant on Sept. 12.  For the past four months I've been under the care of the hospital physicians, nurses, and my surgeons.  But once I passed the 90-day milestone and returned a clean biopsy (no FSGS!!) I attended my first follow-up appointment with my nephrologists at Metropolitan Nephrology.  

I've been with my nephrologists since I graduated from college, when I hadn't even considered kidney failure an option, at least not in my 20s.  For all my years of college, I felt pretty fine.  I drank, went to class in my PJs sometimes, ate all the regular food in TDR (American University's beloved caf), I had a roommate, I went to Mexico for five months, I stayed up until 4 A.M. studying.  As far as I was concerned, I was healthy.  As far as I was concerned, things were going to be just fine.  Sure I had to take some medicine, but it was nothing compared to what I'm taking now.  My disease didn't limit me then.  

When I started seeing a doctor for grown-ups after graduating, I learned that it was procedure for a doctor to explain to me (not my parents) what my lab work said.   And according to my first set of lab results at that visit, my kidneys had continued to decline during college and were functioning at 30 percent by that point.  I wish I could have documented that first visit.  Because I was so naive.  I was still smiling at that point.  Hearing 30 percent function, you'd think I would have been freaking out.  But I think I actually said, "Oh, well that's good."  Not knowing much about my situation, I figured if they weren't insisting that I start dialysis or get a kidney transplant then, then maybe I didn't need one.  Maybe I could live a long, healthy life like that.  I still felt healthy.  Sure things weren't going great, but everyone's got their problems, I thought.  I figured 30 percent was good enough.  

Clearly, I didn't study math in college.  Because 30 percent of anything is not something to smile about.  30 percent of a pizza is two slices.  Just two! And I usually can throw back three slices. 30 percent of my paycheck takes care of my rent.  Nothing else.  30 percent of my clothing leaves me walking around in my underwear.  30 percent of the answers correct on a test is a failing grade.  A failing grade.  My kidneys were failing.  Why didn't I get that?  Probably because it was taking so long to happen that I believed it wouldn't happen at all.  

So I started my diagnosis journey with Drs. Yao and Fildes, pediatric nephrologists.  And my transplant journey began with my doctors at Metro.  

Walking into the doctors' office for the first time since April felt a bit like walking into your parents' house for the holidays, after being away for a few months.  The tree is already set up and decorated.  The familiar aroma of mom's cooking wafts through the rooms.  Those same sounds that can only come from your childhood home are moving through each part of the house.  And you get the feeling that this is where it all started.  That's how I felt coming into the office on Sept. 12.  

The nurses and the office manager were behind the reception area.  "Is that Jewel?" one called out.  I responded that yes it was me.  And they gave me a welcome that shocked me a bit.  It was like coming back from being at sea for a few months. I'm not in the navy so I'm not sure why I made that reference.  But I didn't even get that big of a welcome with I came back from studying in Mexico after four months.  I was surprised because they do work at a nephrology office.  Don't people get transplants all the time?  Then quickly, I answered my own question.  People don't get transplants all the time, because there aren't enough donors.  

The nurse took my weight and my blood pressure (normal!) and escorted me back to the doctor's office.  My doctor walked in and I was pretty happy to see him.  He asked me about my wedding.  And he reviewed my lab work.  I remember being pretty thrilled with 30 percent during my first appointment at Metropolitan Nephrology.  I was incredibly stupid, obviously.  But this time, as my doctor went down the line of the analysis of all the blood taken, and reported that everything was normal...EVERYTHING...not some things, but everything, I let out a loud sigh of relief and smiled.  The last time I was in this doctor's office was a couple days before my transplant.  EVERYTHING was wrong with me.  It's nothing but a miracle that everything is RIGHT with me.  

After the appointment, I went out and recounted the tale of my transplant adventure and recovery process to the nurses, who listened intently and seemed to cling to every word.  I showed them some pictures from my wedding and they couldn't believe I hosted 180 people for a party a month and a half after getting my new kidney.  

Telling this story to them, nurses who've seen many patients receive kidney transplants and do well, I realized that THIS was something to be excited about.  THIS is something to celebrate.  Words like "miracle,"  "amazing," and "hero," in reference to my dad, were tossed up. It's so great to return to a place where people know you, your struggle, where you started out, and how far you've come.  Where people can rejoice with you, celebrate with you, and smile with you, because you used to be bringing in failing grades...but now you've passed the test.  With flying colors. 

Why Not Me?

One of the first things Ben and I learned at our transplant consultation is the number of people on the transplant waiting list.  That is the number of people waiting for a life-saving organ transplant from a diseased donor.  If you go to UNOS.org, the homepage shows you the number of people currently on the list (119,467), the number of active candidates (76,506), the number of transplants that have occurred since January (14,105), and the number of donors (6,961).  When I looked at those numbers back in January, the time that I was added to the list, I felt sad, confused, and frustrated.  Nine months later, I’m still baffled by them.  

If you can look at those numbers and honestly say that nothing is wrong, then good for you. I wish I could be that optimistic. But when I look at those numbers, I see that something is very wrong with nearly 120,000 people who need a transplant to live and only 14,000 people receiving them.  And many of the people on the waiting list have been there for years.  YEARS.

. 

FACT:  The majority of the people on the transplant waiting list need a kidney.  80% of those people are waiting for a kidney.

FACT:  The average waiting time for people hoping to receive a kidney from a diseased donor ranges from 5 to 8 years.  Does anyone else think that is a crazy long time to be waiting for something you NEED TO LIVE? Because I do.

FACT:  18 people on the waiting list die every day while waiting for an organ transplant.  As someone who went through the waiting process, this thought crossed my mind often.  My kidneys didn’t work.  There were nights when I’d lay awake thinking about when I’d die. How long would it take the poison that my kidneys weren’t removing from my body to reach my heart or my brain? 

FACT:  Any healthy person can be an organ donor.  Ever since coming forward with my story about receiving a transplant from my dad, more and more people have asked me about becoming an organ donor. And I think that is freaking fantastic.  No, you don’t have to be dead, like it says on your driver’s license.  You can be a living, breathing, healthy person and offer to be an organ donor for someone.

FACT:  You have two kidneys, but you only need one.  Trust me.  I only have one kidney, it’s not even mine, and I’m doing jussssst fine.  Don’t believe me? Ask the best dad in the ENTIRE WORLD, my dad.  In fact, I think he has MORE energy now than he did before the transplant. And he only has one kidney.

FACT:  You can donate to someone who’s not a family member.  Sometimes family members aren’t the best donor matches because of hereditary conditions.  Really, anyone can donate to anyone, as long as blood types match and tissue types match.  But the doctors take care of that and make sure everything is in order.

FACT:  You can donate to someone you don’t know.

I say all these things because most people I’ve talked to have so many misconceptions about organ donation, especially kidney donation.  But the questions people ask me are actually more complicated than the donation process itself.  Really.  My hope is that one day, I’ll go to UNOs website, and I won’t see some crazy number like 100,000 people waiting for an organ with only 6,000 donors.  My hope is that people who want to donate but haven’t yet because they don’t know where to begin get more education on the process and are able to go through with donating, if it is their wish to do so.  And that’s a pretty sweet wish, if you ask me.  

I have never been in the business of pressuring people.  But I’ve always been blunt (you’ve been reading this blog, right?).  So that’s why I’m not afraid to ask, why don’t you donate?  Because I honestly think if more people asked themselves that question, there’d be a lot more donors, and a lot less waiting.   

Anyways, enough about you and more about my friend, Jean.  Well, we’re not really friends, but we’re more like friends in the struggle.  Jean is from California and has been living with a form of kidney disease called polycystic kidney disease.  Like me a few months ago, Jean needs a kidney, stat.  Like, she needed it yesterday.  And her family and friends are really hoping to find a donor for her soon.  Like all of the people on the transplant list, Jean cannot wait five years for a kidney.  I’m sorry but, that’s just not going to cut it.  But guess what, inside everyone, there is a living donor. A living donor for blood, bone marrow, eye balls, hands, tissue, liver portions, lung portions, and whole kidneys.  Because, like I said, normal people have two.   

Do me a favor would ya?  Ask yourself, “Why don’t I donate?”  If you can’t come up with a good reason not to, then let Jean’s team know.  And then buy yourself an ice cream cone and some salt free pretzels because you just potentially saved someone’s life.  And if you do ask yourself, and determine that today is just not the day for you to donate, then please tell someone else about Jean.  Pass it on until she finds someone.  

If you’d like to help Jean then email:  friendsofjeanloewenberg@gmail.com

If you’d like to help SOMEONE, ANYONE, then sign up to be a living donor: donatelife.net