Wednesday, April 30, 2014

Transplantiversary-- What Happens When I Get Sick Post Transplant

The Transplant-iversary

Nobody said the journey would be easy.  But after being healthy for even just a few months and having people tell you how healthy you are, and how great you look, it’s not hard to let to the thought consume you that maybe you are out of the woods; that this challenge has been pretty easy.  

From May until December, the remainder of 2013,  I never fell ill, even after watching several coworkers, my dad and Ben latch onto colds and flu-like illnesses as the temperature dropped.  I felt like my dad’s kidney had not only given me more energy and better blood levels.  The kidney had also seemingly given me some kind of invisible force field that kept me from getting even the weakest sore-throat-inducing virus floating around in the air.  It was nice, for a while to imagine that I, the girl who technically had the most suppressed immune system among my friends and family, was actually insusceptible to congestion and mucus-filled coughing. Obviously, me having a kidney transplant meant that the antidote to every infirmity, disease, illness, sniffle was in my blood. YES! Superman status, achieved, I thought.


January 2014.  My perfect months of not really rigorously washing my hands like I was supposed to and only using hand sanitizer some of time seemed to come back and bite me.  One day I was fine, living the dream of being in perfect health. The next day, nasal congestion and mucus had arrived, jamming a flag into the middle of my sinus cavity and screaming "We're HERE! We HERE!"  It's not like I had never had colds before.  Perhaps me being overzealous about "doing things the natural" way actually made it worse. I stood in front of the stove with my head drenched in steam and my nostrils getting singed, imagining it was actually working.  I'm still not sure if it was working. I found out from my nurse coordinator that I could take sudafed it turned out.  So I drove out into the midst of a snow storm and bought a box of store-brand decongestant and slept for the first time in four days during that time.  Recovery:  one weekend of Sudafed, sleep and trash TV.


March 2014.  I blame Vegas.  I was touching all kinds of hand rails and drink glasses. As well as those little chips they give you when you actually win money while playing black jack.  I want to say that's how I contracted CMW aka the virus that everyone, except for me and like 10 people, has had at one point in their lives. At the start of my symptoms,  I'd woken up with a fever.  I rode the bus into DC to cover a conference for work...standing...hauling purse, lunch box, and laptop bag...half a mile uphill from Dupont Circle Metro...with a fever. The runs came soon after that.  Recovery:  8 weeks/ongoing sort of, Valcyte, and moving really slow.

April 2014.  I stayed home from work after feeling horrible and waking up with a bit of a sore throat and a headache.  I took my temperature and I had a mild fever.  Nothing I didn't think I could sleep off. Then I vomited.  Twice.  My next course of action was to call my doctor, who suggested I go to the E.R. and once there he suggested I admit myself to the hospital where I had my transplant surgery for overnight observation. To my surprise, what the doctors observed via numerous vials of blood taken from my body was that I kind of had no immune system.  The medicine that I had been taking to resolve the March 2014 incident, combined with the medicine I was taking to suppress my immune system, had weakened my bone marrow production SOOOO MUCH...that basically it wasn't making white blood cells or red blood cells or much of anything else at the moment.  Meaning...I had no immune system.  Yeah.  That happened.  Recovery:  four days in the hospital, two blood transfusions, two IV sites, a lot of blood drawn, a lot of prayer, 90 seconds of crying, and one full length movie (Pacific Rim).  

Things were going well for for so long after my transplant!  I felt indestructable.  And then January happen, and since then I've been sick almost every month except for February.
BUT...I've also been HEALED and RE-HEALED in every month...except for February, I guess because I wasn't super sick then.
Every time I had a fever or felt a little off, sinceI hadn't felt that in a really long time, I just assumed my kidney under attack.  That it would be rejected soon. That I tried my best, and we all hoped for the best, but that it just wasn't going to work.

But I was healed and re-healed. 
I was healed and re-healed.  
I was HEALED and RE-HEALED!!!  
Superman status, achieved.

“Then my favor will shine on you like the morning sun, and your wounds will be quickly healed. I will always be with you to save you; my presence will protect you on every side."
Isaiah 58:8

Monday, April 28, 2014

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)!

Wednesday, April 9, 2014

Nothin' But Life Here

"Since the children, as He calls them, are people of flesh and blood,
Jesus himself became like them
and shared their human nature.
He did this so that through His death
He might destroy the devil, who has the power over death,
and in this way
set free those who were slaves all their lives
because of their fear of death."

Hebrews 2:14-15

Death Valley National Park, California

Monday, April 7, 2014

Living for the Weekend-- Sprung

My weekend recap series "Living for the Weekend" was on hiatus for fall and winter.  But I'm bringin' back, y'all, for spring and summer!

Yeah so this is back.  Does this mean I'm incredibly lame and boring during the colder months of the year?  I don't know...I don't think so.  I actually did pretty well this year as far as forcing myself to do things on the weekends even though it felt like the worst winter in the history of winters.  I didn't really start to let my S.A.D. get me down until maybe March, when I was sick for most of the month.  Poor March. I never really enjoyed you.

ALAS, Spring is REALLY here now. Therefore, fun is allowed.

  • After coming to the realization that we didn't do anything fun with each other during the month of March, except for flying First Class back to D.C. post snowstorm on March 3, Ben and I dedicated ourselves last week getting our "fun" meter up ASAP.  One of our favorite local beer-makers released a new brew (Ways & Means, after the most powerful committee of old men in the country) on Friday.  In pure "me" fashion, during our visit to the brewery, I took one sip and swore that I was already drunk.
  • On Saturday, I met up with some friends for brunch at someone's house. No pictures, but we had an excellent discussion on this book.
  • Sunday, Sunday, Sunday.  This Sunday was basically my idea of the perfect Sunday.  Not only did I discover that Ben and I hadn't gone on any dates last month, but I also hadn't enjoyed a relaxing weekend in a pretty long time. My weekend free time has either been stolen by fatigue or illness, a crowded schedule of social events and  commitments, or by a never ending list of errands that need runnin' or household chores that need doin'.  This year I'm learning big time that I HATE being busy all the time.  The thought of having something to do every day after work and multiple things to do over the weekends just doesn't appeal to me anymore like I did when I was 24 and younger.  I love the feeling I get when I look at my schedule for Saturday, Sunday, or after work and see that there is absolutely nothing that I have to do.  It's wide open for things that I want to do.  So last week, I strategically planned to finish more of my chores/errands/events during the workweek and on Saturday, so that on Sunday...I could do whatever I want.  We went to church.  We walked for an hour on the George Washington Parkway in the BEST weather since spring started.  Went to Costco. Took naps. I made an awesome dinner. Watched TV. Played my bass. And it was amazing.  My goal from here on out is to have at least ONE day or weekend like this, every single month.  
And based on my schedule, this past Sunday might have been my one relaxing day of the month.  Oh well.  In exactly 28 days...I'll be relaxing in a Greek paradise (!!!!!!!!!!!!!). 

Friday, April 4, 2014

Faith Through Hearing-- Got Hope?

"Let us give thanks to the God and Father of our Lord Jesus Christ!  Because of His great mercy He gave us new life by raising Jesus Christ from death.  This fills us with a living hope, and so we look forward to possessing the rich blessings that God keeps for his people.  He keeps them for you in heaven, where they cannot decay or spoil or fade away."

1 Peter 1:3-4

**Inspiration for this blog post came from a Godly woman to whom I promised I would not give up on Jesus if the tomatoes in my pizza garden do not grow.**
Bein' sick is hard, isn't it?  I ask this and just assume that you, dear reader, at some point in your life have been sick. And I'm not just talking about my kind of sick .  I'm not just talking about the kind of sick that is days, weeks, months of depressing health reports; miniature anthills of prescription drugs; and having to welcome Valium and anesthesia into your blood stream more times than you care to count.  I'm also talking about the sick where you wake up with a pounding headache.  Or maybe you've vomited twice in one hour.  Or hell, maybe you just sneezed three times in a row while you were waiting outside for the bus because, well, springtime.  

Because let's be real here--we've got a lot of crap to do during the day.  Am I right?  Do you have a to-do list with a million things on it?  Let me have a "plan," a "blueprint" for how the hours should flow into each other and how you are going to check off each and every single task.  You have an idea, a thought, a hope for how whatever you do in the next minute, hour, day or 17 months is going to make your life AWESOME.  

And to do that thing or those things, you need to have a body that's working at 100 percent.  

The sick person's hope:  I need the headache to go away so that I can think straight and get that dream job that I've been thinking about for the past 10 years.

The sick person's hope:  God, I need to breathe!  So I don't have to spend anymore money on those stupid stickers you put over your nose that claim to open up your sinus cavities.

My hope, once upon a time:  I need to get my kidney transplant YESTERDAY so that I can A) finish planning this wedding; B) get married to Ben; C) go to Greece because D) I need to be see things and travel as much as I can before I have kids so that E) I won't feel shackled to my life here in Virginia and wish that I had traveled more and done more stuff like drink wine or go to Vegas before I got fat and birthed three minions...BASICALLY, God, Your gonna give me my sister's kidney in February so that I can make my life AWESOME.  

I'm just one person. I'm in my 20s. And yes, I'm incredibly selfish at times. But that was my hope for a while.  I can see clearly now... And I'm not ashamed to admit that I was pretty f*$#ed up for thinking that way.  

If you've been on the blog for a while, then you know what happened.  I didn't get my sister's kidney.  I didn't get it in February.  Shoot, I didn't even get to go to Greece right after my wedding! I had to postpone it!  Yeah!  Sucks, right.  And I was destroyed.  My entire family was destroyed.  I read this here.  Sums things up way better than I can:

"If our future is not secured and satisfied by God then we are going to be excessively anxious. This results either in paralyzing fear or in self-managed, greedy control. We end up thinking about ourselves, our future, our problems and our potential, and that keeps us from loving.  If we don't have the hope that Christ is for us then we will be engaged in self-preservation and self-enhancement."
--John Piper
As a former chronically sick person who will always be able to understand the "sick person life perspective," being sick is hard. During much of my time living with chronic kidney disease it was so EASY (super easy) to turn my focus away from God and what He's said over and over again that He has for me and will do for me, and turn it inward toward what can I get for myself.  What can I do/eat/say/ to heal myself? I'm not saying we shouldn't strive to take care of ourselves when we're chronically ill!  Especially since receiving a kidney transplant depends so much on how well you're able to maintain health leading up to the surgery and post-surgery.  

But...what if we gave in to a hope that's in something better? A hope that's not necessarily in your sister's ability to pass the donor exam; or a hope that's in the doctor who makes the final decision about her approval; or a wedding.  LOL Sorry. I have to laugh because weddings are ridiculous things to put your hope in (I've been there.  I can say this. So HA).

What if we said...
"Hey God, I'm gonna take my pills and cut out my sodium intake and walk up and down the escalator instead of just standing because I really want to stay healthy so that I can get a kidney.  But, at the end of the day...I know you'll take care of me.  So even if I stood on the Metro escalator that one time coming out of the station, it's gonna be alright. Because you promised it would. And my hope is in that promise." 

Just a thought.  It's hard being sick.  It's hard living with sickness. He never promised life would be easy, but you, person reading this, are better for all the hard times you've endured.  Trust me God. You're awesome. 

Wednesday, April 2, 2014

86,400--New Series

"God gave you a gift of 86,400 seconds today.  Have you used one to say 'thank you?'"

William A. Ward

Thankful for...

Sugar-free chocolate cake that doesn't taste sugar free.

Google Maps App 

Delicious homemade dessert that re-purposes stale pretzels

Spring flowers & citrus

Cats that love Ranunculus

A sunny outlook