Volunteer Weekend and The Point of All This

I get a lot of things from my mom.  And not that I expected this, but I also inherited her love for volunteering.  While going through the kidney transplant process and as things grew a bit more stressful with the wedding planning, my volunteer aims sort of fell through the cracks. My gig working with kids at the homeless shelter in my city ended, partly because I was tired and partly because I had to commit a few more hours to planning a big party for 200 people. 

Well, as I'm sure you can imagine, I have a LOT more free time on my hands now.  The wedding happened (THANK GOD). The transplant happened (THANKS AGAIN, GOD).  And this cray cray summer schedule is starting to wind down.  Which means I can finally dedicate more time to "giving back."  I kind of hate that saying.  It annoys me a little.  Maybe because I've heard it in too many rap songs and PSAs.  But, I'm scarily unoriginal for a blogger, so we'll just go with it.

This past Saturday, I "gave back" with a few other volunteers from the National Kidney Foundation.  NKF leaders, directors and volunteers are incredibly dedicated to the prevention and treatment of kidney disease, and spreading awareness about the disease.  I joined them on Saturday at a small scale health fair/family fun day in an affordable housing community. NKF had a booth, halfway situated in the hot sun, and the other half under the shade of tents.  

 

The community where the fair was held is predominately, if not 99.9 percent, African-American.  So I think we were definitely in the right place.  African-Americans and other minorities are at a greater risk for kidney disease, due in part to the prevalence of other diseases in these minority groups that can put wear and tear on the kidneys.

At these fairs, when passing out the information, I try to make sure people have an idea of what they are reading.  One of the most important pieces of paper, in my opinion, is the risk sheet.  It asks three questions to determine your risk for kidney disease:  A) do you or does anyone in your family have a history of kidney disease? B) do you or does anyone in your family have a history of diabetes or high blood pressure?  C) are you in a minority group? 

Unsurprisingly, because of where we were at, at least 80 percent of the people who stopped by our booth met at least one of the risk factors.  

Going off on a slight tangent here, this blog post was supposed to go up on Wednesday.  But I received news that a family friend who had just had a kidney transplant, died suddenly, just a day or two after the operation.  His family does not yet know the cause of his death.  After hearing this I had this intense sinking feeling in my gut and tried to make sense of what happened.  I prayed for his family as they also tried to make sense of what happened.  And I all of a sudden became aware of my own mortality.  Tomorrow is not promised.  For anyone.  And living with a kidney transplant, almost makes me even more aware of the fact that every day is a gift.  My life is a gift.  Every minute that this kidney is filtering, weeding out toxins, regulating blood pressure, and just doing it's job...is a gift.  

It is my hope that through volunteering NKF, I can give people something that my family didn't have when I was 15, when I still took my life for granted: knowledge.  And that's also part of the reason that I started this blog.  

• If you or anyone in your family has a history of high blood pressure, don't wait another second before changing your lifestyle.  In some cases, mild cases of elevated blood pressure can be resolved with increase exercise and a switch to a low-sodium diet.  What people don't realize is, the salt content in our food has increased significantly over the last 50 years with the spread of fast food restaurants, convenience meals, and processed foods.  A low-sodium diet isn't just good for people who have or are at risk for high blood pressure and kidney disease, but it's something that should be adopted by the general public.  
• I want to stress this:  high blood pressure is a disease.  It is a disease that comes with no symptoms most of the time.  Which means, you could have it, but don't know it.  If left untreated, high blood pressure can seriously wreck your kidneys and your heart. 
• If you are at risk for kidney disease, make sure you ask for a creatinine test.  Creatinine is removed from the blood by the kidneys.  If your creatinine is too high, there's a chance the kidneys aren't working correctly. 

I think back my first appointment with my pediatric nephrologist, Dr. Yao.  And how scared and confused I was.  And how my blood pressure was 140/90.  And how there was protein in my urine.  I also remember how I had no idea what it all meant.  I'd made it through my childhood and preteen years with no health problems. Then all of a sudden my kidneys were only functioning at 30 percent.  I wonder nowadays how many other people out there are like I was back then. 

Well, judging from the health fair, there are still a lot of people who are unaware.  For that reason, I thank God that I went through this trial. 

If you're reading this and you really could care less about blood pressure or salty food or waste levels, well that's OK.  Because I care about your blood pressure, your salt intake, and your waste levels.  And I'm going to continue caring until we have a cure.  

In memory of Hugh West, Jr. 

Gone But Not Forgotten

My flesh and my heart may fail, 

but God is the strength of my heart

and my portion forever. 

Psalm 73:26

In memory of

Hugh West

Kidney disease warrior, August 28

Living for the Weekend: Eatin Good in the Neighborhood/A Reminder

"After all You are constant
After all You are only good
After all You are sovereign
Not for a moment will You forsake me
Not for a moment will You forsake me"

Not For a Moment, Meredith Andrews

 

The lyrics above are from a song we sang in church on Sunday.  One of my new favorites. Reminded me so much of how far God has brought me.  Three, basically four months ago, I received a new lease on life.  Anything, ALL THINGS, are possible with God leading us.

And thank God for making this weekend possible.  It was an OK weekend.  The UPs were I got to spend a lot of time outside, enjoying the city, people, spreading the word about kidney disease.  I also got to stuff my face with some really good food.  The DOWN:  I'm having car problems.  'Nuf said.

Top Left (1st and 2nd):  I had enough leftover produce last week to make cob salad with fresh corn to take with me to volunteer for NKF on Saturday.  So I didn't have to spend $8 on something I could have made myself, and I was able to stay on my low-sodium diet.  Fitting since I was talking to people about kidney disease and the effects of high-sodium diets.  I like to set a good example when I'm willing and able.  Sunday night, I enjoyed a ricotta and chive frittata with potato salad.  AKA, girl food because Ben was out for the night.

Bottom Left:  On Sunday night, Ben and I were both completing the drafts for our Fantasy Football Leagues.  Years ago, when I first started dating Ben, I really didn't understand what all the hoopla was about.  Fantasy football seemed kind of dumb.  Eight years later and married:  I still don't understand the hoopla. But what I do know is that it is kind of fun. And it gives you people to root for on Sundays if you're not that into football.  I'm running my work league this year.  Amazed at how far I've come.  

Bottom Right:  I volunteered at a health fair with NKF on Saturday.  More on that Wednesday.

Top Right:  It was so nice here in D.C.  I spent a few hours eating lunch and just hanging out at the Navy Memorial.  Before meeting up with my cousin for delicious Dim Sum.  

That was a lot to write.  I'm actually looking forward to writing a LFTW post that's like...one sentence.  This summer has been BIIIIIZZZZZZYYYYYY.  I kind of hate it, kind of like it. But I'm also kind of tired.  And kind of cranky.  Can you tell?

Anyways, in case you too need a reminder on this Monday morning (I know I do), take in Meredith's message.  God is with you today.  You WILL make it to Tuesday in one piece, and not wanting to kill your boss/coworker/child/person at the bank.

 

The Bib-bopsy

The day after Ben and I returned from our mini-moon in Sedona, I decided to revisit “Torture Tuesdays” and book my 90-day transplant biopsy at the hospital.  It wasn’t exactly 90 days after I received my new kidney, but close enough.  96 days.  Since we had to wake up pretty early to leave for our flight from Phoenix, it would have been nice to sleep in a bit.  But I remembered that I’d made this dumb decision to schedule an outpatient procedure.  The day of the appointment hadn’t even arrived and I was already kicking myself.  Ben was kicking me too because not only was my appointment scheduled for 9:30, but he was going to have to drive me there.  The pre-op rules and regs suggested I have a ride back home for safety reasons.  What kind of narcotics were they going to pump into my veins this time, I wondered.  Hopefully, Valium.  I love Valium.

I arrived at the hospital, checked in.  This was going to be my first appointment with my new name (Edwards-Ashman).  Sorry, probably didn’t need to include that part, but I’m a newlywed. Can you blame me? I get giddy about everything that has to do with marriage right now.  But I digress.  I checked in and waited.  And waited, and waited.  You see my nephrologist at the hospital is brilliant. Which means that sometimes…he’s on his own schedule.  Hey, I can’t be mad at him. 

My appointment was set to begin at 9:30.  I arrived at 9:10. I was seen at 10:30.  I watched a lot of HGTV, which I don’t mind right now because I’m finally taking steps to actually decorate my apartment.  What I learned: sconces are everything. 

I was called to the back, the back being the ultra-sound lab.  If you’re a dedicated reader of this blog, you’d know that this is my home away from home.  Oh, ultra-sound lab. I missed you.  “Hi, Dr. M*” I said. “Oh! Ohmygosh!”  He was checking his email on his phone, so it turns out I startled him. I scared the doctor. I sat on the ultra-sound table, waiting for things to begin. But first, it was storytime.  Dr. M regaled me with a tale, a news-tale, about school teacher who was caught giving steroids to teenage athletes, members of the wrestling team, football team, everything.  He was shocked.  I told him that in school, they made us watch videos about taking steroids.

The ultra-sound tech arrived and it was time to begin.  I lifted up my shirt, they covered me with paper, slathered my abdomen with warm (HALLELUJAH) ultra-sound gel and turned the machine on.  “There we go!” the doctor said.   I tilted my head to see what he and the tech saw. I wanted to see my dad’s kidney, to see what it was doing, and how it was behaving.  I looked at the screen.  Seriously, all I saw were black and white shapes dancing around on the screen like the colors in Fantasia.  I put my head back down.  Dr. M resumed his story about the steroids and the kids and the teacher.  “You know that reminds me of this show I’ve been watching about a chemistry teacher who cooks meth,” I said.  “Ohhhhh yeaaah!” the ultra sound tech chimed in. “That’s GOOD SHOW! Do you watch it?” he asked the doctor.  Dr. M said no and with curiosity asked us what it was about.  Before I could begin my explanation, he cautioned me that I was going to feel a little pinch with some burning.  And that’s when the screaming began. 

You see, I’m Ok with getting my blood drawn but not with shots.  Especially shots containing lidocaine.  That s*%t really does burn. “I want my mommy,” I muttered.  Just a few seconds after the doctor emptied the syringe into my abdomen, he pulled out a scalpel, waved it over my kidney while glancing at the ultra sound monitor. It was then that I assumed he was going to cut into my abdomen before I was completely numb.  And that’s when I, no joke, went bats%&* crazy.  I halfway sat up on the table, flapping my wrists back and forth, screaming “NO! NO!! WAIT!!! IT’S NOT NUMB YET! I’M NOT NUMB!”  The doctor laughed.  The tech laughed. I looked over at the tech to say, “WAIT! WAIT!! HE’S GONNA OPERATE ON ME WITHOUT ANESTHESIA!!”  At this point, all I could imagine was how the razor edge of the scalpel would feel like gliding across my skin, and I could only hope that it was so painful that I’d go into shock.

“It’s OK, it’s OK! Nothing’s going to happen? What’s wrong? Am I going to have to sedate you?” the doctor joked.

“Yes! Please! I want sedation! Please,” I begged.  The doctor laughed and raised the scalpel.  

“Look.” He pricked my stomach with the scalpel and made a tiny hole on top of where my dad’s kidney sat.  “See! That’s it.”  

I started to calm down, and return to my original position on the ultra-sound the table.  Through the hole on top of my skin, the doctor inserted another syringe with more anesthesia and deposited the liquid below the layers of tough skin and muscle.  Next, he pulled out another larger needle.  About the size of my forearm, I’d say.  Maybe a tad smaller.  This is how a biopsy is done:  a large needle is inserted into the organ.  After a few clicks, it snags a sample of the tissue, which the doctors test to make sure nothing is wrong with it.  The needle sunk into my abdomen. I could feel pressure mostly. It was like a thin tree branch was just hanging out in my kidney.  It was only there for a minute, then click click click, and the doctor slowly pulled the needle out.  He placed the tissue sample on a piece of glass and held it up for me to see. 

“Here.  See, it’s your kidney,” he said.  My kidney was all bloody and not much bigger than a strand of hair.  That’s the sample size.  Because they wanted to stop the bleeding in the organ immediately, the doctor put a lot of pressure on my kidney after the procedure.  It was then that I resumed my story about the chemistry teacher cooking meth.  This began with me asking my doctor how to cook meth.  We also talked about types of drugs that have methamphetamine in them. Then he and the tech took a long duct tape like bandage and wrapped it around my abdomen and the kidney, pulling it tight so that I couldn’t breathe.  I felt like The Mummy.  I had to wait for an hour after the procedure to make sure I didn’t have a fever, and to allow my blood pressure to stabilize.  

While I waited on the hospital bed amid all the beeps and boops of vital measuring machines nearby, I thought about what I hope, wish, and want to happen with this biopsy.  I want it to come out normal. I want to have normal kidney function.  I want to continue feeling great every day.  Really the only problems I've had since the transplant is that I can't get myself to go to bed early, so I'm always sleepy in the morning.  BUT, I've survived for 4 months without coffee.  That's saying something.  

I hope there's no more FSGS, or no resurgence of any.  That's why I had to have a kidney transplant in the first place.

I hope to get some news that I'm at least doing something right.  I'm making an effort to take my medicine every day.  I cook all my meals, not just because it's cheaper, but also because it's healthier.  I'm drinking A LOT all the time.  I hope and pray that my efforts to protect my dad's investment into my life are enough.  I'm hoping for no more bad news.

I shuffled out of the ultra-sound after an hour of waiting.  Ben was meeting me at the hospital for lunch.  Three months ago, a 90-day biopsy seemed so far away.  Making this far means that I've made it through the first three months without a rejection episode, which is pretty swell.  Here's hoping I get another three months, three years, and, if I'm lucky, three decades with this kidney.  Here's hoping.


           "Don't lose hope. Understand? With hope you can always go on." -- Pope Francis

The Ramblings of a Transplant Patient-- Sticking to What Matters

After going through something like a kidney transplant, one would hope to emerge with a much different outlook on life, a brand new approach to dealing with complicated situations, and deeper appreciation for the things that really matter.  But our old selves do not disappear that easy.   While planning my wedding, it was easy to not throw a fit over the same things that would send some brides over the edge.  And it was easier for me to get over and accept the things that I could not change because of my situation.  Of course, I’d say, I don’t have any more money, because I have medical bills.  I don’t have time to worry about programs, because I’m in the hospital.  I don’t feel like getting stressed out over details that will end up stained, in the trash can, and forgotten, because my organs are failing.  

It’s much more difficult to remember those times when nothing mattered and walk down that same path of nonchalance when you’ve reached the mountain top of your struggles.  On the way up, all you care about is making it up there. Once you’re up there, everything else that you “should have” cared about begins to flood back into your thoughts.

I catch myself all the time, in these moments where I’m asking myself, “Why do I care about this?” Because you see, I know that life is short, and that there are things and people worth using thinking space and worrying space on.  It’s nice to say that I don’t put too much stock in many superficial things, now that I've experienced having someone else's kidney put into my body in order to survey, but I’m not going to lie.  I’m human, and I still get caught up into giving two sh&*s about stuff that doesn’t deserve it.  I still care about—

Being accepted, something I’ve struggled with since I was five-years old.  Even though I moved around a lot growing up, I wasn’t that good at making friends.  I attribute it to some combination of me being weird, smelly, quiet, and, quite possibly, a bitch.  Why do I care about this?

“The Joneses.”  I couldn’t find anything else to describe the feeling of wanting to have it all and to keep up with the people who do.  I’m not big on material things really.  Ben and I JUST started incorporating buying clothing into our budgets, and I could stand to replace all if not most of my make-up.  It’s more about reaching goals.  Seeing the most sights, buying a house, or having the most fun doing whatever I’m doing. Why do I care about this?

What Having a Kidney Transplant Taught Me About Acceptance:

--that I am weird, smelly, quiet, and most definitely a bitch…sometimes. 

--that I don’t need 50 sometime friends; just one always friend who will visit in the hospital. Or call to say they’re thinking about you.

--life’s too short to pretend to be something you’re not…or to pretend to like something you don’t…or to try to fit in with people who just don’t get that you’re weird or smelly or quiet or a bitch sometimes. 

--life’s too short to not spend as much time as possible with the people who really truly get you.

What Having a Kidney Transplant Taught Me About The Joneses:
--I shouldn't compare myself to others. I have no idea what someone else's journey in life is.

I know that change takes time, no matter what you've gone through.  It takes weeks, months, sometimes years to realize what lessons you could have learned from any experience.  Not all of our inner demons disappear when a part of ourselves is replaced with something else.   Not all of our insecurities run scared when faced with death.  But I guess the difference is now, I know better.  And when you know better, you tend to do better, think better, and act better...when you remember.

Living for the Weekend--Food, Cars, and Shows

From D.C. to N.Y.

 

 

It was another busy summer weekend for the Ashmans.   But that seems to really be the theme of the summer.  Ever since the wedding, it's kind of been all systems go for us.  I love love LOVE summer. It's my favorite season of the year. I still get pissed off when I see commercials for back-to-school clothes...even though I've been out of school for four years already.  BUT, there's a small part of me that's looking forward to fall.  Looking at my September and October schedules it's kind of a relief to not have anything planned for a while.   

• Top Left and Right/bottom Left:  I'd been feeling kind of down lately and as much as Ben, the great husband that he is, tried to pick me back up, it just wasn't working. Luckily, the next best thing to a husband is two wonderful sisters. We got together to hang out at the food truck festival in D.C. then ended the night on the stairs of one of my [new] favorite thinking spots--the Masonic Temple in Old Town Alexandria.  A Friday outing with them was just what I needed before...
• Bottom Right:  Spending a day and a half with alllll of Ben's best friends. For good cause though:  the guy who sang at our wedding was performing at a show in New York!  He did an awesome job and the "story" of "Storyville" is actually pretty intriguing.  There was lots of interracial love in this play, specifically of the white and black variety, which I was loving of course.

18 Pills

My eyelids began to part, gradually letting in the Sedona afternoon sunlight from the windows of our hotel room.  I opened them and closed them, again and again, caught in the limbo of "I want to get up and get ready for our trip to the Grand Canyon" and "I want to stay here beside him with cool air from the fan washing over us."  We were already so behind schedule so I forced myself to continue blinking faster to convince my body that it was awake.

I started to get dressed in a new set of clothes, just right for a trip to the Grand Canyon's rim at sunset and for setting up camp at our site.   Ben's eyes began to flutter open too. We exchanged "Heys" and smiled at each other, knowing that we were behind schedule and that he needed to get moving too.  He moved towards the bathroom and I started to pack up what we needed.  

I ran through my checklist in my mind.  Tent--in the rental car.  Sleeping bags--in the rental car.  S'mores materials--picking up on the way.  I continued checking off items, deodorant, sunscreen, extra socks.  Then I started to pack up my pills for the overnight.  I grabbed each pill bottle, one by one I emptied out a batch of pills into my hand, and counted off the necessary amount to deposit into my pill box.  I picked up the bottle of Tacrolimus, one of the medicines I take to keep my body from rejecting my dad's kidney.  I need to take 12 of those pills a day, six in the morning and six at night.  I counted out enough to take before bed at the canyon, then enough to take in the morning before we hiked into the canyon.  But, something appeared to be off.  I counted out six more pills, enough to take the night that we returned from the canyon.  Then I realized, I was only able to count out two more pills.  I needed 18 more Tacrolimus pills in order to have enough for the remainder of my trip.

I felt a wave of disbelief wash over me.  I held the two pills in my hand, rubbing them between my fingers, trying to think of what I could have done wrong.    I closed my eyes and envisioned my black medicine tote bag, sitting at home on my bedroom floor, filled with 10 extra bottles of Tacrolimus. Dammit.  I rubbed the two pills in my hand again before thrusting them back into the bottle. 

My first airplane trip since the transplant, and I'd f*&cked up.

I didn't pack enough medicine.  

I just had a kidney transplant, I'm on the other side of the country, in a time zone three hours behind....and I didn't pack enough of the the most important medicine that I need to take. 

Ben emerged from the bathroom.  "I'm an idiot," I said.  "I don't have enough medicine."  Ben's face went blank.  He asked me if I was sure, and I said yes.  He stared up at the ceiling, trying to come up with a solution.  "Well...this isn't ideal...but it's ok.  Just call your transplant nurse to see if they can give you a short term supply."  

Despite him telling me this, and despite it being the most logical solution to our problem, I didn't want to do it.  All I could think about was how my dad gave me this precious gift of life, and how in a matter of days I could be back where I was three months ago--sick, no kidney function, waiting for a transplant, and on dialysis.  I was so scared at the thought of this, that I felt like I was going to throw up.  

Ben tried to snap me out of it.  Reminding me that I still had enough for our road trip and that I could call the coordinator on the way to the Grand Canyon or when we returned.  So we loaded our stuff into the rental car and set out on a two our trip to the national park.  We were taking pictures, laughing, listening to music, recording stuff.  Having a great time.  Then I'd pause and say, "I'm so dumb. I can't believe I did this."  

"Why don't you call your nurse now?  That might make you feel better," Ben offered. I didn't really want to call my nurse.  Not because I didn't want medicine, but because I didn't want to feel more incompetent than I felt at that moment.  But I had to face it--I was stupid for not packing enough medicine. I should have counted out the pills ahead of time, instead of just grabbing a random bottle and stuffing it into my carry-on.  I should have been more responsible. I should have planned ahead.  

I shouldn't have been so f*%king DUMB.

My phone rang.  "Yes, this is Jewel," I answered. It was the on-call nurse.  "Um yeah, I am on vacation....and....I don't have enough Tacrolimus.  I have enough through Sunday night, but I don't have enough for Tuesday.  We're going home on Tuesday.  Where am I?  Ummm...I'm in Arizona.  But we're going home on Tuesday!"  I knew she'd probably dealt with this a ton of times--patients forgetting their medicine--but I still felt judged. It was mostly me judging myself.  And I needed it.  Sometimes we need a good dose of self judgement to keep us from making the same mistake over and over again.

I hung up the phone.  "Well, she's going to refill it,"  I said.  Ben nodded.  "Good," he said, and he grabbed my hand.  "Now, can we go back to enjoying our honeymoon?"

"Sure."  I smiled, Ben kept driving.  We were an hour away from the Grand Canyon, and I felt relieved and grateful. 

Answering the question I get at least five times a day

So... how's married life? 

Married life is

eating too many cookies after dinner and feeling sick then asking Ben to rub my tummy.  

a birthday cake from scratch.

television.  Finding two shows that we love watching together.  Remembering that I hate watching that one channel with all the movies that only guys would like.

brushing our teeth, then taking my blood pressure, and taking my temperature, and taking my meds, and Ben turning on the fan, and setting an alarm on his phone. And Ben stealing my pillow until I turn off the light. And me trying to wrestle him for it, and not turning off the light.  Then turning off the light.  Then me getting up to crank up the A.C. because we're both sweaty from wrestling.  

money. Learning what we have together. What we spend together. What we can save together.  What we need. What we want. 

food.  Eating every meal together, at home, because we would rather go to Greece than go to Applebee's for the 800th time. We like Applebee's.  But something tells us, we might like Greece more. 

sleeping.  On my side then on his side, then Ben waking up and pushing me toward my side. Then me finding my way back to his side, getting hot, and trying to return to my side only to find that the cat is sleeping on my pillow.

bad days at work or an argument at home.  

good days at work and great days at home. 

playing video games in the bedroom while I sleep and the cat sits in his climber, because we just want to be in the same room as each other.  

asking each other repeatedly, "Why is the cat so small?"

asking each other repeatedly, "Where is the cat?"

asking each other repeatedly, "Why is the cat so cute?!" and never getting tired of it.  

admitting that we might need to spend a day apart because we've been spending a lot of time together.

spending that day apart and admitting that we missed each other.

even numbers on the volume levels for the television and the radio.  

keeping a cat alive but managing to kill the plant that was at our rehearsal dinner.

wearing wedding bands.

making decisions together.

visiting model homes together and wishing we lived there.

visiting our families.

having competitions to see who can say "husband" or "wife" the most in conversation.

feeling like we know everything about each other, and `being surprised to find out we don't.

feeling close to each other, and continuing to grow closer to each other each day.  

annoying each other;

but admitting that we're each others' most favorite people in the world.

not listening to each other;

and then talking until 1 A.M. in bed before falling asleep...on a weeknight, when Ben has to be awake at 5:45.

wondering what type of parents we'll be.

wondering type of life we'll have.  

knowing life is not and will never be perfect.

agreeing that things are perfect for us right now.

Married life is our life.  

Married life is great.  

Married life is also pretending to like a sports team together to get autographs at training camp.

Developments

"We write to remember our nows later."

Terri Guillemets

New Blog Posts

Wednesday

Biopsy Day

New Blog Posts

Aug. 14

Living for...

"As you wait for better days, 

don't forget to enjoy today,

 in case they've already started." 

Robert Brault

Gone Travelin'

Back Aug. 14