Monday, January 15, 2018

A Wonderful Weekend ... Derailed By the Hangries ...

So, after my surgery in September, the nurse talked to me extensively about the medication I would need to take post-transplant.  Each morning, I take twelve pills ... each evening I take around seven.   I can tell you the names and purpose of each one ... some I can even tell you the dosage.  Eventually, they will wean me down off of most (or some) of those drugs ... but three of them I will take for the life of my new kidney.

Those drugs are Mycophenolate, Tacrolimus, and Prednisone.   Mycophenolate and Tacrolimus are both immune suppressants that keep my immune system from attacking the new kidney.  Prenisone?  Well, everyone knows what Prenisone is, right?

In one of my clinic visits after the surgery, the nurse sat me down and said, "You know how there's a freshman fifteen?"  "Yes, of course."  "Well, there's also a transplant twenty.  It's going to happen.  You will gain twenty pounds.  Expect it.  Prednisone is hard on your body and it will cause mood swings and insomnia and exhaustion and weight gain."

Mood swings?   Maybe.  I was definitely crabby yesterday which could either be Prenisone or the fact that I was super tired for some weird reason.  Insomnia.  Definitely in the beginning.  After the surgery, it would be impossible to sleep.  I would wander the house ... watch television ... read a book.  Whatever.  Anything to kill time until I finally collapsed into unconsciousness.  Now that they've lowered the dose, that problem is much, much better.

Now the weight gain?   Okay, first, I haven't had any weight gain yet.  I'm four months out and I'm actually about two pounds less than I was before the surgery.   I've been three or four pounds lower than this even ... and it was a glorious number to see on the scale ... but that was during the flu outbreak when I didn't eat anything but crackers for three days ... so we're not going to count that glorious number.

I have had what I call Prenisone moments.  Moments where food is like gravity ... a constant, mind-numbing, pulling sensation that draws you to anything edible.  When I was on a large dose of Prenisone right after the surgery, this happened almost daily.  Usually after my Mom left and before Stoney got home ... or during those insomnia moments when I would wander through the house like a homeless, chubby ghost.

But I found that if I made an effort to recognize that moment.  "This is NOT real.  This is JUST the Prednisone."  That seemed to help.  But that wasn't all.  The second step was to tell myself, "You can have ANYTHING you want.  But you have to decide WHAT you want.   You can't just graze ... you have to pick ONE thing."  So usually I'd spend an hour or so wandering in and out of the kitchen.  Opening the fridge.  Closing the fridge.  Opening the cabinets.  Closing the cabinets.  Then finally deciding a box of animal crackers was the ONE GODDAMN THING I WANTED.  And nine out of ten times I was happy.

So I've avoided the transplant twenty so far.  Then yesterday happened.

I can't explain it.  I don't have an excuse.  I woke up exhausted.  I mean utterly exhausted.  I haven't felt that way in a long time.   Maybe it's because we went to the Hoogland Arts Center on Friday night and stayed out late?  I just don't know.  But I was exhausted and cranky.   Everything irritated me.  I wanted to do three things ... eat, sleep, and generally be left alone.

Stoney made homemade skillet queso dip.  Which I ate.  Stoney made homemade bread.  Which I ate.  Stoney made homemade beef vegetable soup.  Which I ate.  I ate pretzels and cream cheese.  And a sandwich.  And some random cheese.  And I drank milk.  ALL THE MILK.  And I ate leftover Christmas candy.  Like a random box of Nerds that was laying around on the kitchen table.  And more bread.  With butter.  And then I drank some of Stoney's grape drink.

It was around 6:00 that it hit me.  I realized that I was having a Prednisone moment.  Fuck that ... I was having a Prednisone DAY.   At that point, I had NO idea how many calories I'd consumed but it was in the high four figures.   Around 7:30, Stoney said he was going to get up and get a snack and asked if I wanted anything.  I explained that something was going on ... and that I had to stop with the binging.   He was so helpful.  He even stopped me from getting up about 8:45 and making one of those coffee cup microwave cake things ... because I had a soul crushing desire for cake.  But we held that monster back.

I woke up and was only about a half pound heavier than the day before.  I weigh myself daily because of the whole new kidney/urine output thing ... so I expected a change.   At least I didn't break the scale ... which I was fully expecting.  Today wasn't as bad.  I think because I recognized the issue.  I've totally been in control today ... at least so far.

I'm sorry to Stoney for being such a grouch yesterday.  I was tired and I was abnormally and constantly hangry ... but no excuses.  I love you and you're an amazing partner.   Thank you for the wonderful weekend and for date night and for a dinner out and a show at the Hoogland.  And of course thank you for making homemade bread and homemade queso and homemade beef vegetable soup!   It was delicious ... no ragrats!  (Well, not many ...)

Ah, but when that clock strikes midnight
And I'm all by myself
I work that combination
On my secret hideaway shelf
And I pull out some Fritos corn chips
Dr Pepper and an ole Moon Pie
Then I sit back in glorious expectation
Of a genuine junk food high

Larry Groce - Junk Food Junkie

Friday, January 05, 2018

Swear Jar Specifics ...

My husband, who is a very well spoken man, has decided, with several of his co-workers, to stop cursing as a New Year's Resolution.   They created a swear jar at work and drop a quarter in the jar every time they let a piece of profanity fly.   We just talked about it last night ... what exactly constitutes profanity?

Sure, there's the obvious choices.  George Carlin's "Seven Words You Can't Say on TV" is a good place to start.  But it gets sketchy from there.   I got home from work, stretched out on the floor, and began quizzing Stoney about what would trigger a contribution to the swear jar.

Me:  Shit?
Him:  Yup
Me:   Hell?
Him:  Yup
Me:  Wait ... Hell?
Him:  Yup
Me:  As in ... hell, no!
Him:  Yup
Me:  Well, that's fucking stupid.
Him:  Are you being ironic?
Me:  Fuck, no!

(I'm a smart ass, obviously.   The conversation continued.)

Me:  But what about other swear words?
Him:  Like what?
Me:   Blowjob
Him:  Blowjob?
Me:   Blowjob
Him:  What POSSIBLE conversation would we have
where the word blow job would come up in an office setting?
Me:   Hahaha ... come up ... (snort)

I love our adult conversations ...

You're standin' to close what the fuck's with you
You ain't my old lady and you ain't a tattoo
No need to whimper no need to shout
This party s over so get the fuck out
Get the fuck out

Skid Row - Get the Fuck Out

Friday, December 29, 2017

An Embarrassment of Riches ...

It's that time of year.  The time of year when we all make New Year's resolutions ... and then inevitably throw our hands up in submission by March of the following year.

For years, I refused to participate in them.  I railed against them here and here and here and, would you believe, for the very first time back in 2005, here.

So, I guess we could sit and dissect what it meant about my mental or emotional state for all those years that I wasn't even willing to entertain the idea of resolutions.  But that ship has long sailed and I would rather think about the way things are now.   I'd rather think about what it says that I'm thinking positively about the future ... about what positive changes I could make in the next year.

Next year, my big resolution is regarding my health.  I want to have my native kidneys removed.  Since my transplanted kidney is flourishing and my native kidneys are enormous and painful, I want nothing more than to have them gone.  The surgeon said he would remove them after a year and I quickly told him that he would be seeing me. 

But we realistically have to look at the big picture.

As my kidneys have gotten larger (and larger and larger), they've pressed against everything.  The issue with Polycystic Kidney Disease patients is that your body begins to depend less on your core muscles and more on the actual kidneys themselves to hold up your body.  It weakens your spine and stomach muscles.  So ... if the crux of native kidney removal is to eliminate pain ... pain itself may not be fixed by removing the native kidneys.   Yes, the pain from breaking cysts and the pushing against nerves and other organs will be gone ... but at that point you'll have pain from your spine and stomach muscles having to work for the first time in decades.

So what's the solution?

Start working on your core muscles so they're at least a little stronger before you have the surgery.  Again, this is tricky.   PKD patients are very susceptible to hernias and you have to be careful not to overly strain the stomach muscles.   But hey ... we have to start somewhere.  I think yoga would be the best place to start.  I'd need to find an easy, beginner class ... but I think it's a good first step.

I also want to build up to using our exercise bicycle regularly.   I'm sure in the beginning I couldn't do it for long ... but I think I could build up stamina in time.  Again ... we have to start somewhere, right?  Especially if the end goal is to get these monsters out of my body.

On a fun side ... I want to see one movie a month with Stoney at the theatre.   That resolution is hard because there isn't always a "must see" movie ... but hey ... we'll just have to get creative.  I'm also going to try to read one book a month.  I love to read ... but the stack of books on our headboard is getting enormous.  I've started each one of them and then got a new book and started the cycle again.  Gotta fix that!

It's almost here ... a brand new year.   A new kidney ... a new life without dialysis ... and a new year with my new husband.   I'm not sure what else I could ask for ...

We drank a toast to innocence
We drank a toast to time
And reliving in our eloquence
Another auld lang syne

Dan Fogelberg - Same Old Lang Syne 

Thursday, December 28, 2017

Happy Birthday, Stoney!

Happy Birthday to my wonderful husband, Stoney!

You're my best friend, my lover, my confidant, and my cookie. You're everything I could ever wish for in a partner ... and there's not a single day I wake up and not be thankful that I get to spend another day with you.

I love you more than you'll ever know!   Happy birthday and many, many, many more!

Hope I didn't spoil your birthday
I'm not acting like a lady
So I'll close this note to you with good luck and wishes too
Happy, happy birthday, baby

Dale and Grace - Happy, Happy Birthday Baby

Wednesday, December 27, 2017

How I Wound Up Crying On Christmas ...

As Donkey, on "Shrek the Halls" always says, "Christmas ain't Christmas until somebody's crying."

Christmas is an emotionally stressful time for me.  I could go into the reasons why ... it started back when I was a teenager and continued on ever since.   But it doesn't really matter why.   What matters is that I dread each and every holiday of the year and have reoccurring nightmares specifically about Christmas.

These nightmares usually involve me realizing that it's Christmas Eve (or a birthday or anniversary) and I realize that I don't have any presents.  So I'm driving around trying to find something special for someone.  I inevitably find myself at Walgreens or Lowe's ... looking at bandaids or plumbing supplies ... in a cold sweat because I know I'm about to ruin Christmas.

I am not lying, people ... I have these dreams before every single holiday.

Before Easter I'm dreaming that I've forgotten to buy a ham and everyone is coming over.   Before Thanksgiving, I've lost the turkey.   Before St. Patrick's Day, I've forgotten to buy any corned beef.   I'm telling you ... it's either presents or food.   Before a holiday, I'm panicking about one of those two things.

In the case of this year, I had my transplant at the end of September and was on short term disability for six weeks.  I'm blessed that my work offers short term disability insurance so I didn't go completely without income.  But you do have to go one week without pay before the 70% rule kicks in.   My first "whole" paycheck was the second week of December.   I had bought a handful of things in November ... but still ... I was at a constant, low grade panic for most of November and December.

Still, by the time it was over, I think I did a fair job.   No one had an opulent Christmas this year.   But I was able to get the girls each one gift card and one smaller present.   My mom got the one item she specifically wanted.   Stoney mainly got games and a book ... oh, and some clothes but only because he gave me his Kohl's points.  Let's not lie to ourselves ... that means he bought himself clothes ... but he was kind enough to be gracious about the situation.

I tried to tell myself that what I pulled together was enough.  It would have to be, right?  Years and years ago, when my family was low on money and short on food, my great grandmother used to tell my grandmother, "Don't worry, Milly ... they'll stop eating when they hit plate."  So I told myself, "Don't worry, Thirty ... they'll stop unwrapping when they hit carpet."

And things went well.  At least I felt like things went well.  I felt guilty about the Kohl's points thing ... but aside from that, I felt pretty calm about the situation.   We had our Christmas with the girls and they were all kind about their gifts ... I'd told them ahead of time this wasn't a great year ... and no one acted disappointed.  (Thank you for that, by the way.)   Mom loved hers ... which I wasn't worried about since she'd only wanted one thing and received that one thing.  I mean, it's hard to miss the bullseye with that kind of request.

Christmas morning, Stoney woke me up and we opened our stockings and our presents.  His gifts to me were obviously nicer ... I mean, the gifts in my stocking were worth more than what I gave him all together.  But again, I thought it was alright.   When it was all over, he went in the kitchen to make breakfast and asked me to put a couple boxes down in the basement for safe keeping.

When I opened the basement door, I saw something in the shadows.  I turned the light on ... and there was a wrapped gift ... along with another beautiful stocking.   I picked them up and took them to the living room with Stoney following.   There was a card in the stocking that said, "From Santa to Jackie Kidney - Ho Ho Ho!"   My hands were shaking when I opened everything.   There were gift cards to my two favorite restaurants ... with a note that said, "Dear Jackie - Now you can take Stoney and Thirty out to dinner!  Merry Christmas, Love, Santa!"

I went over to hug Stoney and started crying.   The whole kidney transplant thing is still such a big thing to me.   I don't know that I've processed it all fully ... it really is a lot to think about.   My whole family recognized Jackie this year ... she was listed on our Christmas cards ... both from and to us ... we talked about her at every get together ... College One gave me a little sculpture of Jackie complete with pill box hat, pearls, and sunglasses ... and Stoney's family even talked about her celebrating her first Christmas.   So to find Stoney had made a stocking for her ... that was the cherry on a happiness sundae that I could no longer contain.

He stood their and hugged me while I blubbered.  

It doesn't matter how long I live ... I won't be able to do anything that special for him.

I wish I could tell my donor's husband how loved his gift was ... how much his wife is thought of and appreciated.   Maybe we'll meet him this year ... I'm friends with her friends and it's been discussed.   I haven't reached out because it's only been three months ... and this is his first Christmas without his wife.  No matter how happy I am, I'm sure he is still grieving.

In any case ... Christmas must be Christmas ... because someone was crying.   But in our house, they were tears of happiness.

I see your smilin' face
Like I never seen before
Even though I love ya madly
It seems I love you more
And little cards you give me
Will touch my heart for sure
All these things and more, darling
That's what Christmas means to me my love

Stevie Wonder - What Christmas Means To Me

Monday, December 18, 2017

Life's Little Lessons

It's a little over a month since my last post.  Nothing tragic or catastrophic has happened ... although I will admit that I've learned a lesson.

When you are first transplanted, the team drills into your head all the precautions you should take to keep your new organ safe.   You don't put fresh flowers in your home.   You don't eat off of buffets or from open, shared food.   You avoid public places.  You don't hug. 

Anyone who knows me will realize that last one was hard for me ...

But in the beginning, I was cautious.  I wore my mask when out.   I made sure to use a sanitizing wipe on shopping carts.  I kept my distance from anyone with so much as a sniffle.  I was very aware of my surroundings and that I needed to be as careful as possible since I was on immune suppressants.

But it's easy to get complacent ... and I did.   I didn't wear my mask anymore and I started to take my health for granted.  In just under three months, I started thinking my immune system was just fine.  Sure, it was "suppressed" ... but I was woman.  Hear me roar!

And so, I didn't bat an eye when we went to Stoney's work Christmas party.  I didn't bat an eye when I hugged a dozen or more people.  I didn't bat an eye when I made a plate with all the delicious holiday food.  It was a fabulous night and we both had a lot of fun.

Until 48 hours later on Friday afternoon ... when I developed a fever.   Poor Stoney ... happy holiday, huh?   All our Christmas plans and schemes fell apart as I laid in a stupor of NyQuil and Benadryl.  By Sunday morning, my fever was high enough that we couldn't wait any longer.  He drove me to the ER and I tested positive for Influenza A. 

Tests showed my kidney was doing fine ... other than some dehydration.  They gave me Tamiflu and said at best I would have a couple days of high fevers and sickness ... but overall it lasted 5-10 days.  Stoney took such wonderful care of me ... even working from home that Monday when my fever was around 102.  And they were right on the timing ... even after the fever and aches went away, I then immediately switched to vomiting and diarrhea for several days more.

This weekend I was finally well enough to have the girls over for our Christmas celebration.  We had a great day ... and joked about being happily surprised that everyone got together in the same room while still in the month of December!

It was a small bump in the road ... but last week was a sober reminder that it's only been a few months.  It seems like I've had Jackie Kidney forever ... but she's still new.   So I'll be better about my mask and using hand sanitizer ... and I'll probably miss Christmas Eve mass this year.   But it's a small price to pay for a life changing gift.

I wanna jump, but I'm afraid I'll fall
I wanna holler, but the joint's too small
Young man rhythm's got a hold of me, too
I got the rockin' pneumonia and the boogie woogie flu 

Johnny Rivers - Rockin' Pneumonia

Monday, November 13, 2017

Why Didn't I Drive Myself?

I took a lot of wrong roads to get me to where I am today.   I must've made the right turn at some point ... because I'm with someone who makes me smile every day ... someone I love with all my heart and soul.  I wish I could go back and change some of the stupid decisions I made.  But if those decisions brought me to the man who kisses me every morning ... and loves me, despite my innumerable flaws?  Then I'll take those bad decisions ... because they got me here.

So, in the spirit of Mike Judge's "Tales from Tour Bus" ... I give you ...

Tales from ThirtyWhat - Episode One:  Why Didn't I Drive Myself???

In my early 20's, I dated a man who was older than me.  Not crazy older ... eight years, I think?  Maybe ten.  Who knows ... and it doesn't really matter.   For some weird reason, I decided this was the guy.  Maybe because he was older?  I don't know.  We make stupid decisions when we're young.

I excused so much bad behavior ... because he was the guy.   His mom loved me ... I mean she loved me.  She'd call me and ask for Christmas present suggestions ... always ask him to bring me down with him when he came to visit ... requests that, in retrospect, must've really pissed him off.  

There were numerous red flags that I willfully ignored.  Mind games that were outright cruel.

For instance, he asked me to look at houses with him.   This baffled me.  Our relationship was on again/off again ... him breaking it off every few months whenever he said it felt we were "getting too serious."  So I was, understandably, confused at this invitation.  I asked him, "Why would you bring me along?  Why ask my opinion?"  He casually said, "Shouldn't you should have a say in where you're going to live."  Cue starry eyes.  I believed him.  What can I say?  I'm an idiot.

We easily toured at least a dozen properties ... and finally found one that clicked.  A big two story home in a neighborhood close to the park we always walked in.   It had so much natural woodwork and a big old-fashioned kitchen.  It even had a pool with a gorgeous deck.  He said something along the lines of, "I can see you here."  I believed him.  What can I say?  I really am an idiot.

But within a few days, hell, maybe within a few hours, he was backing off once again ... acting distant.  Our phone calls became less frequent ... our walks in the park sporadic.  I knew he was still talking to the realtor, so I finally told him on the phone, "Do me a favor.  Don't buy that house."  When he asked why, I said, "Because that's my house ... and if I'm not going to be in that house with you, I don't want you to get it."   He quietly said, "You're right ... that is your house."

Not only did he not buy it, he immediately stopped looking at houses all together.
Now, a normal, sane person would look at the situation, recognize the enormous statement this made and say fuck this shit.
Not me.

Why start now ... when there was a hundred different times I should've said fuck this. 

Like when he offered to buy me a whole new wardrobe if I lost weight.  Or when he took his sister on a vacation to the Bahamas and when I asked why he didn't ask me to go, his answer was, "I didn't think you'd feel comfortable on a beach."

But the straw that broke the camel's back was a trip to a music festival up in Milwaukee.   We met three of his friends in Chicago and drove up to the festival for the weekend.  It should've been so much fun.  Instead, he drank non-stop until he heckled Rob Schneider, threw up uncontrollably, and blacked out naked in the hotel bathroom.  We were sharing a room with his best friend, Mark.   Mark looked at me sadly and said, "I love him like a brother ... but you deserve better than this." 

And he was right.

The next morning, I went to the roof of the hotel and sat by the pool studying for a class I was taking.  He came up a couple hours later and apologized ... profusely.  I told him I was taking a train back to Illinois ... and that we were done.  He said he understood ... but that he would drive me home.  Couldn't I just spend one more day with him there?  I think his exact words were, "Don't embarrass me in front of my friends."  Even then, I remember thinking, "Passing out naked in front of the toilet ... so that Mark had to straddle you to piss?  That wasn't embarrassing?" 

But instead I said alright ... and I spent an awkward day with the guys, walking around the glorious city of Milwaukee, and continually asking myself ... why didn't I drive myself?"

And I wouldn't change a thing
I'd walk right back through the rain
Back to every broken heart
On the day that it was breaking
And I'd relive all the years
And be thankful for the tears
I've cried with every stumbled step
That led to you and got me here
Right here

Rascal Flats - Here

Saturday, November 04, 2017

A Modern Day Warrior Mean Mean Stride ...

So, we're a few days over six weeks from the kidney transplant ... and, so far, Jackie Kidney and I are both doing amazingly well

My creatinine level is holding steady at 1.4.  My immune suppressant levels have now reached what they think is "maximum absorption" ... and at this point, we'll slowly lower the dose of Tacrolimus over the next six months to a year.  My nephrologist says to remember that there is always a chance of rejection.   Even though, at six weeks, I feel like a new person ... there's always a chance of sickness or rejection.  Don't take chances.  Don't eat deli meat ... don't eat under cooked meat ...  never eat grapefruit.  You just don't take chances whether it's next month or next year.

The day to day things ... wow.  I wish I could my donor's husband and kids what their gift did for me.  I will tell you first that dialysis made things better.  Before hemodialysis, I was sleeping in my car at lunch, I was crawling through the week just so I could sleep 12 hours on the weekends, and I was also take 3 hour naps Saturday and Sunday.   Dialysis did make things better.

But ... having said that?

The last few months before my transplant had gotten bad.  Stoney did almost everything as far as the house went.  He loaded the dishwasher ... he emptied it.  He did the wash ... he dried it ... he folded it.  He made dinner ... he cleaned up.   Until I was outside of it, I didn't realize how bad things had gotten.  By the way, I'm so sorry, hon.  Thank you for everything you've done.  I'll make it up to you ... value added every single day! 

Now?   I can't describe all the change!  I'm doing the dishes ... I'm doing the laundry ... I'm folding clothes as soon as they're dry instead of running it through 3 or 4 cycles just so I don't have to mess with it.  I'm making dinner ... and looking new things up on Pinterest to try.  By the way?  Homemade au gratin potatoes are delicious.   Take that Betty Crocker!

Things aren't perfect ... but my only real complaint at the moment is that I'm having sleep issues.  Large doses of medication will do that to you ... especially long-term Prednisone.  Monday my Prednisone dose drops again ... this time down to the dose I'll keep for the rest of my life (or Jackie's life) ... so hopefully that will help.  Last night, I couldn't go to sleep until almost 1:30 a.m.  Not a HUGE issues for a Friday night/Saturday morning.  But a CATASTROPHIC issue next Monday when I start back to work full time.

I don't really have an answer for that ... other than to take a swig of Z-Quil about 8:00 every night.  But I suppose I'll do what needs to be done.  As far as the house and things go ... it's not like I have this overwhelming amount of energy ... although I do have more energy.  It's just this feeling of normalcy.   I bought frozen bread dough last week so I could make some "fresh" bread.  It was alright ... but today, I looked up a simple rustic country bread recipe to see how hard it would be to make actual fresh bread.  I can't really explain it ... other than this little voice in my head that is saying, "Let's DO this."

At the moment, my eyes are heavy.  Running all day on six hours of sleep is the culprit this time.  Before, if I'd fallen asleep at 1:30 a.m., I would've woken up around noon.  Now?  The medicine alarm on my phone goes off at 8 a.m. come rain or shine ... and happy or sad, awake or asleep, I'm getting up, taking my temp, blood pressure, and weight ... and taking those 12 pills.

There were several times over the last couple years, that I've broken down with Stoney and said, "I don't want to do this."  I said it before my fistula surgery ... I said it before my *second* fistula surgery ... I said it before I went to dialysis ... more than once.  And it wasn't a joke ... I didn't want to do those things.   I can honestly say, I haven't thought that once so far.   When my alarm goes off twice a day ... it's Rush's Tom Sawyer, by the way ... I don't think, "I don't want to do this."

I think ... "Let's do this."

And that's why birds do it
Bees do it
Even educated fleas do it
Let's do it
Let's fall in love
Cold Cape Cod clams
'Gainst their wish, do it
Even lazy jellyfish do it
Let's do it
Let's fall in love

Cole Porter - Let's Do It

Wednesday, October 18, 2017

Introducing ...

Exactly four weeks ago today, I got a second chance at life.  I received the most precious gift anyone can give you ... I received a kidney.   I've named her ... please say hello to Jacqueline Bouvier Kidney.  Jackie to her friends ...

Four weeks ago on a Tuesday, Stoney woke up to a text from one of my friends.  One of her best friends had a cardiac incident which left her on life support.  This person's husband decided to donate her organs ... so the Gift of Home representatives came to talk with them.  Before opening it up to the public, Gift of Hope gave her family the choice of designating someone to be tested.  Her family said they didn't know anyone ... but my friend was there.  She said, "Wait ... I know someone."  She texted us to ask if we were interested and Stoney sent back all my information.

We talked about it ... and approached it more as being grateful that someone thought of me.  After all, what's the chance of being a match with a perfect stranger, right?   And with that, Stoney and I got dressed and went to work.  I felt wistful ... nice to be remembered ... but a little sad that this would be another "close but no cigar" type of situation.

The Transplant Team called me around eleven and verified that I was the family's designated choice for testing.  They were starting the process.  The donor would be kept on life support for 24 hours while testing was done and things were set into motion.  They would call me but it would be several hours.   At five they called to say our blood types matched and that we were moving onto the next step ... antibody testing.  They see if your blood reacts to the donor's blood ... again, several hours worth of testing.  They told me to go to bed and relax.  We were cautiously optimistic ... but again, this was a long shot.

At four a.m., they called.  I was a match and was invited to meet them at the hospital.  This was happening.  They told us to take our time.  They were still getting things in motion but they were calling the ER and telling them to expect me.   Stoney took a shower ... I got my hospital bag ready and got dressed.  I called mom.  We all headed to the hospital ... and began the wait.

The Transplant Team brings you in early ... but it takes hours.   We were there around five a.m. ... they were starting the harvesting process at ten ... and my surgery was scheduled at two.  Nothing to eat or drink ... we all just sat in my room, watched tv, and waited.   My aunt came and waited with us ... and finally the time came.  We all went down to pre-op.

I'm not going to lie ... at this point, I was still privately thinking ... something is going to go wrong.  Either the kidney wouldn't be viable ... or at the last minute they would find my antibodies were reacting.  Something.  So as they wheeled me into the OR, I still wasn't sure that this was really happening.

But it happened!

I have a healthy kidney now.   My creatinine was over 8 before the surgery ... I'm now at 1.3.   I have no signs of rejection and they took my staples out last Friday.   If everything stays strong, I'll go back to work on November 1st.   Half days to begin with ... then full days after a week.  I'm tired but excited ... Jackie is strong and fierce and amazing!

I guess my only issue, at the moment, is fluid.  I went from strict fluid restrictions on dialysis to being told to drink a minimum of 2 liters per day.   That is insane.  Worse, my body doesn't want fluid.  Before on restrictions, I was always thirsty.  Now, drinking is difficult.  When I drink too fast, I feel like I'm choking.  I drink 4 oz per hour to fit in the 2 liters ... and even at that small amount, I feel bloated and "sloshing."  They say it will get better ... and I hope it will.

You may have also heard that people's taste change with an organ transplant.  And oddly enough, it's true.   I was addicted to soda.  I loved Cherry Coke with every fiber of my being.  When they told me cola was out due to the phosphorus, I switched to Mug Root Beer and drank it with wild abandon.  Now?  Soda is undrinkable.  It's too sweet ... and has an odd, bitter taste.  Stoney drinks a "Crystal-Lite" type of drink which I used to think was AWFUL.  Now?  It's tasty.

Overall, sweet things are FAR too sweet.  Splenda doesn't bother me any more ... so I am drinking Hint water.  Propel is too sweet but I can cut it with water.  Food ... sigh.  I used to love toasted ravioli ... it's alright but it has an odd taste as well.  Some of this may just be a post-operative kind of thing ... and it may change.  But the team says some of this may be permanent.  Our tastes change after transplant ... and soda just may be something I never want.  Who would ever thought that could happen?

Normally, the Wish for Hope people want the donors and recipients to stay separate.  No contact until they approve and mediate it.  But in this case, because of the way it came about, things were ... different.  We knew her name ... her family knows mine.   Things were posted on Facebook with both sides tagged.  I trusted Stoney to look her up on Facebook and tell me a little about her.  

After surgery, alone by myself one night in the hospital, I looked her up myself.  My donor's name was Connie ... she was a beautiful soul.  Everyone was so sad on Facebook ... commenting on how happy and loving she was.  She was a mother with a brand new grandbaby.   She was only a couple years older than me.  She had a beautiful smile.  She was an amazing cook ... which I hope rubs off on me.  She was full of love and joy ... and I feel so blessed that she lives on in me.

Her husband wants to meet us once I've recovered ... and it's the least I can do.  It's odd how many connections we have.  My aunt (my uncle's wife) is distantly related to Connie's family.  I work with a woman who is very involved in her church ... and her woman's group has several people who were good friend's of Connie's.   My co-worker texts me every week before their small group and I give her an update on how we're doing ... and assure them I'm doing everything to keep this kidney strong and healthy.  One of Stoney's co-workers went to school with her ... and he gives her updates as well.

There are down sides, of course.   Transplants require a lot of medication.  I take 12 pills every morning and about 8 every night.   That should go down in the months to come ... but there will always be a lot to take.   There are restrictions ... no buffets ... no deli meat ... nothing with grapefruit juice.   But these down sides are nothing compared to what I received.   No more dialysis ... no more needles ... no more horrible leg and foot cramps ... no more fluid restrictions ... no more binders before meals.

Most importantly, they've given me time with Stoney.  Yes, I have every night with him now instead of spending three evenings away from home at the clinic.  And that is beyond wonderful.  But the harsh truth is this ... the five year survival rate on dialysis is 60%.   That means forty percent of people don't survive five years.  Dialysis is hard on your heart ... hard on your other organs.   There's a reason you're instantly eligible for disability once you start dialysis ... it wears your body out.  Because of Connie's family's loving gift, I have a chance at a long life with Stoney ... and that's why we got married, after all.

My family is around me ... my Mom's taken such good care of me since I was home ... the girl are amazing and have visited and sent cards and texted ... all my aunts and uncles and cousins have been with us ... Stoney's family has sent flowers and called ... I feel loved and whole ... and more than a little tired.

It's time to rest again.  It's taken this long to have the energy to want to write this (loooong) post.  But I wanted to share ... and to encourage you all to sign up to be organ donors.  I know it's an unpleasant and difficult decision.  But please consider it ... you can give someone else a second chance at life.  It's the most amazing thing any of us can do ... or receive.

You came along just like a song
And brighten my day
Who would have believed 
That you were part of a dream
Now it all seems light years away
And now you know I can't smile without you
I can't smile without you
I can't laugh and I can't sing
I'm finding it hard to do anything
You see I feel sad when you're sad
I feel glad when you're glad
If you only knew what I'm going through
I just can't smile without you

Barry Manilow - Can't Smile Without You

Monday, September 18, 2017

Chicago Is Made For Lovers ...

Note:  I wrote this post last night during a dialysis session ... which I think may explain the "poor me" aspect of the story.  I'm sorry about that.  Unfortunately, it's all true ... but it is very much a pity party.   Some days are harder than others and I think we've discovered that when I get too tired (or overheated, etc.), I tend to get emotional.  Stoney deserves more credit than I can ever write here because he pushed himself to the limit this last month ... the whole roller coaster transplant thing, walking long distances to get the car up in Chicago, staying up late driving while I slept, etc.  So thank you again, hon.  You really are the "better" in the term "better half."  And now, back to our story. 

Do you know someone with a chronic disease?  You might ... and might not even know.  A lot of us look normal.  We look "relatively" healthy.  I wish I had a dollar for every time someone said, "But you don't LOOK sick!"

So, last weekend, we planned a trip to Chicago.  It wasn't anything heroic.  Stoney drove us to Joliet after my dialysis on Friday and we stayed at a nice hotel right off the highway.  The next morning, we visited Shedd Aquarium ... which is stunningly beautiful, by the way, if you haven't been.  I didn't touch the stingrays ... #NeverForget ... but, even still, the exhibits are gorgeous.

After a nice relaxing walk through the aquarium, we went to Portillos for lunch.  It was Stoney's first time ... and I think he enjoyed it.  Their Italian Beef is sooooooo delicious.  I've tried to watch what I eat because of the transplant list situation. But I'm not going to lie.  I was a little pig!  Other than the little piece I gave Stoney to try, I ate my entire sandwich ... and I would've licked the paper if we still weren't in the honeymoon stage. Hell, give me a couple more weeks of wedded bliss and I'll eat mine, his, and anyone else's in arm's reach!

With full bellies, we drove over to Miniature Moose's work to surprise her. Hah! Jokes on us ... she had the day off.  So I texted her a photo of her coworker selling us popcorn ... and we were off to the big event.  Cubs and Cards at Wrigley Field!   And who got the biggest surprise?  She was already at the park with her mom and aunt!  She came and found us and sat with us the first half of the game.  Stoney bought me frozen lemonade ... and Mini Moose shared it with me while the three of us cheered the Cubs.

Okay now.  Whoa.  Let's stop right there.   That's just not true.  My love is a Cards fan ... so he was a good sport ... sitting patiently while everyone around him lost their minds.  He deserves tickets to Busch Stadium as a reward for that kind of self control.

So ... that's what everyone knows.

What everyone doesn't know is that I fell apart.  Just that stuff up there?  That took more spoons than I had. Walking around Shedd's was perfectly fine (although we still had to sit and rest) ... but there was no way I could walk from the parking garage to Wrigley Field.  Stoney dropped me off and then walked by himself to find me in front of the gates.  There's no shade on Addison ... so by the time he got to me, I was overheated.

See, our kidneys regulate a lot of things besides urine.   Temperature, for example.  I was so very hot ... and exhausted.  Stoney got me to our seats and then went to the first aid station and got a cooling pack.  He got us water and frozen lemonade to cool my body down.  I tried to be as normal as I could in front of Mini Moose, but Stoney could tell things weren't right.  My legs buckled during the national anthem ... so I just leaned against Stoney and prayed the guy would just STOP singing.  And after Mini Moose went back to sit with her mom, I just leaned my head on Stoney's shoulder and tried to think cool thoughts.  Every once in a while there was a breeze and it was Heaven.

Stoney offered to leave just before the seventh inning stretch.   I'm aware that I should've said no.  I shouldn't have been so selfish ... it was his weekend too.  But I wanted to sit in our air conditioned car SO bad.  So I said yes and we headed out ... but we were in the same spot as before.  The parking garage was so far away.  So we walked as far as the police station ... just to get away from the Wrigley crowds.  Stoney sat me on bench just outside the precinct door with a fresh bottle of water and went to get the car and pick me up.

And as soon as he was gone, I started crying.  There was this heartbreaking combination of guilt for ruining the trip ... of frustration for not being able to do something as simple as walking to our car ... and sadness that I couldn't push any farther.  I sat there crying ... looking like a clinically depressed hobo.  And it hit me ...  "Pull yourself together.  You're outside a police station.  Someone is going to see you.  This is going to become a thing.  Stop it now."

And so I got it together.  Stoney picked me up and we headed out of town.  And I was relatively alright until we stopped for dinner at a McDonald's south of Joliet.  We were having a snack and talking about the day ... and I lost it all over again.  This time it was just the overwhelming guilt that NORMAL people can do this.  That Stoney was changing all this stuff because I couldn't make my body do what I wanted.

And here is where I tell you how great my husband is.  Not one single time did he say stop that ... or don't cry ... he just came to my side of the booth and held me.  He let me sob into his Cards jersey.  He said he knew it was frustrating ... but that it was alright.  He talked to me about the transplant team ... and how someday we could do it all.

And we sat together in a McDonald's booth outside of Joliet ... holding each other and ignoring everyone else around us.  He made me feel better ... like he always does.  I STILL feel guilty for not being able to be like everyone else.  I probably need therapy at this point.  But we had a good time when I wasn't a mess. And when I DO get that transplant, I'll make it up to him.

Portillo's is on me, hon ...

Six and three is nine
Nine and nine is eighteen
Look there brother baby
And see what I've seen

Baby don't you wanna go
Back to that same old place
Sweet home Chicago

Blues Brothers - Sweet Home Chicago

Thursday, September 14, 2017

Mellon Collie and the Infinite Sadness ...

So, just a little over a week ago, I got "the call."   Well ... not at first.  The transplant team called me on Tuesday the 5th around noon to tell me I was, once again, the backup.  Which was fine.  I didn't have a tingle ... nothing telling me that my life was about to change.  So I agreed to not eat or drink anything ... and I just kept on working.

On the drive home, they called back.  The surgeon wanted to talk to us.  He explained where the kidney was coming from ... a 19 year old girl.  He explained why it was available ... tragic car accident.  He explained that it was high risk kidney ... the "capsule" had been removed around it.   At the end of the call, he invited me to come to the hospital and meet with them.

And so we did.

At six o'clock pm, Stoney, my mom, and me all met at the hospital ER and let them know I was there for a transplant.  We told a few people ... mainly bosses and necessary co-workers.  We didn't want to leave anyone out ... but there's no guarantee that this was going to happen.  It's a long process.  It's a really long process.  They took us upstairs to my room and the tests began.  A chest-x-ray ... an EKG ... 15 vials of blood ... endless questions.  We sat there for almost four hours going through the hoops.   We met the surgeon and he was a pretty awesome guy.  He just sat down and relaxed ... and just talked to us.  We really liked him ... he seemed to really like us. 

And then it looked like it was going to happen.  Like it was really going to happen.

We put it on Facebook.  I got phone calls ... I talked to the girls ... more texts went out ... phone calls to various family members were made.  And at a little after 10:00, I said goodbye to my mom and Stoney ... and they wheeled me out the door and down to a prep room for the OR.  I can't describe the overwhelming amount of adrenaline that was going through me.  I was sitting alone in a wheel chair in the OR hallway ... pushing myself back and forth with my feet ... making a circle from one end of the hall to the other ... humming some song.  I must've looked maniacal.

They finally took me into the prep room and the anesthesiologist came in and placed my IV.  She gave me my first dose of anti-nausea medicine and was getting the "relaxation" shot ready.  That's when the word came back ... everyone hold up.   The surgeon was examining the kidney.   The nurses were overly cheerful and told me this was "completely normal."  They assured me that the surgeon always did this and things would begin shortly.  The anesthesiologist left.  No one had to tell me ... that was a bad sign.

The surgeon came in to tell me something horrible had happened.  Whoever harvested the organ had damaged it almost beyond repair.   He drew me a picture ... showing me the way the kidney SHOULD have arrived versus the way it HAD arrived.   It put a hand on my shoulder and told me was going back into the OR to try and make it usable.  Out in the hallway, I overheard a nurse nervously ask him if she should get my family.   He told her yes ... he didn't want me alone.   No one had to tell me ... that was also a bad sign.

And so Stoney and mom came in and I repeated what he'd told me ... unfortunately, without the aid of helpful drawings.   They hugged me and he we sat and waited.  And we waited.  And we waited.  And we waited.

Mom nervously talked.  Stoney held my hand.  The surgeon worked for two hours in the OR.  And when he finally came in, he looked utterly heartbroken.  He took out his drawing and showed everyone all over again.   Everything is fuzzy ... but I believe he told us, "I'm a surgeon and my hubris wants me to tell you I can do this.  I can make this work."  I told him whatever he thought was right ... I told him I trusted him. 

My mom spoke up.   She asked, "If you had a daughter, would you give her this organ?"

My surgeon paused paused.  He paused for a long time.  And, as Stoney says, that pause said it all.  When he finally spoke, he asked if dialysis was working for me.  Was I doing alright?  I said I was ... and he said, "I can put this kidney in ... but it has a two to five times greater risk of clotting.  If that happens, it's deadly and it has to come out.  Then we're starting this all over with you in a much weaker state."   By that time, it was after two o'clock ... and we called it. 

It was over.

They took me back upstairs to take out my IV and put my discharge papers together.  I probably owe everyone an apologize ... Stoney, Mom, and any nurse who saw me on the 5th Floor.  It was the middle of the night.  I hadn't had anything to eat or drink since noon.  My blood sugar was low ... I was exhausted ... and I just couldn't anymore.  We walked back out to the parking lot together.  A sad trio ... not talking much.  Stoney offered to buy me something from Hardees since they're open 24 hours ... he even offered just to get me a root beer.   But all I wanted was to go home.

I don't remember anything after that.  I don't remember getting home or walking in the door.  I don't remember getting undressed or texting my boss that I wouldn't be in.  All I remember is holding it together until I could crawl into bed ... and then just falling apart.  Stoney held me and rocked me and said every single thing I would want him to say ... and, in retrospect, he had to be hurting almost as bad as me.  It was a horrible night for everyone.   He was up for hours ... he didn't have dinner ... and, even if it had worked, he wouldn't have had a new kidney.  He was running on empty just as much as me.

But we held each other ... and you can only cry so much.  Eventually, around 3:30 in the morning, we just fell asleep.   And when I woke up, I was every bit as depressed as I was when we left the hospital.   We'd both taken the day off work ... which was good since I didn't even wake up until eleven o'clock.  I couldn't bear to get on Facebook.  I didn't even look at my text messages.  It didn't matter whether they were congratulations or messages of sympathy, I couldn't bear any of it.   So Stoney was my rock ... he talked to everyone.  His family ... my family ... our friends ... everyone.  He was social when I couldn't be.

Stoney offered to make something to eat ... and I asked if he would just take me to IHOP.   I got dressed.  I had bacon.  Which helped a little.  And as soon as we went home, I went back to bed.    I don't remember the rest of that day or night.  I don't know what I said to anyone or what I did.   I think I ignored everyone.

And so it's a little over a week later.  The melancholy has passed.   I think I'm back to the old me?   I'm going around making up stupid songs for everything I do so ... that's got to be a good sign.  

But now I'm dreading the next call.  I don't know whether I could go through that all again.  I don't want to go through all that again.  It's not just a matter of being the backup.   It was being outside the OR ... steps away from a new kidney ... and having that just pulled out from under you.  It's a horrible feeling.  I don't know if I've ever experienced anything like it.

But I guess when it's meant to be it will be.  That's what we tell ourselves, right?  

I'm not alone ... I've got the best person on the planet standing right next to me.  Everything's gonna be alright ... 

She feels safe now in this bar on Fairfax
And from the stage I can tell that
She can't let go and she can't relax
And just before she hangs her head to cry
I sing to her a lullaby
I sing
Everything's gonna be all right
Rockabye, rockabye
Everything's gonna be all right
Rockabye, rockabye
Shawn Mullins - Lullaby Lyrics

Thursday, August 17, 2017

You Bet I Do ...

One week ago tomorrow, I took the hand of my best friend in the world ... and became his wife.

I don't know what I expected of a courthouse wedding ... but this wasn't it.  First off, we were told we had the largest group of people the courthouse had seen in years.  The lobby was full ... the courtroom was full ... heck even the elevators were full!  And once we were done, we were standing around hugging and taking pictures ... when someone said, "Look out the window!"  About a dozen of our friends were standing down on the sidewalk, hooting and cheering and holding letters that spelled our names and congrats!

I expected the judge to be stoic ... but what he said was so heartfelt.  That we'd already found our soulmate ... this was just making it official.  We said vows surrounded by friends and family.  His parents, my mom, his brother and sister-in-law and nephew, my aunts and uncles, all three girls, and all our friends.  It was a beautiful day.  Everything I could've hoped for.  Oh ... and my ring is gorgeous.  Not that that kind of things matters but ... hey, my ring is brilliant!|

I can't say that I feel much different now.  I already loved Stoney to the moon and back down to the dirt ... this was just putting pen to paper and making it legal.  I could've lived with him forever and been perfectly happy ... but that's not the world we live in.  If something happens to me or him, the other person needs to be covered and in charge.  I think we're past the time when people couldn't visit other people in the hospital if they weren't family ... but still ... if anybody is going to be making decisions about me, I would want it to be him.

And even still ... I can't lie.  My heart sings whenever he kisses me on the head and calls me his wife. It's not just about the legality of things ... it's about making sure everyone knows that this is who you choose to be with ... this is your partner.  Stoney ... I'll spend my life doing everything I can to make you happy ... because you make me happy every single day.  I know every day won't be sunny ... there's bound to be some rain ... but as long as you're with me?  The world will be filled with rainbows and tacos!

Love is all around you, yeah
Love is knockin'
Outside your door
Waitin' for you
Is this love made just for two
Keep an open heart
And you'll find love again
I know

Doo doo doo doodoodoo
I know

Tesla - Love Song

Thursday, July 27, 2017

Hey, Baby ...

When I was young, I had a tendency to jump into things with both feet.  I was an adventurous soul ... which is a double-edged sword.  You have a lot of great stories to tell over drinks.  "... and THAT, my friends,  is how I ran Trent Reznor out of a bar in mid-town Manhattan!"  But you also have some dark things swimming around in your head that come up at the most inopportune times.

Everything we've done, both good and bad, builds us into the person we are today.  Each experiences adds another layer ... whether we want it to or not.  I feel like I have a thousand shiny, happy layers which has made me a happy, outgoing person overall.  But I've had things happen that made me deeply distrustful ... always inwardly cringing, expecting the other shoe to drop.  I was always an extrovert ... but honestly about five years ago, I became more introverted ... a little more suspicious ... and a lot more wary.

For two years now, Stoney and I have been planning on getting married.  We didn't have a date ... but he proposed with a ring and I always told people we were "working on it."  And I was.  In my head I was working towards getting comfortable with it.  It was never him.   He's always been a man you'd be lucky to get to marry.   It's just been me ... being scared.

See, I read this article years ago about how you shouldn't move into with someone until you've had a "knock-down drag out fight" ... so you'll have a glimpse at what the worst could be.  Well ... I drug my feet ... and we never had that fight ... and eventually I moved in anyway.   He proposed ... and I waited ... but we've never had that fight. 

This Christmas, we'll have been together five years ... and, while I know there have been times when I've irritated the piss out of him ... and, while I can't think of one off the top of my head, I'm sure he's irritated the piss out of me once or twice ... and I've kept waiting for the big bad to happen.  And it never did.

Nobody's perfect ... I can be lazy and messy at times ... Stoney can be pushy about said mess at times ... but I can't imagine anybody I'd rather spend my time with.   I love waking up on the weekends and going to find him ... I love going to sleep next to him ... I love cuddling in my spot ... I love laughing with him.  I still smile whenever my phone dings with a text from him.  He's my reason for doing for everything I do ... for hanging on when the cramping gets bad and the whole thing seems like more than I can bare.

He's been patiently waiting on me to be ready ... and I keep asking him, "Do you still want to marry me?" and he keeps surprising me and saying, "Yes."  

So let's do this, baby.   There's nothing that would make me happier ...

It's a beautiful night
We're looking for something dumb to do
Hey baby, I think I wanna marry you
Is it the look in your eyes,
Or is it this dancing juice
Who cares baby,
I think I wanna marry you

Bruno Mars - Marry You 

Thursday, July 13, 2017

The Second Call ... Who Does This?

So Monday morning, I was sitting at my desk with a new trainee.  We'd been talking about ten minutes ... barely getting started in the whole training process ... when my cell phone rang.

The Transplant Coordinator said she had an offer for me ... and here she hesitated ... "But I don't think this is the one for you.  This is a high risk kidney."

Now ... high risk can mean a lot of things.  When you first get on the transplant list, they ask if you would be interested in a high risk kidney.  They encourage you to say yes ... and tell you that, when the time comes, you can always say no without it being held against you.   About 10% of deceased donor kidneys are classified as high-risk for infection with HIV or with hepatitis B or C (HBV or HCV) based on CDC criteria.  To get tagged as high risk, the situation could be as serious as a drug user ... or as simple as just being a homosexual.

I told the coordinator that I was open minded ... to go ahead and give me the news.

A young 20 year-old man had just died of a heroin overdose.  They were offering me his kidney.  The kidney had been tested and already had decreased urine output and a higher than usual creatinine level.  She said it wasn't optimal ... but that legally she had to give me the choice.

I sighed and sat there shaking.  So much information in such a short period of time.  You're elated to be getting a call.  You're horrified that a young person just died of a heroin overdose.  You're sick to your stomach ... because you know you're going to have to say no.

The coordinator explained that I'm (relatively) young ... that I'm doing really well on hemo ... and that I haven't been hospitalized with issues yet.   She thought there was still time to get a better offer ... and I reluctantly agreed.  I hung up the phone so she could call the next name on the list ... and I walked calmly to the bathroom where I crumpled in a ball and cried.

I managed to text the news to Stoney ... who called me just as I was pulling myself together and walking back to my desk.  He comforted me and said it was alright ... but I think he sounded just as "gut punched" as me.   Neither of us sounded sure of what we'd chosen ... but he surprised me and picked me up for lunch so we could talk more about it.

He's held me and told me over and over it was the right decision ... and my nephrologist and mother have strenuously agreed.   But I feel so guilty.   I turned down a kidney.   A young person died and I turned down his kidney.  It's just so terrifying.  If he took any other kind of drugs I would've thought about it ... but heroin?  How do I know if he shared needles?  If he had unprotected sex?   The kidney tested negative for HIV and HEP ... but those things can be undetected for months.  So months after a transplant, when you're taking anti-rejection meds and have no immune system left ... you could find out you have HIV?   How horrific would that be?

I've even hesitated to write this here ... because I don't want anyone to read this and think, "Wow, ThirtyWhat is STUPID!"  Because, believe me, I think that enough myself.  

But this is where we are.  Second call received ... waiting on the "real call."  Third time's a charm?

Mr. Telephone man
There's something wrong with my line
When I dial my baby's number
I get a click every time
Mr. Telephone Man
There's something wrong with my line
When I dial my baby's number
I get a click every time

New Edition - Mr. Telephone Man

Monday, July 03, 2017

The First Call ... May It Not Be the Last ...

You really don't know how it's going to feel when you get that call.  I imagined it, sure.  But to hear the words ... "This is Mary from the Transplant Team" ... it's both thrilling and terrifying all at the same time.

When you hear those words you realize how little you are prepared to hear those words.   I had a vague idea that we'd get the call and then go to the hospital.  When the call came in the middle of the night on Friday, I sat there worrying over all the work that was on my desk ... things that needed to be mailed or invoiced or just generally sent out.  I didn't have a bag packed to go to the hospital.   I wasn't ready at all.

Luckily ... or unluckily depending on your point of view ... the call wasn't "for me" technically.  I was the backup ... an understudy.  They had an kidney ... and they had a person intended to get that kidney.  But if that person showed up to the hospital and had an issue ... a fever or too many white blood cells or whatever ... then the Transplant Team would call me back and we'd go in.  The call was to let me know not to eat or drink anything ... and, in general, just to be ready.  They said they would call back in the next five hours or so to let me know whether or not I was cleared.  It's like being called for jury duty ... only it could save your life.

The call came at 1:30 in the morning ... so it wasn't like I was about to order a pizza.  But I might've gotten up and drank some water or milk or something ... so that was good to know.  But the problem is that the last thing you feel like doing at that point, is going back to sleep.  If it weren't for Stoney, I don't know that I would've been the backup at all.  My phone was on vibrate ... and I slept through two calls.  It wasn't until they called Stoney's phone that he woke up and realized what was going on.  I woke up to see him standing by my side of the bed, holding my phone, and telling me, "Call them back, quick!"

It was a work night ... and Stoney had an important meeting in the morning and had to drive to St. Louis.  Now what?  There was no since in cancelling anything ... I was just the backup and probably wouldn't get called in.  But we did need to get some sleep to function the next day.   I think we laid awake for at least an hour ... talking about what we needed to do.  How happy we were both were.  And we talked about how many conflicting feelings you have.  You want to hope they call back and tell you to come in ... but then you're hoping that someone else doesn't get it.  You want to be happy that this is happening ... but you get to be happy because someone else is crying over the loss of their loved one.  It's a spaghetti bowl of emotion ... just a mess of happiness and sadness and confusion.

Since I'm getting ready to go to dialysis this afternoon, they obviously didn't need me.  Mary called around seven on Friday morning to let me know that I was cleared to go to work ... to have breakfast and relax.  The odd thing was that I wasn't really disappointed.  I was happy that someone's life had changed that morning.  And I was happy because this was a sign that we are close to getting the real call.

I know I've been melancholy on here lately ... and so I will tell you the other side of this story.  Getting the call gives you a dizzying happiness that words can't describe.  I ran on adrenaline all day.   I was beyond elated.  But that wears off.  Sitting there at dialysis Friday night, the crash afterwards was hard.  Because you realize how close you came to not having to sit in that fucking chair.  Worse yet, Friday night was hard ... I cramped until I cried ... and then I cried because I almost didn't have to do this anymore.  And that stays with you ... that feeling of loss.  That feeling of ... "I was so close."

I guess it's very similar to the stages of grief ... because you do swing back around.  I'm now in relatively zen space ... my time will come.  I just have to keep eating healthy and keep my cell phone ringer on.  We'll get the call ... and hopefully soon I'll be on here writing about my Prednisone moon face and what it's like to be on every anti-rejection medicine known to man.  Stoney will have funny stories to tell about me putting off pain medicine and then crying like a lunatic because there are stitches touching my skin. 

It's alright ... we have hope ... and that's something to hold onto.

And it just makes me wonder
Why so many lose, so few win
And give me something to believe in
If there's a Lord above
And give me something to believe in

Poison - Something To Believe In

Thursday, June 29, 2017

I'm So Sorry ...

The spoon theory is real.  And it's frustrating and disappointing that, most days, what I can do is extremely limited by the amount of energy I can muster.   I'm proud that I still work full time while doing dialysis ... so many people don't ... but that means a large slice of that daily pie has to go towards my job.  I'm afraid friends and family and fun suffer these days.

David Sedaris tells a story about how your life is like a stove.  You have four burners ... work, friends, family, and health.  To really be successful in one area, you have to turn off a burner ... sometimes even two.  To succeed in business, some people neglect friends ... or family.    In my case, two of these burners have to be on ... health and work.  My third burner, family, is on ... but they don't get the attention they should. 

Stoney gets all my love and attention ... but he's right there.  I just have to reach out to hug him or hold him or thank him for everything he does.  My mom ... I call her every day and try to make plans with her every couple weeks so that she feels loved.   The girls ... well, we text and talk all the time but I don't see them like I would like.  They have busy lives and, again, when they are free, I'm usually too exhausted to do anything after work.  Just last week, I wrote out a thoughtful note card to my aunt, replying to a note card she sent me ... in October of last year.  That's just unforgivable.  The friends burner is out ... and the family burner is flickering ...

I was invited to a bar tonight to celebrate a co-worker's new job ... and, although I originally said I would go, I just can't.  My body is aching and I want so bad to just lie down.  It helps so much to stretch out ... and I feel like a loser, but I don't feel social ... I feel like curling in a ball right now.  I've already taken one anti-nausa pill.  By five o'clock?   I'll just be focusing on getting home.

And so I apologize.  To everyone I miss ... everyone I don't get to see as often as I would like.  To our friends who are amazing and understanding.  To Stoney who doesn't get date nights as often as we used to ... to everyone who texts or Facebook messages me and doesn't get a text back for a day or two or five.  Sometimes, when you're at the end of the day, there just aren't any extra spoons.

I hurt myself today
To see if I still feel
I focus on the pain
The only thing that's real
The needle tears a hole
The old familiar sting
Try to kill it all away
But I remember everything
Nine Inch Nails - Hurt

Wednesday, June 28, 2017

Time Will Tell ... Time WILL Tell ...

So, I don't like to get political.  I think I've spoken about it before here ... I've announced proudly that I'm a Democrat and a liberal (for the most part).  I'm not backing down on my beliefs; however, I think we're living in a dangerous time right now.   As a country, we're so divided that it's alarming.  It's not enough anymore to just say, "I believe A" and your neighbor say, "I believe B."  Now there is name calling, harsh words, and sometimes physical violence.  It's for that reason that I hesitate to come here and step on any kind of political soap box.

Having said that ...

One of my problems with "the other side" right now, is that some ... (notice I said some and not all ... we need to stop painting everyone in a group with the same brush) ... of their party members have an attitude of "I believe something therefore it is so."  There are facts ... and there are beliefs.  I believe violet is the most beautiful color in the world.  My proof?  The enormous lilac bushes that grew outside my grandmother's farm house.  Now let's stop.  Violet is NOT the most beautiful color in the world.  What I stated is an opinion ... not a fact.

If you are upset with Hillary's actions ... or hell just her personality ... or her husband getting a blow job in the White House ... whatever ... I can respect that.  I honestly can.  I didn't care for George Bush at all ... although in retrospect ... given what we have now, I'll concede that old Dubya obviously wasn't that bad.  But if you say, "I don't like Hillary because she's running a child sexual assault ring out of the basement of a San Antonio pizza parlor."  I'm going to ask for facts.  Not your opinions ... you don't like her hair cut?  That's cool.  That up there?  I'm going to need some kind of concrete fact.  Not just, "I believe she did it!"

I know ... I know.  You're asking ... "ThirtyWhat ... what the hell are you babbling on about???"

So this happened ...

This morning, I mentioned to a co-worker that I saw on the news that if our state doesn't pass a budget (don't get me started on this state), it will discontinue all sales of MegaMillions and Lotto tickets on Friday.  We were just chatting about it, when another co-worker (an ardent supporter of this administration) said, "That's not true.  They're still going to sell them!"

I paused and said, "Really?  I don't know ... I just saw it on the morning news."  My co-worker friend said, "Yeah, I saw that too."  The Republican became animated ... "NO ... I talked with someone and they said they ARE still going to sell them."

When faced with a situation like this, you have to make a decision.  Do you plant your flag on this hill?  Do you let this go ... or do you push it. 

I decided to push ... a little.

"Who told you?  Do they run a gas station or a convenience store or something?" 
"No ... but they know this kind of stuff."

Let's all pause for a moment ... what does that even mean?  Does her source have some kind of psychic link ala Johnny Mnemonic that allows them to download all the world's pertinent info whilst they sleep?  And what is "this kind of stuff?"  Lottery stuff?  Budget stuff?  General office gossip?

So I got online ... because my back hurts and I feel cranky ... and I went to a news site.  I copied the story that explains that lottery tickets will be suspended on Friday  ... then copied the link to the story ... and put it in an email to my friend and this woman.

Her response?  Do I need to tell you?

"That's fake news."

Okay ... so ... everything eventually fades out of popularity.  No one says "Twenty Three Skidoo!" anymore.  Very few people declare anything, "Groovy."  So I assume at some point, it will be come passe to say, "Fake news."  For me personally, that day cannot come quick enough.

There is fake news.  There really is.  Yeah, there's The Onion ... which is the coolest fake news of them all.  But in general, there are headlines that are misleading ... there is news that is outdated ... and yes, there is news stories that use anonymous sources and should be scrutinized.  And that's true of both sides.  I'll admit that the few radical Democratic friends I have will occasional post articles that I will immediately see and think, "Well now, I'm not sure that's true."

But ... just because the news says something you don't like ... that is not fake news! 

I didn't respond back ... because ... sigh.  What would I say?  I am curious what her response will be come Saturday morning if/when she can't buy a lottery ticket.  Will it still be fake news?  What will the argument be at that point?

She's not talking to me right now ... and that's alright.  My head hurts ... and I don't have the patience or fortitude to charge that hill right now.

I'm just a bill
Yes, I'm only a bill
And if they vote for me on Capitol Hill
Well, then I'm off to the White House
Where I'll wait in a line
With a lot of other bills
For the president to sign
And if he signs me, then I'll be a law.
How I hope and pray that he will,
But today I am still just a bill.

Schoolhouse Rock - I'm Just a Bill

Thursday, June 01, 2017

Why I'm Fat ...

At seventeen, I moved into my first apartment.   I remember going to the grocery store for the first time to buy groceries "like an adult."   I remember my joy in picking out bottles of ketchup and mustard ("This is MY ketchup!") and thinking how stereotypical that I was buying milk and bread and eggs.   I was very reserved on this shopping excursion ... nothing extravagant.  Not that I had the money to be that extravagant.  I do remember buying a small ham and thinking, "This ham is proof ... I am officially grown up."

A few months later, I bought a cake for someone's birthday and I had a small party at my apartment.  There were leftovers, of course.   And while doing the dishes, I reached over and took a finger full of icing off the cake ... and it hit me.

People call this an "ah hah" moment.   Although there should probably be another name for a negative revelation.

I remember stopping ... looking at that cake ... and thinking, "I could eat all this icing ... and no one would tell me to stop."  It was like the scales dropped from my eyes and I saw everything in a different light.  All those times when I was little and my mom took me shopping and I begged for a hot dog or pretzel at the food stand and she said no?  I could get that hot dog now.  I could buy that pretzel!

Honestly, from that moment until today, I've had a terribly unhealthy relationship with food.  Someone I dated once told me, "Food is fuel ... not enjoyment."  I wish ... and I'm not kidding ... I desperately wish that I could think that way.  But I don't.

Stoney and his friends from work went to a Cardinals game today and won't be home until around seven o'clock or so tonight.   When we talked about everything this morning, my entire evening immediately formed in my head.  I would pick up something delicious and take it home ... I would turn on the air conditioning and take a hot shower ... I would get into some soft and comfy pajamas ... and I would eat whatever that delicious thing might be ... whether it was a Monty's sub sandwich or a Long John Silver's peg leg or a Taco Gringo sancho.

I'm a responsible, reasonable adult.  I know that I should not plan an evening by myself around food ... let alone something as unhealthy as fast food.  But again, as my post yesterday stated, I don't really have an answer.  It's not out of control ... I'm not binging on anything as my stomach doesn't have a lot of room for food with my kidneys pressed against it.  But nevertheless, I'm not making good choices.  I know that.

But from that day ... in a tiny, sweltering hot attic apartment ... until right at this moment ... I've found myself thinking, "I have money, I have a car, and I can have anything I want."   Tonight ... I think I want a Monty's turkey sub with extra dressing.

Sigh ... nope ... I won't be getting thin any time soon ...

Somebody told me
Boy, everything she wants is everything she sees
I guess I must have loved you
Cause I said you were the perfect girl for me

Wham - Everything She Wants