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

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