Category Archives: Kidneys

Aliiiiive and Kickin’….

Good news!!!  My doctor informed me that my creatinine numbers are going back down!  (Maria, I think you were on to something with your comment!  ;))  They said that because everything looked good this time, there was no reason to worry about rejection, so for now, I’m in the clear!  Woooohooo!!!

I swear, the first song that came on the radio on my way home was Eye of the Tiger – which is fitting since Kirby is KICKING BUTT!  I just pictured Kirby running up the Rocky stairs with boxing arms swinging saying “Bring it!  I will NOT be taken down!”  😀  It also seemed like every song after was one inspiring song after the next.  Even the rainy, gray clouds cleared and I had sunny, blue skies all the way home!  No joke!  As cheesy as that sounds, I did truly feel as if God was sending me the message to say “everything is gonna be alright!”  Or was that Bob Marley?  I did cry a little out of relief and also from thinking of how much this has stressed my entire family out over the last month.   It’s like a huge weight was lifted off my shoulders.

Boxing-kidney

Now, I just have to make sure I’m an absolute PEST to this pharmacy to ensure that it doesn’t happen again.  I am still trying to negotiate with our benefits team to allow me to switch pharmacies, but that might be on-going and a months-long process, so I’ll keep at it.  I can be incredibly persistent when I have to be.  Hee…

I want to thank everyone who commented, emailed and texted me with your prayers and suggestions!  I truly have the best people surrounding me, and without you, this fight could seem impossible.  Your words helped me stay strong when I went into panic mode, and it really, REALLY helped.  Thank you!

On a similar topic, I’d like to share a special evening I had last week that also helped me stay inspired.  I was invited as a special guest of our Tiffany & Co partners to attend the Taylor’s Gift Awards dinner.  (For those who are unaware of this organization, it’s the only non-profit organization of it’s kind to help promote organ donation.  They also help with financial aid for families having to go through the organ donation process.  For more on their story, which is an amazing story, click here.)  It was a very emotional night as people told their stories, but it was the boost of positivity I needed the day I received the news of my kidney last week.   🙂  Plus, they even raised more than $50K to help the cause!  I’m hoping to be able to donate some time with them in the future!

Taylor's Gift - table pic 2017

Taylor's Gift - cofounder pic - cropped 2017

Me with the Taylor’s Gift co-founders – Tara and Todd Storch. #taylorsgift #outliveyourself

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Things I’m thankful for today:

1.  Kirby is safe and I can breathe easy knowing the pharmacy didn’t ruin my organ!
2.   I have amazing friends & family who are quick to pray and help boost me up when things get rough!
3.  Heather Norris – for thinking of me at the Taylor’s Gift dinner!  I had such an amazing night, thank you!
4.  I finally got to eat my tacos for National Taco Day!

 

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I’m a Survivor, I’m Not Gonna Give Up!

I hesitated putting this in writing b/c I didn’t want to put anything bad “into the universe”, but my promise was to share with you all the good and bad about my transplant experience…

Today I have run into the situation that every organ recipient fears the most – rejection.  It’s a huge needle that is popping my dreamlike bubble of post-transplant bliss…and it’s terrifying.

As anyone on anti-rejection meds knows, you have to stay on a very regimented medicine schedule that is imperative to the survival of your new organ or you risk the chance of your body rejecting it.   You are not supposed to miss any doses.  Well, due to the incompetency of my special meds pharmacy, my meds have twice been delayed and I have missed an alarming amount of doses that have now put Kirby in danger.

I just had a clinic visit today where they told me my bloodwork didn’t look good and my creatinine numbers were elevated.  I’m supposed to go back for more bloodwork next week when they will decide if I need to get a biopsy.  I have complete faith that my doctors will do everything they can to help me keep from losing Kirby, but there is still that fear.  The fear of having to go through dialysis again, of having to be sick again, of having to go through the entire painstaking ordeal of a transplant again.   I don’t want to go there again!

The most frustrating part is that this is due to something that is out of my control.  I’ve done everything possible to be the most compliant patient, to follow all the rules in order to keep my kidney safe, and this pharmacy blows the entire thing to pieces with their inefficiency!

I am absolutely being very vocal to our company’s benefits team, our insurance company, the pharmacy, AND my transplant social worker to make sure that this doesn’t happen again.  (They’re getting a good taste of my Irish temper coming to light!)  We’ll soon see if our efforts are successful!  If you have gone through something like this yourself, or know of anyone who has, please share any advice you have to give.  I’ll happily take it!

For now, I’m asking for you to help send positive vibes and prayer that everything goes well and that we can keep Kirby alive and kickin’ for many many more years to come!  It’s NOT his time yet!  I will not allow it!  *Enter me and Rick Astley singing to Kirby here…

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Things I’m thankful for today:

1.  My office chair spins?

2.  There is still hope!

3.  Taco Casa – helps sooth the nerves… a bit.

4.  As my friend, Kerrie, pointed out – if the situation was dire, they wouldn’t wait a week to see me, they would have pulled me in for a biopsy today!  Very true…and I’m very thankful for that!

Life is a highway. I wanna ride it all night long!

Wow… ok, so much for my New Year’s resolution about sticking to a more consistent blogging schedule!  LOL!  Maybe my new resolution should be to work on better resolutions!  I’ll add that to this year’s list.  Jot that down.

So, I am going to justify my “leave” by saying that a ton of stuff has been going on this year that has kept me insanely busy – to the point that I have not stopped to give you the time you deserve!  So, let’s take a break, grab a Pumpkin Spice Latte, and curl up on the couch to catch up.  Actually, my couch doesn’t fit that many people, and I’m not a fan of PSLs, so how about I just blog about it?  😉

In order to not overwhelm you with the many new updates of my increasingly ceaseless lifestyle (yes, I’m being totally sarcastic…kind of… it HAS been busy), today, I’m only going to focus on the biggest recent change – travel.  I say “change”, but really, it’s a return to my life pre-transplant/sick-time…just different.  On one hand, I’m absolutely LOVING being “on the road again”, however, the highway is less straight and wide open than it used to be, it’s now filled with twists and bumps!  Before I got sick, I used to travel a lot for work.  I loved it!  I was adventurous and fearless trying new foods, meeting new people, dancing till my feet would literally throb… anything that created the most fun and crazy stories and memories!  These days, my travel has a completely different feel.  I’ve become this overly cautious grandma!  What???  What happened to me?  Who am I?

shocked-grandmother

Wait…what?

Well, I’ll tell you what happened… my “new life” happened.  I once had a panic attack in the middle of one trip fearing what would happen if I got sick while in a “strange” city.  Who would know what all my “issues” are if I couldn’t speak for myself?  Where is the nearest hospital/ER?  Would they be able to treat me?  (In one case, they even admitted they couldn’t!)  No one knows me or would even know what to do to help!

I am still going through a lot of changes post-transplant that require adjustment.  And that’s how I’m regarding this… an adjustment.  It’s all about being a boy scout.  (Not literally… I have no desire to be a 7 year-old boy!)  I have to be prepared.  I have to think 10 steps ahead of everything I do, and I’m learning more with each trip I take.

When I fly now, I have to be very careful of the recycled air and germy, nasty fold-down tables in the plane b/c of my low immune system (yes, I pack clorox wipes for this reason).  I have to take into consideration where I travel – no 3rd world countries – so even some work trips are a no-go.  When I am in a new city, I have to do extensive research on where I can eat due to the Celiac disease (there’s an awesome app for that – Find Me Gluten Free).  When I’m in large crowds, I have to be aware of who’s coughing, what I’m touching, where the nearest “exit” is in case I get glutened, and so on and so on.  It’s exhausting, but I’m learning to adjust to this “new life” one step at a time (as are my very patient friends – God bless them!).

Now, back to my resolutions… with this blog, I thee vow that I am making progress on my “accepting my new self” resolution.  I am no longer the same carefree Cameron Diaz character I once liked to believe I was, but I’m able to go out and see the world again and if that means I have to be more Howie Mandel with my actions so I can do so, I’ll gladly take it!  🙂

??????????

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Things I’m thankful for today:

1.  Getting to spend an amazing weekend in Nashville with my Jersey girls – Jen and Carm!  It’s so glad to see that sometimes some things don’t change.  🙂

2. Luck!  After accidentally taking a big bite of a panko-covered fried banana (I thought it was a GF cheese bread ball), I did NOT get sick from being glutened!

3.  Virgin Airlines – they have a fun and modern take on the flying experience, AND they offer safe GF food/snack options in-flight!  Woohoo!

4.  All beef hot dogs – for when there is nothing else in an all-fried/deli-filled food court to eat that’s safe to eat.

5.  That my mom’s foot is healing better after her 3rd foot surgery within the last few months.  Mom, your new toe will be something to show off in sandals for our Hawaii trip!  🙂

6.  My new gray sweater/cardigan – definitely the most comfy, squishy, warm sweater I’ve ever bought!  It’s like the perfect blanket for all those freezing planes (and meeting rooms).

7.  Shout out to my friends Elissa and Nick – they are going to have their first baby this Christmas!  Congrats to you both!  🙂

 

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