Saturday, April 20, 2013

2 years and 11 months post-tx!

Sending HUGE amounts of love and thanks to Jim's donor and his family for their selfless gift to allow all of this to happen!  Today has been 2 years and 11 months since they lost their loved one.  I can only hope that they know how much they have changed the lives of so many people. <3 span="">

Again...if you don't hear from us things are going fairly well.  Jim is still having issues with his stomach as I mentioned in the past.  His MRI & lab work show:
  • cirrhosis in his liver so we are working with a nephrologist on that.  His bilirubin level is high. Bile duct of his liver is narrow and may require biliary stenting.
  • Kidneys are not filtering properly and he needs to focus on hydrating.  He hasn't been doing very well on the hydrating portion of this.  His urine looks like apple cider...not.cool.
On a better note, we are living a much more "normal" life.  Spending time with family and friends and doing, for the most part, whatever we want.  Couldn't say that a few years ago. 

Here are some things that we have enjoyed since I last posted:

I've been training for the DASH for Organ Donation Awareness 5k tomorrow.  If you'd like to donate, here's the link for our team.  Our team every year has been growing and that is so cool and extremely humbling to Jim and I.  As of now we are at 1,320 raised.  Our team goal is $2,000.  

There are a few days every year that I always look forward to.
All of these days remind me of how precious life is and how quickly it can be taken from anyone.  

The last few months in pictures:

We participated in Wreaths Across America.  

Jim's dad, Jim and I: 



Ice, one of our dear friends and a Vietnam vet:


 My brother is the second guy from the left:

I ordered a bunch of these para cord bracelets and a keychain from a post transplant friend.  If your interested here's her blog.

Attended an event for the Fisher House:
My sister-in-law, Jan, and may friend Diane: 


 Celebrated my birthday with  friends:

 Celebrated another Christmas together:

video


Michelle, Me, Kir and Holly


 Played the "guess your blood sugar game":
Me and Michelle

 Acted silly:
...or at least I did.

 Had a New Years Eve party:

Allie, Shannon, Rod and Vonnie
Josh and Kirsten
 Mattheu, Kir and Josh

Laura, Neal and Kirsten


Mattheu and Michelle


Took a vacation in Florida:
Me at a winery!

Jim relaxing at the resort

Jim in his happy place.  Yankees spring training in Tampa

Doing agility with Doolie:
video

Crazy hail storm...
video

That's all for now.  I'll try to post pictures of the DASH.

If you want to get ahold of us we are on Facebook.

xoxo
Denise




Saturday, November 17, 2012

What's new?

It's been awhile since I blogged last so thought I'd bring everyone up to snuff.  So, here's each month in a nutshell.

September:
We went on our yearly trip North Carolina in September and we were able to find the house (click here for the house story) I've been trying to find since last year.  Last year the road was wiped out because of a hurricane and we couldn't get far enough south to find it.  It was interesting walking the hilly sand dunes and comparing my walk from a few years ago to now.  I had Jim and Amanda (a/k/a my Rock) to share it with.  Not alone, wishing I had someone else to experience the awesome views.

2011 with old shitty CF lungs and supplemental oxygen.  Blah!





2012 with NEW lungs and NO oxygen tank!!  Woo hoo!
Walking up to the house with Doolie
We climbed up to the house.



Doolie loved sleeping on the beach
Jim in his happy place













Jim and Jess.  Jess also has CF and had a double lung transplant.  She came to visit us and stayed for 2 night
Doolie started puppy kindergarden...


October:
Jim's birthday - we celebrated Jim's 43rd birthday!!  Pshh...and the doc's said Jim wouldn't live to be a teenager.  He showed them.




Vonnie smoked her last cigarette!  Yay, Vonnie!




















We attended the CF Prom to Remember in New York City and met even more AMAZING people in the CF community.

Jim and Piper, fellow CF transplant friend. 
Jenny & I (CF wives)

Me, Jim, Jenny and Jerry (fellow CF transplant friend)

Jim and Patti (fellow CF transplant friend)

We attended the Finest top 20 Under 40 for Cystic Fibrosis and were able to share the evening with friends and family.  It was nice to have everyone there so they could experience more AMAZING people fighting CF and hear stories from their friends and families.  We also had a really fun time in the photo booth!
Shannon and I

Michelle, Vonnie, Heidi, Shannon, me and Kirsten
Seriously?  They put at table 13!
Say cheese!
I LOVE these girls...
...and this guy too!


November:
We had to change the date of our CF fundraiser "Steel Horse Poker Run"  due to hurricane Sandy.  We are lucky that the only inconvenience we had with the hurricane, other than changing the date of the fundraiser, was that we lost power for about 24 hrs and had plenty of tree branches fall.  Many more people were without power for days, lost their homes and some lost loved ones.



Jim and I with Bennett.  She is a 5 year old CF fighter and a sweetheart.
Thank you Jae and McKenna for helping with the food!  
Doolie hung out in the MINI all day.  He was so good for being just 5 months old.  He didn't event eat his bandana with the poker run patch on it.

Shannon, Heidi and Rod
Hailey sung Just Breathe by Eddie Vetter. Click here to hear her amazing voice.


MINI's!


Vonnie, Jim and I

High School friends, Beth and Karen


Nick from The Steel Show, me and my brother, Dave
Bennett handed out our awards perfectly.

Barb (Team Sheldon) and I
Barb and Jim
The girls with my MINI

Shannon, me and Rod.  You guys rock the raffle baskets and auction!

Doing registration and keeping warm by dancing.  My sister-in-law is the second from the left.
Good times with good friends.














I celebrated my 21st birthday (again) with great friends and family...

Kirsten, Michelle, me and Shannon

Josh, Rod, Rachell and Matt



We celebrated the 237th birthday of the Marine's, which was an honor.  Another great thing that has happened due to CF is that one of the Vietnam Vets from Jim's fathers motorcycle clubs reached out to us last year to ask how they could help with the poker run.  Since then they have been supporting us and we



"Ice" and I.  Ice is a Vietnam Vet and was in the Coast Guard.  He approached us to help with our poker run fundraiser and has been a huge help and great friend ever since!



Some of my Cysterwives (wives of men with CF) husbands have had transplants and are doing well.  On a crappy note, one of the wives husbands had a transplant a year AFTER Jim and is currently looking at a 2nd one.  Here is some info about them and their journey.  Another cysterwife, who's hubby had his transplant less than a year ago, had his pfts drop form the 90's to the 70's already.   Our slogan is F U CF!

Jim's health has been up and down.  He needs to take pain meds (Morphine and Oxycodone) and anti-nasuea meds practically daily to be able to live comfortably.  There are some days that his belly gets so distended that he looks pregnant.  Because the docs think that his vagus nerve was damaged during transplant his stomach doesn't empty as fast as it should.
Today is a bad day.  It gave me flashbacks of the last several post-tx hospitalizations he has had.  He came home from his mom's, got out of the car and puked on the side of the house.  After several hours and with the help of Zofran & oxycodone he is feeling better but now has a bad headache and chills.  No fever though so it looks like he's on the upswing for now.

Thank you to Jim's donor and his family for letting us enjoy life!