Sunday, January 30, 2011

24th Annual Cystic Fibrosis Beach Bash!

Nothing new going on with Jim since my last blog post but I thought I'd share some of the pictures from the Cystic Fibrosis Beach Bash on Saturday. Team Sheldon was there and some extra special friends too!
The security guys are very good friends ofoursandvolunteer their time every year at the Beach Bash in Jim's honor. We cannot thank them enough for you guys! Sorry Justin, don't know where you went when the picture was taken! Angie and Shannon Being serenaded by a Toga dude.
Michelle with one of the band members from The Toga Party!

Barb with her Sheldon
What's up with the dolphin?
And the night wouldn't be complete until security threw at least one of us out!

A HUGE thank you and lots of love to everyone for coming out. I'm looking forward to the 25th Annual Beach Bash!

Thank you donor and donor family for your selfless decision. Be someone's hero and become an organ donor!

Monday, January 24, 2011

Quick update

Pulmo appointment went well, lungs and everything sounds great!! Down 10 pounds though because of stomach issues. Transplant coordinator (love that woman) was laughing about how big his watch looked compared to his tiny wrist. He is now considering wearing the watch on a necklace like Flavor Flave. They are thinking that he may have had the stomach bug that apparently is going around along with an episode of gastroparesis.

Surgeon is not really thinking that the gallbladder is causing the issues as much as a pancreatic cyst which has grown from 1.2cm to 2.1cm (which we didn't even know about)....soooo.....looks like going to see a different surgeon to figure out the pancreatic issue....they said they are fairly certain it is benign but needs to be addressed prior to any further steps. Surgeon said he wouldn't touch the gallbladder (even though its full of stones), because the pancreas can cause the same symptoms and should be addressed first.

After gallbladder and pancreatic surgeon spoke it was decided that an Endoscopic Ultrasound should be done. Scheduled for Feb 1st. They will not be doing a fine needle aspiration as they don't feel its cancer. The damage to the pancreas could easily be caused by passing a gallstone and he has a bag full of them. One more test to add to his list....the worst was a prostate biopsy where they took 12 samples of his prostate through his intestinal wall...YIKES!!

There will be a meeting with the pancreatic surgeon on Feb 4th to discuss results. We're hoping they can remove the cyst and the gallbladder laproscopicaly soon. Stomach is still hurting some but at least he's eating solids.

Wednesday, January 19, 2011

What's in my head?

Wow, so hard to believe that 8 months ago today we got THE CALL! Every month at this time I get very emotional. I feel like I want to cry just typing this. I really don't understand why that is. This is a good, GOOD THING! He has his new PRISTINE lungs and life. is. just. amazing (with a few viruses, ER visits and hospitalizations in between)!

It is still, after 8 months, hard to digest everything. Although we only waited 2 1/2 months for the call it felt like an eternity! WHEN are we going to get the damn call, the REAL CALL?! Ugh! I wouldn't wish that on my worse enemy...seriously, I wouldn't! Maybe that's why I get emotional. I remind myself how bad things were and how hard it was to wait. So many questions with no answers. How many times can Jim's body handle coughing until he almost passes out? How many time will he cough up blood before we get the call? How many times will I sit next to him in the morning rubbing his back while he is trying to catch his breath just because he sat up? Will there be another dry run? Will the call come in time? Will I have Jim with me for Christmas?

So if you're every curious of what might be going on IN MY HEAD on the 19th and 20th of any given month...there it is, in black and white.

Jim's CMV level has gotten to an acceptable level that he had his PICC line pulled last week. So, instead of the IV ganciclovir he is on oral Valtrex for the CMV. The sternum pain has subsided substantially. He has the pain only when he inhales deeply. Now, he's got some gut issues going on. A few days ago his stomach was so distended that it looked like he was at least 3 months pregnant. He's had severe stomach pain for the past week. Yesterday and today it has let up. We are thinking that it is either his gallstones or he's having the same emptying issues that he had right after transplant.

Tomorrow we head to HUP for a follow up visit with the transplant folks and then have a consult with a surgeon about Jim's gallbladder. We know he has to get it out and hopefully we'll get a date for the surgery right away.

And now for some fun stuff...
The sunroom remodeling is complete! We took a ride to IKEA 2 weeks ago and purchased a love seat and a table. Since I knew that the dogs would end up taking over the love seat I made sure that I got one with a cover (and purchased extra replacement ones). As you can see, Abby and Dharma love THEIR new sunroom!

Love seat in a box... new pillows ta da!Abby Dharma

Also, Jim, Team Sheldon and friends will be attending the 24th Annual Cystic Fibrosis Beach Bash. Come on out and join us. It's for a great cause!!

Very touching story about nine-year-old Christina-Taylor Green, the youngest victim of last week's shootings in Tucson, Ariz: . 9-Year-Old Ariz. Shooting Victim's Organs Donated.

Thank you donor and donor family!!!!!!
Click here to become an organ donor.

Saturday, January 8, 2011

Friends and Fortunes

Oooops! Posted this before it was finished. More pics and stuff to follow.

Always have the hand sanitizer handy! This picture was taken at New Deck Tavern, the official happy hour location for Team Sheldon!

First time not having to play in the snow without Jim in at least 10 years! Yet another milestone in transplant land!
Baby it's cold outside...

Mr. I Can Play Outside Without Coughing Fahr.

Abby and Dharma loving the snow.

I want to share with a message my friend sent to me. Her brother-in-law lost his battle with CF several years ago:
I just want to share with you what a joy it is to read even your simplest blogs and pics. The joy that you and Jim share after so many years together is a pleasure to see, and an inspiration that not all married people become bored and frustrated with each other as the years grow. Just thought if I had something nice to say about you, then there was no reason not to share it and perhaps bring a smile. :) Continued Blessings, Joy and "Pristine" health to you and Jim this year and always. Cheers!

Saturday, January 1, 2011

A Year in Review

2010 was one of the most interesting years by far for us. There were many GOOD things and many BAD things but if you average it out, 2010 was AWESOME!

The good:
  • Obviously, Jim received the most precious gift, the gift of life;
  • Luke, Piper, Jess, Beth, Justine, Chris, and many others received their gift of lungs;
  • An awesome surprise birthday party;
  • Seeing Dave Matthews;
  • Amazing friends and family;
  • Meeting Joe (this is a big f'ing deal) Biden, Bill Clinton and Bowser from Sha Na Na;
  • Walking hills and going out in the cold with my husband by my side;
  • The oxygen tanks and compressor were removed from the house;
  • No more breathing treatments or loud machines running (6 hours back into Jim's day);
  • Meeting new amazing people out of the transplant journey;
  • Jim being an active member of the household again (pumping gas, letting the dogs out, scraping the ice off of the car...just the little things);
  • Learning what really is important in life.

The bad:
  • dry run;
  • loss of Jim's Grammy Smith;
  • loss of our precious cats, Torri and Phoebe;
  • other CF friends still struggling and waiting;
  • loss of several CF acquaintances;
  • unexpected visits to HUP;
  • PICC lines
  • CMV & A1 rejection

Dry run:

Thank you donor and donor family for making 2010 awesome!
Click here to become someone's hero!