Monday, March 21, 2011

10 months and "I Out Run CF"

Sat/Sunday was the 10 month mark of Jim's transplant, so Saturday morning we had a celebratory cinnamon bun breakfast:
Sunday I did the "IOutRun CF" virtual run/walk. The main event was held in Grosse Ile, MI but people that were unable to attend were invited to participate wherever they were located. It turned out to be a huge success with many states represented. I did week 6 of my C25K training and added a walk to the end to reach 5k.
I gave my official I OUTRUN CF shirt to a friend so I decided to wear my lung shirt instead.
I started in my back yard and did a large loop around the neighborhood. It was a great day but I was not feeling to great but I did it any way. Among many other states, a group in Holland also participated. They read about the I OutRun CF event on this blog and did their own! They had a huge group of people! If you want to read their blog you can use Google Translate, as it is written in Dutch.

My next goal is to run the 5k DASH for Organ & Tissue Donor Awareness on April 17th in Philadelphia, PA.
My initial goal was to raise $1,000 and I really thought that was stretching it. Well, within less than 48 hours I reached that goal! I then upped the ante to a $2,000 goal, which I exceeded quickly, so my new goal is $5,000. Right now I am the 2nd highest fundraiser! I continue to be amazed every day at the support I have been getting to reach my goal. If you are interested in donating click here. Under "Visitors", click on "Sponsor Participant". Put my name in (Denise Fahr), click on the "Search" box and my name will pop up. Click on my name and follow the instructions.

Jim had lab work done last week and found out that his WBC is at 2 (should be 5). He had it rechecked today. If it does not go up they will consider Neupogen shots. His RBC is low and they may consider a transfusion to bump it up. We will know more once we have the results of the labs taken this morning.

And I'd like to take this opportunity to thank the wonderful person, that will probably sleep perfectly fine tonight, for smashing into our Jeep in the parking lot where Jim works! Amazing...
But hey, Jim is well enough to go back to work (there's looking at the positive for ya)!

Click here to become an organ donor!! Just a few click can save lives!

Wednesday, March 9, 2011

All kinds of cool things and some CF stuff thrown in.

I just returned from my mini-vacation to Florida with my parents last night. We had a great time and the weather was beautiful!

As I said in my last post, I planned on meeting up with a blogging friend of ours, Jess. So, here we are!
Jess drove up from Tampa and got to our place around 1:00. We had a great time walking around the resort, and sitting by the pool (in the shade with sunscreen).

We chatted about everything from family, school, relationships and of course CF and transplant, like we've known each other for years. Well, we've known each other for almost a year but never met before. It was really neat to finally meet the person that you have a lot in common with that not many other people can relate to. Granted I do not have CF and cannot relate on every level, I have been around it for 18 years and am much more versed in it compared to the average Joe. And, by the way, my girl Jess sported her bikini with a PICC and J tube like no ones business! :) After hanging out for a few hours we headed back to the room, changed and went out to dinner with my parents and godparents. I wasn't quite sure if Jess would be OK with eating but she did decide to have a small portion of food. I followed up with her later to she how her stomach was and everything went fine with no pain. She has gastroparesis that seems to be more sever than Jim's is. Thankfully it is getting a bit easier for her. Read her blog for details. Next year we will meet up again and then Jim will also be able to meet Jess.

And thank's for the cookies J-Mom! They were delicious!

I kept up with my training while I was in FL. Here are some pictures of the views from my runs. How could I NOT want to be outside with these views and great weather?

On Sunday we moved to a different resort and....

.......on Monday Kristen and Jesse came up to visit! Jesse has CF and his personality is a lot like Jim's. He's got the attitude to push past anything that gets in his way. We met Jesse through his blog and of course behind every man is a wonderful woman. Kristen also has a blog and she recently wrote about our meeting. Thanks Kristen, it definitely is nice to have people that understand your way of living. And I'm glad you guys enjoyed yourselves. Next year the 4 of us will get together!

As you can see, we played mini golf and Jesse was nice enough to fish my ball out of the pond! Needless to say, I won with the highest score and Kristen won for lowest...

Back on the home-front, Jim finally got his Cayston that he has to inhale for the pseudomonas that he cultured on his last bronch. He is still on 60 mgs of Prednisone (for the A1 rejection that was also found in his last bronch) and I was reminded of that when he yelled at the dog for barking to go out. Prednisone is nasty, I've been on it before and understand that that drug is so powerful that it is hard to control your emotions. As long as it does what it needs to do, I can handle a little crabbiness from Jim.

Wow! This "treatment" takes less than 5 minutes
it came with this handy dandy sterilizer.
Thanks CF Pharmacy for getting things figured out for us!

And now for the coolest part of the blog...
Jim picked me up from the airport on Tuesday evening and when we got home I opened the garage door so Jim could pull the car in and here's what I saw:

Yes, behind door #1 was a Mini Cooper with a huge red bow on it! I've wanted one for years and we've discussed getting one but I always said it wouldn't make sense to have another car. Now that Jim is back to work he is using the Jeep much more and with the gas prices being as high as they are, having this as a little zip-around-town, short commute car for me makes sense and in the long run will save us money. I couldn't sleep last night because I couldn't wait to get up and take it for a ride. I actually woke Jim up to tell him that too!

As usual, thank you to Jim's donor and his family.
Click here to become an organ donor.

Thursday, March 3, 2011

Rejection & Vacation

Jim's bronch shows A1 rejection (mild). They're doing a steroid taper of 50mg x 5 days, 40mg x 5 days, 30mg x 5 days, 20mg x 5 days, then back to baseline of 10mg daily. He grew out pseudomonas again and it is being treated with Cayston (sp?). Getting CMV levels once a week for 4 weeks and re-bronched in 5 weeks.
He started back to work Monday and is doing fine. Belly issues off and on.
I am currently in FL with my parents for a mini-vacation and will be meeting up with a friend that Jim and I met through her blog. She had her transplant a month before Jim and is having some bad times with gastroparesis.
That's all folks.