Another Outlet

Lungs vs Legs

2011-12-21T21:13:00.000-08:00

It’s been awhile so I figured I should update everyone. Again, no news on the blog is good news!

Things have been going great! Jim does have abdominal pain several times a

week but he says it’s something that he doesn’t mind living with compared to his old crappy lungs. He is also back to his normal weight (about 160 I think). Although he finds it hard to eat, he is really good about getting calories in him.

Mom, Amanda (a/k/a The Rock) and I went to NYC to see the play Wicked in mid-November. It was a great show and we had awesome seats. Why is the wicked witch the way she is? Is she really dead???? You have to see the show!

We went to my brothers’ house for Thanksgiving. The entire family was there; my 2 brothers, their kids (Andy, Amanda a/k/a The

Rock and Tyler), my sister-in-law, Jim and my parents along with Amanda’s boyfriend, Chris. We had the usual turkey, potatoes, green bean casserole (yuck,

everyone else likes it so I made it), sweet potatoes, corn etc. Here’s the standard picture of dad cutting the bird:

I had a second trip to NYC in the beginning of December. This

time it was with Jim…FINALLY! I’ve wanted to walk around NYC for many years with Jim but either we didn’t want to take the chance of him getting sick from the cold or his lungs wouldn’t allow him to walk around. Needless to say, we had a great time! We walked for miles with no need for a break except to rest our legs. We were even dodging in between people on the street because they were walking too slowly for us. Every once in awhile I’d look back only to find Jim either next to me or in front of me. Over 1 ½ years later and I still can’t get over him walking at the same pace as me. The joke of the trip was that Jim’s LUNGS worked fine but the LEGS…well, they were hurting both of .

The main reason we went to NY was to visit our friend Piper. She invited us to her 30^th birthday bash. We’ve been trying to get together for awhile but timing seemed to be off. We met some new people as well (CF related and non-CF related). There were 3 double lung transplant recipients there (Jim, Piper and Kelley) along with another couple who are waiting for THE CALL. ---I'm hoping that call comes soon for Jerry and Jennifer!---

The following morning we got up, and headed to Starbucks. We then walked around a bit more and then met Piper, her parents and sister for lunch. After that Jim, Piper, her dad and I walked around the park and enjoyed the great weather.

There has been some sad news in the CF community. Within the past week we have lost at least 5 people that I am aware of. CF is evil!!! On a good note, I know of at least 2 people that have received their new windbags!

Thank you to Jim's donor and his family for letting us enjoy our time with new friends and family!

Lungs vs Legs

2011-12-21T18:21:00.001-08:00

It’s been awhile so I figured I should update everyone. Again, no news on the blog is good news!

Things have been going great! Jim does have abdominal pain several times a

Mom, Amanda (a/k/a The Rock) and I went to NYC to see the play Wicked in mid-November. It was a great show and

we had awesome seats. Why is the wicked witch the way she is? Is she really dead???? You have to see the show!

We went to my brothers’ house for Thanksgiving. The entire family was there; my 2 brothers, their kids (Andy, Amanda a/k/a The

Rock and Tyler), my sister-in-law, Jim and my parents along with Amanda’s boyfriend, Chris. We had the usual turkey, potatoes, green bean casserole (yuck,

everyone else likes it so I made it), sweet potatoes, corn etc. Here’s the standard picture of dad cutting the bird:

I had a second trip to NYC in the beginning of December. This

Thank you to Jim's donor and his family for letting us enjoy our time with new friends and family!

I know where I've been

2011-11-04T18:19:00.000-07:00

These videos are from the Poker run. My friends daughter, Hailey Carson, sang "I know where I've been" which I thought was a great pick on her part (thanks Hailey!). She also sang the Star Spangled Banner and last but certainly not least is a video of the motorcycles headed out for the ride!!!! I can't wait to cheer on the riders next year!

The Friday after the event we attended a Masquarade Gala called The Finest: Top 20 under 40. Jim was one of the honorees for the event. He had a really nice speech that I have to figure out how to upload yet. It's too long so I need to split it into 2 files, somehow...

Barb wore some really cool shoes so I had to take a picture of them!

As usual, thank you to Jim's donor and his family!

I know...

2011-11-03T18:25:00.000-07:00

...I know...

I haven't posted in a month!

We've been busy raising money for CF! Good excuse huh? So far the total raised is $12,704!!!!

On October 23rd we had our 1st Annual Steel Poker Run and it went fantastic! We were both amazed at how many people came out and supported us in our quest to fight CF. Our family and friends came together and did it all in just 8 weeks of planning! What a heartwarming feeling it was to see so many people come out and enjoy the day! Thankfully we didn't have it the following weekend because we had a major snowstorm and that would have ruined the entire thing. Here are pictures the generous photographer took. We also ended up on the local news channel...I didn't even know they were there! Here is a thank you from Jim and I. I will never forget the feeling I had when I was standing on that stage and looked out at all the people that came together. There was such a strong sense of community. I met so many amazing people through all of this. I cannot wait until the 2nd Annual. It will be much better since we have all year to plan!

The venue the evening before...

Getting the word out

2011-10-03T19:48:00.000-07:00

We are still very busy getting ready for the poker run. It is getting bigger and bigger each day and I am so amazed at how giving people have been. Please go on to Facebook and "like" our page, tell all your friends and ask them to tell their friends too! This evening we met with one of the guys from the local radio station , WZZO, that will be sponsoring our Steel Horse Poker Run

We also found out that the

video clip. and

article in our local paper was posted about Jim's tx and the event. (pretty cool, huh?)

We have also been busy with living life! Here are some fun pictures of the past few weekends. The first picture is of my friend Holly (Team Sheldon member) and I from the Alex's Lemonade Stand carnival with the real Scooby Doo! 2nd picture is of Jim and Shannon (Team Sheldon member) and the 3rd picture is a group of friends at a party we were at.

That's all for now. More fun stuff to follow, I'm sure!

Thank you donor and donor family! xoxo

Busy with some very cool things!

2011-09-18T16:21:00.000-07:00

Welp, today is Jim’s 16 month transplant anniversary. As usual, all day I thought about where I was and what I was doing 16 months ago. What a journey! Jim will be going in mid-October for a follow up appointment to get his PFT’s checked and to touch base with his pulmo and tx coordinator. He is due for a bronch shortly and hopefully there will be no signs of rejection or any sort of infection.

Vacation was awesome! The weather was in the 80's and sunny every day. It stormed one night while we were sleeping which was nice and relaxing.

We went to the beach just about every day and the days we weren't at the beach we went shopping! One of the nights we went out for a nice dinner for our 18 year wedding anniversary. That's where the above pictures are from.

We saw some of the devastation from Hurricane Irene. We tried to get down to the sand dune (click here for the sand dune story) that I really wanted to climb but were stopped at a bridge by Cape Hatteras. The bridge was stable but after the bridge you could go only about 5 miles and then the road broke. The day we took the ride down was the same day that they were allowing people back to check out what belongings they had remaining after the hurricane.

The wild horses showed up on the beach right next to our truck and scared Amanda. She jumped in the car (wimp). I was sitting in the back of the Jeep and they walked right up to me. They looked very young and were beautiful!

The dogs loved the ocean as usual and were both pooped every night. Near the end of the trip Dharma started to get sore and cranky and got a bit aggressive with Abby. Dharma is 12 and we are hoping to have her with us next year but not quite sure if that will happen.

We’ve been quite busy lately. We decided to do a poker run to raise funds for the CF Foundation. The event will start at SteelStacks in Bethlehem, PA. People will take their motorcycles or cars and go to designated spots within the Lehigh Vally and pick up a token (little green army man, close pin etc). Once they hit all 5 stops they will return to SteelStacks and will be given 5 playing cards. The top 3 poker hands will get a cash prize along with an award. We named the event Steel Horse Poker Run. The event seems to be growing every day! We’ll be having a tricky tray (a/k/a Chinese auction), a silent auction and cash raffle. We will have a DJ in the morning and a band when everyone returns from the run. Also, even if you’re not riding, you can stop by and purchase a hand! Here’s the website that my brother did for more details: www.SteelHorsePokerRun.com. It’s going to be a great time and I hope if you’re in the area you can stop by and enjoy the fun! One of my Facebook friends, who’s daughter has CF will be coming out to meet us, I’m really excited about that! Here is her blog.

Thank you to Jim's donor and his family for letting enjoy such an amazing vacation!

If you are not an organ donor and would like to be one please click here and know that you'll be changing someone else's life along with their friends and loved ones just like us!

Countdown to the OBX!

2011-08-27T21:45:00.000-07:00

Right now we're sitting at home waiting to see what hurricane Irene plans on doing. Hopefully our house in North Carolina Outer Banks will be there when we arrive next week! Here are some photos from the last time we were there in 2009.

This will be our first year in the OBX since Jim received his new windbags. I'm so excited for:

No lugging of O2
No sounds of treatments being done
Not waiting for Jim to do treatments (normal ~6 hours out of the day)
Jim not getting tired (he will probably tire me out this year)
Walks on the beach (sounds cliche but Jim wasn't able to do a heck of a lot of walking)
Climbing sand dunes
Climbing the lighthouse

For those of you that do not know, Jim's donor was in North Carolina when we received the call for transplant. We've always loved NC but we now have an even greater love for it. I know being in NC this year will be even more special than ever before! Thank you to Jim's donor and his family for the selfless gift you gave! xoxo

Baby You're a Firework!

2011-08-21T15:33:00.000-07:00

Thankfully, there is nothing exciting going on as far as Jim's health goes! We've been busy living life. We enjoyed several concerts at Musikfest. I spent several nights with high school friends including some Team Sheldon peeps and my buddy Kirsten who lives in Miami. We enjoyed a party with great friends this weekend, the landscaping is done and the siding is almost done on the house... next step is a deck!

We had a nasty storm last weekend that got my art room in the basement soaked! I am concerned that there may be mold now. I'm thinking about planting my butt at Home Depot or Lowe's and wait for one of the home improvement dudes to show up and help out. Helllloooo HGTV...I'm here, I'm here!!! *waiving hands in the air, jumping up and down and smiling real big*

There still are things that happen (15 mos post tx) that I have "WOW"

moment with. A few days ago we heard fireworks behind our house. I let the dogs out and realized that the fireworks were very close but we had some large trees in the way. 15 mos ago I would have walked down the block to see them better, by myself... Not now, I called Jim out and we went for a walk

together to get a better view. All I could think was how amazing life has been since he has had his transplant. Yes, the first year was crazy with some

major roller coaster rides but it was all

worth it!

We have 3 baby bunnies that I have been watching grow for the past month. They finally have started exploring outside of their nest.

Jim is being honored at a CF event called "The Finest Top 20 Under 40". Check out his bio and fundraising page on the right hand side of the site. He needs to raise at least $1,500 which leads me to the event that we are having.

Details are still being worked on but we are having a Bike Run on October 23rd. I am hopeful that we will be able to raise funds along with awareness!

2 more weeks until we are on vacation in North Carolina! Can't wait to get away and enjoy NC like it should be enjoyed (no treatments or machines to be hauled in and out of the car)!

Picture #1: Shannon (part of Team Sheldon) and I

#2: Shannon and Holly (Team Sheldon)

#3: Me and Kirsten (distant support buddy and Maroon 5 lover)

As always, none of these days would have been so much fun without the help of Jim's donor and donor family! Life really is good!

Hey, what do you know, he never coughed!

2011-07-30T16:27:00.000-07:00

Today was a good day. I planned on clearing out some of the grasses that have been taking over one of our flowerbeds. I started, got a few pieces out and then decided to get help from Jim. I made sure he had a mask on while swinging the axe and he stayed in the shade away from the rays. This typically would have taken me at least 3 weekends and I may have not even gotten completed if I were the only one doing it. We hammered this clearing out in 3 hours. I continue to be amazed by everything Jim is able to do. There was a moment (when I was sitting and watching) that I was just waiting for him to cough like crazy after swinging the axe. I cringed inside thinking about it...

Hey, what do you know, he never coughed! Of course, I had to take video of this

Oh, the roof is done too! Next week will be new siding and landscaping and Thursday is when the cleaning person starts! Life is good!

If there are any wives out there reading this who's husbands have CF please send me a message (fahr.denise@yahoo.com) with your email address if you are interested in being involved in a CF Wives support page. I wish I knew these girls years ago!

Thank you to Jim's donor and his family for the selfless gift that allowed to enjoy this day! I wish Jim's donor could see how he has helped us.

Please click here to become an organ donor.

I Out Run CF (again)

2011-07-18T19:31:00.000-07:00

There will be another "I Out Run CF" run on October 1st which just happens to be Jim's birthday as well. Please let me know if you are interested in going for a run/walk. Distance or timing does not matter but finding a cure for CF does! Here is the blog entry from when I did the last virtual run. Registration is $25.

Ummm...Starbucks treat afterwards?

This past Friday we went to an Iron Pigs minor league baseball game. The field is about 5 miles from our house. Jim had is usual warm candied almonds and I had to buy a new pig nose. Yes, you read it right, a pig nose! I lost the one from 2 years ago. Sad, I know. :(

Saturday was spent cleaning up the yard and going for a ride in the convertible with my niece, Amanda (a/k/a The Rock) and her boyfriend. Sunday was also spent working in the yard for me and Jim washed our cars. My hamstrings are killing me from bending down to

spray the weeds that have started to flower. Ugh...I got very far behind on my gardening.

We are getting a new roof and siding on our house so that's the excitement for the week. Can't wait to see the final outcome. Here are some of the before pics.

47 more days and we're off to NC!!!

Lots of love sent to Jim's donor and his family!

Still going strong!

2011-07-07T16:18:00.000-07:00

Just realized it has been awhile since anything was posted on here. Who knows if Jim ever will again. Maybe, if you're lucky :)

Other than some minor Tacrolimus adjustments due to high lab results and abdominal pain, things have been going great! We are enjoying the nice days with long rides in the convertible, picnics, concerts and whatever else pops up.

I'm counting down the days to vacation in the Outer Banks of North Carolina (58 days)! The house is rented, just need to get the dogs to the vet and train them on how to use the ramp we bought for them to use so they can get into the Jeep easier.

This picture is from when we went last time, in 2009.

We missed our yearly vacation to the OBX last year since Jim was still on the mend.

This picture of me was in a previous blog post when I explained, through Tiffany Christensen's

perfect words, how CF affects me. Every time I see this picture the emotions that I was

having that day come right back. Jim and I took a really nice long ride down the peninsula of the Outer Banks. We went as far South as the Jeep could take us. At one point in the ride we got out so I could check out the views. I climbed a huge sand dune to check out the scenery. During my climb all I could think of was that I wish I didn't have to do it alone. I wanted Jim by my side, enjoying the view with me but knew there was no way in hell he'd be able to climb. I remember when I got to the top of the dune I could see the ocean on one side of the peninsula and the calm waters on the other. It was a breathtaking view...but I had no one to enjoy it with me. That made me sad...

So, guess what the first thing on the agenda is for this years trip to NC?

Lots of love to Jim's donor and his family!

Transplant Anniversary Party

2011-05-29T19:53:00.001-07:00

Saturday we had a gathering for all of our family and friends that supported both Jim and I through this crazy transplant journey. Here are some pictures:

My yummy chocolate martini!

Team Sheldon, Sheldon and The Rock

Chicken satay...or as some people like to call it "chicken on a stick" ;)

A girl I used to work with made the cake! I'm so happy with the way it turned out and it tasted amazing! Here's her web site in case you're interested. The lungs are cake and the trachea was formed with rice krispie treats! Purple ribbon for CF and green ribbon for Organ Donation Awareness. If you haven't followed the blog from the beginning, the reason for "Pristine" being on the cake can be explained here, here, here, here and here. Basically, it's the word that we have been using to describe Jim's lungs since he had his first bronch.

Our support crew! You have no clue how much we cherish all of you

Team Sheldon - Holly, Shannon, Michelle and Barb. You guys are THE best!

The menu with a special saying on it from J

Yet again, I thank Jim's donor and his family for giving us the chance to enjoy a special evening with wonderful family and friends.

Oh, this blog set up stinks. The comments aren't matching the pictures. Must make time to figure this out...

Mini Vacation

2011-05-21T18:42:00.000-07:00

So we got a new MacBook and I have to say that I do not like the way it works with this blog. I can't move the pictures around the way I want them.

Oh well...I'll have to play around with it later.

We had a great little vacation in Atlantic City.

We had a nice dinner at Bobby Flay Steakhouse at the Borgata. I ordered cheesecake for dessert. The waiter surprised us with candles on it for Jim's transplant anniversary.

We did plenty of walking on the boardwalk, in the casinos and LOTS of shopping at the outlet shops. Jim tired me out again!

We saw a free concert with the lead singer from Live at The House of Blues on Saturday.

Jim is having some serious abdominal pain and nausea today. He's been sleeping off and on all day. Thank God for pain and anti-vomiting meds!

Thank you donor and donor family for allowing us to have yet another great trip!

365 days later...

2011-05-19T07:43:00.000-07:00

...and things are going great,

Right now we're driving on the turnpike but it's for a totally different reason compared to last year at this time! We are on our way to Atlantic City for a little celebratory getaway. We've got a 2 night comp at the Taj Mahal.

Emotions are very odd today. There is a mixture of sadness for Jjm's donor and his family, fright because of the unknown, excitement and also happiness. Needless to say I was a bit shaky this morning and took a Xanex. As usual, I'm thinking of what we were doing last year at this time and what the donor family was going through. 11:30ish was when I got the call from Jim to come home from work because HUP called for an offer of lungs. Finally at 6:18 I was told it was a go and refused to believe it until I had the receptionist call the nurse in the OR to confirm again. So, it was a go and then the wait began. I can say that I was not really worried that Jim wouldn't make it through surgery. I think I was actually more relieved that something would happen. Good or bad, Jim couldn't continue living the way he was.

Today we celebrate Jim's gift of life and are so very thankful for his donor and his family. May they know that even though their loved one is gone, they are still living on through Jim and he is taking great care of them! And without a doubt we thank friends, family and all of our blog readers for helping this crazy journey be a little easier. Love you all dearly!

Now, on to enjoy out mini-vacation!

Normal

2011-05-07T19:54:00.001-07:00

So...it's been awhile since I blogged and even longer since Jim has. I figured I should probably post something even though things have been, dare I say, normal lately. Last night we went to First Friday in Bethlehem. I've been wanting to go to it for years but Jim was in no condition to walk around. But now...totally different story! We had dinner at an Italian restaurant on one end of town then walked several blocks checking out the different stores. Just another milestone in post-transplant life.

Jim's one year transplant anniversary is fast approaching and we already have plans to spend the time in Atlantic City with a 2 night comp room at the Taj!

There really isn't much to say. Things have been great!

Here are some new pictures from the celebrity bartending event last month. More to follow...

As usual, thank you to Jim's donor and his family for allowing us to enjoy the little things in life!

Please...click here to become and organ donor!

DASH

2011-04-18T16:36:00.000-07:00

Sunday was a day of celebration for some and bittersweet thoughts of loved ones for others. The mixture of people that attended the DASH was anywhere from transplant recipients, friends, families, healthcare workers, donor families and friends and people walking or running in memory of a loved one that is no longer with them.

This is a view of just the 5k runners.

There were over 7,000 people total. 1,446 did the 5k and 809 did the 10k.

Me and Michele before the run:

I used to work with Michele and her mother (Fran). Michele, her dad (Ron) and I were each others support systems when Jim and Fran were waiting for their transplants. Fran had an intestinal transplant just before Jim had his double lung transplant. Sadly, Fran passed away not long after her transplant due to complications. Transplant is a crazy thing but I have to say that I have met some wonderful people out of all of this craziness. Meeting Ron and becoming better friends with Michele is just one example.

Michele with Ron and her beautiful daughter, Matilda:

Thankfully it didn't rain but it was cold and windy so we kept warm in the Jeep until it got closer to race time.

Jim with Michele's little girl, Matilda:

Reaching the finish line:

DONE!

Me and Michele after the run:

We did it girl!

We were lucky enough to bump into Jim's transplant coordinator after the race.

As a right of passage, Jim did the steps at the art museum!

Jim would have never been able to do this before his transplant. He wouldn't even had been able to go from the car to the museum without struggling with the oxygen compressor, coughing and resting in between. Funny but there are still times when I am walking that I look back because I think I'm walking too fast for Jim. Then I realize that he is either ahead of me or right next to me. It completely blows my mind every time!

Thank you donor and donor family for again giving us the chance to enjoy another day together.

Click here to be an organ donor!

Celebrity Bartending

2011-04-16T13:08:00.000-07:00

Tuesday was the Celebrity Bartending event at Starters. It's safe to say that everyone had a good time!

Bartenders: Mike, Tracy, John (13 year post-liver transplant), Ralph, Jim, Stu and Dennis. Thanks again everyone!

I will have more pictures shortly!

Together with some great friends and family we made a difference! Thanks to Starters for allowing us to come out and use the bar to raise awareness for organ and tissue donation. Total fundraising for the night was over $600 with most of the money coming from tips alone! And about 6 or 7 people signed up to be organ donors! At the end of the month I will find out the total amount of donations that were received from the Dine to Donate program. So, any local people that plan on going to any of the Starters location in the month of April, please print out this voucher and give it to your waiter/waitress and a percentage of of your food purchases will go toward my fundraising. Next year we will make the event BIGGER and BETTER!

By the time we got home from the event Jim's legs were extremely swollen and sore:

Thursday we attended a cocktail party to benefit the Cystic Fibrosis Foundation at SOPHISTIKATE. They had a silent auction and 5% of each sale went toward the CF Foundation. They will also be taking a percentage of sales on every First Friday and donating it to the CF Foundation.

Tomorrow is my 5k DASH for Organ and Tissue Donor Awareness. This is my second 5k but the first one that I can say that I am prepared for. Last year it was interrupted by THE CALL. Trust me, I am more than happy that it happened when it did. I honesty don't think I'd be writing this blog right now if he didn't get that call because Jim would no longer be here with me. Ok, enough sappy shit. I'm going to run my butt off tomorrow and when I get tired I can always read my shirt (well, maybe not, it's a bit wordy):

I reached my fundraising goal of $5,000. Right now I am at $5,026! I didn't expect to raise $200. So again, thank you all again for your generosity! And thank you to our donor and donor family for allowing us to enjoy such a great time and allowing us to enjoy many more!

Click here to become an organ donor.

Amazing

2011-04-10T19:13:00.000-07:00

Amazing:

Adjective

amazing (comparative more amazing, superlative most amazing)

Causing wonder and amazement; possessing uniquely wonderfulqualities.
Jim's new lungs.

We said the word amazing several times this weekend. As the seasons change we are realizing all the things that Jim was unable to do pre-transplant but can do now! He washed 3 of the cars, inside and out! Little Red looks beautiful.

He also helped me move some heavy dirt (with an industrial mask on), cleared out the garage, brought the patio table out. All we kept saying was how amazing it is that he is able to do this. He never thought he'd be able to do any of this again. Oh, and he didn't even cough once!

We found a maple tree that popped up between some of our pine trees and decided to relocate it for future planting.

I couldn't find a large enough potter so I used the old tin garbage can. I like it! Eclectic or desperate. You decide:

Abby enjoyed a bone while we worked. Dharma chewed grass and followed me around.

Just a few pictures from my run on Saturday:

I went down to one of our local parks and did laps. It was a bit hard to stay motivated because everyone else was either having a picnic, fishing or just hanging out. But, I got it done. Only 1 run left until the DASH. If you are interested in donating click here.

Here are some pictures of Jim's bronch:

In this picture you can see the anastomosis from the transplant on the left.

This one is hard to read but it indicates that everything is normal other than some secretions that are in his nasal passages.

Today we heard back from Jim's transplant coordinator about his bronch results.

1. NO REJECTION! The last 3 bronchs showed A1 rejection but now he's clear. *huge sigh of relief*

2. WBC is up to 4.2

3. CMV is <200 (this is a good thing)

4. Tacrolimus level is 6.6 so they are increasing it by .5mg.

5. Pseudomonas was grown out in the sample they took - this is typical for Jim.

6. He also grew out staph aureus, which could be contributing to his sinusitis. They are treating this with Doxycycline.

Tomorrow is our celebrity bar-tending event. Wish me luck that we get lots of people to come out and support us. Team Sheldon and my Rock will be there along with friends and family.

Please say a prayer, send good vibes or whatever it is that you believe in for my friend who lost her grandmother recently. They were very close.

Thank you donor and donor family for such an amazing weekend!

Please, click here to become an organ donor!

Quiet

2011-04-04T16:05:00.000-07:00

Things have been quiet lately, I'm NOT complaining and lets keep it that way!

Jim is still having stomach issues and his belly is still very bloated. He has his ups and downs but for the most part things have been pretty good. He has a bronch on Friday so soon we will hear if the A1 rejection is gone *fingers crossed* or not. I'll take not, thank you!

I am still training for a 5k on April 17th in Philadelphia, PA for Organ and Tissue Donor Awareness. If your interested in donating click here for info. 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. ;)

And here's the shirt I will be wearing for my run:

The weather is FINALLY starting to get nice out. My last run was along the Lehigh River with lots of fisherman nearby!

Also, if you live in the Lehigh Valley check this out! Celebrity bartenders on April 12th from 7 to 9pm all tips go toward my fundraising. Also, any time in the month of April (as long as you use the voucher on the form) 10% of food purchases will be donated to my fundraising (5% on Fri & Sat). So come out, eat and have Jim serve you a drink! I'm having Jim learn how to make a chocolate martini. If it's good I may just give him a tip. :)

So, what's new? We're getting some things done around the house that have been put on hold for a few years. First up, getting the paver steps fixed. We got a bad batch of blocks for our steps and they started deteriorating in the past few years and after this past winter, they're just dangerous! Here's what I came home to today:

Jim's been feeling well enough to do some projects around the house. He hung some blinds that we recently ordered. He had to stop at 3 because his muscles were getting sore. Oh yea, the dogs...they've got a rough life!

Next up will be a deck, new siding on the house and a brick mailbox.

New pill sorter for Jim. It's a month supply:

Fun stuff!

And, in case you were wondering, Mini Me is doing fine and I love her!

That's about it for now. Please send out positive vibes that Jim's bronch is clear!!

Much love to Jim's donor and donor family!!

Be someone's hero and become an organ donor by clicking here!

10 months and "I Out Run CF"

2011-03-21T14:23:00.000-07:00

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 "I O utRun 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!

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

2011-03-09T15:30:00.000-08:00

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

and

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.

Rejection & Vacation

2011-03-03T19:37:00.001-08:00

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.

OUTRUN CF in your backyard!

2011-02-23T18:44:00.000-08:00

Some new things:

#1:

Jim is returning to the workforce on Monday!

#2:

I'm back in training and will be doing the Out Run CF-Virtual Run! The walk/run/stroll or whatever it is that you care to do is on 3/20/11 and the track is wherever you decide to have it. Pretty flexible, huh? Yes, yes it is! The official event will be held in Grosse Ile, MI.

I know this is last minute but I would LOVE to set up a team here in Bethlehem, PA to get out and show awareness and Out Run CF!

So...who's with me?

Leave a comment with your contact info and we'll work something out! If you cannot join me and wish to make a donation please let me know!

Here are some details:

Registration Closing Date

Saturday, March 19, 2011 @ 11:59 PM, AFTER MARCH 1-NOT GUARANTEED A TEE SHIRT BEFORE THE RACE.

Brief Description

The RocK CF Foundation and CysticLifeare joining forces to Out Run Cystic Fibrosis and you are invited to help! If you are not running the Rock CF Rivers Half Marathon or 5K March 20 on Grosse Ile, MI but you still want run with us, this is YOUR race! On March 20 you will find a route or race by your house, lace up your joggers and hit the road in your Out Run CF shirt.

Join over 100 others across the country that are Outrunning CF in their hometowns on March 20th. It only costs $20 - you get a cool "I Outrun CF" shirt and proceeds go to immediately impact the lives of people with CF!

Tee Shirts

We cannot guarantee an Out Run CF shirt for race day if Registration is after February 25. Shirts will be mailed after if this is the case.

Check us out on Facebook!

http://www.facebook.com/pages/Out-Run-CF/164020056961598

Additional Information

You choose the mileage. 1 mile? 5K? 10K? 10 Miles? Half Marathon? Marathon? It's up to you! Nothing is too short or too long, too fast or too slow. REGISTRATION AFTER MARCH 1-NOT GUARANTEED A TEE SHIRT BEFORE THE RACE. Report back to us at CysticLife.org!

More Information

Click here to view the event organizer's website

Check us out on Facebook!

http://www.facebook.com/pages/Out-Run-CF/164020056961598

Check this blog out! Dax of San Diego, CA will OUTRUN CF! So far 34 states are represented!

And here's the shirt. I love it, it's comfy and not black. Black shirts with yellow labs don't always go well together.

I started running last year because of the anger and anxiety I was having while Jim was on the transplant waiting list. I never ran a day in my life before that. I ran my very first 5k last July. I sturggled to finish the run because while in training for it Jim got his real call for transplant. Here are my blog posts from that time:

http://fahrjr.blogspot.com/2010/07/5k-tommorowbecause-i-can.html

http://fahrjr.blogspot.com/2010/07/beautiful-day-for-walkrun.html

#3:

Jim had his appointment with the nephrologist today. They will be doing an intrajugular biopsy to determine what is going on with his liver. The MRI showed that his liver had some nodules but they do not use the MRI as a diagnostic tool. So, in a few months he will have that test done. The nephrologist doesn't seem to concerned with things. All of his lab results have actually gotten better since his transplant. Friday he will be having a bronch.

Thank you donor and donor family!!!

To become and organ donor click here.

Home and ready for some "NORMALCY"!

2011-02-13T18:05:00.000-08:00

We got home yesterday evening after:
- My 8:30am abrupt wake up call/evacuation from the hotel. Ummmm...I was on the 17th floor and my calves are now killing me from going down 17 flights of steps. Thankfully it was a false alarm and I was able to take the elevator back up to my room.
- 2+ hour wait for doc to finish up the paperwork for discharge. Anyone know why it takes so long???? Last time we waited at least 8 hours for the paperwork.
- Getting the car jumped. Yep, finally discharged and the getaway car won't start! Thankfully, Jim's dad was there to help us out and follow us home to make sure we didn't have any problems getting there.

That evening ended with Jim breaking off the key in our back door.

Final diagnosis: gastroparesis, pancreatic cyst and fibrotic liver. Plan: meet with pancreatic doc to discuss cyst. Keep an eye on the liver (don't know who he'll see for that) and follow up with tx pulmonologist. Reglan for gastroparesis and Zofran as needed for nausea. He missed his bronch on Friday so he'll need to set that up soon. Lungs, sound great!

My day today consisted of sleeping in, a visit from my parents, trip to the drug store for Reglan and Zofran and then to Wegmans for groceries. After that I did a little cleaning and am now watching the Grammy's. I always find that for a few days after Jim comes home to be the most stressful. I think I try to keep everything together until it's calmed down then I have a bit of a breakdown. Any other CF spouses or family members have that happen to them? Same thing happened after his transplant. I had a few weeks of a Chron's flare up once everything settled down with him.

I am ready for "normalcy"!!! Consider everything OK if you don't see posts for awhile. I need to focus my energies on something fun and put this health stuff in the back of my mind as much as possible so I can keep on keepin' on.

Donor and donor family, thank you! Regardless of any of this crap, Jim is still here and we can enjoy a much better life together because of your selfless gift. For that I am extremely grateful!

Cyst, MRI, fluid, liver fibrosis, needles and other fun stuff...

2011-02-11T16:12:00.000-08:00

Jim woke up in painand was nauseous this morning so we are still here. The MRI done last night showed that the pancreatic cyst IS still there, his liver is fibrous (common occurrence for a CF'er) and that he has fluid in his abdomen. The docs wanted to find out if the fluid was an infection so a procedure was planned for a needle aspiration. The aspiration never occurred because when they went to do it, they were unable to find a pocket of fluid big enough that was away from major organs. GI doc stopped by briefly and mentioned LASIKs or beta blockers as a means to get rid of the bloat. We are still waiting for him to come back to discuss next steps. As far as the pancreatic cyst...we have no idea what the plan is. It does seem that the gallbladder is out of the picture, for now at least.
Not much joking going on today, we're both pretty much want to get this figured out and get back to a "normal" life.

Me waiting for Jim to come back from eating his radioactive eggs.

Tomorrow's another day. Maybe we can bust out but he is still having pain.

Radio active eggs, again.

2011-02-10T17:31:00.000-08:00

Trying to make t is a short one. I don't like typing on this iPad. :/
Today consisted of a gastric emptying study and an MRI.
He had to eat radio-active eggs for the gastric study and pictures were taken of his stomach periodically to see how fast the food moved through. The test showed that he is having an episode of gastroparesis. With that diagnosis the doc's recommended at he try a med called Domperidone. Domperidone was pulled from US shelves so we have to purchase it from Canada. Apparently this med is safer than taking the Reglan that I mentioned in yesterdays blog post. He had an MRI this evening and hopefully we will have the results of that early tomorrow.
His diet has been advanced and he does have a bit of pain after eating. They took him off of the Dilaudid (IV pain med) because the last dose he received put a large welt on his arm where the site of his IV is. They are giving him Oxycodone orally in place of it.
Almost forgot. The doc told us today that when we came in Tues. the doc was concerned that it may have been "catastrophic". Thanks for not sharing that info until today doc...i appreciate it but if it happens again I may not believe that the "rapid response" is "procedural".
Hopefully we will get out of here tomorrow!!

Rapid Response?

2011-02-09T17:38:00.000-08:00

I just deleted a huge blog post so I'm just a bit annoyed. Here is an abbreviated version of the past 2 days.

I woke up Tues am to find Jim downstairs sick, was retching since 2am. I went to work since he was doing ok, just ok. Got a text at work saying "I need you, please". Got home, he was retching and had sever abdominal pain. I called the tx coordinator and was told to come in and she would be getting a hosp bed ready for him. I grabbed all our bags (prepacked since this has happened before) and drove Jim to Philly, docs looked at him and decided to call a "rapid response". A rapid response will ensure that you are sent to a secluded ER room without having to wait in a germy ER waiting room (and also ensure that I get completely freaked out). The docs told us to expect people to be showing up to check him out and transport him to the ER and not to worry. Well... people came from all over the place within minutes checking him out. Docs, nurses and even security! The heads up was appreciated, but it still scared the crap out of me. Thankfully I had Jim's transplant coord next to meet hugging me and telling me it was ok and just procedural. After he was checked out they transported him from the Lung Center, across the bridge and down to the ER (about 3/4 mile away). There were security guards at EVERY turn keeping people against the wall in single file and out of the way for us to get through. It was very impressive to see how well they respond to emergencies. Scared the crap out of me but also comforted me knowing he was in the best place possible should there be something even more serious.

In the ER they put an IV in, took lots o' blood and gave him Zofran (anti-nausea) and Dilaudid (for pain) meds. Within 20 minutes he was comfortable. Once the meds started to wear off he started with pain and retching again so the gave him more. We were in the ER from about 2pm to 10pm when a room finally opened. Not bad considering the last time this happened we were in the ER for 22 hours! While waiting for a room he had 2 abdominal ultra sounds. We had a good time messing with the residents too!

Trying to make a long story short since I wrote this once before...they will be doing a CT scan at some point to check his entire abdomin since they only checked his upper right quadrant when they did the 2 ultrasounds last night. Doc's are thinking that this is the gastroparesis (slow stomach emptying) again and started him on Reglan which helps with motility. The GI doc's awhile ago took him off of it because long term usage can cause bad neurological issues. Now the GI doc's seem to think it may be a good idea to use Reglan when he starts with these issues again, but not as a daily regime. He is still getting Zofran and Dilaudid and is on a liquid diet. We'll see what tomorrow brings. Hopefully it's more productive than today!

Thanks so much to all of our friends and family that have taken care of our dogs and kept us entertained while going through all of this. Love you guys! Just a bump and things will be better!

Quotes:

ER doc: Do you want some pain meds?

Jim: Absofuckingoutly!

Jim while doc was doing the ultrasound: I don't want to know the sex.Just deleted a huge blog post so I'm just a bit annoyed. Here is an abbreviated version of the past 2 days.

This is what a rapid response looks like:

The case of the mysteriously missing pancreatic cyst

2011-02-04T15:41:00.000-08:00

Jim had his EUS last Friday and the cyst on his pancreas has seemed to disappear. Yep, it's not there and we have no idea why. Next Friday he'll be meeting with the surgeon to discuss what his thoughts are about the disappearing cyst. Pulmo doc is in no hurry to have his gallbladder out and neither is Jim. He will also have a bronch next Friday.

Funny thing happened when I came home from work the other day...

I didn't see Jim in the kitchen so I looked to see if his O2 line was in the bathroom. What???? He hasn't had that thing for 8 months! Yes, it's been 8 months since his transplant and there are still eye opening moments. I like it though, it certainly keeps things in perspective.

I've been scanning a lot of pictures lately and you can't have a blog post without pictures - right? So...here are a few pictures from 2000 when we went to pick out our Christmas tree at our dog breeders house.

24th Annual Cystic Fibrosis Beach Bash!

2011-01-30T17:57:00.000-08:00

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 it...love 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!

Quick update

2011-01-24T16:30:00.000-08:00

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.

What's in my head?

2011-01-19T17:25:00.000-08:00

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.

Friends and Fortunes

2011-01-08T10:12:00.000-08:00

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!

A Year in Review

2011-01-01T08:55:00.001-08:00

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!

Merry (2nd) Christmas 2010!

2010-12-25T18:26:00.000-08:00

Christmas Morning at the Fahr's

Dharma poked her head into the pic!

I already received the best gift in the world on May 19/20, 2010! The gift of life for Jim. I really wasn't sure if Jim would be around for Christmas this year... This is a very special Christmas filled with joy of a new life for Jim and also sorrow for Jim's donor's friends & family. May they know that their loved one is still living on and allowing Jim to breath easy and also enabling us to enjoy a whole new world of possibilities!

OK - First things first:

We went to HUP last Turs. Jim got a CT scan of his chest to try and help identify why he has so much pain in his sternum. The scan came back normal. The doctor showed us the scan slice by slice and said Jim's lungs look "beautific" (I guess that's a cross between beautiful and terrific). Since the CT scan didn't show anything worrisome they are going to wait it out a bit and if he still has pain when he returns mid Jan they will have the surgeon take a look at him. Dr. Hadj. said that it was probably from all of the retching he was doing the week before. Upon examination he said it felt like bone growth may be happening around his sternum or wires could be poking or changing their position.

CMV levels are going down more which is a good thing. He is at 491 but they need to get him to 0. Once he hits 0 they will continue him on the Ganciclovir for 2 weeks and then do monthly infusions of CMV IG. His white blood count is working its way up to where it needs to be as well. As far as the A1 rejection goes, Dr Hadj said that often the CMV may look like A1 rejection when the pathologist looks at the cultures because the CMV has the lymphocytes that they find in A1 rejection. Another bronch will be done near the end of January so hopefully by then the CMV will be in check and there will be no sign of any sort of rejection.

After the holidays Jim will be getting an ultrasound on his right leg as it has been swollen off and on lately. Dr Hadj wants to make sure this is nothing of concern going on. He also will need to have his gallbladder removed since he's got a "bag o' stones" in there.

Doc also said that he has a little bit of CF liver disease but not enough to say much about.

And the best part about the visit? PFT's are at their ALL TIME HIGH since transplant!!!

While Jim was speaking with one of his doctors we also heard that our transplant coordinator was in the process of coordinating a transplant for someone. The hospital has done 7 transplants in the past week and a total of 51 so far in 2010. Check out these statistics and you can get a

better feel for how luck Jim and I are! To be honest, I really wasn't sure if Jim would be around this Christmas or not.

Christmas Eve at my brother and sister-in-law's house

Jim and my dad a/k/a Pop Pop

Me and Amanda

Abby and Dharma opening their gifts:

AbbyDharma

Jim and Dharma

This is Zoey. Isn't she the freakin' cutest kid you've ever seen? She is our step-niece's daughter. We met her for the first time at Jim's mom's house for Christmas dinner last weekend.

And now for a few notes from Jim (as copied by me from his Facebook page)

Feeling so happy and sad today. Happy for myself, friends and family but sad for my donor and their significant others. I would love to reach out to them today to show them what they have given me. I'm so happy to be able to experience life again, joke with friends and family... basically be back to myself.... Merry Christmas all!!

Merry Christmas everyone, sitting here running my IV before waking up Denise and reflecting. Its been one hell of a year for many of us. Some are doing quite well, and others are still suffering. I hope this season brings a reprieve for all. This is the first Christmas morning in my life that I did not have to do any respiratory treatments, still amazes me.

If you are interested in looking at all of Jim's transplant pictures here are 2 site you can check out:

http://gallery.me.com/fahrjr/100047

http://gallery.me.com/fahrjr/100037

Last but not least, thank you to Jim's donor and his donors family. Click here to become an organ donor!

On our way home.

2010-12-08T16:07:00.000-08:00

Well, we are on our way home now. Thankfully the advancement in his diet went fine and he had no pain, nausea or vomiting.
That's all folks.

There's No Place Like Home

2010-12-08T08:48:00.000-08:00

Looks like he may be getting out later on today. Doc was just in and will be advancing his diet to make sure he doesn't have pain or starts puking again. Doc is thinking it could be his gallbladder. One of the tests showed that it was inflamed. May need to have it removed in the future. His CMV level also dropped to 800.

No Answers...yet

2010-12-07T19:44:00.000-08:00

Hopefully all of this makes sence since I am a bit sleepy...
The doc's were in later this morning (Tues) and really don't know what the deal is yet. Initially they thoughgt the CMV could be affecting his stomach but, they have basically ruled that out (from what I understand). A CT scan was done and we are waiting for the docs to review that yet.
Dr. H is glad he has been doing well prior to all of this. His labs have been improving -CMV level down to 1253, even before he started the IV ganciclovir (quite odd), and WBC is up to 2.4 as of last Friday.
Jim said that he feels the same as the last time he was admitted here.
Dr. H says it could be a CF obstruction that will work itself out, gastroparesis, gallstone flare that has cleared itself up. There is a chance that he may have to get his gallbladder out in future. They still need to look at recent labs, X-rays and CT scan and still do not know if he is resistant to the Valcyte.
Good news is that he is no longer in pain or vomiting! When they did the CT scan he had to drink radioactive apple juice and was able to keep it down. He also had some jello and water with no problems. My thoughts are that they will start advancing his diet and see how he tolerates it.
I wasn't in when Dr. L came but he didn't have much more to add to the puzzle. So, we'll wait to see what the tests say and how Jim feels and go from there.
On a good note I was able to visit a CF buddy of ours today. She is 2 floors ablove us and plans to bust out tomorrow! Yay Alyssa!!!! By the way Alyssa, you really need to updat that blog of yours. ;)
And last but not least, thank you donor and donor family!

Another Bump & at HUP

2010-12-07T07:24:00.000-08:00

I got a text from Jim yesterday to come home for lunch because he was having abdominal pain and vomiting. I assumed he just wanted me to stay with him for a bit. When I got home he was bent over in pain, was vomiting and almost passed out on me a few times. I called his transplant coordinator at HUP and she said they want him admitted. Initially I was going to drive him down but since he almost passed out my brother came over to drive us down. When my brother got here we decided that, since Jim was in so much pain, we'd go to the local hospital first to stabalize him before the trip to HUP. The local hosp did labs, X-rays and an ultrasound. There was a concern that there may be a bowel obstruction or that the CMV was causing the problem. Potassium was low due to vomitting so they gave him some iv potassium. Results were negative on ultrasound except for gall stones that we knew were already there and they do not seem to be an issue. They gave him some pain meds and anti-nausea meds and finally, by 8:00 pm, we were on the way to HUP via ambulance. We got stuck in traffic and didn't get to the HUP until after 10:00.
I had plans to stay at a hotel last night but decided to just stay the night at the hosp since he seemed too uncomfortable. Slept off and on while nurses were in and out with pain meds, checking BS and taking labs periodically. This morning HUP did an ultrasound and we have not heard any results yet. Doc's have not been in yet either.
Right now Jim is sleeping comfortably. Once the docs get here I will prob check into the hotel and grab a quick shower. Then pit-stop to Starbuck's for me and another CF friend that is 2 floors above us.

Thanks(for)giving!

2010-11-26T18:59:00.000-08:00

Well, I guess everyone knows what we are thankful for this year!

Thanks to Jim's donor and donor family, this Thanksgiving is extra special this year considering we weren't quite sure if he would make it to Thanksgiving 2010. *wiping sweat off of forehead*

The visit to HUP on Wednesday went ok. Dr. H told us not to hit the panic button yet. Jim will be going to get lab work on Wednesday to check his CMV level. If it stays the same or goes down the plan will be to continue on the Ganciclovir for another week. If the levels increase then Jim will be hospitalized while they give him weekly doses of Foscarnet. Dr. H told us that even though the dosage is weekly he still must remain hospitalized because the Foscarnet is very toxic on your kidney's and could lead to renal failure. We are both keeping our fingers crossed that the Ganciclovir will kick CMV's ass! So, we are taking it one step at a time and hoping for the easiest outcome. On a good note, Jim feels great!

THANKSGIVING DAY:

Jim woke me to tell me that is was snowing! Woo hoo! Ski season is just around the corner!!!

Abby

We celebrated Thanksgiving this year at my brothers house and we will have a 2nd one on Sunday at Jim's mom's.

The Bird

The apple pie that my sister-in-law, Jan, made. It was delicious!

Jim and Amanda

The traditional picture of dad cutting the bird.

This morning the fall decorations were put away and the Christmas ones were brought out. This year is MUCH different than past years. This year Jim is able to help me with so much more! Ummmm...maybe he over did it this year... I came downstairs to see him with a big smile on his face while telling me he brought the tree up from the basement. Not a wise decision since he does have a PICC line in. Ugh!

This evening we went downtown to see the official tree lighting in Bethlehem. It was amazing having Jim with me, walking around with no problem, no coughing and no O2! We looked at each other several times delighted that we are able to do this together again. After the lighting we walked to some of the shops around town (yet another thing that would not be happening right now if it weren't for Jim's donor and donor family). It is hard to describe how great it felt to have him with me. I am so used to going places and doing things without him and now that he can, well, words can't describe how awesome it is!

The tree is up but not decorated yet. Jim just finished fighting with the lights. I think all is good now. Just DON'T TOUCH THE TREE or a strand may go out!

Thank you donor and his family for allowing us to have such an awesome day!

Click here to become a donor. It's so easy and can help so many!

CMV, A1 Rejection and PICC

2010-11-23T15:11:00.000-08:00

Yesterday we received some mind numbing news. We found out that my bronch showed A1 rejection (the lowest type) & that my CMV level is over 4100 (should be 0). Needless to say, Denise and I were beside ourselves trying to understand all of this since I have been doing so well. My PFT’s are at their highest level since transplant, weight is up, and I am feeling great overall. All the healthy markers coupled with the bronch last Friday that showed the pipes looking great with no secretions or gunk at all you can see why we would be optimistic.

With all this in mind hearing that a level that should be 0 showing up at over 4100 sounds crazy, right?! Well, maybe not…

I was talking to the home healthcare fellow and he made us feel so much better. He asked me what my CMV level is. When I told him the fellow said that it’s not bad at all. He said they have 4 other transplant patients currently on service and all are much, much higher; the highest being 36000. So then the next time I spoke with the transplant coordinator I asked her about this and she said they have seen people with numbers over 200,000 that pulled through just fine. So now we have a bit of relief. We also heard from our many transplant friends on Facebook who have had numbers in the 100,000s or higher early on and are now 8 years or more post transplant.

Initially, HUP wanted me to get admitted right away to start treatment, but I was able to talk things out more. Everyone knows hospitals are dead on weekends and holidays anyway so I would just sit there with my thumb up my ass wondering why I was there anyway. I have done home IVs myself more times than I can count already, what is one more session.

So the plan we settled on is have a PICC line inserted (done this afternoon at our local hospital) and start IV Ganciclovir at home. Tomorrow we will head to Philly for blood work to see if the reason the CMV numbers are up despite being on prophylactic Valcyte (med that is supposed to keep the CMV in check) is due to some resistance to it or a wrong dosage. We will also see the transplant coordinator or doctor just to touch all the bases.

For those of you who don’t remember or started following the blog post transplant, my body did not carry the CMV virus but the donor lungs did. We knew this when we accepted the offer of lungs and had to sign a release. We were advised to take the lungs with my blood type being rare they thought it was well worth the risk.

As far as the A1 rejection goes, they will not be treating that at this point. It is not unusual for them to not treat A1 at all. Sometimes they just do a follow up bronch sooner than usual to see if it went away. If they do decide to treat it they would just give me high doses of Prednisone anyway.

We are used to the “normal” CF craziness but the post-transplant complications are all new to us so this is tough. Many of our CF blogging and Facebook friends have been very helpful in providing us with their feedback and personal experiences. Thanks guys/girls!

This a prayer shawl that I received from several different Lutheran churches in Louisiana. With each stitch, a prayer was made for my health.

Sappy

2010-11-19T18:46:00.000-08:00

Well, in about 2 hours from now Jim will have had his new lungs in place for 6months! Yes, that's right...6 months!!!! :)

It seems like just yesterday we got THE CALL! I don't even want to think about where we'd be now had he not received his gift. Every 19th and 20th of each month I get sappy, or maybe I should say sappier than normal. I also read the blog entries from those days and it brings tears to my eyes. I am so happy Jim started the blog and that we can look back and remember these special days of our lives. It amazes me how far Jim has come! Those days were both awful and amazing at the same time. I feel blessed to be with Jim on this journey and it had definitely given me an entirely different way in which I view life.

We were at HUP today for Jim's 6 month bronch.

Doesn't he look great?

100% O2 saturation!

When the procedure was complete the doctor came out and told me that his lungs look beautiful. We will have more results on Tuesday. After they do the bronch they always take an x-ray to make sure everything looks ok. Here it is:

The brown spot on the right lung is just a glare from my camera. It is just as clear as the left lung.

Here are the results of his bronch and pictures they gave us:

2 weekends ago we went to see Dave Matthews. The show was great!

Jim (with much help from Amanda) had a surprise birthday party for me and yes, I was surprised, sort of.

Me, Jim and Amanda

Amanda, my mom and I went to NY last weekend to see the Christmas Spectacular and a great time!

Thank you donor and your family! Click here to register as an organ donor, please!

Good Stuff (Jim) and Bad Stuff (cat)

2010-11-05T18:16:00.000-07:00

On a good note: On Friday Jim blew the best numbers yet on his spiro! Woot hoo!!! FEV1 3.44 & FVC 4.02.

Quote:

"Anything more from here is just gravy." Jim regarding his current lung capacity.

The rest is non-health related:

On a really bad note: We had to lay our cat of 14 years to rest on Thursday.

It was completely unexpected. She was diabetic and had thyroid problems and was doing fine for a long time. Then she started to loose weight and wouldn't eat. We took her to the vet thinking that her meds needed to be adjusted again since that was what they did the last time this happened. The vet looked at her ears and said they were jaundice. Something was wrong withher liver. He said it could have been a fatty liver. The only thing he said he could do for her was have her stay at the hospital, give her fluids via IV and then would have to put a feeding tube in in the morning to try and get some nutrition in her. After he mentioned feeding tube I blockedout everything else he said. I let Jim do the listening.

Long vet visit short, she lost about 3 lbs in less than 3 weeks. After possibly getting her strong enough he would then have to go through numerous tests to find out what was going on and then we would have to put her through a treatment plan.

She was the type of cat that would purr as soon as you looked at her. People that didin't even like cats thought Torri was sweet. She was my sidekick and I often called her my "puppy-cat"because she followed me around like a puppy. If we called her name she would always reply back with an inquisitive meow. She was very vocal.

She loved to lay in different directions and places:

Over the back ofsofa

In baskets

Bed

This is when she was young and her and Phoebe got along. Phoebe had cancer and we had to lay her to rest just 7 months ago. :(

We call this picture "Big head, little body"

The dogs bed

Her bed from Grandma Fahr

Scratching her face on the Christmas tree.

She studied with me. Usually she would rest her head on my wrist while I typed.

With her stuffed animal "Buddy"

She purred until the very end...

The last 2 pictures were taken when we were at the vet waiting and wondering.

I miss her terribly, as does Jim, and many tears have been and continue to be shed by both of us.

Breathing Easier...

2010-11-03T16:57:00.000-07:00

@>-----------

Yesterday evening the CF community lost one more person to this shitty disease and that's ONE TOO MANY! His name is Gessner Brown and he has gone through one hell of a fight. I got to know his wife Lisa through one of the transplant websites that I am a member of. She was the second CF spouse that have ever spoken with. Please send Lisa strength to get through this horrible time. Gess was in the process of getting listed for a liver and double lung transplant but his deteriorating health did not allow him to make it to the post-transplant side of CF.

Breath easy Gess! Lisa and family, hang in there...

Wow! So that's real?!

2010-11-01T15:26:00.000-07:00

Friday night was Trick or Treat in Bethlehem & guess how many trick or treaters we got? Zero!

So, yes, we had more than enough candy... Thankfully we were prepared!

Saturday night we went to a Halloween party.

There were some really great costumes. Jim went as a transplant patient and I went as his surgeon. He wore his original bracelets from HUP and I used the original stethoscope that was in his room. The party was packed so the mask that Jim wore for his costume fit in perfectly.

Several people commented on our costumes. When Jim said that he had a double lung transplant initially people thought it was just talk, you know, he was playing the part of his costume. When Jim said that the scar is real people were amazed. The common response when looking at Jim's chest was: "Wow! So that IS real?!"

As usual, we compared some of the differences from last years party to this years. Last year Jim was carrying his portable oxygen and wasn't able to walk down to the basement because he would get way too out of breath. This year...he was up and down the steps SEVERAL times with no problems! Another difference, not a good one, is that Jim wasn't able to eat any of the food setting out this year, and it looked sooooo good! He is unable to eat at buffets. There a chance of infection with buffets because people are hovering over the food and possibly touching it. So he wasn't able to partake in the food. I wasn't either though. My stomach has been bothering me for a bit lately but is starting to feel much better. I don't know why since I don't have any major stress going on now. I would have thought that I would have gotten sick when Jim was in the hospital in May but didn't. I spoke with Jim's social worker at Morristown Hospital this week and she mentioned it may be sort of PTSD. My body is finally saying "What the hell just happened?" I can say from time to time if Jim coughs my mind jumps back to the old CF lung days when after the cough would come gasping for air. It's not something that is easy to forget but is getting easier as time passes. I know he has new pristine lungs (thank you donor and family)but I think since I can't actually see them sometimes it's hard to really believe it. It's hard to explain but I'm sure some of you with loved ones that are post-tx can understand.

To add some humor to this, here is a picture of MORE candy Jim came home with today. This time it was only 2lbs compared to the 3+ lb that he had to have for all of our trick or treaters.

Health status:

Jim had a biopsy on his chest and is awaiting results. Other than that things are going great (knock on wood)!

Please consider being an organ donor! Click here to do it. It takes a few seconds to become a donor but can put years on to another persons life!!!

Busy Weekend!

2010-10-23T20:49:00.001-07:00

Friday night:

We went to a CF Gala called The Finest Event, Top 20 Under 40. The event honored 11 people that raised at least $1,500 for CF!

Smiles

Jamie and Shane Remaley spoke about the CF battle they are fighting for for their son Radek. Radek was named the Child Ambassador for the event and is quite a doll!

I met Jamie this summer when I found out she was having a fund raising event for Radek inBethlehem, PA. Later on we found out that my brother knows Shane...small world!

Saturday:

We went to an event that is held yearly in downtown Bethlehem called Doggie Days. There is a dog costume contest, dog parade, dog games and vendors selling anything from homemade pet treats to grooming services. Jim and I helped judge the costumes and boy it was tough! There were almost 200 dogs to judge.

Barb and Holly from Team Sheldon with Holly's dog Harley.

Owner look-alike

Cruiser, my brothers Bichon Frise.

Chester and his owner and my friend Chris. Chester is a mixed breed and is super sweet!

This dog was awesome and won for "Most Scariest". He didn't move at all.

Awwwwwwwwwww...

A Grenadier mascot copied from Liberty High School Grenadier Band.

This guy was adorable. His owner made this Philly Phanatic costume. He won for "Most Creative"

Barb with a big smile after purchasing some chocolate from one of the local shops.

Jim probably on Facebook talking to one of you...

Saturday Night:

We headed over to a friends house for a party. I got to see several ex-coworkers from Guardian. It was so great to see everyone!

On a health note...

All is well. Jim still gets a dry cough and vomits every once in awhile. Dr. H says it's partially due to his hernia and diaphragm issues and is normal.

Become a donor here. Just a few clicks can change the lives of so many! Not just the recipients but the recipients friends and family members!

That's all for now folks!

Right about now...

2010-10-19T18:02:00.000-07:00

...5 months ago, Jim would have been in surgery getting his new PRISTINE lungs put in place!

He went from looking like this:

To this:

within 5 months. How freaking amazing is that???!

5 months and a day ago was just an average day in the Fahr household...me wondering when the real call would come, worried about how long Jim would be able to live the way he was...constantly on O2, coughing and gasping for air.

Jim summed it all up today when he said "Dreams do come true!" And check it out, these numbers don't lie:

To sum the above up...his lung capacity has increased by 3% overall!

Dr. H showed us the difference between his CXR from September 28th to the one he got taken today and those new windbags look amazingly better and more defined!

Dr. H also showed us a pic of his new lungs just after transplant surgery. They were very cloudy and undefined because of the PGD issue. Thankfully we did not see that picture back then! So I guess you could say that Jim and his new lungs are getting along just fine.

Last week Jim went to the dermatologist because of the spot that he has had on his chest for a few months. Originally our family doc though it was a fungal infection and told him to put Mometasone cream on it which didn't help at all. The dermatologist decided to take a few hair follicles that were on the spot and then scraped some of the skin off and sent it to be tested.

It will take about 2 weeks to see if any type of infection or fungal growth is found. If all is clear then they will do a biopsy. It is doubtful that it is a fungal growth since he is already on an anti-fungal med (v-fend) for the aspergillus that was found in his last bronch.

Quotes:

"I should have been dead so may times over in my life. Do you know how weird that is?"

"I'm stoked!" Jim - regarding his PFT and xray results.

All of this would not have been possible without the help from Jim's donor and his family...thank you!

Click here to register to be an organ donor!

Prednisone Munchies

2010-10-09T20:34:00.001-07:00

I didn't plan on blogging tonight but took these pictures and thought they needed to be shared.

Jim does the grocery shopping now so he made sure we were stocked up for when the trick or treaters come for Halloween.

Too bad that we've only had one trick or treater since we moved here in 1998 and it was our next door neighbor. So, basically, Jim gets the candy for himself saying that he wants to make sure the "kids" have candy when they come on Halloween. Tonight we came home from dinner and he had what we like to call "the Prednisone munchies."

Here he is with his 3.33lb bag of Laffy Taffy, Bottle Caps, Sweet Tarts and Nerds.

You can tell that he's an only child based on the note he puts on "his" candy. Too bad for him that with me coming from a family with 2 older brothers, notes mean nothing! If there's food in the house, whoever gets to it first wins. My saying is "You snooze, you loose." Amanda and I like to purposefully eat the strawberry Laffy Taffy because that's his favorite!

All is well here. Jim has a little bit of a dry cough that is completely freaking me out. He's been waking up at night coughing too. Jim mentioned it to his transplant coordinator and she said as long as it's not a productive cough that he should just make sure he stays hydrated. If he becomes congested he should use Mucinex and if he develops a productive cough Dr. H wants him to use Cayston or Tobi via nebulizer. All day he has been fine with no cough so I'm thinking it may be allergies.

That's all to report right now. Hope everyone is having a wonderful weekend!

Happy 41st Birthday!

2010-10-02T10:36:00.000-07:00

41 Years Young!

And they said he wouldn't live to be a teenager...

This year called for 2 cakes!

Deep breath in...

He blew those candles out like no one's business!

Amanda, (a/k/a) The Rock rocking some birthday hats (looks like Lisa from the Simpsons)

We had a great day yesterday! It was Jim's 41's birthday and also a celebration of a new life with new lungs and all sorts of new possibilities!

First there was a party with the campaign staff. They got eclairs (his favorite treat) and sang happy birthday. It was so thoughtful of all of them and very much appreciated! If you guys are reading this "thank you" from both of us!

We then had a birthday party for him with the family at our house. After the birthday party we went to Sand's casino in Bethlehem and saw Southside Jonny, one of Jim's favorite old-school New Jersey bands. We then met up with a group of friends and had a birthday toast at St. James Gate; a really cool Irish pub at the casino.

We constantly compare how things were just 4 months ago compared to now. I was walking around the casino and saw a man sitting at a machine with an oxygen tank. I brought back thoughts of sadness and fear along with pure joy that Jim no longer has to drag extra equipment nor does he have to make sure he is home in time to get a treatment in. The casino was very smoky but once we got into the no smoking area it was much more tolerable.

So, things have been moving along smoothly with no complaints. The first 3 months were hell (to put it nicely) but now...it's just amazing (which is an understatement)! Jamie, thank you for all your words of wisdom, you are sooooo right! Things are amazing after transplant!

As ALWAYS, thank you to our donor and his family for allowing us to enjoy life.

Please consider become a donor. Just click here to do it on-line!

Big day at Penn...Meeting Goals..

2010-09-28T15:58:00.000-07:00

Today was my four month checkup at Penn and it went awesome.

It started with my Pulmonary Function Test (PFT) and I must say we kicked ass. My FVC was 4.15l (80% of Predicted) and FEV1 was 3.44l (83% of Pred)! All in all an unbelievable gain, so much so that after the first attempt they re-calibrated the machine to ensure something was not amiss. Note: last time I was tested 8/17/2010 my FVC was 3.62l (70% pred) and FEV1 was 2.98l (72% pred). So in short I added 10% to my capacity in just over a month.

My weight was 153 on their scales which was also a huge gain from the 140 I was last time .

We then went to see Dr H who was impressed with my improvements also. He flinched at my new numbers and questioned the accuracy. He stated that they usually don't see large gains after the initial pop post recovery. I assured him that they checked the machine and they are accurate, also they closely match what I have been getting here at home on my spirometer.

So things are not only feeling good, I now have some quantification from the experts that they are in fact very good. We are sticking to the same level on all my meds and getting bloodwork done this week on my rejection meds and vitamin levels.

One thing this visit reinforced with me is the need to set goals and work towards them. When I was at my lowest weight of 123 I set what I thought was a stretch goal to be back to 150 by my 41st birthday (Oct 1) and when I had my last PFT I said I wanted to be at 80% of predicted.

Well Goals Achieved my friends!

Quotes (by Denise):

"We're getting our life back...little detour." Jim after telling me he got us tickets to see Dave Matthews Band tickets for November.

"What's so important that you have to put your life and others in danger?" Denise regarding some idiot dodging in and out of traffic.

"Maybe he got his transplant call." Jim :)

Video

2010-09-25T17:09:00.000-07:00

Jim and I went to Amanda’s (a/k/a “The Rock”) school on Wednesday. Jim gave a speech about his transplant journey. Amanda is going to school to be a Medical Assistant and was a tremendous help to both of us (physically and emotionally) during the time spent at HUP. I took video of his speech but it is too large to post so...here is a video of his first walk with NO OXYGEN after transplant. What a sight!

Now there's no stopping him!

4 months ago...

2010-09-20T17:34:00.000-07:00

Jim 4 months ago:

About an hour after his transplant surgery.

Jim now:

Ooooops, wrong picture...

Jim now:

His goal was to weight 150lbs by Oct.1st (his birthday). He just hit 150.9 today! Needless to say, his belly has been doing real well, except for the time that he ate too late in the evening and woke up in the middle of the night puking. Note to self: Do not eat late at night!

Things have been going (dare I say) GREAT?!!

We hopped in the car Saturday for a ride and ended up in New Hope! We found a bunch of shops and walked around for a long time. We climbed hills too:

After going to a bunch of shops we decided to head home. On the ride out Jim saw some shops on a side road and realized that they were the shops that we were initially looking for. So out of the car and on to more shops! I like this new lung thing!! I have to admit, I was getting tired. :)

Little coffee stop:

Diabetic in a candy shop...again.

He didn't get anything but I HAD to get some Pop Rocks!

So, we're getting back to some normalcy! I have started to do some projects around the house. I'm ripping out old carpeting from the stairs and painting the sunroom. I'm also still training for a 5 mile run in December and a 5k in Philly next year for organ donation awareness.

I got a little weepy last night thinking about how things were 4 months ago compared to now. As I was in the ICU waiting room I had no fear that the surgery would go wrong. The months following his surgery were (keeping it real) pure hell! But looking back, I have realized how much I have taken for granted. Every once in awhile I have to check myself when I start to get annoyed by something small. I sit back and look at what is really important in life and usually the thing I am annoyed about isn't worth my energy.

Additional ramblings:

I am currently burning a scented candle. Yup, doesn't affect his lungs and it smells AWESOME! I haven't been able to burn a scented candle for YEARS!
Hugs are tight and strong!
Jim is back to doing the laundry. Woo hoo!
He is able to let the dogs out with no problem.
He picked up paint for me at the store, now problems with carrying it.
Instead of "I can't" it's "Let's do it!"

My cousin sent Jim these Silly Bands. Fitting, huh?

Quotes:

"It's a great day to be alive!" Jim while driving in the convertible.

"I would have NEVER been able to go shopping here before" Jim, regarding the hills.

"This is so freaking awesome!" me, regarding EVERYTHING!

Much love sent to Jim's donor's family. @>----------------

No Rejection Bronch 3....

2010-09-08T17:54:00.001-07:00

Yes that's right, got the results back earlier today and there is no signs of rejection in the tissue pathology. They decided that they will not treat the Pseudomonas since I am feeling so well(probably just migrated down from my sinuses). They are however going to treat the Aspergillus. I'm to start an anti-fungal on Friday. They want me to wait till Friday because the drug will interact with my Tac (anti-rejection) level. I'm to go from my current 4mg twice daily to 1mg twice daily of Tac starting Friday and then get my blood levels checked on Monday. They said it would take a few days before the levels stabilize.

So great news!

No Pathology yet....

2010-09-07T15:16:00.000-07:00

Got a call from Belinda and they do not have any pathology results back yet from my bronchoscopy on Friday. They did however get results back from the fluid lavage procedure (fluid they sucked out after rinsing lungs). It is growing pseudomonas, MRSA and Mold (aspergillus). Since I am feeling and doing so well they will probably not treat the pseudo or MRSA since it is probably just migrating down from my sinuses (I was growing it before transplant). As far as the aspergillus goes they are waiting to hear back from the infectious disease Dr on weather to treat it or not. Short of it is we wait until tomorrow to see what is what.....

Beautiful

2010-09-03T17:11:00.000-07:00

Beautiful post-transplant days. We are finally seeing the light at the end of the extremely loooooong tunnel! My sister-in-law told me that this picture makes her "heart happy". These smiles...yes, they are "REAL SMILES" of how amazing life can be! Many times in the past few days Jim and I just looked at each other with smiles for no apparent reason. Actually we know the reason, it's just too hard to verbalize!

Jim was looking for blood type AB but they only had type B...

So Jim had fish and chips from this stand on the boardwalk and it was really tasty! Just kidding. All of our post-tx friends probably just gasped for air reading that!

"Look, it's all about me!"

Walking the boardwalk! Climbing steps!!

A little pooped after a long day of walking miles on

the boardwalk!

Seriously! He was just strolling along, carrying a heavy bag with no shortness of breath, no oxygen hanging on his shoulder and no need to stop and take a break.

Early wedding anniversary meal. Safari Steakhouse at the Taj Mahal.

Ok, it's nice to know that I no longer have to wait for him but jeez, I stopped in the hallway for a second and he was gone!

Note floor level "CF". Interesting...the first thing I thought was "cystic fibrosis".

No, he didn'tbuy the belt!

Perfect day for a Rita's ice (or two)!

I found it hard to contain my smiles!

A very happy place! Starbucks with an ocean view!!

Diabetic in a candy store...

And our suite at the Taj Mahal was just amazing!!!

Balcony view!

And Friday we went to HUP for a bronch:

Rockin' the surgical mask and hospital gown!

100%saturation! Way to go Jim! Mine was 98%. He's such a show off! Dr. Lee did the bronch today. He told me that his lungs look beautiful. I'll take that, although pristine does sound nicer! We should have the results of the biopsy by Tuesday. That is when we will find out if there are any signs of rejection.

Life certainly is good, and getting better every day!

Keep on moving up...

2010-08-31T07:42:00.000-07:00

It has been a very good week for me health wise, weight continues to rise (now at 143) and I blew an all time high on my home peak flow yesterday (FEV1 3.12 FVC 3.57). I have been able to get back into the campaign office several times and am starting to get back into the groove some. I also started to lift weights again this week. It felt great, my only concern is still my sternum. When I was doing bar presses and had the bar lowered with my arms all the way down I couldn't help but wonder if my chest was going to split open...lol.. Luckily I was able to push the 45 pound bar without issue. I am noticing that my strength is steadily increasing, so I will have to keep in mind the doctors limitations.

Denise and I got out and about all weekend and it was so great to be able to walk through the stores and grab lunch with minimal concern for my health. I am of course still going nuts with purrell, but not wearing a mask unless its really close quarters.

I also picked up my new iPhone 4 yesterday (take that Chris and your droid)! I know most of you who really know me were surprised that it took me this long. The focus was on health and rehab and my iPad and old phone was sufficient tools, but I finally got over to pick up the new one. Denise and I are heading to Atlantic City tomorrow and I wanted the new camera features with the flash. I have to say the screen clarity is excellent but I have not noticed much else that is different yet. It was so easy to set up, Apple is great for user functionality.

Mmmmmm ...spaghetti

2010-08-27T18:04:00.000-07:00

Yep, I'm back. No worries, Jim is fine (so am I)!

This evening we went to a spaghetti dinner for Luke, who I mentioned in my last blog. Jim and I met Lukes's dad, grandparents and children. We spoke with them about our experiences along the pre and post-transplant craziness. Seriously...it is CRAZY!!

Man, I can understand all too much how Luke's family is feeling. It is so hard to sit and just watch all of this happen to someone you love and not be able to do a thing to help them (other than be with them). Every time I read a new blog post from his mom or dad I can't help but think of the days of sitting by Jim all day, then going back to the hotel, blogging and then going to sleep only to get up in the morning and hope and pray that that day will be a good day... Some days my hopes and prayers helped, other days...not so much.

On a happy note, Jim has been making great strides lately! Whew, lets keep it that way please!

Here are a few pictures from last weekend. Jim was strong enough to squat down and clean "M" but the next day his legs were feeling it, buy hey, at least the car was clean! Ha ha!

Note: OBX t-shirt

Ok, I just have to say that Jim has not pumped gas in ummmmmm....not quite sure how long but it's been awhile!

Ahhh, the open road!

Me, all smiles!

He was smiling, really!.

So, we are beginning to enjoy life post-transplant!

This coming Wednesday we are going to Atlantic City, NJ. I am so excited! An old (young really) high school friend, that I haven't seen since then, won a hot dog eating contest. She won a 7 night stay at the Taj Mahal. She can only stay 5 nights and was so gracious to offer the other 2 nights to us!

Quotes:

"I can't wait to go for a run on the beach!" Denise

"I can't wait to walk on the boardwalk." Jim

"Yep, you can do that now!" Denise

Much love to Jim's donor and his family.

@>-------------

Looking better...

2010-08-26T08:15:00.000-07:00

I did some manscaping yesterday to get a good look at my scar and a mark that has appeared on my right peck. I showed the Dr the mark last time we were at Penn and Dr H said he didn't know what it is and that I should see a dermatologist. Great, just what I wanted to do...see another Doctor. Looking at the mark its glossy like the the scar is, so I'm wondering if they got some of the glue they used to close the incision on my chest by accident.

So here is the 3 month post transplant scars, not too bad at all really. I figured I can just say I was in a fight and was hit with an ax or a broadhead sword, then I got the best of the guy so his partner shot me several times in the gut. Sounds good no?....LOL

I'm now 142 pounds and as you can see have filled out much better than I was, and the scar is stretched slightly because of it. I'm nowhere near my final goal of around 160, but at least I don't look completely sickly anymore. As I mentioned before at my low of 123 pounds I really looked bad. Being an ex bodybuilder I know I have body dysmorphia issues, but trust me it was bad. In hindsight I should have taken a photo, but I was really disgusted with it all at that point. See if my weight did not start to improve my fear was that I would have had to get a feeding tube put in and I was vehemently against that. I still have to force myself to eat most of the time, but I'm making sure to get my calories in and it is working well. I really need to start to lifting more though, I have been getting out almost daily doing various things for cardio, but I'm not doing nearly enough resistance exercise since I'm still hesitant with my sternum and incision. The 5 pounds weights are just a joke, so I did get some 10 pounders now to push it some.

On another note, here is a picture I received yesterday from the Callahan fundraiser last week with Bill Clinton. You can see how thin I am in it (was in 120's). to me I look like I'm wearing someone else's suit, lol..

On a positive note I have now started to attend a few meetings over the last two weeks and am trying to get back in the flow of the campaign. Its so nice to be able to be a part of something again and not just focus on my health issues. I'm making sure to use Purell on my hands all the time and wear a mask when in close quarters.

Back in the saddle again.....

2010-08-24T08:24:00.000-07:00

Well I believe this is my first post since transplant...so Hello everyone!

It has been an incredible few months (3 month transplant anniversary was last Thursday). I have had many ups and downs over the time post transplant and Denise has done a great job filling everyone in on the craziness that is the transplant process. Thank you so much for keeping the blog going Denise and everything you have done for me over these difficult months. And Thank you everyone who has followed me and given me strength through this process, I am amazed at how many comments I hear from people on how much they enjoyed following us through this journey.

Many have asked me why I had not been blogging myself over this time and the truth is that I was not able too. At first physically my eyes could not focus, then my mind would not let me. I was so addled from the medicines that I was unable to clearly state what was going on. It has only been over the last two weeks that I have actually gotten back to being myself. I now feel I can fairly reflect on what has happened in my life and not send people running and screaming for the exits.

My weight is up from a low of 123 to a respectable 141.5 and I am no longer weak as a kitten like I had been. I have made a point to get out of the house more and it is helping me allot both physically and mentally. See when you have a transplant and they have your immune system knocked down low enough to keep your body from fighting the new organ you have to be wary of everything. The clinic does a good job of scaring you away from all the potential things that can hurt you and cause infection and or rejection. The result of the fear was that I found myself knocked out of my normal rhythm. Those who know me know I made a point in life to live it fully, no excuses no fears. I set goals and accomplished them more than not and never let my health interfere. Well post transplant, be it from the medicines, stress, fear or whatever I found myself trying to isolate myself from everything. I was physically afraid to engage in life or anything. This is not me, I have to throw caution to the wind and run headlong into the storm, that is who I am and I have come to realize I can't be anything different and have a decent quality of life. Two weeks ago I got angry and took control of my life again....

So as Aerosmith says I'm back in the saddle again!!!

I know many people had specific questions, feel free to email them to me or post them as comments and I will be glad to post about them.

Cheers!
Jim

Climbing Hills and Showing Off

2010-08-18T11:58:00.000-07:00

We enjoyed a few more nights at Musikfest last weekend and Jim did fine. On Sunday, the last night of the 'fest, there was a huge firework display. We stood on the hill (yes, that's right...the hill) to watch them; Jim has been doing well with hills lately. We started walking up one of them and I stopped to look for him; I didn't see him anywhere until I looked up. He was already standing at the top of the hill looking down at me with the look of "Come on, lets go" on his face. Jeez...what a show off! So Musikfest ended with a bang of fireworks and Jim being a show off.

Last Sunday we also enjoyed a nice cup of Starbucks with Barb, a member of "Team Sheldon".

Yesterday we went to HUP to visit with the transplant team. Jim went through his routine. CXR first, PFT's and then meet with the transplant coordinator and Dr. H. It looks like things are headed in the right direction.

His CXR was much better than the last. The lower right lobe is expanding, his stomach looks much better and his PFT's are climbing. He's FEV1 is currently at 70% of predicted and should go up from there! Prior to transplant he was at his all time low of 24%.

His weight is continuing to increase and is currently 140. The transplant coordinator told him he looks a little more "meatier".

Last week Jim's Prograf level was "undetected" which had both of us baffled. Yesterday his level came back as 6.2 so they increased it to 3.5 mgs. His next bronch is scheduled for 9/3, the day before our 17 year wedding anniversary. The bronch will tell us if there is any sign of rejection.

If you have a chance please stop at Luke Maeding's blog and send him an e-card. He is at Children's Hospital of Pittsburgh and is from Nazareth, PA. Luke has children's intersistal lung disease and had a double lung transplant this past Saturday. Here is an article that was in our local paper about him.

Quotes:

"You have hair??!!" this is what the transplant coordinator said while Jim was in the middle of telling her how he was doing.

"Sorry, back to the important stuff." coordinator after realizing she got off track.

"I'm so happy! Are you happy?" transplant coord after hearing how Jim is doing.

Where are YOU?

2010-08-14T12:31:00.000-07:00

Ever since Jim and I have been out many people have mentioned how much they love reading the blog - thanks for that!

Because we have both been amazed by the number of people following us, I'm curious where everyone is from.

So...where are YOU from? How does CF affect you? What's your story????

You can comment without signing into an account and there is no need to provide your name or personal information. I know some people have had some problems posting, so here are instructions on how to comment:

At the end of one of the post, click on "comment";
Scroll down to the blank area that says "Post a Comment" and type your message;
Where it says "Comment As:" click on the drop down arrow;
Click on "Anonymous";
Click on "Post Comment";
At "word verification" area type in the word typed in blue;
Click on "Post Comment";

Walla...your comment should be posted!

We are from Bethlehem, PA! I don't know if Jim indicated where we are from in his status.

I'm really hoping to hear from many of you!

Jim is continuing to eat with no pain (a bit of cramping, that's it). He is getting stronger and gaining weight (up to 136 lbs) every day. Kicking butt and takin' names, baby!!!!!

Quotes:

"Do we have any waffles?" Jim

"Yes, in the basement. I'll go get them." Denise

"No, that's alright, I can do it" Jim

"Oh yeah, I guess you can!" Denise

(I've been doing all of the steps around the house for the last year or so because Jim's lungs were not cooperating. He did the step to go to bed and that was pretty much it.)

"I know, I'm stretching the 'in sickness and health thing'." Jim after I told him he better be careful or he won't make our 17th yr anniversary in September. ;)

"We need to go back to Cancun so we can climb that pyramid that we wanted to!" Denise

Finally, things are looking up (knock on wood, plastic, metal or anything else in reach)!