Wednesday, June 30, 2010

Team Edward, Jacob or Team Sheldon?

I vote Team Sheldon!

Last night was the opening of the movie Eclipse. I haven't read the books but I saw the movies and really couldn't get into it. Bella is a bit too dramatic for me. Anyway, for those of you who aren't familiar with the movie: There are 2 guys that all the girls love and the debate on the streets is who should Bella go with; Edward the mysterious vampire or Jacob the werewolf. Watch this Saturday Night Live episode before reading on.

One of our awesome Team Sheldon members went to see Eclipse last night and decided to dress special for the occasion:
Now that's a true "Team Sheldon" member! I love it! Great idea Michelle!!

Not too much to report on Jim. His anxiety has lessened and his lungs feel great! He'll be headed to HUP for labs, CXR, PT and RT tomorrow.



Tuesday, June 29, 2010

Running...

...me, not Jim yet! I decided to start training again for my 5k run on July 31st. I stopped at week 3 when we got THE CALL so I decided to start all over at week 1. My first run was this evening and it felt great to get out an clear my head a bit. The music was blasting and my C25K iPhone app was doing it's job! The C25K program is 9 weeks but I won't finish it by July 31st but that's fine. I'm still doing it!

Jim is still having the anxiety issues and the doctor put him on 50mgs of Zoloft. Hopefully that will get him through this tiny bump. He's got blood work, CXR, PT and RT in Philly Thursday and a bronch on Friday.

That's all for today.




Monday, June 28, 2010

Antsy, Anxious and Annoyed

Not too much to report today. Jim had PT and RT in Philly today. He walked almost 2 miles. His Prograf level is stable so the dosage will remain at 1.5 mgs BID. He is still beside himself. He doesn't want to sit, doesn't want to stand, he's tired but can't nap. The meds he's taking are getting him antsy, anxious and annoyed.

Things seem to be looking up *fingers crossed, knocking on wood*. Again, I'm always thinking that there may be something lurking around the corner. I guess this is a good thing and a bad thing. I want to enjoy the good times while I have them and not think about the bad that may be lurking. At the same time, I can't kid myself to believe that things will be perfect. It's a balancing act that I hope I can maintain. I'm hoping in time I may believe that things will be better and my main focus won't be CF related, rather thoughts of fun things that I've been wanting to do for YEARS but CF took away. To name a few:
Hiking.
Play with the dogs in the snow WITH Jim.
Kayaking (not sure that will happen with Jim's motion sickness).
Do random things without thinking about getting home in time to do treatments.

My list is much longer but I can't seem to get my thoughts wrapped around all of the possibilities!
*Umm...this is my list. Hopefully Jim will be agreeable to most of them!* If not, who's in?!

As usual, I think about Jim's donor and his family every day and am so thankful that they have shared a part of themselves so Jim and I can have a better life.

Save a life, be an organ donor: http://www.donatelife.net/

Sunday, June 27, 2010

The Return of Team Sheldon!

Michelle, Shannon, Denise
Barb, Holly and Sheldon (a/k/a Jim)
Jim is having some belly issues yet but today was a good day! Team Sheldon and Sheldon himself met up at Starbucks for some coffee and laughs. A few women came in, saw our shirts and asked us if we just ran a 5k. What in the world (other than our shirts having a team name) would make her think we ran a 5k? Anyway, Jim's reply was "No, I had a double lung transplant 5 weeks ago." I believe the woman's reply was "What?" I guess it's not something you hear every day.


More random thoughts:

I treated myself to a new patio set! Love it! It's nice and cozy. Can't wait for a nice night to sit and relax with a glass of wine.

My niece, Amanda and I did some shopping today and when I went to open the trunk I thought "Oh man, this stuff won't fit! The suitcase is in there." Ummmm, not anymore! The suitcase is back in the closet and the next time it comes out will hopefully be when we go to the Outer Banks! Knowing that our donor was from North Carolina, our future visits to the Outer Banks will have an entirely new meaning!

Corolla, NC

"I now believe, by the way, that miracles can happen."
This is the final sentence of the book "A Walk to Remember" by Nicholas Sparks and it happens to be the book Amanda finished reading on the morning that Jim received his transplant. Hmmm, pretty neat...

Quotes:
Jim - "Look, my head shrunk...hope my brain didn't go with it."
Denise - "Me too because there wasn't much to begin with!"

"Notice, I'm not coughing?" while sipping on a frozen drink.

click here to join the organ donation registry

BECOME AN ORGAN DONOR, SAVE A LIFE!

TYD&DF!

Saturday, June 26, 2010

Move 'em out

Things are going the same as yesterday for the most part. His belly has been giving him trouble this evening but not half as bad as it was last week. His weight is at 140 lbs.

It was a nice morning so we went out back to get some fresh air. The dogs ran around a bit and I yanked some weeds. The weeds are finally getting under a little bit of control since we've come home. But that's all small stuff. The important
part is that Jim is healing!

Jim's mom, my parents and Amanda stopped by this afternoon for a visit.

The new air filter came in the mail yesterday so I worked on putting that puzzle together. I consolidated a bunch of Jim's meds., machines and other misc. items. There are a lot things that we don't need but do not feel comfortable just getting rid of so I put those out of the way and made room for the new stuff. While I was moving the meds around Jim was getting a little anxious. He said that I don't understand how he feels. He's taken those meds for so long that it doesn't feel right moving them.

Machine, vest, and O2. You were great while we needed you. No hard feelings but it's time to say goodbye!

Random thoughts:

Last night laying in bed while Jim was already asleep I decided to follow his breathing. I've done it many times pre-tx and was never able to get enough air in because of his shallow breathing. Last night was completely different! It was a nice, slow and steady pace that actually put me to sleep!

Check out this utube video of 2 girls with CF that are currently competing on America's Got Talent. I absolutely HATE when people tell others that they can't do something! These girls have showed "them" that they can!

Quotes:
"Why won't it come out sometimes?" Regarding belly issues.
"Prednisone, you *@$#!" No need to expand on this.

Did You Know....
There are over 100,000 people, the size of a small city, on the transplant list in the US.

There were less than 10,000 deceased organ donors in the US last year. (that's a ratio of 1 organ donor to every 10 transplant patients).

In the time it takes you to shower today, 1 new name is added to the US transplant waiting list.

From the time you woke up this morning to the time you wake up tomorrow morning, 18 people will die waiting for their transplant in the US.

click
here to join the organ donation registry

BECOME AN ORGAN DONOR, SAVE A LIFE!

TYD&DF!


Friday, June 25, 2010

You decide...

Nothing exciting going on here. Trust me, I'm not
complaining! It does see odd though. I'm sort of afraid to
say things are going great
for fear that there may be something lurking
around the corner. I'll let
you guys decide...


Jim's weight is at 138.5, HR and BP are good. He is walking around like nothing ever happened.

One of Jim's buddies stopped by for a visit today which was a nice change of pace for Jim. "Thanks!" It was good to see Jim laughing and he didn't even cough afterwards! Yep, just the small things that I've noticed post-tx.

So...I don't think that I mentioned this before but Jim is not allowed to lift more than 5 lbs. Today he decided to pick up the cat. I weighed her to see if she was too heavy. She weighs 11.5 lbs. Ooops!
We received Jim's Medic Alert dog tag today. I think it's kind of cool (as cool as Medic Alert jewelry goes) compared to the standard bracelets. It will take some getting used to wearing.


Quotes:
"I feel like I have to do a treatment." This one has been said several times. It is another one of my favorite quotes!

TYD&DF!
Be somebody's hero and be an organ donor. http://donatelife.net/


Thursday, June 24, 2010

5 Week Anniversary

Happy 5 week anniversary to Jim's new lungs and life! I still find it hard to believe that this happened. It really does seem like a dream...a VERY AWESOME dream!

A medical documentary just came on TV about a doctor trying to perform a double lung transplant on little sleep. Oh jeez! How do you perform a double lung transplant perfectly perky let alone on little sleep?! If this were on TV pre-transplant it would no longer be playing in my house!

Sometimes I wonder what went on behind the scenes that day and the day that we had the dry run. How many people really are involved in the whole ordeal? Do they get excited, scared, nervous? I can't say that it doesn't creep me out just a little bit. And seriously, do they really carry the organs in a cooler? I guess so...they just showed it on the documentary. WOW!

Jim did well in RT and PT today. He did 45 minutes on the treadmill and completed all of the PT. Looks like taking the pain meds are helping! He didn't seem half as worn out today as he had other days after RT and PT. He did negotiate a deal with the RT/PT folks. Instead of going to Philly every Mon., Tues and Thurs., Jim will be going on Monday and Thursday's only and do his 3rd day of RT/PT at home!

This evening he was very anxious and felt beside himself. I am certain it is from all of the meds that he is taking. Prednisone alone will make you feel like you want to jump out of your own skin!

Now on to our Thursday night ritual...
Guess what we do on Thursdays? We get the meds set up for the week!
I know you're probably wondering... how does he know what he should be taking, how much and when?" We thought the same thing when we got home with our "box o drugs" from the hospital. The first time we tried to fill the organizer it took awhile and we knew there had to be an easier way than reading each one off and trying to decide when to take it, if it needed to be taken with food etc.

The answer is.........
....................................................
.................................................................
...........................................................................
.....................................................................................
.............................................................................................
...................................................................................................


PICTURES!!!

Jim puts the empty HUMONGOUS pill organizer on the table in front of him. I get out my phone with pictures of the meds and time of day that they are to be taken. I then take each bottle, look at the picture and tell Jim what time of day each pill should be taken. Pretty cool, huh?

This really does work well for us and we get quicker at it each time.

Thank you to our donor and our donor's family!
Just a few clicks can change so many lives! http://www.donatelife.net/

Wednesday, June 23, 2010

Pizza!

Today was Jim's first day being home alone for a majority of the day. My dad stopped by for a little and then I came home for lunch.

His belly is still doing good. He had some toast this morning and it didn't bother him. The real test was dinnertime. I grabbed a pizza for dinner and....................all is quite! No belly pain, nausea or vomiting! Woo hoo!!

He is being more diligent about taking pain meds. This will enable him to move around more and get those lungs working good with much less pain. I'm hoping that when he has his RT and PT tomorrow his pain will be under better control so he can get a good workout in.

In case you didn't catch on from my last blog post, Jim's abdominal ultrasound showed gall stones. This is the reason for the elevated liver enzymes. The radiologist said that as long as he is not having pain from them they usually let it alone. I'm assuming when we see the doctor next Tuesday he will tell us that.

That's it! I hope that more of my posts will be pretty uneventful for awhile, at least.

TYD&DF

Tuesday, June 22, 2010

It's a Boy!


Jim was in some MAJOR pain today! He didn't take a pain pill last night and woke up in so much pain that he couldn't move. The pain was at the surgical site. His belly is doing better!

Mom and dad picked us up to head out to Philly for respiratory and physical therapy, spiro, and then the abdominal ultrasound.
Jim left therapy early because he was in too much pain and wanted to be strong enough to get some good numbers when he did his spiro. His numbers would have been better but the pain did not allow for him to fully expand his lungs. His FEV1/FVC ratio did increase!

We met with the nurse tx coordinator and then Dr. H. His xray is looking better. The PDG is clearing up and the plural infusion is improving. They showed us the comparison from last Thursday to yesterday and the cloudiness decreased dramatically! They dropped his Prednisone to 20 mgs and his Prograf dosage will remain at 1.5 mgs. They also changed his pain med to Oxycodone. BP is fine but because it's not extremely low they want him to stay on the BP meds. When his BP starts to drop more they will discontinue them. Dr. H. gave us the option of seeing him every 2 weeks instead of every week so we will be doing that. As far as the therapy goes, Dr. H. said that he will probably be done in 2 to 3 weeks.

The goal for the week is to control his pain. Since he is more active now he requires more pain meds than before. He has to take them continually so he can keep moving those beautiful pink lungs and get stronger! :)

I ordered this shirt from Piper . These are the shirts that her family wore when she received her transplant a little over a week ago!! The back of it says "Smile, Breathe and Go Slowly ~Thich Nhat Hahn"

Quotes:
"I couldn't move. I was like a turtle on its back." Jim's description of trying to get out of bed this morning.

"I keep feeling like I have to do a treatment" ~Jim
"No, those days are over." ~ Denise

"It's a boy!" ~Denise
"No, it's gall stones." ~Jim
(need to keep some sort of humor in this game of tx!)

TYD&DF!

Monday, June 21, 2010

2 Steps Up, 1 Step Back

Jim had a rough day today. Respiratory and physical therapy drain everything out of him. No vomiting this time; he took a Dramamine. I may have been car sickness last Thursday. He gets nauseous playing XBOX (seriously) so I wouldn't be surprised!

The Prograf level was dropped to 1.5 mg's because his level increased to 19.6. Also, tomorrow he will be getting an ultrasound of his abdomen. His liver enzyme level (alkaline phosphatase) is 3 times higher than it should be and they want to rule out any gall bladder issues.

New food for the day is Mac and Cheese!

Quote for the day:
"2 steps up, 1 step back..."

Sunday, June 20, 2010

3rd Good Day in a Row!

A HUGE shout out to dad. Happy Father's Day!! We love you!


Happy Birthday to Jim's mom! We love you!


Today was the 3rd day straight that Jim has been doing quite well! He had some nausea today but also got some "things" moving around again.

Random stuff:

I went to breakfast with my parents and saw a girl that I used to work with. We talked a bit and I found out that she is friends with a fellow CF'er that we have known for years. He had a double lung and liver transplant over 15 years ago!

I got some grocery shopping done today and bumped into a woman that Jim met in respiratory and physical therapy. She had a double lung transplant as well and actually lives in Allentown. How crazy it that?!

When we were going through the testing phase of pre-transplant drama we met a guy named Chris who also has CF and was going through testing. A week after Jim had his transplant we got word that Chris did too! It just amazes me how things are falling together. Never in a million years would I have thought that Chris would have been given a new breath of fresh air a few days after Jim. They will most likely be in respiratory and physical therapy together tomorrow. Who would have thought that months ago they would see each other again but without their crappy CF lungs?

Thank you to our donor and donor family!

Register online to be an organ donor at:
http://www.organdonor.gov/donor/index.htm



Saturday, June 19, 2010

2 in a row and hoping for a 3rd, 4th, 5th...


Today was a GREAT DAY! We are both hoping this is a trend that will last. Jim ate well today and had a limited amount of stomach pain. He is still at 136lbs but I feel better knowing that he had some good "meals". I was seriously considering calling the hospital Thursday because he looked so bad. He talked me out of it...

We met up with a friend from Team Sheldon for a cup of SBX. She had her Team Sheldon shirt and Jim had his "Transplant Inside" shirt on. After SBX we headed to my brother's house. I had a nice relaxing swim in their pool and Jim hung out on the porch. Today was the first day Jim has been out of the house since we came home except for his rides to Philly. It seemed to really perk him up!


Jim and I were talking about some different things we have noticed post tx. They seem trivial to the average person but to us and I'm assuming most people in the CF community, it was pretty cool!
  • I didn't have to ask Jim to give me the mouthpiece parts to his nebulizer when I turned on the dishwasher. No need for them anymore!
  • I put some lavender scented hand lotion on right before I went to bed. After I did it I realized that it probably wasn't a good idea because it would bother Jim's lungs. Well, guess what?? It didn't! He even said that it smelled really good!
  • The Weather Channel had an "Air Quality Action Alert". Jim's reply: "Huh, I didn't notice a thing.".
I was reading the back of this and noticed that the bottle said that you should "Breath deeply for best results"! That's definitely something that Jim can do now and actually enjoy!


Sorry oxygen, you helped us when we needed you but we won't be needing you anymore!

Please consider being an organ donor! http://www.donatelife.net/
TYD&DF

Friday, June 18, 2010

Santa?! Mrs. Claus?! Chad?!


Wow, what a surprise!!
Santa, Mrs. Claus and Chad came for a visit today! We must have been good this year! I know we have been very blessed to have such great friends and family to help us get through this craziness! And of course blessed to have gotten a selfless gift from someone we don't even know!

Santa came with a HUGE Christmas stocking filled with gifts for the ENTIRE family. Inside the piggy bank that Jim got was a note. It read:
"This 'Santa Claus' document entitles Jim Fahr to one round ticket to see the 2011 Yankees Spring Training, including a ticket to the game & a baseball park meal! Merry Christmas!!!!'"


Great friends!


Dharma opening her gift
Abby opening her gift

The cat was MIA so I opened her gifts for her. She's got a rough life...


Our Christmas card.
The picture on the left was taken when we were in the process of getting listed at Penn (with O2) and the one on the right is a post-transplant picture (no O2)! Lynn, you're one crafty woman!

Jim is feeling MUCH better today compared to yesterday. His stomach was good until he had some soup for dinner. The same thing happened to him the last time he had soup. It just didn't sit right with him. I think it may be the heat bothering his belly. He is now at 135 lbs.

Quote:
"Today was a good day...string a few of these together and I'll be feeling pretty good about myself."

Lots of love sent to our donor and our donor's family!

Thursday, June 17, 2010

Today, not so good...

Jim had a really bad day today. He threw up in the car when he and my dad got to the hospital this morning and several times after. I guess we need to go a little slower with moving his diet to a more advanced level. It's great to know that his lungs are treating him well but this stomach thing is really holding things back. If he's not eating right then his body is not getting the proper nutrition to keep him strong enough to move forward. *sigh* Anyone out there that has suggestions for foods that worked for you, please leave a comment!

He's more alert and looking much better now compared to what he looked like when I came home from work.

The nurse transplant coordinator called earlier to let us know that Jim's Prograf level is at 12.1. There will be no need to change the dosage at this time. He BP was good throughout PT today so they may take him off of one of the BP meds when we see the doctor on Tuesday.

We both are really hoping that the gastroparesis works its way out a bit and things lighten up SOON!



*************************************************************************************

I just found these fun pictures in my email mailbox:

When I got final word that Jim was going to have his transplant I contacted a few friends that were out. They did some shots in celebration of the new windbags. In fact they had other people at the bar that didn't even know us doing them!

Paperclip lungs...I have a friend that
is quite talented at paperclip art!

Text msgs:

"I puked in the car when we got here..." ~ Jim
"Ugh! We forgot a bag!" ~Denise

"Got blood work and xray done at least...but blew chunks on Pop Pops door and jam." ~Jim (I know, really gross but I know that people who know Jim would appreciate that comment).

"Just got home threw up 4 times" ~Jim
"Oh crap! Guess the chicken wasn't a good idea..." ~Denise

Thank you to our donor and donor family!
Become a donor online, it's just a few clicks away: http://www.donors1.org/register/

Wednesday, June 16, 2010

You all worry too much...

Not too much to report today. Jim didn't have physical therapy so he was much more energetic. He has PT every Monday, Tuesday and Thursday in Philly. It makes for a long and tiring day. He will be happy once tomorrow's therapy is over so he can have a little break until it starts all over on Monday.

Tomorrow my dad will be taking Jim to Philly. Same schedule as Monday. Lab work, PT then a CXR.

His stomach has not been as bad today. I made him some shredded chicken with gravy and noodles for dinner, so far, everything is OK. He's still taking Milk of Magnesia but today not much has been "moving" around.

We received a get well package in the mail today from Yankees Stadium. We have no clue how it got here but Jim's eyes lit up when he saw everything. Anyone know how it got here? There is a figurine, mug, pencils, button, a calendar and a luggage tag.

Quotes:
"I think that today was a very good day except I'm feeling really jittery."
"I don't like being sad, it's not me."

Text messages between Jim and I:
"You all worry too much. I'm a 40 year old man." Jim
"You're a 40 year old man that just had his lungs yanked out! Jeez!!! At least people care about you!" Denise

TYD&DF
Donate Life!
http://www.donatelife.net/