Tuesday, September 28, 2010

Big day at Penn...Meeting Goals..

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 :)






Saturday, September 25, 2010

Video

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!



Monday, September 20, 2010

4 months ago...


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. @>----------------


Wednesday, September 8, 2010

No Rejection Bronch 3....

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!

Tuesday, September 7, 2010

No Pathology yet....

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.....

Friday, September 3, 2010

Beautiful



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!