Friday, November 26, 2010


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!

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

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!

Tuesday, November 23, 2010

CMV, A1 Rejection and PICC

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.

Friday, November 19, 2010


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!

Friday, November 5, 2010

Good Stuff (Jim) and Bad Stuff (cat)

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

"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


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.

Wednesday, November 3, 2010

Breathing Easier...


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...

Monday, November 1, 2010

Wow! So that's real?!

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!!!