Saturday, December 25, 2010

Merry (2nd) Christmas 2010!

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:

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

Wednesday, December 8, 2010

On our way home.

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

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.

Tuesday, December 7, 2010

No Answers...yet

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

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.

Friday, November 26, 2010

Thanks(for)giving!

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!


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

Sappy


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.

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.

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...