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:

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.