Tuesday, June 8, 2010

Physical Therapy and Cleansing

I did my standard WaWa run this morning while Jim did his 10 minutes of breathing exercises. I have to type this again...10 minutes of breathing exercises! ...that's it!!

The day started again with blood work to check his Prograf level. Then Jim had 2 hours of PT. He was on the treadmill for 25 minutes with no oxygen and O2 saturation stayed at 98%! While he had his PT I went for a nice walk around the area. I did a few hills and was carrying a bag that was at least 15 lbs. I need to get back on track to prepare for my 5K run! I got a little sidetracked in the past few weeks! :)

We met with Dr Hadjiliadis in the afternoon. We discussed the stomach issues Jim has been having. The doctor said that the bloating will get better. It is probably occurring due to the operation itself. Also, for some reason CF patients seem to have this problem more than non-CRers.
Prednisone has been cut back from 35mgs to 30mgs.
Jim's Prograpf level from this morning was down to 12. The dosage was changed to 1.5 mgsub lingual, twice per day instead of 4 mg twice per day.

Dr. H. said that the high Prograf level could be due to the stomach problem and change in eating since he has been discharged. He also toldus that it is not unusual to have jumps in Prograf levels. He showed us the most recent xray and explained the stomach issue more. It is apparent that not much is moving along in his stomach based on the darker areas. The "slow stomach" can be caused by the meds, the operation and cutting of the nerves.

To help with the bloating Dr H is having him drink 1 gallon of water/MiraLAX mixture (the equivalency of a colonoscopyprep.). He is to stay on liquids until things start to flow better. He also started Jim on Erythromycin because it has GI related side effects that should also help get things moving along better. If the Erythromycin does not workthen he wants us to try a Canadian drug called Domperidone. Once he starts to eat they must be small frequent meals.
We were told that ibuprofen cannot be taken because it interacts with Prograf andmakes the kidneys sicker. He said that the lungs are doing great and we're out of the woods. There still will be bumps though.

The next bronch is 7/2 and they will be doing a biopsy to see if there are any rejectionissues.

Dr. H had Jim breath deeply to listen to his lungs. He said the lungs sound good with a few crackles. I found it amazing that Jim didn't cough at allafterward. Pre-tx he had major coughing attacks when he had to breath deeply.

"...a lot of sick people around here.". Some guy at the hospital. Ummmm...duh! You ARE at a hospital!
"My days of carrying that are over. I'm a big boy now." Looking at a woman carrying her O2.
"Tomorrow will be 3 whole weeks with my new lungs."


  1. "....I'm a big boy now." Priceless.

  2. Holy Cow! Only 10 minutes of breathing treatments! Way to go, Jim! You're rockin' and rollin'!!!

  3. Out of the woods sounds just totally amazing!!!!! And the treadmill and treatments are going great!!!! Now just get that tummy in line ;)

  4. I hope your stomach starts to cooperate! 3 weeks is amazing, I can't believe how great you're doing just weeks after your transplant. Before you know it 3 weeks will be 3 months and 3 months will be a year, then two, three. . . . .the skies the limit, not our old junky lungs :)

  5. Hi this is Liza from the CF boards. I just wanted to say how happy I am that things are progressing well! I also wanted to offer this bit of advice regarding Prograff levels. Anna was told by her tx team at Stanford that they have found that most CF patients need to take enzymes with their prograff. They didn't start her off with them right away, just after her levels didn't seem to want to stay put. Probably week 2 or 3 maybe. Anyway, they started her off on one, then two, then ultimately 3. She was able to maintain a steady level with 3 enzymes (pancrease MT 16 for her) taken with each dose of prograff. For her she managed to stay at 2mg & 1.5 for over a year before having to re-adjust her prograff just recently. I would ask his tx team about the possibility.

    Keep up the good work! So happy for you!

    Liza (mom of Anna, 23, dbl lung tx, 07/07 & Rachel 19 both w/CF)