Transplant Testing

This was a busy week of transplant testing for us.  We took three straight days and crammed them full of consults, exams, radiology studies, lab work, and more.  We also threw in there PFT’s (pulmonary function testing), and a CF clinic visit.  The most invasive test Jody had done was a right & left cardiac catheterization.  That one took up an entire day with us not getting home from Hopkins until 10:15 pm (only to turn around and leave the next morning by 6:30 am for more testing).  One thing that struck me this week is the way Jody does all of this without complaining.  Some tests (such as the heart cath) caused quite a bit of pain (which although less now, he still feels), others made him feel like he couldn’t breathe, a few were just gross (like drinking barium), some required being stuck with needles, many required waiting.  Not once during all of this do I remember hearing him complain!  I don’t think he could say the same about me if the tables were reversed.

One of the most informative things we did this week was to meet with the Transplant Coordinator.  I was looking forward to this meeting because I knew she would be able to answer questions and give us more details on the transplant process.  I sat there, pen and paper in hand, and by the end of our time I had a full-page of notes.  It was a good meeting but it was also hard.  We were talking life and death: of my husband and of a complete stranger.  Tears were shed.  Despite the emotions this stirs up, I was really glad for the information we gained during this consult.

Jody’s CF clinic visit went well.  His PFT’s (a measure of lung function) stayed the same at 28%.  They may not be great but I was glad they hadn’t dropped as they have been doing over the last few months.  The doctor also mentioned starting a prophylactic round of IV’s at home mid-late November to keep Jody as healthy as he can be for the upcoming holidays.  I love that he brought this up and I didn’t have too.  I’m so thankful for doctors who care not just about Jody’s lungs but his general well-being and the impact that this has on our family.  How I would hate to wake up Christmas morning with my husband in the hospital, unable to celebrate together as a family.  Obviously I know that there are no guarantees, and this could happen despite a course of home IV’s, but I’m all for the idea of doing what we can to keep him home for the holidays.

While we’ve knocked out a large portion of transplant testing we are not done!  I should explain that the reason for such extensive head-to-toe testing is because before they put new lungs in his body they need to make sure that he is otherwise healthy.  Wouldn’t it be horrible to undergo a lung transplant only to find out you have cancer of the liver which wasn’t tested for because they assumed that with the exception of your lungs were well?  That is what they want to avoid, hence the full body work-up prior to transplant.  We do not have the results of Jody’s testing yet, but will be given that information once it is presented to the transplant team for review.  Our hope is that anything found will be only minor and won’t hinder his ability to list for new lungs.

Tags: cystic fibrosis, lung transplant