Thursday, February 23, 2017

Update From the Hospital - 2/23/17

All settled in at my home away from home on the 10th floor of the UT Southwestern University Hospital.  I first commented on my recent decline in lung function back in December. I did a high dose steroid pulse in December and that kept me stable for a few days, then the slow decline continued.  I was admitted to the hospital on Monday and they are working on finding the trigger for this issue.

My HRCT is stable compared to my previous scans and X-rays look good.  I had a bronchoscopy with biopsy and those results are also good, we are still waiting on the cultures.  My VQ/Ventilation Perfusion Scan also looked good to my eye, much better than my pre-transplant images and I noticed no change from my last scan.  My ultrasounds and echocardiogram were also good. The only test that indicated an issue was an esophagram (barium swallow). This showed a little reflux when laying on my back. I think it was only with my legs raised. This could be the cause of inflammation that is having an effect on my lung capacity.  I really don't have any symptoms of reflux, and my diet is not one that would cause reflux.  I'm looking forward to discussing this with my Dr. during rounds tomorrow.

I've been on an IV steroid pulse for the past three days and other than an expected dip in lung function following my bronch, my lung capacity has stabilized for the moment. Tomorrow we make the decision on progressing to a treatment with more umph to ensure this issue gets resolved. It is likely that is the direction we will go, but the esophagram may alter that plan.  If we go with the treatment, I'll be here for 10 more days. Good thing they have free WiFi :) The coffee could really use some improvement though.

I feel good, much better than I did the year prior to my transplant.  This is just an 'issue', something that is part of living a life with new lungs. Becoming resilient is an important part of life after transplant. There will be setbacks, I trust my team to resolve these issues and get me back to life with my Sweetie.

My test results should start popping up in MyChart tomorrow.  I'll post anything that looks interesting. I find all of it interesting so I'll at least share the major findings.


  1. Hang in there and thanks for the update! I know you'll come out on the winning end of this with the help of that awesome team, good drugs, and love and prayers from your cheering section!