Saturday, February 25, 2017

Home From the Hospital, Next Steps - 2/25/17

It is very nice to be home again. Slept in my own bed last night and sitting in my own little corner of the living room typing this update.

Coffee, water, meds and "Fixer Upper" on the TV.  Nice way to spend a cool N. Texas Saturday afternoon.

I was released from UT Southwestern yesterday afternoon after my Team came to a pretty definitive conclusion as to what has caused my recent decline in lung function.

I recently posted about the "Potential Complications of Lung Transplant - Part 1 and Part 2".  Part 2 included some of the Gastrointestinal Complications that could occur during life after transplant. One of the potential complications mentioned was:
Long-term gastrointestinal complications are common in lung transplant recipients, likely due to higher doses of immunosuppressive medications. ... Long-term common complaints are of nausea, vomiting, gastroesophageal reflux disease,.. It is estimated that over 60% of patients who have undergone lung transplant have at least one gastrointestinal complaint, and while mild, it can have significant impact on the quality of life of these patients.
My issue is reflux. An Esophagram found "Gastroesophageal reflux to the level of the clavicles noted in the supine position." This is a major change from my pre-transpolant test which indicated zero reflux.

We will have to address this issue aggressively. Post-transplant reflux is not a diet or lifestyle issue, it is due to the medications.

After some more testing, the team will decide between one of two options. First option is to perform a Nissen Fundoplication, also called a Nissen Wrap.

The second option is to insert a feeding tube that bypasses the stomach. There are several different versions and I'm not sure which one the Team was talking about so can't really post an image or link right now.  If we go that route, there will most defiantly be a post with all the correct information.

I have three exams to complete before they decide which path to take. I completed the first of the three Friday morning. This was the "Gastric Emptying Study".  Basically I ate some radioactive scrambled eggs and the technician scanned the location of the food right after I ate, 1 hour later and then after 4 hours. The results were normal:
1. This is a normal solid phase gastric emptying study. 
 At 1 hour, 15% had emptied (normal 10-70%).
At 4 hours, 95% had emptied (normal greater than 90%).
The next two exams are an Esophageal Motility Study and a PH Impedance Test. The Esophageal Motility study will determine if the muscles in my esophagus are working properly or not. The PH Impedance will verify the extent of the reflux. The motility study is the important one as this will determine which path we take to address the reflux.  If the muscles in my esophagus are not working properly, performing the wrap would not be a good idea and I will be placed on the long term feeding tube.

I could not swallow properly following my transplant and came home with a temporary feeding tube and was not allowed to take anything by mouth. As I did have this previous issue, I feel the odds of being placed on a permanent feeding tube are fairly high. Still hoping for the wrap though :)

This really bothered me for awhile, more so than I thought it should. The steroid pulse that I had just finished up might have been a part of it, but also is that fact that this isn't one of the complications that I had thought much about and prepared myself for. I've done such a good job of countering many of the other mental and physical effects of the meds that reflux just didn't cross my mind. It's not like there was anything I could do to try and keep that esopageal sphincter and the muscles in my esophagus working properly. I'm pretty close to acceptance now, and of course planning either future.

Either way this goes I will still have a future, and it will continue to be awesome. I can't wait to experience all of the new special moments that are ahead of me.

The next studies are scheduled for March 7th. We have to wait until after the prophylactic PPI's that I have been taking clear my system so they can achieve an accurate PH study.


  1. Love you, John, and love your perspective. Sounds like you're in great hands.

    1. Thanks Molly, I have an awesome Team :)

  2. Keep on trucking, John!

  3. No matter the outcome, you will rise above cuz that's just you!

    1. Thanks Nancy. I was thinking last night (dangerous, I know). We should probably have that lunch a Pappadeaux sooner than later :)

  4. Great group of supporters John. Thanks for keeping us in the loop of possibilities. You are such a good example for all you come in contact with.