Wednesday, October 29, 2014

Special Edition: My Lung Transplant Jouney, October 29, 2014 - Oh My GI!

It took the tech 3 tries to get the PH monitor in!
GI as in gastrointestinal, or as I like to say "tummy troubles" because words for problems with the digestive track gross me out - eeewww!

Of course, GI issues can be much more than stomach aches or other yucky things that make one feel sick. They can involve many different parts of the body's digestive track.

My GI issues include GERD
(gastroesophageal reflux disease), and a lack of motility in my esophagus. These problems are both complications of Scleroderma, which was not cured by the lung transplant by the way, but more about that in a future post.

My doctors need to watch these GI issues closely because they don't want anything aspirating into the new lungs. In fact, these very GI problems pegged me as high risk in terms of transplant right from the get go! As a person living with Scleroderma, I need to keep the GERD symptoms under control in order to protect my new lungs as well as my overall health and well being. This can be done via medications and lifestyle choices such as diet, dining, and sleeping. No spicy tacos late at night for me!

So how do docs keep these GI problems in check? Well class, that would involve some oh-so-lovely testing taking place this week including an esophageal manometry test, a 24-hour PH monitoring study, and a visit to the molecular imaging lab for a gastric emptying study. All of these tests can be unpleasant as I have experienced them in the past during the transplant evaluation process and within the 10 years since my diagnosis of Scleroderma in 2004. The esophageal manometry test is a swallowing test where they place a thin tube down your nose then you drink sips of water over a period of 10 minutes or so - eeewww! I have failed this test in the past, and did so again today because my esophagus is essentially a "lead pipe." Food goes down the hatch by gravity for me!

The PH monitoring study essentially involves placing a thin tube down one's nose and into the esophagus. Who invents these tests? Again I say, eeewww as this test makes me gag - no joke! The probe is attached to a little machine that records episodes of acid reflux for 24 hours, and allows the patient to note symptoms such as coughing or heartburn at the push of a button! Then, the gastric emptying study is essentially an x-ray that tracks the movement of food - usually cold (radioactive) scrambled eggs and toast, through one's stomach. It's not that bad, just long, boring, and the food is just yucky! These are just three of the tests on my plate this week to assess GI issues, get it - on my plate? Ha ha ha - I need to keep my sense of humor despite of everything, even if I am the only one laughing!

Although these tests are annoying and uncomfortable, I do know they are important to the overall assessment of my new lungs and my recovery process. The good news is that these tests will be done before Halloween so I can enjoy some chocolates or other treats on Friday. I am a sucker for candy, and I won't have the luxury of stealing some from the kids' bags this year. BOO hoo!

Happy Halloween!


  1. Hi Sue, thanks so much for sharing the details of your experience. You are an inspiration to those of us with Pulmonary Fibrosis. It sounds like your lungs have to adjust to their new rib cage like a person with braces on their teeth. Painful adjustment, but likely the end result makes it worthwhile.

  2. I wonder if a lite shoulder harness will give you any support.

  3. It's so amazing to hear about all these tests; although of course you'd rather not be the teacher with practical experience. I never knew these tests and treatments existed. Unbelievable. Keep up the progress! I hope you are finding the chair a great comfort.