April ILD Support Group Recap #3

Observational Trials are also important to moving scientific knowledge forward. Archer Eller also discussed a study funded by a grant called ROMII to study microaspirations (GERD/Reflux) and ILD.

The study includes:

30 people with other ILDs other than IPF

30 people with IPF

60 healthy people

They are primarily using a Bravo capsule that will be clipped onto the esophagus as a transmitter and the patients will use a pager. Eventually, the transmitter will detach and be flushed through the system. This is the study I was invited to join, though I did not qualify. I had a Nissen Findoplication, which stops GERD.

There has long been the question of which came first – Interstitial lung disease or GERD. Fibrosis or inflammation.

The study will involve IPF patients, which is a restrictive lung disease that changes the lung to become stiff. The thought is that while it is growing stiff, it is pulling away from the connection at the end of the esophagus. They also are looking at connective tissue diseases like lupus, scleroderma and arthritis to see if they also show signs of GERD and this “pulling” away from this connection causing stomach acids or microaspirations to enter the lungs.

And finally, the question of whether everyone has some sort of aspirations.

We also learned there is another observational study looking at Biomarkers. They are looking at telomeres in patients DNA. Interesting.

Next month, a woman I met at the Lung Transplant clinic will be speaking to us regarding that process which I have detailed beginning here:

http://livingwellwithabaddiagnosis.blogspot.com/2011/05/lung-transplant-information-1.html

Finally, there was a woman sitting in the back of the room and was quiet until the end. We notice that when a new person joins the group, they need to tell their story. It is good for them. We are a group who can offer support and our own experiences to help a new member. She was really needing help.

She announced that she is one year away from lung transplants but is not able to move forward in the process because she just couldn’t get under the mandatory 30 BMI. I raised my hand and told her that I had help for her and that we would talk after the meeting.

She is a patient of Kaiser. I spoke with her briefly, told her to ask her doctor for a referral to the ILD Clinic. She was worried about who would pay for this change and another member of the support group talked about his experience being a Kaiser patient. She would still be a Kaiser patient even though she is being seen at the ILD Clinic. Next, I told her about my experience at the Weight Management Clinic and told her to ask for a referral from the ILD Clinic at her first appointment.

It gave her hope.