Minutes from one of our Support Group meetings.

Third Raleigh Duke Support Meeting February 3, 2016

Mary Tate, our group leader, assisted by Rose Marie Smigla from the Duke Hospital Pulmonary staff, opened the meeting promptly at 10:00AM at the St. Thomas More Catholic Church ( 940 Carmichael street, chapel Hill, NC ,27514) by reminding the attendees about the standing guidelines and agreements about the conduct of our meetings:

1- Whatever discussed in our group will be considered confidential and only shared by permission. 2- Support meetings are held every other month unless the attendees vote to change that. 3- Everyone is invited to attend and bring interested friends. 4- Copies of previous meeting minutes are available by sending a request to Mary Tate – mtategraham@embarqmail.com. 5- We ask every interested person to provide an email address so we can communicate news about future meetings.

The general topic for this meeting is a presentation by Doctor Lake Morrison, assistant Professor and Program Director, Dule Pulmonary Directorate, His topic is entitled “Cough, Cough” an issue all patients of Interstatial , Ideopathic Pulmonar Fibrosis deal with. (This was an important and detailed discussion. Please bear with me if I misspell or erroneously state an item… Jerry),

This topic deals with various exposures that aggravate the IPF condition to such as drugs, tobacco, dust and inorganic sources such as asbestos , and mold, and bacterial sources (birds, etc.). The term “Idiopathic “ generally refers to the fact that we may not clearly trace the condition of pulmonary scarring to a single common cause; but observations are that scarring begats scarring ( continues to spread and grow worse over time). The tissue inside and between air sacks becomes thick , stiff, and scarred. As the lung tissue becomes scarred, oxygen cannot pass through to the red cell, which

carries oxygen. This creates hypoxia, creating a reduction in all body tissues including the heart and the brain. Once the lung tissue has become scarred, the damage cannot be reversed. Thus, paying attention to the symptoms for the disease is important… the consequence of which is that various factors contribute to the point of being Interstation Pulmonary Fibrosis with attendant and troubling coughing. Our discussion involves trying to identify what causes coughing.

Dr Morrison sketched an outline of a typical body with graphical representation of the location of individual receptors that are tied to vega nerves that are tied to the medulla in the brain that connect to nerves that deal with how we breath.

Inside the brain-lung system:

a) Pneumonia-flu, colds, spicy foods, etc.

b) Esophageal-gastro reflex in the lungs.

c) Sinus and post nasal drip … leaks into the airways.

d) Brain stimulated coughing

Receptors outside the lungs

a) Inhaling smoke, scents perfumes, exhaust

b) Exercise – exercise induced cough ( related to a drop in Oxygen level)

c) Talking and laughing

d) Changes in temperature and humidity

Some statistics related to this discussion … frequency, within our US general population

Asthma 62 new cases per day

COPD , 118 new cases per day

IPF , 226-520 new cases per day

General impact information

We are still learning researching and about detecting and treating this disease

– For some reason, IPF patients don’t seem to cough much during sleep.

– The condition impacts your daily exercise day.

– Coughing frequently happens when our oxygen level drops … when this happens it detracts from your life span

Fundamental Question : Why do patients cough ?

It’s the scarring in the lungs that causes that. The distortion in the airways triggers

receptors that lead to irritating coughing.

– Doctors sometimes prescribe low dose Prednesone (5-10 mg range) and anti-fibrotic

drugs in this range.

– Reflex is a big thing ; specifically acid that enters the esophagus. The goal is to suppress that acid. Dr Morrison drew a diagram to show that as the lung shrinks and the stomach gets smaller, the stomach creates a hiatal hernia that pushes up into the chest. Three things a typical patient can do to “manage” this condition:

1- Diet – use less chocolate

2- Diet – lose weight

3- Eat smaller meals

4- Elevate the bed while sleeping …3-4 inch wedge, and use several pillows

– Sleep Apthena – the use of sleep mask equipment helps the system to work while we sleep when the airways get smaller, in cases where the chest is still moving but the patient intermittently stops breathing. Low levels of Oxygen contribute to scars which supports to herniation.

– Another cause for cough is Nasal Dripping often treated using Flonase spray. Other tools the Doctor uses to reduce cough (based on individual patient conditions) are various narcotics such as : Tessalon Pearl pills, McClariphan, Dextrophic Clariphan, Menthol, Gabba Penton. Dr Morrison stated that while these medicines are useful in reducing coughing, they don’t “fix the lung problem”.

– The morning cough ( to clear morning secretions that pool) is a very common problem for IPF patients. A teaspoon of Codine can be helpful, but the negative side is it can lead to an addiction. NAC is an anti-oxidant that has been used and was thought to be useful for IPF until a 2004 study confirmed that NAC is not a recommended solution.

Some patients have a dry morning cough; some have a white substance cough. Coughing is an interesting reflex, but for the most part the cough won’t eliminate the stimuli. Sometimes a small dose of honey bourbon with lemon can be useful in the management of the automatic brain response ( i.e. I’ve experienced that reaction before … I’ve got to get ready to deal with that) “There’s nothing intrinsically about a cough that tells us where it’s from”

– IPF is still quite rare. It starts at the far reaches of the lungs ( typically crackles heard at the bottom of the lungs) . There are a variety of areas that are under review;

– tobacco infections with some notion of genetic susceptibility

– Genetic codes and questions about stem cell and bone marrow research, the idea that we might be able to use stem cells to repair genetic conditions( essentially an “unpainted canvas”).

Before closing his presentation, Dr Morrison commented that there are items you can provide to assist in diagnosing your personal situation.

1- What has happened (to you) in the last three months? Be prepared to talk about this.

2- What medicines are you taking?

3- What is happening concerning your quality of life?

4- Are there any new symptoms you are experiencing?

5- Provide a chronology ( a diary) of what has happened to you over time.

These minutes were prepared to the best of my ability by Jerry Moon.

Mary Tate provided a special cake during the refreshments period to honor the retirement of Elaine Pelletier, a pulmonary triage nurse, from Dr Morrison’s Duke Pulmonary Clinic. Elaine has been the “lifelink” for many. She has announced that she will remain active with Pulmonary Fibrosis issues and our support group. She has already posted an active blogsite on this issue.

Everyone should access this blog for current, pertinent information. See https://pulmonaryfibrosistogether.com/home/

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