Dr.
Michelle Milic was the guest speaker at the November ILD Support Group meeting
yesterday. She is a pulmonologist who just sat for her Palliative Care
boards. Thanks to a large donation, she is beginning an entirely new
program called Symptom Management Clinic specifically designed for advanced
lung disease patients. It will be palliative care. The university currently has
a similar program at their cancer center.
What is
Palliative Care? From the Internet:
Palliative
care (pronounced pal-lee-uh-tiv) is specialized medical care for people with
serious illnesses. It focuses on providing patients with relief from symptoms,
pain and stress of a serious illness – whatever the diagnosis. The goal is to
improve quality of life for both the patient and the family.
The
symptoms to be addressed in this clinic for ILD patients will include:
- Shortness of breath
- Fatigue
- Cough
- Depression
- Anxiety
Staff in this new clinic will include a nurse, palliative certified physician, chaplain
and social worker. Issues addressed will include symptom management, coping
skills, pain management, relationships, physiological/social issues and
spiritual support.
Social
isolation is so common for people with a chronic disease. The clinic will help
patients with specifics on how to deal with the physical and emotional issues
of simply getting out of the house and into life. That will help improve their
daily quality of life and lessen the feelings of isolation.
Harvard
did a study of lung cancer patients, which offered a choice of the usual care
or palliative care. They found that the patients who received palliative care
reported fewer symptoms, less depression and lived an average of three months
longer.
There
were many new people at the meeting and the discussion focused on sleep issues
and coughing. Sally, who heads the Support Group, was rather shocked to
discover how many of us have problems with sleep. She will now contact the
sleep expert – also a pulmonologist – to speak to us at an upcoming meeting. I
have written in past blogs about “night terrors” and many hours of being awake
some night.
I have
always been grateful that my specific ILD doesn’t have a phlegm or wet coughing
issue. Some of the stories I heard were awful. It really does affect the
quality of life of so many ILD patients. One man spoke about anytime he experiences
changes of temperature – leaving the house, as an example – the “waterworks”
begin. His nose runs and very dramatic coughing starts. One person mentioned
that he no longer goes to movies, plays or concerts because he was worried that
the coughing would begin and bother other people. These coughing sessions are
not just a few hackings; they are long, laborious, physical exercises. One
person mentioned that his saturation rated dropped into the 70s while he was
coughing.
The conversation reminded me of my own issue with aspirating a sip of coffee years ago. I experienced a deep
cough trying to get it out of my lungs and felt the terrifying inability to inhale.
I thought I was going to pass out. One other person at the meeting also
described the same situation in which he often experiences – he had esophageal
cancer two years ago which may explain why he experiences this often.
So, I
asked: Will the laborious coughing in which the saturation rate drops into the
70s or my own experience actually cause a person to pass out? It feels like you
are going to blackout. She answered that the cause of my specific issue was
that the lungs were protecting themselves from anymore coffee going into them
so my vocal chords spasmed shut. No liquid in. No air in. Had I passed out,
the vocal chords would have relaxed and air would have flowed into my lungs. Sally commented that she had often faced a seated person going through a coughing session at clinic and tried to have them focus on her demonstration of slow, purse-lipped breathing, which seemed to bring the coughing under control in many cases.
Oddly, knowing that I would have been able to breathe after I passed out made me feel better! I had visions of Michael trying to do CPR or even
doing nothing until help arrived causing brain damage due to lack of oxygen.
It was
a very interesting meeting. I think we helped an entire family who was at their
first meeting after traveling several hours to attend. The father/husband had
been newly diagnosed with an ILD and was at the beginning of his journey. We
were able to offer him several suggestions including sleeping on a wedge and
melatonin. He is seeing a local pulmonologist but had met with one of the
university pulmonologist just once for a consultation. His wife noticed that he
felt so much better after a small dosage run of prednisone. I explained that it
is an anti-inflammatory drug and that they might want to see their doctor at
the university clinic again to review his biopsy slides. So few ILDs respond to
prednisone that they might want to revisit his diagnosis.
Susan
and I had a nice lunch before the meeting. I thought she was retiring this week
but due to calendar issues, she will actually leave her job in January. I am
trying to encourage her to help write a book or pamphlet with all the
information we have learned living with a lung disease to be distributed to
newly diagnosed patients. She is an excellent writer.
As part
of the new Symptoms Management Clinic, they will be offering a resource center.
I would love to be part of that process. We, in
the group, talked about having the latest research materials, appropriate
articles in peer review journals, help with symptom management and so much
more included in the center.
In
other news: I received a phone call from my sister while waiting for Susan. Her
daughter, Shelley had been notified as a friend of her Uncle Bill on Facebook that he had died. His wife posted that she lost her best friend on November 10th
from cancer. Shelley was blindsided. She had no idea. She phoned her dad who
also had not been notified. She still has not been able to reach his
wife nor been notified of any funeral services and fears that they have already
happened.
Bill
was present at Shelley’s wedding just six months ago. As a person who had lived
with Crohn’s Disease since the 1970s, he looked very thin which we thought was
due to that disease. We had no idea he was dealing with cancer. Shocking.
No comments:
Post a Comment