My mom and I thought we would start to blog about life with COPD/emphysema and our hopes that
one day she will be having Lung Volume Reduction Surgery (LVRS). We decided to do this for a
few reasons: to keep those updated who would like to know how things are going,
to keep a log for our reference, and to hopefully provide information and
support to those who may be struggling through the same situation or may be just diagnosed with COPD/emphysema and are looking for information. So this may
be a lot more detail than some people want!
:-) But, it was information we were looking for in our efforts to fight this beast!
Let me start with sharing how we got to where we are
today. In 2007, mom was diagnosed with
emphysema. What exactly is emphysema? Emphysema is a progressive, irreversible
disease that slowly destroys the elastic fibers that hold open the small
airways leading to the air sacs, allowing the airways to collapse when you
breathe out, so the air in your lungs can't escape. This cause a person to become short of breath. The lungs progressively get larger,
collapsing the diaphragm, not allowing the diaphragm to do it’s job of pushing
out air. Emphysema is diagnosed by an
X-ray and/or CT scan along with a pulmonary function test. In 2007 a x-ray and pulmonary function test
was performed. One of the test that is
performed to determine the severity of the emphysema is a FEV1 (forced expiratory volume) test. This measures
the amount of air a person can forcefully exhale in one
second. In 2007 this value was ~50% of
normal.
What does this
mean?
- Mild emphysema: FEV1 greater than or
equal to 80% of normal
- Moderate emphysema: FEV1 less than 80%,
but greater than or equal to 50% of normal.
- Severe emphysema:
FEV1 less than 50%, but greater than or equal to 30% of normal.
- Very severe
emphysema: FEV1 less than 30% of normal, OR less than 50% of normal with
low blood oxygen levels.
So at this point the emphysema was considered
moderate to severe. But, mom could still breathe and remain pretty
active. At this time the Dr. prescribed
an inhaler, exercises, and to stop smoking.
Mom stopped and started smoking a few times throughout this period, but
never successfully kicked the habit. It
is hard to stop such an addicting habit that she had since she was 20 years old
(when it was considered acceptable). And, after all, her dad smoked his whole life,
with emphysema, and lived without issues until he was 84.
Life went on pretty normal with increasing
shortness of breath until June of 2011, when she got sick. Mom stopped smoking!!!!!! She was put on prednisone for a week and antibiotic,
but never regained her “normal” breathing.
Normal tasks like making the bed, doing laundry, vacuuming, walking to
the mail box, going to the grocery store, etc… became almost impossible. Just walking from one end of the house to
the other she was very short on breath and had to take a break. In order to feel comfortable and not out of
breath, she had to sit in a chair. And,
for those who know my mom, It is NOT like her to sit in a chair!
So, with my sister being a physical therapist, she insisted
that mom start going to pulmonary therapy.
And, with me an engineer, I started researching. Living 4 hours away, that is the least I
could do. So, December 1, 2011, she started
going to pulmonary rehab at which point they preformed the pulmonary function
test again. This time her FEV1 was at
26% (Very severe emphysema). This is
scary! Emphysema does not get
better! She is only exhaling 26% of the
air that she is supposed to. And, with
the lungs compromised, she was put on supplement oxygen 24/7 to keep her oxygen
levels up.
In the meantime, I was researching clinical trials,
treatments and anything I could find to try to make this better! I emailed a Dr. at John Hopkins that was conducting a clinical
trial to see if it was something she could participate in. He said, because of the distance that this
would not be feasible, but there were 2 of the best doctors in the nation right
near us in Ann Arbor. He also stress how important pulmonary rehab was and to take it very seriously. I
forwarded this information to my mom and she made an appointment in Ann Arbor. She was able to
get in within 3 weeks, which usually takes months to get into! We were very excited. They wanted her to get a CT scan of her lungs
and have it sent to them. Also, as part
of the pulmonary rehab, they required a visit to a cardiologist to determine if
the emphysema has caused damage to the heart.
A CT scan was done on the lungs and heart with a dye injection, along
with an EKG, stress test and cholesterol test.
Heart looked great! This is good
news! Cholesterol was a little high at 215,
so he recommended getting on medication to prevent any potential damage to the
heart (we need to keep this strong). And
the CT scan was left for review in Ann Arbor.
So, off to Ann Arbor on February 7, 2011. Mom had another pulmonary function test
before meeting with the doctor, who
was absolutely amazing! What a wonderful
doctor!!
Here are the notes I took from
the doctor visit:
The doctore confirmed that in June of 2011, she had an exacerbation of
the lungs.
COPD is an inflammatory disease of the lungs that is not
easy to treat. Exacerbation of the lungs and increase of
shortness of breath is a sign of increase of inflammatory cells of the
lungs. When the lungs are inflamed, they
push down on the diaphragm and the diaphragm is collapsed and does not have
room to move to push the air out of the lungs.
· In the last 5 years it has become clearer that
some people, mainly women who have increase of inflammatory cells in the lungs
and just never goes away.
· They remain at a heightened inflammatory state
and never goes away.
· These people have more loss of lung function and
quality of life over time.
· How to manage this in COPD is one of the big
areas of focus in COPD research right now.
The current meds that she is on as of 2/7/2012 – Spiriva, Albuterol,
-
Dr. said she should be on an inhaled steroid
because of an exacerbation in the past year.
(i.e. Advair, Symbicort)
- She has COPD with an emphysema pictures on CT Scan
There are 3 major therapeutic treatments for emphysema/COPD:
1. meds
2. rehab
3. surgery
MEDICATIONS:
Meds are Spiriva and when lung function is below 45 – 50% of
predicted they will add an inhaled steroid with a long acting beta agonist that dilates the airways. (Advair and Simicort, Ulara at FDA for
approval). The combination of Spiriva plus
an inhaled steroid is a good combo.
Albuterol (nebulizer) is a short acting beta
agonist. It is a drug that binds to the
muscle in the lung that has beta receptors.
Last about 3 - 4 hours.
Steroid inhaler (once in the morning and once in
the evening) all have drugs that the name ends in "al". Long acting beta agonist. Should have to us nebulizer less.
There is a long acting beta agonist that last 24
hours that will be released in a month from the FDA.
Repeated illness makes the exacerbation worst, decreasing the FEV1.
Daliresp – Is a medication to consider if you produce flem
to reduce exacerbation. If don’t produce
flem, not worth taking.
Cholesterol meds – There is a large study with cholesterol
medications “Statin” in patients with COPD.
(Zocor - generic:
Simvastatin). Exclusions
for being in study is if you need to be on it anyway. They are testing people who don’t need to be
on a cholesterol med to see if it helps with lung inflammation. It is great that she is on this because it may
help with the lungs. If she didn’t need
to be on it, then he would have considered the study. "Since you were prescribed it... take it!"
Rehab is crucial!
- Healthy lungs like a tight sponge.
- Emphysema is like a luffa with air holds.
- None smoking will keep it from getting
worst.
- If the emphysema gets worst, it is not so much
that the emphysema has progressed, it is
more that the muscle are not as strong.
Right now you are using mostly shoulders to breath.
- Rehab changes muscle function not lung
function. If doing more activity you
will live longer. Sitting on the couch
with COPD is a bad thing.
Dr. has been involved with both Lung Volume Reduction
Surgery (LVRS) and lung transplants for 20 years.
LUNG VOLUME REDUCTION SURGERY (LVRS):
·
LVRS is clearly easier.
·
Less risk.
·
Option for a very narrow group of people.
·
Severe emphysema and emphysema is predominately
in the upper lung zones. Radiologist
will review in the next week
·
Need to have enough limitation in exercise
capacity: Need to pass a severe limitation test by riding a bike while
breathing oxygen and if you go less than 40 watts = pass
·
It is definitely worth considering the surgery.
·
Could be dramatic in terms of its benefits
·
Not simple.
It is a big deal.
·
Decreases mortality by 50%
·
Increases exercise capacity by 8 times.
·
May need to re-due CT scan.
·
Benefits are maintained for 5 – 10 yr
window. Resets time 5 – 10 yrs.
·
Would lose transplant opportunity for lung
transplant if have LVRS because they will not do a transplant after the age of
65.
·
2-3% mortality from surgery a little lower than
the risk of a bypass.
·
Breathless is not do to oxygen levels. It is do
to mechanics of the diaphragm not being able to expand because the lungs are so
enlarged.
·
LVRS will remove 20 - 30 % of the top lobe of
the lung.
·
Most of the UofM surgeons perform the surgery
microscopically
·
"my sense is that your emphysema is mostly
concentrated in the upper lobes, but we need the radiologist to look at
it"
·
If she only does meds and rehab, the likely hood
would be that she would remain at this level or get a little worst over time. Variable... only God knows.
·
"I feel like I am getting worse fast"
(mom)
·
Need to finish 8 weeks of rehab.
·
UofM worked with Alpena for rehab of lung volume
reduction patients. They know what they
are doing.
·
Will not get off of oxygen with just rehab
·
LVRS may get off of oxygen
·
FEV1 has to be 21% - 45% to qualify for LVRS
LUNG TRANSPLANT:
·
Very aggressive
·
Single lung transplant at 63 yrs.
·
Problems: 17 meds, risk of rejection, Infection
·
Upper age limit.
Past 63 – 65 need to do out of state.
·
Mortality: 20 % at 2 yrs, 40% at 5 yrs and 60 %
at 10 yrs.
·
Selection
and timing is very important. Can’t be
sick.
OXYGEN:
Low oxygen levels will make you a little more breathless,
but the breathlessness is mainly caused by long volume. The diaphragm is collapsed with
emphysema. Take a breath and then take
hold your breath. Take a breath on top
of that. That is what someone with
emphysema breaths like. People with
emphysema are breathing at a higher lung volume. Lungs are hyper inflated at rest. Spiriva and Advair deflate the lung letting
you breathe at a little bit lower the lung volume (reduces by 100 to 200 cc).
·
The issue with oxygen: It is a drug that is
metabolized in the lung to oxygen radicals causing inflammation in the lung.
·
If oxygen is low at rest then being on oxygen
will improve life span. (if below 88%)
·
Oxygen worsens survival when it is high at rest
and decreases with exercise. Doesn't
mprove shortness of breath.
·
Do 6 minute walk to determine the need for
oxygen. If the level is 93% not on Oxygen and at rest and decrease to
85% with exertion, there is a study going on in the population to determine if oxygen
improves or decrease survival. 17
centers (34 individuals) - No one knows the answer for sure. if it helps or not.
·
Studies show if oxygen is low at rest you need
oxygen (below 88%).
·
If oxygen is OK (above 88%)at rest, then
decreases with activity (this is called exertional de-saturation) then it is
not determined yet if oxygen is needed.
This is what the study being conducted is for.
·
If you are off oxygen for a 1/2 hr and rest and
above 88% then, you may not need oxygen
·
”Do I need to be on oxygen while working?" Dr:
"Is it horrible to be off oxygen?
Not horrible. Would it be better
to be on oxygen? yes But, you are better off doing something. I will leave it up to you if you wear the
oxygen. You are a smart lady"
So
where do we go from here:
Mom's case was set to be presented
to the board on Feb. 28, 2012. The CT
scan would be reviewed by the radiologists and each lobe (3 lobes - top,
middle, end) would be graded from 0 - 4 (0 = no emphysema and 4 = > 76% or more emphysema). The numbers need to be 3-4 at the top and the
middle/bottom had to be rated less than 3.
The board would then determine if she is a candidate to move on with
further testing.
Next
steps:
·
CT Scan needs to be reviewed (may need a new CT)
by the board to determine if she is a good candidate to continue with more
testing.
·
Will need a ventilation perfusion scan (blood
flow - like a CT)
·
Would need a heart test but this has already
been completed.
·
Best case they tell you that it looks
reasonable, then finish 8 weeks of rehab
·
Come back to UofM to ride a bike, then meet the
surgeon to decide if you move forward.
It is an elective surgery. Should
improve quality of life. Should have
survival benefits. In a study that was
done, people who had surgery survived longer than people who didn't.
So here we are HUFFING n PUFFING, hoping and praying that she is
excepted to have the surgery. Since the
appointment she started taking Advair which really improved her breathing a
lot, but still far from normal. She is
able to do simple activities which were not possible before, make the bed,
laundry, make dinner.....
We are so thankful for her doctor and his nurse at UofM Ann Arbor! They have been like angels
sent to us from heaven! We pray that mom
gets accepted for the LVRS.
