tag:blogger.com,1999:blog-74820018274521402992024-03-19T00:34:19.015-07:00Cure COPDNot just a smoker's disease!Sallyhttp://www.blogger.com/profile/08026578219849835139noreply@blogger.comBlogger19125tag:blogger.com,1999:blog-7482001827452140299.post-29602861519527308422015-01-21T13:58:00.000-08:002015-01-21T13:58:34.178-08:00 44 LAPS<div class="MsoNormal">
<span style="font-size: 14.0pt;">For some time now I’ve been
doing laps in my apartment most every morning. One such lap consists of walking
from my bedroom, through the hall, living room and porch to the outside porch
door and back. While it may sound boring to some, to my mind walking inside my
apartment beats walking outside because I don’t have to push my portable oxygen
alongside me while I walk.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: 14.0pt;">At first I was only doing 10
such laps every morning. Then 10 laps became 15 and, not long thereafter, 15 laps
became 20. But after being content with 20 laps a day for a while, I decided to
challenge myself even more. As a result, 20 laps became 30 and there I stayed
for the last couple of months. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: 14.0pt;">Yesterday, however, I got to
30 laps and suddenly decided to try to go further. Then, after doing 35 laps I
said to myself, “What the heck, might as well do 40”, and I did. Today I did 40
laps again and then I decided to try and figure out how far I had actually
walked. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: 14.0pt;">First I carefully counted how
many steps it took me to walk from the bedroom to the outside porch door and
back. Then I had someone else measure how far I walked in one step. Using that
information I was able to calculate how far I’d walked in one lap and then in
40 laps. </span><span style="font-size: 14pt;">Amazingly, I found out that
if I had walked only 4 more laps I would have walked a mile! </span></div>
<div class="MsoNormal">
<span style="font-size: 14pt;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: 14pt;">So that’s my new goal
– 44 laps or one mile a day. Do you have an exercise goal?</span></div>
Sallyhttp://www.blogger.com/profile/08026578219849835139noreply@blogger.com77tag:blogger.com,1999:blog-7482001827452140299.post-22616463604070881452015-01-11T14:12:00.000-08:002015-01-11T14:12:19.846-08:00NEW LUNGS?<div class="MsoNormal">
<span style="color: black; font-size: 18.0pt; mso-themecolor: text1;">“What if Age Is Nothing But a Mindset?” That’s the title of an article
in last week’s New York Times Magazine. The focus of the article is the
research of Harvard psychologist Dr. Ellen Langer. Dr. Langer has done numerous
studies to demonstrate that by changing our perception of ourselves and what we
are doing we can improve our physical health <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="color: black; font-size: 18.0pt; mso-themecolor: text1;">One such study involved a group of hotel chambermaids who had complained
that they didn’t have enough time to exercise. Dr. Langer told only half the
group that they didn’t have to worry because their work was serious exercise. One month later that half had lost weight, but the other half had not. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="color: black; font-size: 18.0pt; mso-themecolor: text1;">According to Dr. Langer, it’s all about one’s mindset. Half the chambermaids realized that what they were already doing was exercise and their bodies reacted accordingly. Taking that concept one step further, Dr. Langer has taken seniors to a places set up to evoke memories of a time when they were younger and healthier and, one week later, most emerge
feeling younger and healthier.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="color: black; font-size: 18.0pt; mso-themecolor: text1;">Dr. Langer calls the latter counterclockwise studies and she’s about to
embark on a really ambitious one. Her goal is to reduce the size of tumors on
women with stage four breast cancers. Her plan is to house the women for a week
in a place that will evoke memories from before they were diagnosed with breast
cancer. Wouldn't it be wonderful if she’s successful.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="color: black; font-size: 18.0pt; mso-themecolor: text1;">Meanwhile, I’m excited about the possibility of using my mind to improve my lung function, maybe even to grow
new lungs. Could I actually improve my lung function merely by thinking and
acting like it is improved? In addition, if I transported myself to a place evoked memories from before I went on
oxygen, would my lungs start to regrow?<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="color: black; font-size: 18.0pt; mso-themecolor: text1;">My mind is spinning with the possibilities! Obviously I don’t expect to
be climbing mountains anytime soon. My goals are pretty simple. If I could walk
a little faster, climb stairs a little easier and use less oxygen that would be
a great start. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
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Sallyhttp://www.blogger.com/profile/08026578219849835139noreply@blogger.com78tag:blogger.com,1999:blog-7482001827452140299.post-35152406879067758652014-10-15T06:05:00.000-07:002014-10-15T06:05:51.976-07:00BREAKING NEWS: A CURE FOR COPD<br />
<div class="MsoNormal">
<span style="color: black; font-family: Arial; font-size: 18.0pt; mso-bidi-font-family: "Times New Roman"; mso-themecolor: text1;">Unfortunately this headline
is still a dream. But we could help make this dream come true if all of us with
COPD sign up for the new COPD Patient Powered Research Registry. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="color: black; font-family: Arial; font-size: 18.0pt; mso-bidi-font-family: "Times New Roman"; mso-themecolor: text1;">We need more research to
find a cure for COPD. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="color: black; font-family: Arial; font-size: 18.0pt; mso-bidi-font-family: "Times New Roman"; mso-themecolor: text1;">One way is to attract more
scientists to study COPD. But we need more money to attract more scientists. In
a nutshell, that’s why the COPD Foundation created a Patient Powered Research
Registry. <o:p></o:p></span></div>
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<br /></div>
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<span style="color: black; font-family: Arial; font-size: 18.0pt; mso-bidi-font-family: "Times New Roman"; mso-themecolor: text1;">What is the Patient Powered
Research Registry? More important, how will it help those of us with COPD find
a cure? To paraphrase Bill Clark, Senior Director with the COPD Foundation, its
purpose is to establish a ready base of patients interested in clinical trials
that will, in turn:<o:p></o:p></span></div>
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<!--[if !supportLists]--><span style="color: black; font-family: Arial; font-size: 18.0pt; mso-fareast-font-family: Arial; mso-themecolor: text1;"><span style="mso-list: Ignore;">1.<span style="font: 7.0pt "Times New Roman";"> </span></span></span><!--[endif]--><span style="color: black; font-family: Arial; font-size: 18.0pt; mso-bidi-font-family: "Times New Roman"; mso-themecolor: text1;">Speed up the development of new medications
and therapies;<o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 56.0pt; mso-add-space: auto; mso-list: l0 level1 lfo1; text-indent: -20.0pt;">
<!--[if !supportLists]--><span style="color: black; font-family: Arial; font-size: 18.0pt; mso-fareast-font-family: Arial; mso-themecolor: text1;"><span style="mso-list: Ignore;">2.<span style="font: 7.0pt "Times New Roman";"> </span></span></span><!--[endif]--><span style="color: black; font-family: Arial; font-size: 18.0pt; mso-bidi-font-family: "Times New Roman"; mso-themecolor: text1;">Speed up new research for a cure;<o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 56.0pt; mso-add-space: auto; mso-list: l0 level1 lfo1; text-indent: -20.0pt;">
<!--[if !supportLists]--><span style="color: black; font-family: Arial; font-size: 18.0pt; mso-fareast-font-family: Arial; mso-themecolor: text1;"><span style="mso-list: Ignore;">3.<span style="font: 7.0pt "Times New Roman";"> </span></span></span><!--[endif]--><span style="color: black; font-family: Arial; font-size: 18.0pt; mso-bidi-font-family: "Times New Roman"; mso-themecolor: text1;">Encourage increased funding for research; and<o:p></o:p></span></div>
<div class="MsoListParagraphCxSpLast" style="margin-left: 56.0pt; mso-add-space: auto; mso-list: l0 level1 lfo1; text-indent: -20.0pt;">
<!--[if !supportLists]--><span style="color: black; font-family: Arial; font-size: 18.0pt; mso-fareast-font-family: Arial; mso-themecolor: text1;"><span style="mso-list: Ignore;">4.<span style="font: 7.0pt "Times New Roman";"> </span></span></span><!--[endif]--><span style="color: black; font-family: Arial; font-size: 18.0pt; mso-bidi-font-family: "Times New Roman"; mso-themecolor: text1;">Give patients a vehicle to express what
research is important to them.<o:p></o:p></span></div>
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<span style="color: black; font-family: Arial; font-size: 18.0pt; mso-bidi-font-family: "Times New Roman"; mso-themecolor: text1;">I’ve been a member of the
Alpha-1 Research Registry since its inception. Today it has approximately 4500 members,
an impressive number considering the size of the Alpha-1 community. More
impressive, with this ready supply of Alphas, the Alpha-1 Foundation has raised
and invested over $50 million to support research projects at 97 institutions
in North America and abroad. <o:p></o:p></span></div>
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<br /></div>
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<span style="color: black; font-family: Arial; font-size: 18.0pt; mso-bidi-font-family: "Times New Roman"; mso-themecolor: text1;">If the Alpha-1 community
has been able to accomplish this, just think about what the COPD community
would be able to accomplish. Those of us with Alpha-1 COPD represent less than
5% of persons with COPD in the United States. Instead of thousands, there are
millions with COPD in the United States today. In fact, COPD is now our third
largest cause of death. <o:p></o:p></span></div>
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<span style="color: black; font-family: Arial; font-size: 18.0pt; mso-bidi-font-family: "Times New Roman"; mso-themecolor: text1;">So won’t you join me and
sign up for the COPD Patient Powered Research Registry? It’s easy. All you have
to do is call the COPD Information Line at 1-866-316-2673. Then ask your
friends with COPD to sign up as well. <o:p></o:p></span></div>
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<br /></div>
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<span style="color: black; font-family: Arial; font-size: 18.0pt; mso-bidi-font-family: "Times New Roman"; mso-themecolor: text1;">Working together we can
make the COPD Patient Powered Research Registry the largest research registry
in the world. Working together we can make my headline a reality!<o:p></o:p></span></div>
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Sallyhttp://www.blogger.com/profile/08026578219849835139noreply@blogger.com737tag:blogger.com,1999:blog-7482001827452140299.post-5142247723305479362014-10-12T08:15:00.000-07:002014-10-12T08:15:40.716-07:00MAKING LEMONADE<br />
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<span style="color: black; font-family: Arial; font-size: 18.0pt; mso-bidi-font-family: "Times New Roman"; mso-themecolor: text1;">You probably know the old
saying: If life deals you lemons, make lemonade. The concept is simple. It’s
the execution that’s sometimes hard and this was definitely one of those times.<o:p></o:p></span></div>
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<span style="color: black; font-family: Arial; font-size: 18.0pt; mso-bidi-font-family: "Times New Roman"; mso-themecolor: text1;">When I returned home from
rehab after my operation for colon cancer I had yet to regain all of my physical
strength. But this didn’t worry me because, with time and hard work, I knew I’d
regain most, if not all of it back. What worried me, however, was that I’d lost
my emotional equilibrium. <o:p></o:p></span></div>
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<br /></div>
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<span style="color: black; font-family: Arial; font-size: 18.0pt; mso-bidi-font-family: "Times New Roman"; mso-themecolor: text1;">For the past two years,
since going on the lung transplant list, I’d kept my spirits up by picturing my
new life without oxygen 24/7. Some days I’d pictured myself swimming at a beach
or simply walking in the sand along the shore. On others I’d pictured myself canoeing
across a lake or playing tennis with one of my grandchildren. <span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<br /></div>
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<span style="color: black; font-family: Arial; font-size: 18.0pt; mso-bidi-font-family: "Times New Roman"; mso-themecolor: text1;">Looking back, it’s not
surprising then that when I arrived home I was both anxious and depressed. I still
had severe Alpha-1 COPD, but now I couldn’t have a lung transplant for at least
five more years. And, even assuming that my lungs would hold out that long, by
then I’d be too old. <o:p></o:p></span></div>
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<br /></div>
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<span style="color: black; font-family: Arial; font-size: 18.0pt; mso-bidi-font-family: "Times New Roman"; mso-themecolor: text1;">My first month home, except
for sleeping, I spent most of my time on the couch. Those of you who’ve read
some of my earlier posts know that I live at Glenmeadow, a not-for-profit
retirement center. As a result, I was able to get all my meals delivered and help
when I needed it. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
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<span style="color: black; font-family: Arial; font-size: 18.0pt; mso-bidi-font-family: "Times New Roman"; mso-themecolor: text1;">A nurse and a physical
therapist also visited me three times a week. The nurse patiently worked with me
until I felt confident enough to care for my colostomy on my own. The physical
therapist taught me a series of exercises to strengthen my muscles and walked
with me in the hall. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
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<span style="color: black; font-family: Arial; font-size: 18.0pt; mso-bidi-font-family: "Times New Roman"; mso-themecolor: text1;">Despite all of this
improvement, however, that first month was an emotional roller coaster for me.
Some days I’d start to feel better. Then, a day or two later, I’d wake up
anxious and depressed all over again. Finally, at the urging of my family, I
went to see Dr. Cohen, a therapist I’d seen the summer before after my husband
Gordon died.<o:p></o:p></span></div>
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<br /></div>
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<span style="color: black; font-family: Arial; font-size: 18.0pt; mso-bidi-font-family: "Times New Roman"; mso-themecolor: text1;">My first visit I asked Dr.
Cohen for a prescription for an antidepressant. I’d never taken one, but a
number of my friends had sworn by them. Dr. Cohen wasn’t sure that I needed an
antidepressant, but he was willing to prescribe a small dose to see if it
helped. To this day, I can’t be sure that it actually did. <span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<br /></div>
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<span style="color: black; font-family: Arial; font-size: 18.0pt; mso-bidi-font-family: "Times New Roman"; mso-themecolor: text1;">On the other hand, what
definitely helped was Dr. Cohen’s first response after I told him what had happened
to me. He told me that what I was feeling was to be expected after what I’d
been through. But with time I’d get through it; with time I’d feel better. <o:p></o:p></span></div>
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<br /></div>
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<span style="color: black; font-family: Arial; font-size: 18.0pt; mso-bidi-font-family: "Times New Roman"; mso-themecolor: text1;">Three months and a number
of visits later I can now tell you he was right. I can’t tell you exactly how
it happened and I still have some days when I feel down. Gradually, however, I
began to realize that even without a lung transplant, I still had a life left
to live and only I could decide what to do with it.<o:p></o:p></span></div>
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<br /></div>
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<span style="color: black; font-family: Arial; font-size: 18.0pt; mso-bidi-font-family: "Times New Roman"; mso-themecolor: text1;">Here’s what I’ve come up
with. Here’s my lemonade recipe. First, I will spend more time with family and
friends. Second, I will spend more time writing. Third, I will spend more time
on activities like bridge that I do with others. Finally, I will enjoy each day
to the fullest and not worry about tomorrow.<o:p></o:p></span></div>
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<span style="color: black; font-family: Arial; font-size: 18.0pt; mso-bidi-font-family: "Times New Roman"; mso-themecolor: text1;">I have stage 4 COPD and I
trust there are others reading this who have it as well. Still others may have
stage 4 cancer or some other life-threatening disease. What are your recipes
for lemonade? I’d love to hear from you.<o:p></o:p></span></div>
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<br /></div>
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<span style="color: black; font-family: Arial; font-size: 18.0pt; mso-bidi-font-family: "Times New Roman"; mso-themecolor: text1;"><span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<br /></div>
Sallyhttp://www.blogger.com/profile/08026578219849835139noreply@blogger.com28tag:blogger.com,1999:blog-7482001827452140299.post-53646429013571555622014-10-01T14:22:00.000-07:002014-10-01T14:22:19.514-07:00YOU CAN'T PLAN LIFE<br />
<div class="MsoNormal">
<span style="color: black; font-family: Arial; font-size: 19.0pt; mso-themecolor: text1;">Last March I was feeling pretty proud of myself. I’d just
turned 71 and I’d
been listed for a lung transplant at Columbia Presbyterian Hospital in New York.
I'd already been listed at Brigham and Women’s Hospital in Boston. My odds
of getting a lung transplant sooner rather than later had just dramatically increased,
or so I believed. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="color: black; font-family: Arial; font-size: 19.0pt; mso-themecolor: text1;">Then my phone rang one midnight in April. It was the
head of Brigham and Women’s Transplant Team. She told me she might have some lungs for
me. As per her instructions, my two daughters and I immediately drove to Brigham’s
Emergency Room. Six and a half hours later, however, we learned that the lungs
were no good.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="color: black; font-family: Arial; font-size: 19.0pt; mso-themecolor: text1;">Yes, my daughters and I were disappointed. On the other
hand, I quickly convinced myself that this first “dry run” was yet another
positive sign. It was further evidence that my lung transplant was just
around the corner. <span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="color: black; font-family: Arial; font-size: 19.0pt; mso-themecolor: text1;">But the next month I found out I had colon cancer;
a 5-cm malignant tumor that my local doctors said had to come out as soon as
possible! B</span><span style="font-family: Arial; font-size: 25px;">ecause of the condition of my lungs</span><span style="font-family: Arial; font-size: 19pt;">, however, m</span><span style="font-family: Arial; font-size: 25px;">y local surgeon </span><span style="font-family: Arial; font-size: 19pt;">declined to operate and sent me instead to the Brigham.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="color: black; font-family: Arial; font-size: 19.0pt; mso-themecolor: text1;">My first day at the Brigham a number of doctors examined
me. Later, after they’d all met, one of the surgeons came and talked with me. She
told me that she could operate. Because of my lungs, however, she had to be in
and out in less than two hours. That meant I’d be left with a permanent colostomy.
I quickly agreed.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="color: black; font-family: Arial; font-size: 19.0pt; mso-themecolor: text1;">The operation was a success. Four days later, I was walking
around my room on my own. Shortly thereafter, I found someone to push my
oxygen for me and I began walking in the corridor. It would take a week of rehab and six weeks
of home therapy, however, before I felt secure enough to take care of my
colostomy all on my own.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="color: black; font-family: Arial; font-size: 19.0pt; mso-themecolor: text1;">While still in the hospital, I called both transplant
programs and told them what had happened. Both immediately told me that
they would take me off their transplant list. But then they also told
me that I wouldn't be able to get back on until I was cancer free for at least
FIVE years! <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="color: black; font-family: Arial; font-size: 19.0pt; mso-themecolor: text1;">A couple of weeks went by before the full impact of what
they’d said finally hit me. My bucket list, all the things I’d looked forward
to being able to do after transplant, was of no use to me now. I'd planned for a whole new
life after transplant that would never be. Instead, I’d be on oxygen 24/7 for the
rest of my life.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
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Sallyhttp://www.blogger.com/profile/08026578219849835139noreply@blogger.com18tag:blogger.com,1999:blog-7482001827452140299.post-1129790933847284132014-02-05T12:43:00.000-08:002014-02-05T12:43:02.623-08:00 ANXIETY<br />
<br />
<div class="MsoNormal">
<span style="font-size: 14.0pt;">I suspect that I’m not the
only person with COPD who suffers from anxiety. My anxiety pre-dates my COPD,
but my COPD has definitely exacerbated it. Last summer after Gordon died I saw
a psychiatrist and, in addition to talking with me, he prescribed a small
amount of medication to help me sleep. Just last week I also started a class on
Mindfulness Meditation.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: 14.0pt;">Before COPD the most frequent
trigger for my anxiety was a fear of being late. I even had one or two
recurring bad dreams about it. The way I coped was always to plan to be early.
At work, for example, I always planned to finish my projects at least a day
ahead. That way, if the unexpected happened, I still wouldn’t be late. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: 14.0pt;">Fear of not getting somewhere
on time, however, was a more frequent trigger, so I always planned to get to my
appointments early. Getting to the airport on time was so important to me that,
if I could arrange it, I’d plan a meal in the airport before my flight. That
way the worst that would happen if I were late was I’d miss my meal.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: 14.0pt;">My initial Alpha-1 COPD
diagnosis increased my anxiety levels a little I’m sure. Then, when I went on
oxygen to fly, to sleep and to exercise they went up a little again. But the
big bump came only when I went on oxygen 24/7. Until then, if I’d run out of
oxygen for a short while, I could have adjusted; I would have been OK. That’s
no longer true; one of the reasons for the increase in my anxiety.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: 14.0pt;">By way of example, I’ll tell
you what happened to me last Tuesday. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-size: 14.0pt;">I filled up my portable
oxygen unit at 1 PM. From past experience, I was sure that it would last me at
least until supper. I live in an apartment at Glenmeadow, a not-for-profit that
provides apartments and services for seniors. I left my apartment, walked to
our gym, and worked with our trainer for about 45 minutes.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: 14.0pt;">Following, I collected my
mail and then went to the café for a cup of coffee and conversation with
friends. About a half hour later I suddenly sensed that I wasn’t getting any
oxygen. I quickly checked all the tubes to see that they were properly
connected. Thankfully there were staff members close by. I called one over,
explained the situation, and asked her to go to my apartment and retrieve
another small portable oxygen unit that I keep on hand for emergencies. She
agreed.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: 14.0pt;">While she was gone, I sat
quietly in my seat. I knew that, without talking or moving, my oxygen levels
wouldn’t fall very fast. When she returned, I quickly turned on the portable
oxygen unit she’d brought me and, after a minute or so, confirmed that my
oxygen levels were fine. Then I finished my coffee and conversation and had a
friend walk with me and carry my non-functioning portable oxygen unit back to
my apartment. What would I have done if I were in my car all by myself? I guess
I would have called 911.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: 14.0pt;">The other reason for the
increase in my anxiety is how long it takes me to leave my apartment. Before
leaving, I have to switch to a portable oxygen unit from the oxygen
concentrator that I use in my apartment. That involves first filling my
portable unit with oxygen, turning it on and checking that oxygen is flowing through the tubing attached to it and then putting the cannula on the end of that tubing into my nose. Finally I have to carefully roll up the cannula and
50 feet of tubing that connect me to my concentrator and allow me to move
freely around my apartment. Only when that is done can I shut off my
concentrator and go. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: 14.0pt;">In addition, every day when I
go out of my apartment I have to plan where I am going to go and how much
oxygen I will need. If I’m planning to do something active, I will need more
oxygen than if I’m planning to be sedentary. And you will probably not be
surprised that I usually plan on having more oxygen than I will need, even if
it means having to come back to my apartment at some point to refill my
portable.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: 14.0pt;">My point here is not to have
anyone feel sorry for me. It is what it is and I’m doing my best to live with
it. My point is that this is what thousands of people with COPD live with every
day. In addition, many, if not most don’t have the resources I do. Even if they
weren’t plagued with anxiety before their diagnosis, chances are they’re plenty
anxious now.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: 14.0pt;">Unfortunately, from what I’ve
read, there is no quick fix for anxiety. Nor is there a fix that works for
everyone. There’s a plethora of medications are out there. Others claim that
talk therapy, exercise and/or meditation are the answer. I’ve personally found
some relief from all of these approaches. In addition, I’ve recently learned
that I’m actually one of the lucky ones. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: 14.0pt;">I’ve been reading a recent
book, “My Age of Anxiety - Fear, hope, dread, and the search for peace of
mind,” by Scott Stossel. In addition to providing a historical context for his
subject, Mr. Stossel describes his own life-long battle with anxiety. That
description and his description of similar life-long battles fought by past and
present luminaries in sports, the arts, science and politics really opened my
eyes. I am not alone. In addition, my anxiety pales in comparison to what some
of these people deal with on a daily basis.<span style="mso-spacerun: yes;">
</span><o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: 14.0pt;">If you have COPD and you
suffer from anxiety, you are not alone either. There are thousands, perhaps
hundreds of thousand of us out there. Equally important, if you haven’t already
and can afford it, get help. Finally, I recommend Mr. Stossel’s book. Hopefully
it will put your anxiety into perspective and provide you with ideas on how to help
yourself. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
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<br /></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
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Sallyhttp://www.blogger.com/profile/08026578219849835139noreply@blogger.com98tag:blogger.com,1999:blog-7482001827452140299.post-51273840434097920062014-01-25T13:28:00.001-08:002014-01-25T13:28:59.372-08:00 OFF THE DEEP END<br />
<div class="MsoNormal">
<span style="font-size: 14.0pt;">Sorry about the delay. Family
and holidays took priority. Now that things have quieted down, I’ll pick up my
story where I left off.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: 14.0pt;">On our way home from Brigham
and Women’s Transplant Center on July 10, Maura took me to a Tempurpedic store
nearby. I merely wanted to check out a Tempurpedic adjustable bed and mattress so
that I could compare them with competing products sold closer to home. Before I
left, however, I almost bought a Tempurpedic bed and mattress on the spot. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: 14.0pt;">Even though I’d left the
store empty handed, I simply couldn’t get that Tempurpedic adjustable bed and
mattress out of my mind. So a day or two later I found a Sleepy’s store nearby
that sold the identical bed and mattress got Maura to agree to meet me there. My intent, or so I told myself, was merely to
compare that Tempurpedic bed and mattress to other Sleepy’s beds and
mattresses. Before I left, however, I’d spent $4,000 on that Tempurpedic bed
and mattress. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: 14.0pt;">I’m not an impulsive person.
I also know that one should try to avoid major decisions immediately after life
crises. So what came over me? In retrospect, I realize I was in shock. My whole
world had crumbled, or so it seemed at the time. My glass was almost empty and
I simply grabbed hold of the first thing that I thought would fill it up again.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: 14.0pt;">A few days later, Sleepy’s set
up my new Tempurpedic bed and mattress in my bedroom. That first night,
bursting with excitement, I climbed up on my new bed and tried out all the
controls. Then I settled down for a wonderful night’s sleep. Instead, I barely
got any sleep because a distinct odor emanating from the mattress kept waking
me up. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: 14.0pt;">Needless to say early the
next morning I called my sales person to complain. First she told me that such
odors are common in new mattresses. Then she told me her time-tested solution. Put
a plate with a cut-up green apple on top of my mattress and a few Bounce dryer
sheets underneath. Then air out my bedroom for a couple of days and the smell
should be gone. She assured me that even though it sounded crazy, it would
work.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: 14.0pt;">By this time I was a basket
case. My other daughter, Shannon, came over and put three cut-up green apples
on plates on top of my mattress. Then she put over a half box of Bounce dryer
sheets underneath. Finally, she put two fans in my bedroom windows set to blow
out instead of in. For the next week I avoided my bedroom as much as I could. I
slept on the couch.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: 14.0pt;">One week later, Shannon took
away the fans, the dryer sheets and the apples. She then remade my bed. That
night I tried to get excited again about sleeping in my new bed. It didn’t
work. More important, I still didn’t sleep very well; I tossed and turned all
night. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: 14.0pt;">Then and only then did it
finally dawn on me that I’d always slept on a medium firm or firm mattress
whereas my new mattress was medium soft. That was because both sales people had
convinced me that it was the most popular mattress for my Tempurpedic
adjustable bed, ergo I’d concluded it would be the best mattress for me. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: 14.0pt;">Thankfully my mattress could
be exchanged, but only after thirty days. So for the next three weeks I slept
on the couch. Then I exchanged my mattress for a firm one. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: 14.0pt;">In the meantime, I’d also
discovered that I wasn’t as happy with the adjustable base as I thought I would
be. I preferred my old bed. Under the terms of the sale, however, I was stuck
with the adjustable base. So I had Glenmeadow set up my old bed in my bedroom
and the Tempurpedic one as a guest bed in my study. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: 14.0pt;">Six months have now gone by
and I’m still happy in my old bed. But I have yet to have company to enjoy my
new guest bed. In other words, I had an expensive lesson. On the other hand, my
new guest bed will come in handy when I first come home after my transplant and
have to have someone live with me 24 hours a day. And who knows, maybe one day
I’ll even decide I like it.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: 14.0pt;">Looking back, I call last
summer my crazy period. After the shock of Gordon’s death, the news that I
probably wouldn’t be getting a transplant any time soon was more than I could
bear and it sent me off the deep end for a while. But I’m back now. In fact,
I’m in the process of trying to increase my odds for a transplant by getting
double-listed. More about that later.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
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<h2>
<span style="font-size: 14.0pt;"><o:p> </o:p></span></h2>
Sallyhttp://www.blogger.com/profile/08026578219849835139noreply@blogger.com5tag:blogger.com,1999:blog-7482001827452140299.post-20465499909917392092013-11-24T13:22:00.000-08:002013-11-24T13:22:09.666-08:00 A DOUBLE WHAMMY<br />
<div class="MsoNormal">
<span style="font-size: 14.0pt;">Those who know me well know
that my glass is nearly always half-full. My theory of life is that if
something bad happens, take time to grieve and then get on with you life. Even
though you may not always see it at first, there’s usually another road to take
and that road may even be better than the one you were originally on.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: 14.0pt;">So it should not be
surprising that not long after Gordon’s death, I convinced myself that, with
Gordon gone, I would now get a lung transplant. And that lung transplant would
lead to a whole new life, and so on, and so forth. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: 14.0pt;">That positive thinking really
helped me for a while. It gave me the necessary motivation to recover, to get
my strength back and to get back on the transplant list. Three days a week for
about six weeks I worked with a physical therapist and in between I exercised by
myself.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: 14.0pt;">My first big test was on
Friday, July 5, when I went to the pulmonary rehabilitation center at our local
hospital to do a 6-minute walk. In order to get on the list, or in my case to
get back on the list after my hospitalization, you have to be able to walk 500
feet or more in six minutes. On that day I walked 800 feet!<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: 14.0pt;">My first visit to the Brigham
and Women’s Transplant Center after Gordon’s death was on Wednesday, July 10.
Coincidentally, that day I’d been scheduled to meet with Dr. Goldberg, the Transplant
Program Director. After first examining me and asking me a series of questions,
she said we were all set for another few months unless I had any questions.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: 14.0pt;">And then it happened! I
opened my mouth and asked Dr. Goldberg what priority I had on the transplant list.
Her answer was, “No priority.”<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: 14.0pt;">Somehow I’d always known it,
but it had never been spoken of so directly. In comparison to persons with
every other lung disease, research shows that those of us with COPD, Alpha-1
and not, live longer pre-transplant. And that research is the rationale behind
the 2005 UNOS lung transplant guidelines. Everything else being equal, UNOS
guidelines give priority to those with all other lung diseases over someone
with Alpha-1 or COPD.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: 14.0pt;">For those of you who don’t
know, UNOS is the United Network of Organ Sharing and it sets the guidelines
for all lung transplants within the United States. In other words, UNOS sets
the rules as to who get a transplant and who doesn’t and Brigham and Women’s
Lung Transplant Program and Dr. Goldberg merely follow them.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: 14.0pt;">Put simply, because I’d asked
the question directly, Dr. Goldberg gave me the only answer she could. Only two
things could help me get a lung transplant; getting much sicker or sheer luck. Sheer
luck is usually when someone above you on the list gets a single lung
transplant and you get the other single. But according to Dr. Goldberg, as of
right now they weren’t willing to give me a single because in addition to COPD,
I also had Bronchiectasis. <span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: 14.0pt;">Desperate, I now asked, “But
what about survival? Isn’t expected survival supposed to be part of the
equation, not just how soon you will die?” Yes, Dr. Goldberg replied, survival
is part of the equation. But then she said that other research showed that
Alphas post-transplant survival statistics were not any better than those of
any other lung disease. Boldly, I told her that I’d recently read about a study
that said it was and she asked me to share it with her if I could find it.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: 14.0pt;">Thankfully, my daughter,
Maura, and my stepdaughter, Rebecca, were with me that day. As soon as my
appointment was over, we left to get a bit of lunch even though I wasn’t sure I
could eat. I was so anxious I was literally shaking. An earthquake had
shattered my glass half-full. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
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<div class="MsoNormal">
<span style="font-size: 14.0pt;">It was now a month since
Gordon’s death and I had no game plan. But those who know me well know that I
can’t live long without a game plan. So while we were having lunch, I made a
new game plan. I’d buy a Tempur-Pedic adjustable bed. I’d sleep better; ergo I’d
feel better. <o:p></o:p></span></div>
Sallyhttp://www.blogger.com/profile/08026578219849835139noreply@blogger.com2tag:blogger.com,1999:blog-7482001827452140299.post-12300090247453271432013-11-15T05:49:00.000-08:002013-11-15T05:49:31.885-08:00 GORDON'S DEATH<div class="MsoNormal">
<span style="font-size: 14.0pt;">It’s been almost five months
now since Gordon’s died and, in some ways, my life still seems surreal. When I
last saw Gordon, we had aides with us around the clock. When I last saw Gordon,
his son Barry was also staying with us. When I last saw Gordon, our apartment
was a repository for his medical equipment and drugs. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: 14.0pt;">I last saw Gordon on Friday
morning, Jun 5, 2013. Early Saturday morning, June 6, Barry notified me by text
that he had died. I knew it was coming. Gordon had been completely unresponsive
the last twenty-four hours before I’d left him. But somehow because I wasn’t
there, even though I knew he had died, it didn’t seem real.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: 14.0pt;">To further compound the
matter, when I got home ten days later, not only didn’t I see Gordon, but also
our apartment was stripped bare of all of his medical equipment and drugs. It
was as if our life together over the last twelve years had suddenly vanished
into thin air. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: 14.0pt;">I certainly didn’t choose for
our life together to end this way. I just didn’t have a choice. For the last
three or four weeks I’d known he was dying and I had every intention of being
there when he did. But as I have learned painfully over this past summer, there
are some things in life over which we have no control. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: 14.0pt;">About two or three weeks before
Gordon died, I’d come down with a respiratory infection. I’d immediately gone
on antibiotics and thought I was getting better. But then I began to get worse;
a recipe for disaster for anyone with severe Alpha-1 COPD. So early on the morning
of June 7, I called 911. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: 14.0pt;">Gordon and I had already said
our good-byes a few days earlier. I’d also written out detailed instructions
for Barry and our other children. So, after checking my vital signs and hooking
me up to their oxygen, the EMT’s put me on a stretcher. Then they wheeled me
past Gordon’s room and I blew him one last teary kiss. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: 14.0pt;">I knew I had to do it. I also
hate to think what could have happened to me if I hadn’t. But it was hard.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: 14.0pt;">As I had suspected, I had a
severe case of pneumonia and I was hospitalized for eleven days. It’s the
longest I’ve ever been hospitalized and yet another sign of the deterioration that
Alpha-1 COPD has wrought on my body. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: 14.0pt;">Was it because I was so sick
myself? Or was it simply because I wasn’t there? I knew that Gordon had died. I
had even spoken with other family members and the Rabbi about his memorial
service. But somehow it wasn’t touching me. It was as if I was in a protective
cocoon. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: 14.0pt;">My cocoon also traveled with
me when I first went home. Yes, Gordon wasn’t there. But neither were his
hospital bed, his motorized wheelchair, his hoyer lift and the rest of his medical
equipment. It was as if I was returning to an apartment where Gordon had never
lived.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: 14.0pt;">Of course there were pictures,
memorabilia and Gordon’s clothes. In addition, his memorial service was almost
upon us and I had decided to write my own personal tribute. But even as I was
writing, it was as if I was playing a role in a play about someone other than
Gordon and me. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: 14.0pt;">My first week home I was
still sick and extremely weak. But we’d already set Sunday as the date for the
memorial service and out-of-town family and friends were arriving on Saturday. So
on Saturday I “entertained” from the couch. And I went to the Temple on Sunday
in a wheelchair.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: 14.0pt;">That Sunday was a long day.
It began with Gordon’s memorial service at 11. All present were then invited to
pay their condolences to the family at a luncheon reception immediately following
at Glenmeadow. When it was time for the evening Shiva, only a few close friends
and family remained. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: 14.0pt;">That Sunday, June 23, 2013,
was unquestionably the hardest day of my life. Gordon’s memorial service was
beautiful and family did their best to surround and shelter me. But that Sunday
there could be no more pretending. That Sunday we were all gathered to honor
Gordon and to say goodbye to him for the last time. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: 14.0pt;">From Gordon’s death until that
Sunday I’d been living in an unreal world; a world in which Gordon wasn’t
physically present but I hadn’t acknowledged that he was gone. That Sunday reality
clobbered me. But it was painful and so, not surprisingly, I quickly slipped back
into my unreal world. <o:p></o:p></span></div>
<div class="MsoNormal">
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Sallyhttp://www.blogger.com/profile/08026578219849835139noreply@blogger.com2tag:blogger.com,1999:blog-7482001827452140299.post-57990823382957079782013-11-02T11:19:00.000-07:002013-11-02T11:19:12.520-07:00 A DETERMINED MAN - PART II<div class="separator" style="clear: both; text-align: center;">
<a href="http://1.bp.blogspot.com/-lKHALYHK770/UnVBC6YsVSI/AAAAAAAAAFI/Dfut3cmF_AI/s1600/1004.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="254" src="http://1.bp.blogspot.com/-lKHALYHK770/UnVBC6YsVSI/AAAAAAAAAFI/Dfut3cmF_AI/s320/1004.jpg" width="320" /></a></div>
<br />
<br />
<div class="MsoNormal">
<span style="font-size: 14.0pt;">Gordon was transferred to
Spaulding Rehabilitation Hospital in Boston only three days after his stroke.
Every morning, for the next six weeks, he spent with a myriad of physical, occupational
and speech therapists. I spent my mornings trying to figure out how we would
cope when Gordon came home. Afternoons we spent together.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: 14.0pt;">Before spending the afternoon
with Gordon, however, I usually had lunch in Spaulding’s cafeteria. Likewise, on
my way home, I usually stopped at Whole Foods to pick up my supper. I had
neither desire, nor energy to cook for myself. Everything within me was focused
on Gordon. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: 14.0pt;">From his first day at
Spaulding, Gordon was really focused on regaining his speech. Every afternoon
he practiced by reading lists of words aloud to himself over and over and over again.
But all that practice paid off. I’ll never forget the day he abandoned the word
lists and read the New York Times aloud to me instead.<span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: 14.0pt;">Gordon applied that same determination
to the task of regaining the use of his right leg. Every afternoon he also did leg
strengthening exercises by himself over and over and over again. As a result, within
six weeks, he was walking, albeit with the aid of a four-point cane and a
brace. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: 14.0pt;">Unfortunately, his
determination notwithstanding, Gordon never regained any functional use of his
right arm or his right hand. Amazingly, however, he never complained. Instead, he
just used that same determination to teach himself how to type and sign his
name with his left hand only.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: 14.0pt;">For most of his adult life,
Gordon’s determination to solve the riddles of COPD and Alpha-1 had left little
time for family, friends, and other activities. Now, he had all the time in the
world and, as soon as he was able, he told me, he was going to put it to good
use. He was reinventing himself. <o:p></o:p></span></div>
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<br /></div>
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<span style="font-size: 14.0pt;">Both Gordon and I loved to
travel and one year after his stroke we took our first big trip; a scenic cruise
to Alaska. The following winter, we flew to Coronado Island, California, where
we spent two glorious months in a condominium directly overlooking the Pacific
Ocean. Essentially, from the summer of 2004 to the summer of 2006, we took
advantage of almost every opportunity that we had to travel.<o:p></o:p></span></div>
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<br /></div>
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<span style="font-size: 14.0pt;">Early in the summer of 2006,
however, our lives were upended again when Gordon was diagnosed with aggressive
B-Cell lymphoma. He immediately had Chemotherapy that killed the lymphoma. But,
as a result, he also spent two long weeks in ICU, followed by almost two years
of rehabilitation and physical therapy. And this time, despite his best
efforts, Gordon would never walk again. <o:p></o:p></span></div>
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<br /></div>
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<span style="font-size: 14.0pt;">Thankfully, in June 2006, we
had just moved to Glenmeadow, a retirement community in western MA. Not only is
Glenmeadow handicapped accessible, but also its handicapped vans will take you
anywhere you want to go. So Gordon got himself a motorized wheelchair and like
my good friend Rita, he just “picked himself up, dusted himself off, and kept
going.” <o:p></o:p></span></div>
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<br /></div>
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<span style="font-size: 14.0pt;">Together Gordon and I went to
symphony; we went to art museums; we went out to dinner with friends. We read
books, watched movies, and, of course, faithfully read the New York Times. We
entertained our children and our grandchildren. We also hosted special events
for our extended families. And every year our entire blended family celebrated
Passover together, a tradition we have pledged to continue in honor of Gordon.<o:p></o:p></span></div>
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<br /></div>
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<span style="font-size: 14.0pt;">When Gordon died on June 8,
2013, his son Barry noted that it had been almost ten years to the day since he
had his stroke. Never once, during those ten years, did I ever hear him
complain about his limitations. Instead, every day he reminded me that life,
especially the life that we had together, was far better than the alternative. <o:p></o:p></span></div>
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<span style="font-size: 14.0pt;">Yes, the Gordon I knew was a
determined man. He was determined to live life to the fullest, no matter the
obstacles, for as long as he absolutely could. Gordon was both my husband and
my mentor and I miss him terribly.<o:p></o:p></span></div>
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<br /></div>
Sallyhttp://www.blogger.com/profile/08026578219849835139noreply@blogger.com2tag:blogger.com,1999:blog-7482001827452140299.post-32041484518404052602013-10-15T13:28:00.000-07:002013-10-15T13:28:02.953-07:00 A DETERMINED MAN<div class="separator" style="clear: both; text-align: center;">
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<span style="font-size: 14.0pt;"> <o:p></o:p></span></div>
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<span style="font-size: 14.0pt;">If I were limited to one word
to describe my late husband Gordon, I would call him “determined.” Certainly
his career as a pulmonary researcher and physician was marked by his
determination to solve the riddles of COPD and Alpha-1 antitrypsin deficiency.
Following his death, on June 8, 2013, the Alpha-1 Foundation described his
professional contributions, in part, as follows. <o:p></o:p></span></div>
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<br /></div>
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<span style="font-size: 14.0pt; mso-bidi-font-family: Times; mso-fareast-language: JA;">“We lost a pioneer and dear friend with the passing of Gordon Snider,” said
John Walsh, Alpha-1 Foundation president and CEO. “We all appreciate that he
leaves an incredible legacy and we owe a debt of gratitude for his leadership,
vision, tenacity, patience and friendship . . . Dr. Snider’s leadership helped
the Foundation establish a robust research agenda.”<o:p></o:p></span></div>
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<span style="font-size: 14.0pt; mso-bidi-font-family: Times; mso-fareast-language: JA;">Bartolome Celli, MD, a professor of medicine at Harvard University and the
Pulmonary and Critical Care Division of Brigham and Women’s Hospital . . .
quot[ed] the Cuban poet Jose Marti: “The most important signature of a
human is his written word and the memory of long lasting friends.” The
poet’s words are “applicable to this remarkable man who touched us all. Yes, we
lost a friend but his ‘signature’ will last forever,” Celli said.<o:p></o:p></span></div>
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<span style="font-size: 14.0pt; mso-bidi-font-family: Times; mso-fareast-language: JA;">In a career that spanned more than 40 years, Snider showed how emphysema is
created and changed the direction of lung disease research for decades. He
founded the pulmonary section of the Boston University School of Medicine and
was chief of medical service at the Boston VA Medical Center for 14 years.<o:p></o:p></span></div>
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<span style="font-size: 14.0pt; mso-bidi-font-family: Times; mso-fareast-language: JA;">He served as president of the American Thoracic Society. He trained dozens
of young researchers. He served on the Pulmonary Disease Advisory Board of the
National Heart, Lung and Blood Institute of the National Institutes of Health
and innumerable scientific committees. And he conducted his own
groundbreaking research on lung diseases.<o:p></o:p></span></div>
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<span style="font-size: 14.0pt; mso-bidi-font-family: Times; mso-fareast-language: JA;">In 2009, the Alpha-1 Foundation presented Snider
with a lifetime achievement award at an event attended by more than a hundred
of his colleagues and researchers he trained – many of them now leading researchers
and clinicians themselves . . . Celli served as master of ceremonies and said,
“Dr. Snider is one of those rare giants, a triple threat — a great researcher,
a superb caregiver and teacher.”<o:p></o:p></span></div>
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<br /></div>
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<span style="font-size: 14.0pt; mso-bidi-font-family: Times; mso-fareast-language: JA;">Gordon officially “retired” in 2000, but that didn’t
stop him from going to the office almost every day. He loved interacting with the
medical students and residents. It was a mutual attraction I’m told. He also
used that time to co-author a number of research papers and, to the best of my
recollection, to write at least one long article on the history of lung research.
In addition, in his “free” time, Gordon continued as a member of the scientific
leadership of both the Alpha-1 Foundation and the American Lung Association. <o:p></o:p></span></div>
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<br /></div>
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<span style="font-size: 14.0pt; mso-bidi-font-family: Times; mso-fareast-language: JA;">But Gordon’s determination wasn’t limited to his
professional life. When I first met him, he was equally determined to beat what
he told me was a genetic predisposition to heart disease on both sides of his
family. To that end, he adhered to a strict diet and an equally strict regimen
of daily exercise. Then one morning, barely two months after his 81<sup>st</sup>
birthday, Gordon’s genes finally caught up with him. <o:p></o:p></span></div>
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<br /></div>
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<span style="font-size: 14.0pt; mso-bidi-font-family: Times; mso-fareast-language: JA;">That morning I awoke to the sound of Gordon stumbling
on his way up the stairs with my morning coffee and paper. Typical physician, he
had a ready explanation. I wasn’t to worry he said. An hour or so later, however,
he tried to jot down a phone number and his fingers wouldn’t cooperate. This
time I called the doctor. She said we should go to the emergency room. Thankfully Gordon agreed.<o:p></o:p></span></div>
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<br /></div>
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<span style="font-size: 14.0pt; mso-bidi-font-family: Times; mso-fareast-language: JA;">Unfortunately, Gordon was having a stroke that, over the
next twenty-four hours, immobilized his right side and significantly impaired his
speech. Surprisingly, however, he wasn’t upset like I was. Instead, his spirits were up. After all, he said, he was lucky to have lived so long without any other major medical
problems. <o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="text-align: left;">
<span style="font-size: 14.0pt; mso-bidi-font-family: Times; mso-fareast-language: JA;">From that point forward, Gordon never looked back. </span><span style="font-size: 19px;">Our mutual mantra became, “Life’s still worth living because it beats the alternative hands down.” </span><span style="font-size: 14pt;">Rather
than mourning his life pre-stroke, Gordon developed a two-step plan. First he would
work hard to recover as much as he could and then he would reinvent
himself. </span><span style="font-size: 14pt;">To find out how he did it, you’ll have to wait for my
next post, “A DETERMINED MAN – PART II.”</span></div>
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<br /></div>
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<br /></div>
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<br /></div>
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<br /></div>
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<br /></div>
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<br /></div>
<!--EndFragment-->Sallyhttp://www.blogger.com/profile/08026578219849835139noreply@blogger.com2tag:blogger.com,1999:blog-7482001827452140299.post-36152901853397158812013-10-07T08:36:00.000-07:002013-10-07T08:36:14.274-07:00 HOW STRONG ARE YOU?<br />
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<span style="font-size: 14.0pt;">People often ask me what it’s
like to be diagnosed with Alpha-1 COPD. Am I angry? How do I cope? The
following is a five-minute talk that I was invited to give on the subject last
year. The place was Sinai Temple. The occasion was Yom Kippur. Gordon Snider,
my husband who died on June 8<sup>th</sup> of this year, was still with me.<o:p></o:p></span></div>
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<br /></div>
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<span style="font-size: 14.0pt;">It was January 1993. I was about
to turn fifty and the proud single parent of two beautiful daughters. I was
also a successful New York State prosecutor. I ate healthy. I exercised
regularly. Life was good. That is, until I got pneumonia.<o:p></o:p></span></div>
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<span style="font-size: 14.0pt;"> <o:p></o:p></span></div>
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<span style="font-size: 14.0pt;">After five days in the
hospital and two weeks at home, I had my first check-up with my new
pulmonologist, Dr. M. All I expected was permission to go back to work. Instead
after a battery of tests and a lengthy physical examination, I was told I had chronic
obstructive pulmonary disease or COPD. <o:p></o:p></span></div>
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<br /></div>
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<span style="font-size: 14.0pt;">According to Dr. M, all COPD
was progressive and incurable. </span><span style="font-size: 14pt;">But then he told me that, in
view of my otherwise good health, he’d tested me for a rare hereditary form of
COPD called Alpha-1 antitrypsin deficiency or Alpha-1. “Odds are you don’t have
it,” he cautioned. “But if you do, there’s an Alpha-1 therapy currently in
clinical trials and, with a little luck, you could have ten more years.”</span></div>
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<br /></div>
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<span style="font-size: 14.0pt;">I have no memory of how I got
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followed. Some days I could have sworn they were pulling me under in their
wake. On the other hand, I wasn’t a stranger to grief and so I didn’t try to
fight it; I simply endured it. <o:p></o:p></span></div>
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<br /></div>
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<span style="font-size: 14.0pt;">Until one day it finally dawned
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could have ten more years! So I reached down deep inside and I told myself that
I could get through this. In fact, I could get through it all on my own. <o:p></o:p></span></div>
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<br /></div>
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<span style="font-size: 14.0pt;">Shortly thereafter, Dr. M
told me I had Alpha-1! At that moment in time, it was the best gift anyone
could have given me! First I enrolled in the Alpha-1 trial. Then I began to
take back my life. I also joined the board of the Alpha-1 Foundation and the
search for a cure for Alpha-1. One of my fellow board members was a
world-renowned pulmonologist. His name was Dr. Gordon L. Snider. One thing led
to another and Gordon, now my husband and the love of my life, is with me here
today.<o:p></o:p></span></div>
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<br /></div>
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<span style="font-size: 14.0pt;">Yes, life is still good. That
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is a lung transplant. But if these past nineteen years and my husband have
taught me nothing else, they’ve taught me that a lung transplant is not only difficult,
but also risky. Put another way, a lung transplant is trading one set of
problems for another, with no guarantees. <o:p></o:p></span></div>
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<span style="font-size: 14.0pt;">Over the last nineteen years,
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until our lives or the lives of those we love are at risk. So last April, when my
current pulmonologist looked me in the eye and told me that without a lung transplant
I might not be around much longer, without missing a beat I told him I wanted
to be evaluated. Likewise, even before my transplant evaluation was complete, I
decided that if I was lucky enough to be accepted as a candidate, I would say
yes. <o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal">
<span style="font-size: 14.0pt;">In the end, it all came down
to certain death within the next few years or taking a chance on life for five,
ten and maybe even fifteen more. I chose life and today I’m awaiting a
double-lung transplant at Brigham & Women’s Hospital in Boston. My job now is
to stay healthy and strong so that, if I am so lucky, I can make the best of my
“Gift of Life.” <o:p></o:p></span></div>
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<br /></div>
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<br /></div>
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<br /></div>
<!--EndFragment-->Sallyhttp://www.blogger.com/profile/08026578219849835139noreply@blogger.com3tag:blogger.com,1999:blog-7482001827452140299.post-17602877129555998712013-09-29T07:46:00.000-07:002013-09-29T07:46:31.964-07:00ANGELS<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="http://2.bp.blogspot.com/-K09vjxx3kjs/Ukg7UUF7Y9I/AAAAAAAAADo/CbBWZhXXW7Q/s1600/IMG_1305.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="300" src="http://2.bp.blogspot.com/-K09vjxx3kjs/Ukg7UUF7Y9I/AAAAAAAAADo/CbBWZhXXW7Q/s400/IMG_1305.jpg" width="400" /></a></div>
<br />
<br />
<br />
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<span style="font-size: 14.0pt;">Those of you who have read my
book, “An Alpha-1 COPD Love Story,” already know that I believe in Angels. My
Angels are or were real live people who inspire me. Gordon is definitely one of
my Angels, as is my dear friend Rita. The following is my tribute to her.<o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal">
<span style="font-size: 14.0pt;">I first got to know Rita in
1985. Four years later, Rita was diagnosed
and treated for breast cancer. Typical
Rita, she didn’t let it get her down.
The way she talked to friends and family about her treatment, you would
have thought that we were the patients.
It was all about reassuring us. But, that was my friend Rita. She was always taking care of someone
else. <o:p></o:p></span></div>
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<br /></div>
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<span style="font-size: 14.0pt;">Fast forward to 1997. I can’t
remember when or how I first found out.
I do remember that Rita hadn’t been feeling well for a while. When she finally made time to go to the doctor,
he ran some tests. Then came the bad
news. After almost twenty years, Rita’s
breast cancer had spread. She now had stage four liver cancer.<o:p></o:p></span></div>
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<br /></div>
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<span style="font-size: 14.0pt;">Everyone else I know would
have been devastated by this diagnosis.
I know I was. Not my friend
Rita. As always, and in her words, she
just “picked herself up, dusted herself off and moved on.” She quickly found herself an oncologist who
promised to use his arsenal to keep her alive for as long as possible. Then, she set out to put her affairs in
order, to reassure her children, her grandchildren and her friends and to
prepare them for what was to come.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: 14.0pt;">I don’t know any other way to
say it. My friend Rita was amazing! She knew she was living on borrowed time and
she was determined to make the best of every minute of it. I will never forget her infectious
laugh. Whenever we were together it was
impossible not to catch it. At the same
time, however, Rita was continually preparing the rest of us for life after she
was gone. In her words, God hadn’t taken her yet because he still had people
for her to take care of. <o:p></o:p></span></div>
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<br /></div>
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<span style="font-size: 14.0pt;">Rita talked openly about her
death, but never in a morbid way.
Instead, she used her keen sense humor to ease what could otherwise be painful
discussions. For example, Rita told me
that when she died, she didn’t want anyone saying she was at peace. That’s because, she continued and then she
started to laugh, “when God finally takes her, she’ll be kicking and screaming.” </span></div>
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<span style="font-size: 14pt;"><br /></span></div>
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<span style="font-size: 14pt;">More than any other person I know, Rita loved
life and lived it to the fullest. More than any other person I know, Rita
cherished her family and her friends and, in turn, we all cherished her. More
than any other person I know, Rita found happiness in life by taking care of
others.</span></div>
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<br /></div>
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<span style="font-size: 14.0pt;">Yes, my friend Rita died
yesterday. But I believe she’s still watching over her family and friends. All
we have to do is to listen carefully enough and we’ll hear her. Sometimes life
is tough, she’s telling us. But then you
just, “pick yourself up, dust yourself off and keep going.” <o:p></o:p></span></div>
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<br /></div>
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<br /></div>
<!--EndFragment-->Sallyhttp://www.blogger.com/profile/08026578219849835139noreply@blogger.com2tag:blogger.com,1999:blog-7482001827452140299.post-19195549845191983822013-09-24T13:49:00.000-07:002013-09-24T13:49:21.139-07:00A TRIBUTE TO MY HUSBAND<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="http://1.bp.blogspot.com/-g8u5GQGCyyU/TaRHL5RhiDI/AAAAAAAAAAU/-w7V32BZIdA/s1600/gs_009_2.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="http://1.bp.blogspot.com/-g8u5GQGCyyU/TaRHL5RhiDI/AAAAAAAAAAU/-w7V32BZIdA/s320/gs_009_2.jpg" width="320" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<span style="font-size: 16pt;"><br /></span></div>
<div class="separator" style="clear: both; text-align: center;">
<span style="font-size: 16pt;"><br /></span></div>
<div class="separator" style="clear: both; text-align: center;">
<span style="font-size: 16pt;">GORDON</span></div>
<div class="separator" style="clear: both; text-align: center;">
</div>
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<br /></div>
<div class="MsoNormal">
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<h2 style="text-align: left;">
<span style="font-size: large; font-weight: normal;">I first met Gordon in January
1997 when we both joined the Alpha-1 Foundation Board. Four years later Gordon
called me and told me he loved me. At the time, I had a good job and two
wonderful children. I thought my life was fulfilled. But Gordon showed me what
I was missing and turned my little world upside down.</span></h2>
<div class="MsoNormal" style="text-align: left;">
<br /></div>
<div class="MsoNormal" style="text-align: left;">
<span style="font-size: large;">Our children initially had
reservations, especially about our 21-year age difference. But over time
they’ve come to bond not only with us, but also with each other. And every year
at Passover our children, their spouses and their children join with us to
celebrate Passover, a tradition we plan to continue in honor of Gordon.<o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: left;">
<br /></div>
<div class="MsoNormal" style="text-align: left;">
<span style="font-size: large;">Gordon was my best friend; my
soul mate and I will miss him terribly. On the other hand, as I told him shortly
before he died, I will be OK. One reason is because Gordon, who looked out for
me in so many ways, insisted we move to Glenmeadow, near where my children and
my young grandchildren lived. So not only will I have the support of family and
old friends, but also my new friends at Glenmeadow. Finally, as always, I will
have the support of our Alpha-1 Community.<o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: left;">
<br /></div>
<div class="MsoNormal" style="text-align: left;">
<span style="font-size: large;">Others here today will
rightly celebrate Gordon’s many accomplishments, his research, his mentoring
and especially the influence he had on the Alpha-1 Foundation. But I want to
celebrate his warm smile, his infectious laugh and his incredible love of life.
One of the last things he told me was what a hard time he was having letting go.
I want to celebrate Gordon the husband, the father, the grandfather and the
friend. I loved him more than words can ever say. He changed my life forever.<o:p></o:p></span></div>
<!--EndFragment--><br />
<div style="text-align: left;">
<br /></div>
<!--EndFragment-->Sallyhttp://www.blogger.com/profile/08026578219849835139noreply@blogger.com2tag:blogger.com,1999:blog-7482001827452140299.post-19263694574101638562012-04-09T06:09:00.000-07:002012-04-09T06:09:27.525-07:00A Whole New Life!Exactly one week ago today, my doctor told me that it was time to consider transplant. Without missing a beat, I said yes. The next step is a family meeting on May 2 with the transplant team. Then, hopefully, they will agree to test me further to see if I'm ready and able to be a candidate. I am in their hands. My job is to keep myself as healthy and strong as I can.<br />
<br />
This weekend, my husband, family and I celebrated Passover and Easter. Their message - new life and hope - couldn't have been more fitting. That's exactly what I feel. Even though I have been living with this disease for 19+ years, I never really thought I'd have the possibility of a transplant. I always joked that I'd just be too old. Instead, I planned for what I would do as my lung function decreased and my world got smaller.<br />
<br />
Yes, that's the best image I can think of to describe how COPD affects your life. At first, I hardly noticed it at all. Even when I had to go on oxygen to exercise, to sleep and to fly, I still could do pretty much anything I wanted to. Then, four years ago, I had to go on oxygen full-time and my world suddenly got smaller. I never could leave my house without first figuring out how much oxygen I would need until I returned. Overnight trips required a whole lot more planning as I had to make sure there would be oxygen there when I arrived.<br />
<br />
Then, suddenly, one week ago today, I was given the first glimmer of hope. They still can't cure my COPD, but just maybe I'll be able to get the next best thing, a lung transplant and a whole new life! For the first time, I have hope that I'll be able to see my beautiful grandchildren grow up! I can't think of any better present.<br />
<br />
Those of you who have paid attention to this blog, know that I recently published a book, An Alpha-1 COPD Love Story. It's the story of my life with Dr. Gordon L. Snider whom I met after being diagnosed with Alpha-1 COPD. You also know that I haven't paid much attention to this blog since I first started it a few months ago. <br />
<br />
Well, I've made a new resolution. From now on, every Monday I will write another post. Some will be about COPD and the need to find a cure. In addition, however, I feel compelled to chronicle my Alpha-1 COPD journey from this point forward. As with my book, I hope that this blog may help someone else, some time, some where. <br />
<br />
My diagnosis of Alpha-1 COPD is already one of the best things that ever happened to me. Without it, I never would have met my Alpha-1 COPD community and, above all, my wonderful husband. Now I have been given the gift of hope and new life. In the spirit of Passover and Easter, I want to share it with the world!Sallyhttp://www.blogger.com/profile/08026578219849835139noreply@blogger.com3tag:blogger.com,1999:blog-7482001827452140299.post-22041566203613800372012-01-25T06:30:00.000-08:002012-01-25T06:30:56.354-08:00An Alpha-1 COPD Love Story<div><div style="background-color: white; color: black; font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 12px; line-height: 1.85em; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; text-align: left;"><img alt="masslive.com" src="http://media.masslive.com/design/baseline/img/logo_mass_print.gif" style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;" /><div id="PrintContainer" style="margin-bottom: 5px; margin-left: 5px; margin-right: 5px; margin-top: 5px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;"><h1 class="entry-title" style="font-size: 18px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 5px; padding-left: 0px; padding-right: 0px; padding-top: 5px;">Sally Everett recounts struggle with Alpha-1 COPD in new book</h1><h5 class="updated" style="font-size: 11px; font-weight: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;" title="2012-01-25T11:07:35Z">Published: Wednesday, January 25, 2012, 6:07 AM</h5><div class="author_info" style="font-size: 14px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 5px;"><img alt="Christine White" height="40" src="http://media.masslive.com/avatars/1828477.png" style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;" width="40" /> <span class="author_byline" style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: 70%;">By <span class="author vcard" style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: 70%;"><strong style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;">Christine White </strong></span></span></div><div class="clear" style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;"></div><div class="entry-content" style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;"><div class="entry_widget_large entry_widget_right" id="asset-10481550" style="float: right; margin-bottom: 0px; margin-left: 20px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; width: 380px !important;"><span class="adv-photo-large" style="background-attachment: initial; background-clip: initial; background-color: #f1f1f1; background-image: initial; background-origin: initial; background-position: initial initial; background-repeat: initial initial; display: block; height: 374px; margin-bottom: 15px; margin-left: 0px; margin-right: 0px; margin-top: 5px; max-width: 380px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;"><img alt="011712-sally-everett.JPG" class="adv-photo" height="314" src="http://media.masslive.com/living_impact/photo/10481550-large.jpg" style="border-bottom-style: none; border-color: initial; border-left-style: none; border-right-style: none; border-top-style: none; border-width: initial; display: block; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; max-width: 380px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;" width="380" /><span class="photo-data" style="border-bottom-color: rgb(213, 213, 213); border-bottom-style: solid; border-bottom-width: 1px; border-left-color: rgb(213, 213, 213); border-left-style: solid; border-left-width: 1px; border-right-color: rgb(213, 213, 213); border-right-style: solid; border-right-width: 1px; border-top-color: initial; border-top-style: none; border-top-width: initial; display: block; font-size: 10px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 10px; padding-left: 5px; padding-right: 5px; padding-top: 5px;"><span class="byline" style="display: block; float: right; line-height: 1.35em; margin-bottom: 0.75em; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; text-align: right; width: 220px;">Photo by Cory White</span><span class="caption" style="clear: both; display: block; line-height: 1.25em; margin-bottom: 0px; margin-left: 3px; margin-right: 3px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; text-align: left;">Sally Everett at her home in Longmeadow. Everett has written a book about her battle with chronic, genetic lung disease.</span></span><span class="photo-bottom-left" style="background-attachment: initial; background-clip: initial; background-color: #f1f1f1; background-image: url(http://media.masslive.com/design/baseline/img/corners.png); background-origin: initial; background-position: -28px -7px; background-repeat: no-repeat no-repeat; display: block; float: left; height: 7px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: -7px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; width: 7px;"></span><span class="photo-bottom-right" style="background-attachment: initial; background-clip: initial; background-color: #f1f1f1; background-image: url(http://media.masslive.com/design/baseline/img/corners.png); background-origin: initial; background-position: -35px -7px; background-repeat: no-repeat no-repeat; display: block; float: right; height: 7px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: -7px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; width: 7px;"></span></span></div><div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 10px; padding-left: 0px; padding-right: 0px; padding-top: 10px;">LONGMEADOW - In 1993, Sally Everett was 50, a single mother, living in Nyack, N.Y., and working as regional director of the Medicaid fraud unit in the attorney general’s office, when a bout of pneumonia led to a devastating diagnosis. <br style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;" /><br style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;" />Doctors told her she had Alpha-1 COPD, a genetic pulmonary disease. They gave her 10 years, at best, to live. <br style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;" /><br style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;" />Nineteen years later, and now living at Glenmeadow with her husband, Dr. Gordon L. Snider, Everett has written a memoir - “An Alpha-1 COPD Love Story,” published by Small Batch Books. It is about her journey from health to illness, the love she encountered along the way, and her fight to raise money and awareness to battle this deadly disease. <br style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;" /><br style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;" />“COPD (Chronic obstructive pulmonary disease) is the third greatest cause of death in the U.S., after heart disease and cancer,” Everett said recently, “and yet the Centers for Disease Control doesn’t have a budget for it. Every four minutes someone dies of COPD.” <br style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;" /><br style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;" />Everett is working to change that, but she didn’t start out embracing her illness or championing its cause. <br style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;" /><br style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;" />“After my diagnosis, I gave myself one week to feel sorry for myself, and then I just got on with life,” she said - with one exception. “I threw caution to the wind. I gave myself permission to be extravagant for one whole year.” <br style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;" /><br style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;" />But when the year ended, it was time to confront her condition. She joined a church and its support group for those with challenging illnesses. <br style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;" /><br style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;" />“It enabled me to open up,” she said. <br style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;" /><br style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;" />She was also ready to meet and embrace others with Alpha-1 COPD and in 1994 joined their association. <br style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;" /><br style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;" />“I found strong people there, with a good attitude,” she explained. “Many of them are still good friends.” <br style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;" /><br style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;" />Then in the late 1990s, she was elected to the board of the <strong style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;">Alpha-1 Foundation</strong>. Unlike the <strong style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;">Alpha-1 Association</strong>, which serves as a support group and information distributor, the foundation is designed to raise money for research. <br style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;" /><br style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;" />Also elected to the board that year, as science adviser, was Dr. Snider, a renowned pulmonologist. They became good friends. Everett didn’t realize how good. <br style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;" /><br style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;" />In 2001, he called her from his home in Boston and told her that he loved her and wanted to start a relationship. <br style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;" /><br style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;" />“You could have picked me up off the floor,” Everett said. The only response she could think to give him was, ‘Can I get back to you in a couple of weeks?’” <br style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;" /><br style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;" />A year later, she moved to Boston to be with him and in 2006, they married. That same year, they moved to Longmeadow. Oddly enough, their roles have in some ways reversed. She was the one with a critical diagnosis when they met. Since then, Snider has suffered a stroke and has battled lymphoma. But they have a philosophy they live by: “Life’s still worth living if it beats the alternative.” <br style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;" /><br style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;" />Alpha-1 is a deficiency in a protein, manufactured primarily in the liver, that protects the lungs. It can affect both the liver and lungs, leading to COPD in adults and liver disease in newborns, children and adults. <br style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;" /><br style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;" />COPD is often called “Smokers Disease,” but new research points to a genetic predisposition in those diagnosed with it. That’s why only about 20 percent of smokers get it. According to Everett, awareness of this condition needs to be raised, since even many primary care physicians are unfamiliar with its genetic aspect. <br style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;" /><br style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;" />“Both liver doctors and pulmonologists know about Alpha-1 and know to test right away for the genetic component when they encounter liver disease or COPD, but among family doctors and internists, it’s not so well known.” she said. <br style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;" /><br style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;" />Clinical trials are now under way in New York to test all newborns for the genetic disorder. While there’s nothing that can be done to cure the problem, short of a transplant, anyone with a predisposition would be warned to protect themselves from risk factors such as smoking, and environmental and industrial pollutants. <br style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;" /><br style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;" />It took Everett 2 1/2 years to write and publish the book. <br style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;" /><br style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;" />“I started out writing the book for my grandchildren,” she said. “I wanted them to know they always have choices. It may not be the choices you wish you had, but you always have choices. Then I realized that I could help others, as well. Stuff happens in life that we can’t predict. It’s what we do when it does that defines us.” <br style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;" /><br style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;" />The book is available at <strong style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;">www.amazon.com</strong> or <strong style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;">www.barnesandnoble.com</strong>. Half the profits from the sale of the book will support research into Alpha-1 and COPD. <br style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;" /></div></div><div class="clear" style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;"></div></div><div class="copy" style="margin-bottom: 5px; margin-left: 5px; margin-right: 5px; margin-top: 5px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;">© <span id="year" style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;">2012</span> masslive.com. All rights reserved.</div></div></div>Sallyhttp://www.blogger.com/profile/08026578219849835139noreply@blogger.com9tag:blogger.com,1999:blog-7482001827452140299.post-5142958992995029242012-01-18T13:59:00.000-08:002012-01-18T13:59:31.749-08:00ANOTHER ALPHA ANGEL<!--[if gte mso 9]><xml> <o:DocumentProperties> <o:Template>Normal</o:Template> <o:Revision>0</o:Revision> <o:TotalTime>0</o:TotalTime> <o:Pages>1</o:Pages> <o:Words>371</o:Words> <o:Characters>2116</o:Characters> <o:Lines>17</o:Lines> <o:Paragraphs>4</o:Paragraphs> <o:CharactersWithSpaces>2598</o:CharactersWithSpaces> <o:Version>11.1539</o:Version> </o:DocumentProperties> <o:OfficeDocumentSettings> <o:AllowPNG/> </o:OfficeDocumentSettings> </xml><![endif]--><!--[if gte mso 9]><xml> <w:WordDocument> <w:Zoom>0</w:Zoom> <w:DoNotShowRevisions/> <w:DoNotPrintRevisions/> <w:DisplayHorizontalDrawingGridEvery>0</w:DisplayHorizontalDrawingGridEvery> <w:DisplayVerticalDrawingGridEvery>0</w:DisplayVerticalDrawingGridEvery> <w:UseMarginsForDrawingGridOrigin/> </w:WordDocument> </xml><![endif]--> <!--StartFragment--> <br />
<div class="MsoNormal"><span style="mso-spacerun: yes;"> </span>“FOREVER ON THE UPSWING”<o:p></o:p></div><div class="MsoNormal"><br />
</div><div class="MsoNormal"><br />
</div><div class="MsoNormal">My friend Greg Hules died this morning. For those Alphas (persons with Alpha-1 antitrypsin deficiency) lucky enough to have known him, he was a one-of-a-kind.<span style="mso-spacerun: yes;"> </span>For those who weren’t so lucky, Greg figured prominently in the last chapter my book, An Alpha-1 COPD Love Story. Here’s part of what I wrote about him.<o:p></o:p></div><div class="MsoNormal"><br />
</div><div class="MsoNormal"><span style="mso-tab-count: 1;"> </span>By 1988, Alpha-1 emphysema had severely compromised Greg, then age 38.<span style="mso-spacerun: yes;"> </span>As a result, he joined a pulmonary rehabilitation course and then one thing led to another.<span style="mso-spacerun: yes;"> </span>By 1990, he had formed an Alpha-1 support group in San Francisco and then his group joined with another in Minnesota to form the Alpha-1 National Association.<span style="mso-spacerun: yes;"> </span>As sick as he was, Greg agreed to serve on the Executive Committee of the Association and later became its President.<o:p></o:p></div><div class="MsoNormal"><span style="mso-tab-count: 1;"> </span><span style="mso-spacerun: yes;"> </span>Greg continued to serve the Association right up to his double lung transplant in 1997.<span style="mso-spacerun: yes;"> </span>Following his transplant, Greg first re-established himself as an entrepreneur.<span style="mso-spacerun: yes;"> </span>Later, he joined the board of the Alpha-1 Foundation and, from 2003 to 2004, served as its Chair.<span style="mso-spacerun: yes;"> </span>He finally rotated off in June 2011, after nine more years of service to the Alpha-1 community.<o:p></o:p></div><div class="MsoNormal"><span style="mso-tab-count: 1;"> </span>Greg wrote a piece for the Foundation’s Ten Year Retrospective.<span style="mso-spacerun: yes;"> </span>Its ending gives you the flavor of Greg better than I ever could.<span style="mso-spacerun: yes;"> </span>“My story began in the late ‘80’s.<span style="mso-spacerun: yes;"> </span>It is filled with memories of people who have made a difference . . . And tomorrow’s promise makes me believe our story has just begun.<span style="mso-spacerun: yes;"> </span>To those who have served in the past, to those that serve today, and to those who will join with us to make a difference tomorrow, I thank you.<span style="mso-spacerun: yes;"> </span>I wouldn’t have missed it for the world!”<o:p></o:p></div><div class="MsoNormal"><br />
</div><div class="MsoNormal">Greg was a Giant within our Alpha-1 community. We will all miss his can-do attitude and warm smile. Greg was also a wonderful husband to Sandi and a devoted father to their two boys. I will always remember Greg, however, as “forever on the upswing.” <o:p></o:p></div><div class="MsoNormal"><br />
</div><div class="MsoNormal">Greg’s health began to seriously decline over the last couple of years. But from talking to Greg, you never would have known it.<span style="mso-spacerun: yes;"> </span>Whenever I asked Greg how he was feeling, he’d invariably reply, “Well, I’ve just been through a little rough patch, but now I’m on the upswing.” Whenever I begin to feel sorry for myself now, all I have to do is think of Greg. Then, as if by magic, a smile creeps back onto my face.<o:p></o:p></div><div class="MsoNormal"><br />
</div><div class="MsoNormal">We have a wonderful tradition within our Alpha-1 community of honoring all those who have lost their battle with Alpha-1. We call them our “Alpha Angels.” Now Greg is one of our Alpha Angels. I know he is watching over all of us who loved him.<span style="mso-spacerun: yes;"> </span><o:p></o:p></div><div class="MsoNormal"><br />
</div><!--EndFragment-->Sallyhttp://www.blogger.com/profile/08026578219849835139noreply@blogger.com5tag:blogger.com,1999:blog-7482001827452140299.post-64876380992651012802012-01-18T06:05:00.000-08:002012-01-18T06:05:04.704-08:00The Real Silent Killer<!--[if gte mso 9]><xml> <o:DocumentProperties> <o:Template>Normal</o:Template> <o:Revision>0</o:Revision> <o:TotalTime>0</o:TotalTime> <o:Pages>1</o:Pages> <o:Words>616</o:Words> <o:Characters>3512</o:Characters> <o:Lines>29</o:Lines> <o:Paragraphs>7</o:Paragraphs> <o:CharactersWithSpaces>4312</o:CharactersWithSpaces> <o:Version>11.1539</o:Version> </o:DocumentProperties> <o:OfficeDocumentSettings> <o:AllowPNG/> </o:OfficeDocumentSettings> </xml><![endif]--><!--[if gte mso 9]><xml> <w:WordDocument> <w:Zoom>0</w:Zoom> <w:DoNotShowRevisions/> <w:DoNotPrintRevisions/> <w:DisplayHorizontalDrawingGridEvery>0</w:DisplayHorizontalDrawingGridEvery> <w:DisplayVerticalDrawingGridEvery>0</w:DisplayVerticalDrawingGridEvery> <w:UseMarginsForDrawingGridOrigin/> </w:WordDocument> </xml><![endif]--> <!--StartFragment--> <div class="MsoNormal"><br />
</div><div class="MsoNormal"><!--[if !supportEmptyParas]--> I have Alpha-1 COPD.<span style="mso-spacerun: yes;"> </span>You don’t know what that is?<span style="mso-spacerun: yes;"> </span>It’s chronic obstructive pulmonary disease caused by Alpha-1 antitrypsin deficiency.<span style="mso-spacerun: yes;"> </span>That didn’t help?<span style="mso-spacerun: yes;"> </span>I’m not surprised.<span style="mso-spacerun: yes;"> </span>Even though Alpha-1, the major genetic risk factor for COPD, is more common than cystic fibrosis, most people have never heard of it.<span style="mso-spacerun: yes;"> </span>Likewise, COPD is now the third greatest cause of death in this country, but we seldom read anything about it.<span style="mso-spacerun: yes;"> </span>Search the New York Times website like I did and you won’t find a single story focusing on COPD since November 2007.<span style="mso-spacerun: yes;"> </span>Just this past year, however, you’ll find plenty of stories focusing on Parkinson’s disease, Breast Cancer, Prostate Cancer, Alzheimer’s, Diabetes, and HIV even though COPD kills far more people in this country than any of these other diseases.<span style="mso-spacerun: yes;"> </span></div><div class="MsoNormal"><br />
</div><div class="MsoNormal">Federal funding for COPD research is likewise disproportionate to its impact. In fact, the Centers For Disease Control doesn’t even have a budget for COPD.<span style="mso-spacerun: yes;"> </span>As for the National Institute’s for Health (NIH), the Fair Allocations in Research Foundation (FAIR) takes NIH’s annual estimate of its support by disease and divides that by the number of deaths from each such disease to calculate its support per death.<span style="mso-spacerun: yes;"> </span>By FAIR’s calculations, in 2012 NIH plans to spend only $8 per death for COPD, as against $42 per death for diabetes, $86 per death for Alzheimer’s, $157 for Parkinson’s disease, $177 for Prostate Cancer, $3,047 for HIV/AIDS and $3,721 for Breast Cancer. </div><div class="MsoNormal"><br />
</div><div class="MsoNormal">Goggle “silent killer” and you will come up with heart disease, diabetes, and hypertension, but not COPD.<span style="mso-spacerun: yes;"> </span>That’s not surprising.<span style="mso-spacerun: yes;"> </span>The Real Silent Killer is the one you never read about.<span style="mso-spacerun: yes;"> </span>A recent Canadian study estimated that one in four people over age 35 would likely develop COPD.<span style="mso-spacerun: yes;"> </span>I’d say that was big news.<span style="mso-spacerun: yes;"> </span>But it wasn’t reported in the New York Times.<span style="mso-spacerun: yes;"> </span>Or how about the recent news that COPD is now the third greatest killer in the United States?<span style="mso-spacerun: yes;"> </span>That wasn’t reported in the Times either.<span style="mso-spacerun: yes;"> </span>I don’t mean to pick on the Times.<span style="mso-spacerun: yes;"> </span>I’m sure the reporting on COPD is no better in any other major newspaper in this country.<span style="mso-spacerun: yes;"> </span>But the Times is my newspaper of choice.<span style="mso-spacerun: yes;"> </span>I depend on it.<span style="mso-spacerun: yes;"> </span>So the question is why haven’t there been more stories about COPD?<span style="mso-spacerun: yes;"> </span></div><div class="MsoNormal"><br />
</div><div class="MsoNormal">Perhaps it’s the outdated stigma that people with COPD are smokers.<span style="mso-spacerun: yes;"> </span>In other words, we did it to ourselves. Yet according to the National Cancer Institute, of the 440,000 premature, preventable deaths each year in this country from exposure to cigarette smoke, 75 percent are from cancer, heart disease and stroke and only 25 percent are from COPD. Perhaps, instead, the mere image of those of us who must carry oxygen everywhere we go makes readers uncomfortable.<span style="mso-spacerun: yes;"> </span>Alternatively, perhaps it’s the sound of our portable oxygen equipment that disturbs them.<span style="mso-spacerun: yes;"> </span></div><div class="MsoNormal"><br />
</div><div class="MsoNormal">Ironically, the Times did carry one COPD-related story this past year written by one of its music critics.<span style="mso-spacerun: yes;"> </span>Instead of reporting on the concert he’d just attended, however, James Oestriech focused instead on the “relentless rhythm” of a portable oxygen device that, he said, had thoroughly spoiled his enjoyment of the music.<span style="mso-spacerun: yes;"> </span>He then expounded on whether the rights of persons with medical devices trumped his rights as a concertgoer and critic.<span style="mso-spacerun: yes;"> </span>Finally, he advised readers who might find themselves in a similar situation that, if they complained, an usher would move the offender and his device.<span style="mso-spacerun: yes;"> </span>To its credit, the Times then published a rebuttal from John Walsh, President of the COPD Foundation.</div><div class="MsoNormal"><br />
</div><div class="MsoNormal">Current estimates are that there are twenty-four million of us with COPD in this country. Tragically, only twelve million of us have been diagnosed to date.<span style="mso-spacerun: yes;"> </span>If and when the rest of us are, it could be too late.<span style="mso-spacerun: yes;"> </span>COPD is preventable and treatable, especially if diagnosed early enough.<span style="mso-spacerun: yes;"> </span>To their credit, the COPD Foundation and the National Heart and Blood Institute have each launched awareness campaigns.<span style="mso-spacerun: yes;"> </span>Recently pharmaceutical companies have also subjected those of us already diagnosed with COPD to an onslaught of TV ads.<span style="mso-spacerun: yes;"> </span>But we need a national conversation about COPD focusing on the major risk factors and the importance of early testing.<span style="mso-spacerun: yes;"> </span>Who better to initiate this conversation than my favorite newspaper, the New York Times? </div><!--EndFragment-->Sallyhttp://www.blogger.com/profile/08026578219849835139noreply@blogger.com7tag:blogger.com,1999:blog-7482001827452140299.post-45831080439187968382012-01-16T18:09:00.000-08:002012-01-16T18:09:04.599-08:00Why Cure COPD?<!--[if gte mso 9]><xml> <o:DocumentProperties> <o:Template>Normal</o:Template> <o:Revision>0</o:Revision> <o:TotalTime>0</o:TotalTime> <o:Pages>1</o:Pages> <o:Words>361</o:Words> <o:Characters>2060</o:Characters> <o:Lines>17</o:Lines> <o:Paragraphs>4</o:Paragraphs> <o:CharactersWithSpaces>2529</o:CharactersWithSpaces> <o:Version>11.1539</o:Version> </o:DocumentProperties> <o:OfficeDocumentSettings> <o:AllowPNG/> </o:OfficeDocumentSettings> </xml><![endif]--><!--[if gte mso 9]><xml> <w:WordDocument> <w:Zoom>0</w:Zoom> <w:DoNotShowRevisions/> <w:DoNotPrintRevisions/> <w:DisplayHorizontalDrawingGridEvery>0</w:DisplayHorizontalDrawingGridEvery> <w:DisplayVerticalDrawingGridEvery>0</w:DisplayVerticalDrawingGridEvery> <w:UseMarginsForDrawingGridOrigin/> </w:WordDocument> </xml><![endif]--> <!--StartFragment--> <br />
<div class="MsoNormal">Hello.<span style="mso-spacerun: yes;"> </span>My name is Sally Everett and I have Alpha-1 COPD.<span style="mso-spacerun: yes;"> </span>That’s chronic obstructive pulmonary disease (COPD) caused by a genetic abnormality called Alpha-1 antitrypsin deficiency (Alpha-1).<span style="mso-spacerun: yes;"> </span>I was diagnosed nineteen years ago.<span style="mso-spacerun: yes;"> </span>Today I’m on oxygen 24/7. <span style="mso-spacerun: yes;"> </span>But, as my husband would say, life’s definitely still worth living because it beats the alternative hands down.</div><div class="MsoNormal"><br />
</div><div class="MsoNormal">When I was diagnosed, I was a single parent and a successful attorney.<span style="mso-spacerun: yes;"> </span>I was also healthy, or so I thought.<span style="mso-spacerun: yes;"> </span>I ate right, I didn’t smoke, I was almost never sick and I exercised regularly.<span style="mso-spacerun: yes;"> </span>But a simple cold turned into pneumonia and I had to be hospitalized.<span style="mso-spacerun: yes;"> </span>X-rays revealed previously undiagnosed COPD. A subsequent blood test confirmed the diagnosis of Alpha-1 antitrypsin deficiency. Needless to say, I was devastated.</div><div class="MsoNormal"><br />
</div><div class="MsoNormal">One year later, however, I got back to the business of living. Not long thereafter, I met another Alpha (person with Alpha-1) named John Walsh. Before I knew it, he had convinced me to join the board of the Alpha-1 Foundation, one of the best decisions of my life. Not only did it shift my focus to the search for a cure for Alpha-1, but also one of my fellow board members became my current husband.</div><div class="MsoNormal"><br />
</div><div class="MsoNormal">Three years ago, I decided to write a “little book” for my grandchildren. I wanted to share my story with them.<span style="mso-spacerun: yes;"> </span>I wanted to tell them that, no matter how bad things might seem, they would always have choices. Two and a half years and two hundred pages later, my little book was actually published. I called it “An Alpha-1 COPD Love Story”, and dedicated it to my husband, Dr. Gordon l. Snider. </div><div class="MsoNormal"><br />
</div><div class="MsoNormal">Along the way, I discovered that not only did I enjoy writing, but also there were some who actually thought I might have some talent. The next question was where to apply it. The answer was simple. I’d become an advocate for a cure for COPD. The next question was how. I wrote an Op-Ed piece for the New York Times. It wasn’t accepted. Then my daughter suggested a blog.</div><div class="MsoNormal"><br />
</div><div class="MsoNormal">Current estimates are that there are twenty-four million of us in the United States today that have COPD.<span style="mso-spacerun: yes;"> But m</span>ore frightening is the estimate that twelve million of us don’t know it.<span style="mso-spacerun: yes;"> Likewise, c</span>urrent estimates are that there at least 100,000 Alphas in the United States today and less than ten thousand of us know it. For those of you who don't know it, Alpha-1 is the principal genetic cause of COPD. </div><div class="MsoNormal"><br />
</div><div class="MsoNormal">In sum, my first ojective in creating this blog is to advocate for a cure for COPD. But both Alpha-1 and COPD are treatable, especially if diagnosed early enough. That's my second objective, to advocate for early diagnosis for both Alpha-1 and COPD. My final objective is to continue my advocacy for a cure for Alpha-1. </div><div class="MsoNormal"><br />
</div><div class="MsoNormal">Over the next day or two, I will post my unpublished Op-Ed piece.<span style="mso-spacerun: yes;"> </span>In the meantime, I’d love to hear from you.<span style="mso-spacerun: yes;"> </span>What to you think of my mission?<span style="mso-spacerun: yes;"> </span>Will you join me?</div><div class="MsoNormal"><br />
</div><div class="MsoNormal"><br />
</div><!--EndFragment-->Sallyhttp://www.blogger.com/profile/08026578219849835139noreply@blogger.com72