tag:blogger.com,1999:blog-40162475161380853392024-03-13T08:08:48.275-04:00Breathing CompanionsAnonymoushttp://www.blogger.com/profile/08061954435357100481noreply@blogger.comBlogger98125tag:blogger.com,1999:blog-4016247516138085339.post-78157834739016417862011-11-14T14:11:00.001-05:002011-11-14T14:11:49.692-05:00All I Want For Christmas...It's not what you think<span style="font-family: inherit;"><span id="internal-source-marker_0.8353989913593978" style="font-size: 16px; vertical-align: baseline; white-space: pre-wrap;">All I Want For Christmas... Is not what you might think.</span><br /><span style="font-size: 16px; vertical-align: baseline; white-space: pre-wrap;">It looks like we will not be leaving now until just after the first of the year. Dr. Machiarinni called me and he told me that he is perfecting a special matrix base to grow the stem cells on to make the new airways. This is being done to make it more porous but at the same time stronger for my specific EDS needs and should help grow and hold the tissue better. This is a MAJOR BREAKTHROUGH both for me and for EDS advancement, as well. So we have a bit more time to raise funds and Steven and I will be home for the holidays. It's scary because of my decline but, it has some real benefits as well.</span><br /><span style="font-size: 16px; vertical-align: baseline; white-space: pre-wrap;"></span><br /><span style="font-size: 16px; vertical-align: baseline; white-space: pre-wrap;">That brings me to something very near and dear to my heart. We have not seen Steven's parents since this all began, over four years ago. They turned 82 and 85 years old this past Fall and they are missing us greatly as well as being really concerned that there is a real possibly they might never see me again as I will be heading into a serious transplant procedure expected to last over 24 hours in surgery alone and in a foreign country thousands of miles away. Mom and Dad have no money as they have given all they have to save my life. We don't have any either because we are putting every dime we have into the same cause. They can't drive out because it would be too much for them physically to spend four to five days on the road and we can't drive their way because of my health (and Steven's) right now.</span><br /><span style="font-size: 16px; vertical-align: baseline; white-space: pre-wrap;"></span><br /><span style="font-size: 16px; vertical-align: baseline; white-space: pre-wrap;">All I want for Christmas is to be able to see these precious people in my life one more time before I go into this “unknown.” I was wondering if people have frequent flier miles or “hotel nights” they would be willing to donate to make this dream come true for me? Or people could help by donating towards this, we could use anything left over towards the transplant needs, afterward. Checks could be handled the same way as we have been doing them – just mark them Rachel's Christmas Wish. They can still be sent through the church at the same address or on the site. I know it is a lot to ask, but I have no other way to make this happen without help.</span><br /><span style="font-size: 16px; vertical-align: baseline; white-space: pre-wrap;"></span><br /><span style="font-size: 16px; vertical-align: baseline; white-space: pre-wrap;">Mom and Dad would have to fly from either St. Louis or Chicago to Burlington, Vermont. Unfortunately, we won't be able to travel to Boston or Albany or somewhere far away to get them, in my current condition. There is a Court Yard and a Hilton just one block from where we live downtown which is within walking distance from us. I am going to see if someone local will try to get them to “comp” a room or reduce their rates for a three night stay for this purpose. (Unfortunately, our tiny apartment doesn't have any spare bedroom space available for them to stay and it's full of medical equipment these days.) If that doesn't work, we can try other hotels in the area. I will try to find someone who might let them use a car locally for that time because it will help them feel more independent while they are here (which would mean a lot to them).</span><br /><span style="font-size: 16px; vertical-align: baseline; white-space: pre-wrap;"></span><br /><span style="font-size: 16px; vertical-align: baseline; white-space: pre-wrap;">It doesn't have to be at Christmas, Steven has a birthday on December 2</span><span style="font-size: 10px; vertical-align: super; white-space: pre-wrap;">nd</span><span style="font-size: 16px; vertical-align: baseline; white-space: pre-wrap;"> and it could be anytime between then and Christmas so we can find the best rates. Steven says he doesn't want anything else for his birthday either if we can do this.</span><br /><span style="font-size: 16px; vertical-align: baseline; white-space: pre-wrap;"></span><br /><span style="font-size: 16px; vertical-align: baseline; white-space: pre-wrap;">THERE IS SIMPLY NO WAY EXPRESS WHAT THIS WOULD MEAN FOR STEVEN AND ME. It is all I want for Christmas. Help me, if you can.</span></span>Anonymoushttp://www.blogger.com/profile/08061954435357100481noreply@blogger.com0tag:blogger.com,1999:blog-4016247516138085339.post-18648596383532447322011-09-05T00:30:00.000-04:002011-09-07T00:52:49.304-04:00(Published in Seven Days Newspaper) Fletcher Allen Has a Candidate for Groundbreaking Windpipe Transplant<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="http://www.7dvt.com/files/250LocalMatters-stem.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="400" src="http://www.7dvt.com/files/250LocalMatters-stem.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">From Left to Right: Rachel, Steven, Siena, & Paolo</td></tr>
</tbody></table>
By <a href="http://www.7dvt.com/searchindex?filter1=4004">Ken Picard</a> [08.03.11] <br />
<br />
Rachel Phillips has a history of defying long odds. The Florida-born
ballerina beat out 14,000 competitors to win a coveted spot in London’s
prestigious Royal Ballet. As a professional dancer, she traveled all
over the world, and once shared a stage with Rudolf Nureyev.<br />
<br />
More recently, Phillips pulled off her most spectacular feat yet: The
Burlington resident found the only doctor in the world capable of
saving her life. By coincidence, Paolo Macchiarini was in Burlington
last week to attend an international medical conference. The Italian
surgeon agreed to perform a highly experimental surgery on Phillips.
She’ll be the 12th patient in the world to undergo the cutting-edge
procedure.<br />
<br />
Macchiarini is a professor of regenerative surgery at the Karolinska
Institute in Stockholm. Working with an international team of doctors
and researchers in Sweden, Spain and Italy, he has developed a method of
growing a replacement trachea, or windpipe, in a laboratory using stem
cells extracted from the patient’s own body.<br />
<br />
The procedure is so new and innovative — the first one made
international news when it was performed three years ago in Barcelona —
that the U.S. Food and Drug Administration has yet to approve it. Unless
the FDA OKs it under a “compassionate use” exemption, Macchiarini won’t
be able to perform the operation in this country, nor can the
Phillipses expect Medicaid to pay for it.<br />
<br />
Rachel, 34, and her husband, Steven, moved to Burlington four and a
half years ago to open a performing arts school. But their plans were
derailed when Rachel was diagnosed with a life-threatening condition
known as Ehlers-Danlos Syndrome, a genetic disorder that afflicts her
body’s connective tissues.<br />
<br />
Since childhood, Phillips has suffered from shortness of breath. For
years, family, friends and even doctors chalked it up to the physical
demands of professional dancing. However, when Phillips turned 30,
“Stuff just started falling apart on me left and right,” she recalls.
She developed an excruciating headache that has persisted for years. She
tore ligaments in her shoulder, developed hip problems and frequently
dislocates other joints.<br />
<br />
Those ailments are all linked to a hallmark symptom of EDS: extreme
hypermobility, or the tendency of limbs and joints to flex beyond their
normal range of motion. Ironically, the very physical trait that may
have enabled Phillips to become a successful dancer now threatens her
life.<br />
<br />
That’s because Phillips’ EDS also causes a condition known as
tracheobronchomalacia, which makes her trachea and bronchial airways
collapse each time she exhales. As a result, she needs to be on
supplemental oxygen at all times. Her service dog, Sienna, is trained to
alert Phillips whenever her blood-oxygen levels fall below an
acceptable limit.<br />
<br />
Phillips, whose dark-brown eyes make her resemble a young Ally
Sheedy, doesn’t look like a lean and fit ballerina anymore. She wears
her once-long black hair much shorter and dyed with a funky blend of
purple highlights. On the day we met, she had a brace on one wrist, the
result of a recent injury.<br />
<br />
Phillips has undergone nine unsuccessful surgeries to try to open her
airway. In the last year alone, she’s had 31 bronchoscopies and spent a
total of 78 days in the hospital.<br />
<br />
During one such stay in 2010, Phillips met Daniel Weiss, a pulmonary
specialist at Fletcher Allen Health Care. An associate professor in
UVM’s College of Medicine, Weiss also runs a research lab that received a
$4.3 million federal stimulus grant to figure out how to bioengineer
lungs using a patient’s own stem cells.<br />
<br />
Weiss, who organized last week’s biennial conference on regenerative
medicine, calls organ and tissue regeneration “like science fiction
coming to life.” Though it’s still in its infancy, the field holds
enormous promise for patients like Phillips whose organs and tissues
have been damaged by age, injury, disease or congenital defects.<br />
<br />
It was through Weiss that Phillips first learned of Macchiarini’s
work. She says it sounded highly theoretical and futuristic — something
that might be possible 10 to 15 years down the road. She never imagined
she would become a candidate for such a procedure.<br />
<br />
Earlier this year, though, Phillips’ condition worsened. After she
underwent yet another bronchoscopy at a hospital in Boston, Steven says
the doctor came out “white as a sheet” and informed them that Rachel’s
airway, which had been collapsing 50 percent on normal exhalation, was
now closing 90 percent on each breath. The membranes in her airway could
close entirely and get stuck that way. Since then, it’s happened
several times.<br />
<br />
On June 14, the couple was in Weiss’ office when the Vermont doctor
had an “aha” moment: One of Macchiarini’s colleagues from Stockholm was
in town to review Weiss’ research. <br />
Macchiarini’s colleague consulted with Phillips, reviewed her scans,
then sent them to Stockholm. “Dr. Macchiarini saw the bronch,” Phillips
says; “he saw the collapse and basically said to me, ‘I will take your
case.’”<br />
<br />
While in Burlington last week, Macchiarini, 53, explained why he
agreed to treat Phillips — free of charge. “She’s a young and beautiful
girl who had a beautiful past,” he explains, in a thick Italian accent.
“She deserves to live.”<br />
<br />
Macchiarini detailed how the procedure works: Essentially, doctors
create a matrix or “scaffold” of Phillips’ windpipe, using either a
plastic polymer modeled after her own trachea, or one taken from a
cadaver stripped of all its organic cells. That scaffold is then placed
in a liquid medium and seeded with cells extracted from Phillips’ bone
marrow. Within 48 hours, Phillips’ stem cells grow a new windpipe over
the scaffold. Unlike conventionally transplanted organs, Macchiarini
explains, this one won’t be rejected by her body or require lifelong
immunosuppressant drugs.<br />
<br />
What are the odds of success? Of the 11 trachea transplants he’s done
so far — 10 involving donated tracheas and one using a synthetic one —
Macchiarini said only one patient has died, and that was due to
complications unrelated to the surgery. Most patients woke up after the
14- to 19-hour surgery and began breathing normally.<br />
<br />
Macchiarini isn’t just working on tracheas, either. As a thoracic
surgeon, he’s also developing regenerative therapies involving the
lungs, heart and esophagus. He hopes to use the patient’s body as a
“bioreactor” to regenerate damaged organs and tissues in place — without
surgery. The stem cells used in these procedures are not the embryonic
kind that have aroused opposition from antiabortion activists in the
United States and elsewhere.<br />
<br />
“We have had, so far, excellent results, especially in patients that
have attempted suicide through the ingestion of caustic liquids,” he
added. “It’s not a goal. It’s a dream... But I don’t think we’re that
far away from that dream.” He envisions the procedure will one day be
done “in every corner of the world.”<br />
<br />
By then, maybe sci-fi surgery won’t be prohibitively expensive. As if
their medical problems weren’t enough, the Phillipses also face dire
economic challenges. Over the last four years, neither has been able to
work. Steven, a minister by training, puts it this way: “Right now, my
mission is Rachel.” Consequently, the couple is tens of thousands of
dollars in debt.<br />
<br />
Despite the surgeon’s generosity, the experimental procedure to save
Phillips’ life will still cost them about $300,000. Even if it can be
done in the United States — Macchiarini is exploring the possibility of
performing the historic procedure at Fletcher Allen — Medicaid is
unlikely to cover it. Steven says local doctors have already had to
fight “tooth and nail” to get many of Rachel’s routine medical expenses
paid for.<br />
<br />
“We feel like we’re in that Michael Moore movie,” Steven says,
referring to the 2007 documentary Sicko. “We can save the four fingers
that were cut off, but we can’t pay for all four of them, so you have to
choose which ones you want to lose. We face that literally every two
weeks.”<br />
<br />
Meanwhile, doctors plan to extract cells from Phillips’ bone marrow
some time this week in anticipation of a surgery before October. Weiss
says that Macchiarini may even try an initial procedure to fix Phillips’
airway before opting for a full tracheal transplant. That way, he says,
“She now has two potential options, whereas before, she was really
looking at a slow, painful death in the not-too-distant future.”<br />
<br />
“The last three years have just been total hell,” adds Phillips,
without a trace of self-pity. “Yeah, it’s scary to be one of the first
people to have this surgery ... But if it works for me, it’s going to
open the door for so many other people.”<br />
<br />
Yet another miracle may be in the works: According to Dr. Weiss, a
regenerative medicine specialist who attended last week’s conference
asked for a sample of Phillips’ bone marrow. His idea: to identify the
underlying causes of Phillips’ EDS, and then use genetic engineering to
correct those cells before they’re implanted. If that works, it could
cure Phillips’ underlying disease, though Weiss cautions that that road
could be an even longer one for her. <br />
<br />
This former ballerina has pulled off plenty of breathtaking moves in
the past. For now she remains, quite literally, a woman waiting to
exhale.<br />
<br />
<br />
See original article on Seven Day's Website at the link here: <a href="http://www.7dvt.com/2011fletcher-allen-has-candidate-groundbreaking-windpipe-transplant">Fletcher Allen Has Candidate For Groundbreaking Windpipe Transplant</a>Anonymoushttp://www.blogger.com/profile/08061954435357100481noreply@blogger.com0tag:blogger.com,1999:blog-4016247516138085339.post-46519729330812699622011-08-22T17:37:00.000-04:002011-08-22T17:56:42.328-04:00(Published 8/22/2011 In the Quincy Herald-Whig) Former ballerina hopes to become 12th person in world to undergo surgery to replace windpipe<br />
<table align="left" cellpadding="3" cellspacing="2" style="background-color: white; color: black; font-family: Arial, Helvetica, sans-serif; font-size: 24px; font-weight: bold; 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; width: 240px;"><tbody 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;">
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<span style="font-family: inherit; font-size: 10px; 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;">Rachel and Steven Phillips, who moved from Quincy nine years ago, are hoping the necessary medical and political channels can be cleared in time for her to receive a life-saving medical procedure. Rachel, a former ballerina, suffers from a rare condition that causes her windpipe to close 90 percent each time she exhales. (Submitted photo)</span></div>
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<br />
Published: 8/22/2011 | Updated: 8/22/2011<br />
<br />
By <a href="https://mail.google.com/mail/?view=cm&fs=1&tf=1&to=seighinger@whig.com">STEVE EIGHINGER</a> <br />
<br />
Herald-Whig Staff Writer <br />
<br />
Rachel Phillips hopes to some day be able to return to Quincy, if for no other reason than to thank all the people here who continue to hold her up in prayer.<br />
<br />
But first things first.<br />
<br />
Phillips, 34, a former ballerina with the world-renown Royal Ballet of London and wife of Steven Phillips, a native Quincyan, is fighting for her life with every breath she takes.<br />
<br />
Rachel and Steven, who moved from Quincy to Burlington, Vt., about nine years ago, are attracting nationwide attention. Rachel's medical condition has drawn interest from ABC News, PBS and Reuters. Add to that numerous articles in a wide variety of other publications.<br />
<br />
Rachel is hoping she will soon be the 12th person in the world to undergo experimental surgery that will replace her trachea, or "windpipe," which now collapses at a 90 percent rate every time she exhales.<br />
<br />
"I'm not going to lie," she said. "I try not to think about it. I am doing everything I can to stay alive ... it is what it is."<br />
<br />
There is only one doctor in the world who can perform the surgery, and he has agreed to attempt the 20-hour procedure. Italian surgeon Paolo Macchiarini, a professor of regenerative surgery at Karolinska Institute in Stockholm, Sweden, has pioneered this type of regenerative surgery through the use of stem cells extracted from the patient's own body. The stem cells used in these procedures are not the embryonic kind that have aroused opposition from antiabortion activists in the United States and elsewhere.<br />
<br />
Macchiarini, who recently visited with the Phillipses in their home while on a visit to the United States, has developed a method of growing a replacement trachea through the assistance of an international team of doctors and researchers in Sweden, Spain and Italy.<br />
<br />
The procedure, however, has yet to be approved by the U.S. Food and Drug Administration, and unless Phillips can receive a "compassionate use" exemption, Macchiarini will not be able to perform the operation in this country. In addition, the Phillipses could not expect any governmental financial assistance for a procedure that would cost a minimum of $300,000 -- and that is with Macchiarini waiving his fee.<br />
<br />
And due to Phillips' condition, it is uncertain if she would be able to make the cross-Atlantic trip to Europe, a journey that would add even more cost to an already staggering figure for a family strapped by medical bills.<br />
<br />
"I find myself wondering if a lot of the red tape will work out," she said. "It's strange to have your life valued in a dollar amount.<br />
<br />
"It's scary."<br />
<br />
Steven and Rachel are receiving support from across the country, including Quincy.<br />
<br />
"We are so grateful for the friends we have in Quincy, and all the prayers there," Rachel said. "I wish we could get back to visit."<br />
<br />
Right now, though, that is not possible.<br />
<br />
Phillips' condition is all related to a life-threatening condition called Ehlers-Danlos Syndrome (EDS), a genetic disorder that affects her body's connective tissues. Through early adulthood, her "blessing" of extreme mobility was actually a curse working against her. At around age 30, her body literally started to fall apart via numerous torn ligaments and dislocations. She lives in what is often extreme pain.<br />
<br />
The physical trait that may have allowed Phillips to rise to the top of the ballet world now threatens her life.<br />
Doctors have now also determined that EDS was directly responsible for five miscarriages Rachel had earlier in the couple's marriage.<br />
<br />
In just the last year, she has spent more than two months in the hospital and had 31 bronchosopies to open and examine her trachea.<br />
<br />
Macchiarini has detailed in published reports how the procedure works. Doctors create a matrix -- or "scaffold" -- of Phillips' windpipe, using either a plastic polymer modeled after her own trachea, or one taken from a cadaver stripped of all its organic cells. That scaffold is then placed in a liquid medium and seeded with cells extracted from Phillips' bone marrow. Within 48 hours, Phillips' stem cells grow a new windpipe over the scaffold. Macchiarini said that unlike conventionally transplanted organs, this one won't be rejected by her body or require lifelong immunosuppressant drugs.<br />
<br />
The odds of success appear excellent. Of the 11 trachea transplants he's done so far -- 10 involving donated tracheas and one using a synthetic one -- Macchiarini said only one patient has died, and that was due to complications unrelated to the surgery. Most patients, he said, have awakened after the lengthy surgery and began breathing normally.<br />
<br />
As a thoracic surgeon, Macchiarini is also developing regenerative therapies involving the lungs, heart and esophagus. He hopes to use the patient's body as a "bioreactor" to regenerate damaged organs and tissues in place -- without surgery.<br />
<br />
Steven and Rachel moved to Vermont to start a school for the performing arts. A retired minister, Steven, 58, now devotes his life to caring for his wife of 12 years.<br />
<br />
"We have been averaging 4-8 medical appointments per week for the last year," said Steven, who still has family members in Quincy. "It has been extremely draining ... but Rachel is a unique person."<br />
<br />
Steven loves to talk about his wife's zest for life and her fighting spirit. She has personally done extensive research on her own condition.<br />
<br />
"That same tenacity is there in everything she does," he said.<br />
<br />
He said it is especially difficult to watch when she begins to struggle for air. There are times when her trachea struggles to open after she exhales.<br />
<br />
"I know (at a certain point) I have two minutes to live," Rachel said.<br />
<br />
That's when there is a mad dash to the hospital.<br />
<br />
Steven said for Rachel to have accomplished what she did as a dancer -- beating out 14,000 other artists for a spot with the Royal Ballet -- is equivalent to winning a gold medal in the Olympics. Rachel also danced with the Kirov in St. Petersburg, Russia, the Nashville Ballet and other companies in the U.S. and abroad.<br />
<br />
That all makes her current situation even more frustrating for the both of them, realizing how fate robbed her of a special gift and talent.<br />
<br />
"If we had the funds, we would be in Sweden right now," Steven said. "In spite of several surgical procedures aimed at keeping her airways from collapsing, her condition has dramatically declined in the past 12 months and, we are told, without this operation, she will die from the condition.<br />
<br />
"Obviously these obstacles are daunting. We are in the process trying to raise the funds from private sources. One church did a water balloon throwing booth where the pastor sat in a chair and people purchased chances to hit him with a water balloon. Another woman from Montana has offered in her blog online to shave her head if she can raise $5000 to help. The local news station put a link on their website for people willing to contribute."<br />
<br />
Rachel is quick to point out that if she is able to receive the surgery, her problems with EDS will not be solved, but the procedure would solve one -- and arguably the most important -- part of the equation.<br />
<br />
It would keep her alive.<br />
<br />
-- <a href="https://mail.google.com/mail/?view=cm&fs=1&tf=1&to=seighinger@whig.com">seighinger@whig.com</a>/221-3377 <br />
<br />
<br />
<br />
Link to the original article: <a href="http://www.whig.com/story/news/In-Need-of-a-Miracle-082211" style="font-family: 'Times New Roman'; font-size: medium; font-weight: normal; text-align: -webkit-auto;">http://www.whig.com/story/news/In-Need-of-a-Miracle-082211</a></div>
Anonymoushttp://www.blogger.com/profile/08061954435357100481noreply@blogger.com0tag:blogger.com,1999:blog-4016247516138085339.post-22779179356594332382011-08-12T01:29:00.000-04:002011-09-05T15:52:21.223-04:00One Minute at a Time (published on the GoodMenProject.com website)<span class="date published time" title="2011-08-18T22:50:42-0400">August 18, 2011</span> By <span class="author vcard"><span class="fn"><a href="http://goodmenproject.com/author/kirstentynan/" rel="author" title="Posts by Kirsten Tynan">Kirsten Tynan</a></span></span><br />
<br />
<h2 style="text-align: center;">
<i>Through Facebook, Kirsten Tynan tells the story of Steven Phillips, a man standing between his wife and her death.</i></h2>
Taking care of the person who means the most to you in the world when
you are the only one between her and death starts to become too much to
ignore any longer.<br />
<i>I recently read Dan Griffith’s article <a href="http://goodmenproject.com/featured-content/the-demise-of-the-guise-og-guys/" target="_blank">The Demise of the Guise of Guys</a>
discussing, among many things, men’s experiences with intimacy and
social isolation. Elsewhere, I have also been following one of the most
intimate glimpses I’ve had into another person’s life. </i><br />
<i>Steven Phillips is a good man and a good husband. His wife Rachel
is amazing in her own right, but I want to focus mainly on Steven’s
story here. He is, for me, a living example of how strength goes
hand-in-hand with vulnerability, trust, and authenticity. I invite you
to read on to see what I mean. These passages are condensed from
Steven’s Facebook notes. Know that what you read here barely scratches
the surface.</i><br />
<i>Due to a genetic condition, Steven’s wife must have a
biosynthetic trachea transplant, an experimental procedure that is
neither covered by insurance nor can be performed legally in the United
States. Emotionally stretched to the limit and financially devastated,
Rachel and Steven now face the daunting challenge and enormous cost of
the only possible life-saving therapy for Rachel. Many have come
together on Rachel’s behalf, as hopefully many more people will. But
more than anyone, it is Steven who stands between Rachel and death.</i><br />
<div style="text-align: center;">
♦◊♦</div>
July 4, 2011<br />
I took Rachel to see the fireworks last night. The park that
overlooks Lake Champlain is a block and a half from our apartment. That
much was a blessing as 20,000 people go to this every year. We had a
spectacular view from the cliffs over the lake.<br />
Rachel didn’t do so well in the end. She took a big tank of oxygen to
make sure it would last through the event. When the show was over, she
could hardly walk, and we were stuck in a crowd of 20,000 people. To
make matters worse, the oxygen had run out! We inched our way back to
the apartment. If we had needed an ambulance, it would have been chaos
for them to get through such a crowd.<br />
People say, “Just take things one day at a time.” For us, it is often
one minute at a time. All we know to do is just to take the next step
that lies in front of us. Fortunately, we always find God standing right
there when our foot reaches the next step… each time, just the
provision we need… just the amount of assurance to continue on or to
wait a moment and take another breath.<br />
Try this with me. Take a breath.<br />
Now… skip the next 9 breaths you would normally take! Hold that one
breath for sixty seconds. Notice how light-headed you begin to feel, how
shaky, how disoriented. Your lungs begun to burn for more oxygen, and
you just can’t wait for that next refreshing breath!<br />
You are now living on a comparable amount of oxygen to what Rachel is.<br />
Out here, the next step, the next breath, is a miracle of such wonder
and grace. We wait here… waiting upon God… waiting for the pieces to
fall into place… a transplant in Sweden that seems like a science
fiction novel… a creative miracle… we don’t know. We only know that God
is with us right here on this step we stand upon today… this minute…
this breath.<br />
Here’s to my amazing wife, Rachel… the strongest and bravest person I know.<br />
<div style="text-align: center;">
♦◊♦</div>
July 14, 2011<br />
I had to respond to a question someone asked me tonight and a good a
friend of mine was here so I let him read my reply. He asked me to post
this after he read it because he felt it was important for me to
communicate it. I argued with him, but he said, “Steven, those people
who want to help you will appreciate you sharing your heart and your
needs even if it is embarrassing for you to do so again… and those who
don’t will not pay it any attention anyway.” AGH!!! I just know we are
facing the biggest “mountain” we have had to climb yet! I feel like some
whining little boy!!! AGH!!! I wish there was some way for me to strike
out against something. A very macho/alpha/male response, I know… but
how do I “punch out” at a disease?<br />
Here goes… again…<br />
Our church is setting up a fund to receive donations for this
purpose. People can donate to it at Organic Church Community; 70 South
Winooski Ave. #197; Burlington, VT 05401, or online through PayPal using
the email address lifereinspired@gmail.com. People need to note on
their donations that the purpose is to help with Rachel’s expenses, and
we will send a receipt at tax time.<br />
I now understand why “humble” is a root part of the word
“humiliated”. I feel like such a beggar. I think sometimes, “God, I
can’t send out another update saying our problems are overwhelming us!”
He says nothing in reply to that. I think He wants to do something
deeper in me, and in those who stand with us, than I can understand on
this side of heaven. I just know He has made us a broken vessel. All we
can do is wait for the Great Potter to mend us. WAITING is the hardest
thing I have ever done!<br />
<div style="border-left: 2px solid; clear: both; float: right; margin: 0px 15px 15px 20px; padding-left: 15px; width: 350px;">
<table align="right" border="0.5" cellpadding="0" style="width: 350px;">
<tbody>
<tr>
<td><div>
<span style="color: #307d7e; font-family: georgia; font-size: 20px; line-height: 125%;">I
am only a block and a half away, but the thoughts start to increase in
intensity. Was she breathing? Was her oxygen all right? What kind of a
husband are you, Steven? You didn’t even bother to check her color
before you left.</span></div>
</td>
</tr>
</tbody>
</table>
</div>
<div style="text-align: center;">
♦◊♦</div>
July 15, 2011<br />
Rachel is in ICU. She will be sedated all night and she is intubated
on a ventilator into her airways for her to breathe. They can’t bring
her off sedation because every time they have tried, the coughing has
resumed. Dr. Wiess told me they will try again tomorrow, but he said if
they can’t do it any other way, they will keep her intubated until Dr.
Macchiarini comes on the 25th.<br />
They asked me not to try and stay overnight at the hospital because
they said she would not be awake at all and I have to look after Siena
[Rachel's service dog] the whole time. They were very understanding
about her and let her right along bedside in ICU. Siena really got
worried when she licked Rachel’s hand and there was no response. Anyway,
I’m only one mile away, and they said I could come back anytime in the
night if I wake up and want to come back to see her.<br />
This is a hard time. I couldn’t sleep last night because I was trying
to imagine any kind of life without Rachel. I know everyone faces that
some day… but not everyone faces it with a wife of only 34 years old.
This will be the hardest night I’ve ever had yet. I’m holding on, Lord.
Now You have to hold on to Rachel!<br />
<div style="text-align: center;">
♦◊♦</div>
July 23, 2011<br />
When you are caught in a serious medical problem, you find yourself
somehow strangely detached from it at the same time. You do this to try
to protect your inner core from the fear, the sense of helplessness, and
the worry that “this could be it” that nags at your mind.<br />
Then all of a sudden, the time for making choices that will affect
the rest of your life is upon you. One day is all we have left before
that day is upon us. We think, “You should be feeling something, doing
something… anything.” All we can do is let the minutes tick by and wait.
It’s like the calm before a tornado, eerie and hushed. Are we doing the
right thing? What else can we do? Have we done everything we should
have done? Oh God! Hear my lonely, trembling cry. I believe… help me
with my unbelief. Why is it so quiet?<br />
Is this how Jesus felt that night in the garden?<br />
No answers… only loving friends waiting with us.<br />
Silent weeping.<br />
<div style="text-align: center;">
♦◊♦</div>
July 31, 2011<br />
I walked down to the park overlooking Lake Champlain this morning.
Beautiful! I took Siena with me because she needs a life also. She can’t
be a service dog all the time. By the time she does her “morning
stuff”, we run into a couple visiting Burlington for the weekend. They
watch us for several minutes before they come up and ask about the “the
amazing dog” they have been talking about.<br />
A few minutes more and they know about her “service dog” abilities.
She can tell every time Rachel’s oxygen level drops below 95% and comes
to warn us. “Wow, I’ve heard about dogs like that before but I’ve never
really met one before. I work with kids with pulmonary issues. What’s
the medical condition affecting your wife?” Fifteen minutes more and
they are almost in tears. “We’ll keep her in our prayers,” they say as
we part company. This happens at least a dozen times every day.<br />
Siena and I try to get five minutes to ourselves where she is just a
dog and I am just a guy in the early morning mist. But a nagging feeling
starts to niggle at my thoughts. I didn’t check Rachel before I left
with Siena this morning. I am only a block and a half away, but the
thoughts start to increase in intensity. Was she breathing? Was her
oxygen all right? What kind of a husband are you, Steven? You didn’t
even bother to check her color before you left. I’ve been gone less than
a half-hour, but the pressure of taking care of the person who means
the most to you in the world when you are the only one between her and
death starts to become too much to ignore any longer.<br />
Siena and I start home at a quicker pace than we used to head out
this morning. I have to make sure she is OK. On Thursday, Paolo [Dr.
Macchiarini] said, “Your job, Rachel, is to make sure you stay alive to
October. You have to do whatever that takes to make sure you do!” Those
words awaken me every night. These thoughts are every day of our life. I
never have fifteen minutes without these concerns coming in. I never
wake at night without listening, very quietly, to see if she is still
breathing. This is “life” as it is today… and everyday. This is why I
write you guys so often. Without the chance to get some of this stuff
off my chest… I think I’d go mad. Thank you for caring enough to listen.<br />
<div style="text-align: center;">
♦◊♦</div>
August 15, 2011<br />
I know many of you are praying for Rachel. Just know that her airways
collapsed SEVEN times this weekend alone. Seven times I had to pause
and hold my breath to see if she would be able to get them to open again
or run for the car to make a flying trip to the emergency room.<br />
We are now talking with our doctors about trying to raise the money
to just go to Sweden and have the surgery because each one of these
events is now life threatening. To date, we have raised about $3000, for
which we are truly thankful. That represents only about 1% of what we
will need… but it is a start… and God is BIG.<br />
Please keep us in prayer. We have some tough decisions to make soon.
It’s nerve-racking to “camp” this close to the “fault line” of an
earthquake. Pray for endurance and sanity.<br />
<div style="text-align: center;">
♦◊♦</div>
<i>This story continues to unfold in <a href="http://www.facebook.com/drstevenphillips?sk=notes&s=20" target="_blank">Steven’s Facebook Notes</a>, which you can read if you are logged into Facebook, and on Steven’s and Rachel’s blog <a href="http://breathingcompanions.blogspot.com/" target="_blank">Breathing Companions</a>.
I also want to mention that in addition to the information on how to
make a tax-deductible contribution in the July 14 passage above, through
the end of August I am offering my self-esteem, disarming good looks,
and dignity at a rock bottom price to help out. See the challenge in the
sidebar on the website <a href="http://rachelreinspired.com/" target="_blank">Rachel Reinspired</a>.</i><br />
<br />
<br />
<b>About Kirsten Tynan</b><br />
<a href="http://0.gravatar.com/avatar/a2bbf7edc0f7c8bd6b23aa16a8a78b63?s=70&d=http%3A%2F%2F0.gravatar.com%2Favatar%2Fad516503a11cd5ca435acc9bb6523536%3Fs%3D70&r=R" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="http://0.gravatar.com/avatar/a2bbf7edc0f7c8bd6b23aa16a8a78b63?s=70&d=http%3A%2F%2F0.gravatar.com%2Favatar%2Fad516503a11cd5ca435acc9bb6523536%3Fs%3D70&r=R" /></a>Kirsten Tynan lives in a
small town in Montana with her dog Pepper Ann Delbarco. Her superpowers
are overanalysis and bed covers hegemony. She believes that doing the
impossible makes us mighty.<br />
<br />
<br />
<br />
<br />
<h3>
Comments</h3>
<ol class="comment-list">
<li class="comment even thread-even depth-1" id="comment-43217">
<div class="comment-author vcard">
<img alt="" class="avatar avatar-48 photo" height="48" src="http://0.gravatar.com/avatar/628c07e341fc256f7476eebaee39671b?s=48&d=http%3A%2F%2F0.gravatar.com%2Favatar%2Fad516503a11cd5ca435acc9bb6523536%3Fs%3D48&r=R" width="48" /> <cite class="fn">Iris</cite> <span class="says">says:</span> </div>
<div class="comment-meta commentmetadata">
<a href="http://goodmenproject.com/featured-content/one-minute-at-a-time/comment-page-1/#comment-43217">August 19, 2011 at 8:26 am</a>
</div>
<div class="comment-content">
<img alt="Thumb up" id="up-43217" src="http://dcgn0mrmiumxb.cloudfront.net/wp-content/plugins/comment-rating/images/1_16_up.png" style="border: none; cursor: pointer; padding: 0px;" title="Thumb up" /> <span id="karma-43217-up" style="color: #009933; font-size: 12px;">0</span> <img alt="Thumb down" id="down-43217" src="http://dcgn0mrmiumxb.cloudfront.net/wp-content/plugins/comment-rating/images/1_16_down.png" style="border: none; cursor: pointer; padding: 0px;" title="Thumb down" /> <span id="karma-43217-down" style="color: #990033; font-size: 12px;">0</span><br />
I can’t even begin to describe how touching this is.<br />
I wasn’t gonna leave a comment, but as I tried to access their blog,
the links weren’t working. I had to google the blog’s name to find it. I
just want to point this out, ’cause I think it is important that people
can access Rachel Reinspired, specially so they can donate too.</div>
<div class="reply">
<a class="comment-reply-link" href="http://goodmenproject.com/featured-content/one-minute-at-a-time/?replytocom=43217#respond">Reply</a> </div>
<ul class="children">
<li class="comment odd alt depth-2" id="comment-43228">
<div class="comment-author vcard">
<img alt="" class="avatar avatar-48 photo" height="48" src="http://1.gravatar.com/avatar/7176838bf393818e0de4c96acb640047?s=48&d=http%3A%2F%2F1.gravatar.com%2Favatar%2Fad516503a11cd5ca435acc9bb6523536%3Fs%3D48&r=R" width="48" /> <cite class="fn">Kirsten (in MT)</cite> <span class="says">says:</span> </div>
<div class="comment-meta commentmetadata">
<a href="http://goodmenproject.com/featured-content/one-minute-at-a-time/comment-page-1/#comment-43228">August 19, 2011 at 10:19 am</a>
</div>
<div class="comment-content">
<img alt="Thumb up" id="up-43228" src="http://dcgn0mrmiumxb.cloudfront.net/wp-content/plugins/comment-rating/images/1_16_up.png" style="border: none; cursor: pointer; padding: 0px;" title="Thumb up" /> <span id="karma-43228-up" style="color: #009933; font-size: 12px;">0</span> <img alt="Thumb down" id="down-43228" src="http://dcgn0mrmiumxb.cloudfront.net/wp-content/plugins/comment-rating/images/1_16_down.png" style="border: none; cursor: pointer; padding: 0px;" title="Thumb down" /> <span id="karma-43228-down" style="color: #990033; font-size: 12px;">0</span><br />
Thank you, Iris. I think the links have been fixed now.</div>
<div class="reply">
<a class="comment-reply-link" href="http://goodmenproject.com/featured-content/one-minute-at-a-time/?replytocom=43228#respond">Reply</a> </div>
</li>
<li class="comment even depth-2" id="comment-43335">
<div class="comment-author vcard">
<img alt="" class="avatar avatar-48 photo" height="48" src="http://0.gravatar.com/avatar/27d75e9c4c33e2a10d61eab1cfe316e3?s=48&d=http%3A%2F%2F0.gravatar.com%2Favatar%2Fad516503a11cd5ca435acc9bb6523536%3Fs%3D48&r=R" width="48" /> <cite class="fn">Chrysti Gilbreth</cite> <span class="says">says:</span> </div>
<div class="comment-meta commentmetadata">
<a href="http://goodmenproject.com/featured-content/one-minute-at-a-time/comment-page-1/#comment-43335">August 19, 2011 at 10:53 pm</a>
</div>
<div class="comment-content">
<img alt="Thumb up" id="up-43335" src="http://dcgn0mrmiumxb.cloudfront.net/wp-content/plugins/comment-rating/images/1_16_up.png" style="border: none; cursor: pointer; padding: 0px;" title="Thumb up" /> <span id="karma-43335-up" style="color: #009933; font-size: 12px;">0</span> <img alt="Thumb down" id="down-43335" src="http://dcgn0mrmiumxb.cloudfront.net/wp-content/plugins/comment-rating/images/1_16_down.png" style="border: none; cursor: pointer; padding: 0px;" title="Thumb down" /> <span id="karma-43335-down" style="color: #990033; font-size: 12px;">0</span><br />
Iris,<br />
Steven and Rachel have been dear friends for many years. Thanks for
taking the time to read their story. What amazes me is that this is
only a fraction of their story.<br />
Again, thanks for your kindness!<br />
Chrysti</div>
<div class="reply">
<a class="comment-reply-link" href="http://goodmenproject.com/featured-content/one-minute-at-a-time/?replytocom=43335#respond">Reply</a> </div>
</li>
</ul>
</li>
<li class="comment odd alt thread-odd thread-alt depth-1" id="comment-43220">
<div class="comment-author vcard">
<img alt="" class="avatar avatar-48 photo" height="48" src="http://0.gravatar.com/avatar/2379de52da284865e0215f5e5dd758f7?s=48&d=http%3A%2F%2F0.gravatar.com%2Favatar%2Fad516503a11cd5ca435acc9bb6523536%3Fs%3D48&r=R" width="48" /> <cite class="fn"><a class="url" href="http://daddyfiles.com/" rel="external nofollow">Daddy Files</a></cite> <span class="says">says:</span> </div>
<div class="comment-meta commentmetadata">
<a href="http://goodmenproject.com/featured-content/one-minute-at-a-time/comment-page-1/#comment-43220">August 19, 2011 at 9:08 am</a>
</div>
<div class="comment-content">
<img alt="Thumb up" id="up-43220" src="http://dcgn0mrmiumxb.cloudfront.net/wp-content/plugins/comment-rating/images/1_16_up.png" style="border: none; cursor: pointer; padding: 0px;" title="Thumb up" /> <span id="karma-43220-up" style="color: #009933; font-size: 12px;">1</span> <img alt="Thumb down" id="down-43220" src="http://dcgn0mrmiumxb.cloudfront.net/wp-content/plugins/comment-rating/images/1_16_down.png" style="border: none; cursor: pointer; padding: 0px;" title="Thumb down" /> <span id="karma-43220-down" style="color: #990033; font-size: 12px;">0</span><br />
Man…sometimes there are no words.</div>
<div class="reply">
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<li class="comment even thread-even depth-1" id="comment-43237">
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<img alt="" class="avatar avatar-48 photo" height="48" src="http://1.gravatar.com/avatar/9efc2561b2f2e55bc080c397b6644ade?s=48&d=http%3A%2F%2F1.gravatar.com%2Favatar%2Fad516503a11cd5ca435acc9bb6523536%3Fs%3D48&r=R" width="48" /> <cite class="fn">Andrew</cite> <span class="says">says:</span> </div>
<div class="comment-meta commentmetadata">
<a href="http://goodmenproject.com/featured-content/one-minute-at-a-time/comment-page-1/#comment-43237">August 19, 2011 at 11:08 am</a>
</div>
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<img alt="Thumb up" id="up-43237" src="http://dcgn0mrmiumxb.cloudfront.net/wp-content/plugins/comment-rating/images/1_16_up.png" style="border: none; cursor: pointer; padding: 0px;" title="Thumb up" /> <span id="karma-43237-up" style="color: #009933; font-size: 12px;">0</span> <img alt="Thumb down" id="down-43237" src="http://dcgn0mrmiumxb.cloudfront.net/wp-content/plugins/comment-rating/images/1_16_down.png" style="border: none; cursor: pointer; padding: 0px;" title="Thumb down" /> <span id="karma-43237-down" style="color: #990033; font-size: 12px;">0</span><br />
Speaking
as someone who is personally acquainted and peripherally involved with
Steven and Rachel, I can only confirm what Kirsten says: “Know that what
you read here barely scratches the surface.”<br />
Thank you for writing this.</div>
<div class="reply">
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<li class="comment odd alt thread-odd thread-alt depth-1" id="comment-43249">
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<img alt="" class="avatar avatar-48 photo" height="48" src="http://0.gravatar.com/avatar/615f2fb0094b6a53eb43bb6ad2b18df2?s=48&d=http%3A%2F%2F0.gravatar.com%2Favatar%2Fad516503a11cd5ca435acc9bb6523536%3Fs%3D48&r=R" width="48" /> <cite class="fn"><a class="url" href="http://breathingcompanions.blogspot.com/" rel="external nofollow">Steven Phillips</a></cite> <span class="says">says:</span> </div>
<div class="comment-meta commentmetadata">
<a href="http://goodmenproject.com/featured-content/one-minute-at-a-time/comment-page-1/#comment-43249">August 19, 2011 at 12:14 pm</a>
</div>
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<img alt="Thumb up" id="up-43249" src="http://dcgn0mrmiumxb.cloudfront.net/wp-content/plugins/comment-rating/images/1_16_gray_up.png" style="border: none; margin: 0px; padding: 0px;" /> <span id="karma-43249-up" style="color: #009933; font-size: 12px;">3</span> <img alt="Thumb down" id="down-43249" src="http://dcgn0mrmiumxb.cloudfront.net/wp-content/plugins/comment-rating/images/1_16_gray_down.png" style="border: none; margin: 0px; padding: 0px;" /> <span id="karma-43249-down" style="color: #990033; font-size: 12px;">0</span><br />
I
must confess as I read this, I almost felt like, “Who is this guy they
are talking about?” I’m no hero. Just trying to put one foot in front
of the other and love the girl of my dreams the best way I know how.
Rachel is 24 years younger than me and a former ballet dancer who was
once with the Royal Ballet in London. She’s only 34 now and it is
heartbreaking to watch her this physically devastated. Thanks for
posting the story. (If people want to know more they can go to <a href="http://breathingcompanions.blogspot.com/" rel="nofollow">http://breathingcompanions.blogspot.com</a>)</div>
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<img alt="" class="avatar avatar-48 photo" height="48" src="http://0.gravatar.com/avatar/a97dd313684164c92c567166311b92ec?s=48&d=http%3A%2F%2F0.gravatar.com%2Favatar%2Fad516503a11cd5ca435acc9bb6523536%3Fs%3D48&r=R" width="48" /> <cite class="fn">William Hurst</cite> <span class="says">says:</span> </div>
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<a href="http://goodmenproject.com/featured-content/one-minute-at-a-time/comment-page-1/#comment-43300">August 19, 2011 at 6:16 pm</a>
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<img alt="Thumb up" id="up-43300" src="http://dcgn0mrmiumxb.cloudfront.net/wp-content/plugins/comment-rating/images/1_16_up.png" style="border: none; cursor: pointer; padding: 0px;" title="Thumb up" /> <span id="karma-43300-up" style="color: #009933; font-size: 12px;">0</span> <img alt="Thumb down" id="down-43300" src="http://dcgn0mrmiumxb.cloudfront.net/wp-content/plugins/comment-rating/images/1_16_down.png" style="border: none; cursor: pointer; padding: 0px;" title="Thumb down" /> <span id="karma-43300-down" style="color: #990033; font-size: 12px;">0</span><br />
I
have known Steve and Rachel for over ten years. I have followed their
lives closely over the years, having visited with them personally before
this began and talked with Steven on the phone. Every bit of what
Kristen has gathered is true, and she is right, “it hardly scratches the
surface. Please help them in this battle with support, both financially
and dropping Steve a line of encouragement from time to time. I love
these guys!</div>
<div class="reply">
<a class="comment-reply-link" href="http://goodmenproject.com/featured-content/one-minute-at-a-time/?replytocom=43300#respond">Reply</a> </div>
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<img alt="" class="avatar avatar-48 photo" height="48" src="http://1.gravatar.com/avatar/98d93fd4feabfc95263339b001fd03af?s=48&d=http%3A%2F%2F1.gravatar.com%2Favatar%2Fad516503a11cd5ca435acc9bb6523536%3Fs%3D48&r=R" width="48" /> <cite class="fn">Eleanore Hurst</cite> <span class="says">says:</span> </div>
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<a href="http://goodmenproject.com/featured-content/one-minute-at-a-time/comment-page-1/#comment-43301">August 19, 2011 at 6:46 pm</a>
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<img alt="Thumb up" id="up-43301" src="http://dcgn0mrmiumxb.cloudfront.net/wp-content/plugins/comment-rating/images/1_16_up.png" style="border: none; cursor: pointer; padding: 0px;" title="Thumb up" /> <span id="karma-43301-up" style="color: #009933; font-size: 12px;">0</span> <img alt="Thumb down" id="down-43301" src="http://dcgn0mrmiumxb.cloudfront.net/wp-content/plugins/comment-rating/images/1_16_down.png" style="border: none; cursor: pointer; padding: 0px;" title="Thumb down" /> <span id="karma-43301-down" style="color: #990033; font-size: 12px;">0</span><br />
I’m
so thankful that Jesus is the great intercessor. Rachel and Steve your
name is continually 24/7 before the throne. We love you. :’(</div>
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<a class="comment-reply-link" href="http://goodmenproject.com/featured-content/one-minute-at-a-time/?replytocom=43301#respond">Reply</a> </div>
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<i>If you'd like to see the original link, you can access it here: <a href="http://goodmenproject.com/featured-content/one-minute-at-a-time/">GoodMenProject.com - Steven Phillips</a></i>Anonymoushttp://www.blogger.com/profile/08061954435357100481noreply@blogger.com0tag:blogger.com,1999:blog-4016247516138085339.post-89283877762625885722011-07-28T22:19:00.002-04:002011-07-28T22:19:43.492-04:00A Compelling Story<div class="ii gt" id=":xw">
<div id=":yd">
<div style="margin-bottom: 0in;">
To Whom It May
Concern,<br /><br />I have what I believe will be a story of interest to
you and your public. A few weeks ago, international news media
carried a story concerning the the first synthetic organ tissue
transplant performed by Dr Paolo Macchiarini (see <a href="http://www.karolinska.se/en/OM/press-nyheter/nyhetslista/First-Successful-Transplantation-of-a-Synthetic-Tissue-Engineered-Windpipe-/" target="_blank"><em>First</em>
Successful <em>Transplantation</em> of a <em>Synthetic</em> Tissue
Engineered</a>).</div>
<div style="margin-bottom: 0in;">
<br />
</div>
<div style="margin-bottom: 0in;">
<em><span style="color: #0047ff;"><span style="font-style: normal;"><u>Dr.
Macchiarini </u></span></span></em>is a newly appointed Professor of
Regenerative Surgery at the Karolinska Institute in Stockholm, Sweden
and also works in Florence, Italy and Barcelona, Spain. He performed
the historic surgery last month in Stockholm transplanting a trachea
which had been grown on a bio-synthetic matrix using the patient's
own stem cells. Macchiarini and his team have performed ten
such operations in the past two years using stem cell regeneration,
but all previous operations have used a matrix or "scaffold"
from a human donor. The successful medical breakthrough of the
use of a bio-synthetic matrix means that not only will doctors in the
near future be able to reconstruct ailing body parts using the
patient's own stem cells, and thereby greatly reducing the
possibility of rejection of the transplanted tissue, but they will
also be able to precisely construct those parts using a computer to
create a matrix that will exactly match the structure of the
patient's original tissue.<br /> <br />Dr Macchiarini is in Burlington,
Vermont this week speaking at a conference on Regenerative Medicine
at the University of Vermont. However, most people are not aware that
a part of the reason for his visit was to evaluate my wife, Rachel
Phillips, a Burlington resident, for this surgery. Rachel is 34 years
old and a former dancer with the Royal Ballet of London. She also
danced at the Kirov in Russia, the Nashville Ballet, Ballet West in
Salt Lake City, Utah and other dance companies both here and abroad.
Rachel and I moved to Vermont originally to start a performing arts
school. Unfortunately she developed a serious medical condition that
has caused her to put her life on hold for the past several years.
Her airways are failing from severe tracheobronchomalasia (TBM), a
condition that causes trachea and bronchial airways to collapse. The
underlying condition that brought about this problem in her case was
Elhers-Danlos Syndrome (EDS) - a genetic, connective tissue disorder
that affects the collagen in the body.
</div>
<div style="margin-bottom: 0in;">
<br />
</div>
<div style="margin-bottom: 0in;">
Over the past two years, doctors have
tried numerous surgeries, tests, and other procedures - including
over 30 bronchoscopies in the past twelve months alone - in an
attempt to try to find a solution for her. However, recent test have
verified that she is currently collapsing approximately 90% on normal
exhalation - a condition which requires her to wear a special,
portable CPAP unit with oxygen support to be able to keep her O2
levels acceptable. She also has a special service dog, named Siena, a
four year old Labradoodle who is specially trained to detect, by
scent, a decline in her O2 levels and warn her when they fall below
acceptable limits. Last fall, Rachel had a tracheobronchoplasty
surgery in Boston to try to hold her airways open using a surgical
mesh to strengthen the back of the tissue. However the procedure has
proved unsuccessful.</div>
<div style="margin-bottom: 0in;">
<br />
</div>
<div style="margin-bottom: 0in;">
Last month we met with <a href="http://www.caritaschristi.org/doctorfinder/Ernst_Armin" target="_blank"><em>Armin
Ernst</em>, <em>MD</em> - Caritas Christi Health Care</a> in Boston,
MA who has been advising us on the case for over a year now. After
his bronchoscopy and review, we were told that there were no other
options that they could offer us in the US and that the collapse has
rapidly worsened since the operation last fall. Dr. Ernst
recommended that we contact Dr. Macchiarini to seriously consider the
regenerative transplant option.</div>
<div style="margin-bottom: 0in;">
<br />We initially met with one of Dr.
Macchiarini's associates who was in Burlington, Vermont last month
for a review of her case. At that time we were told that they would
likely be able to offer the surgery to us, pending additional tests
and a final review of the case. Earlier this week, we met with Dr.
Macchiarini at Fletcher Allen Medical Center in Burlington, Vermont
for an extensive evaluation of her condition, including, yet another
bronchoscopy. After looking at the results, Paolo offered to take
our case and is currently preparing the paperwork to allow him to
operate on Rachel to attempt to repair the failed surgery. He will be
taking stem cells from Rachel to grow a bio-synthetic airway
replacement to be able to transplant immediately if the surgical
repair is unable to correct the situation. We were also told that we
have exhausted all other options and, without the surgery, Rachel
will die from the condition. The extent of the collapse has
progressed so rapidly that waiting as much as a year is no longer an
option.
</div>
<div style="margin-bottom: 0in;">
<br />
</div>
<div style="margin-bottom: 0in;">
Dr. Macchiarini is making tentative
plans to do the surgery sometime in October. At this time, it is
uncertain if the procedure will be done in Europe or here in the US,
which may be more problematic than the European option due to
regulatory issues. My wife and I are currently in the process of
trying to find funding options to offset the costs of the procedure
which, we are told could run up to $300,000.00, not including our
cost for an extended potential stay oversees for the procedure and
recovery period, if it cannot be done in the States. This is in spite
of the fact that Dr. Macchiarini has offered t do his part at no cost
to us. None the less, the financial issues represent a huge mountain
for us to climb.<br /><br />Macchiarini is also an outspoken advocate of
health care reform. He told us he believes it to be “criminal”
for patients in the US to have viable lifesaving treatment options
which are not available to them due to the lack of funds. On this
subject he brings his considerable expertise to bear in very
practical terms. He quickly compared for us the on going cost of over
30 bronchoscopies and numerous hospitalizations that could be more
than offset, in Rachel's case, if stem cell regenerative surgery
could resolve the problem. When you add the additional costs of
numerous Emergency Room visits, and several extended stays in the
Intensive Care Unit, to say nothing of the medications and ongoing
visits to our primary care physician and other specialists, it is
easy to see what the potential saving could be.<br /><br />Dr. Dan Weiss
(<a href="http://www.med.uvm.edu/vermontlung/do_all_links.asp?SiteAreaID=580" target="_blank"><em>UVM</em>
College of Medicine</a>) is our pulmonologist in Burlington. He is
involved in stem cell research at the University of Vermont and was
instrumental in bringing Macchiarini to the Regenerative Medicine
conference. Dr. Weiss is the person responsible for putting us in
contact with Dr. Macchiarini over a year ago. Together with our
primary care physician, Dr. Anne Knott (see <em><a href="http://www.google.com/url?sa=t&source=web&cd=4&ved=0CC4QFjAD&url=http%3A%2F%2Fmaps.google.com%2Fmaps%2Fplace%3Fhl%3Den%26client%3Dfirefox-a%26hs%3DfU7%26rls%3Dorg.mozilla%3Aen-US%3Aofficial%26bav%3Don.2%2Cor.r_gc.r_pw.%26biw%3D1440%26bih%3D781%26um%3D1%26ie%3DUTF-8%26q%3Danne%2Bknott%2Bwinooski%2Bfamily%2Bhealth%2Bgoogle%2Bratings%26fb%3D1%26gl%3Dus%26hq%3Danne%2Bknott%2Bwinooski%2Bfamily%2Bhealth%2Bgoogle%2Bratings%26hnear%3D0x4cca7a55b69b55e5%3A0xc35fe519720e498e%2CBurlington%2C%2BVT%26cid%3D6525965145327842459&rct=j&q=anne%20knott%20winooski%20family%20health%20google%20ratings&ei=SjYwTpbMJcaKtgeGqMDfBw&usg=AFQjCNGuJQJlrxIkr_s1f35VqlWs-3DHpg&cad=rja" target="_blank">Winooski
Family Health</a>),</em> the two doctors have given selflessly of
their time over the past two and a half years to advocate for Rachel.
For example, Dr. Weiss has been present at all of the more than 30
bronchoscopies performed on Rachel, even though another physician
performed the procedure. He has done this without regard to the fact
that these are “un-billable” hours simply to keep himself
apprised of her situation and to reassure her that someone is keeping
tabs on her case. Dr, Knott has advocated with doctors, clinics and
hospitals here, in Boston, in Maryland, and in the Washington, D.C.
area to help find viable treatment options for us. The endless forms
these doctors and their staff members have had to complete for us and
dozens of phone consultations that they have made have not been
something they could bill to our insurance. But without their
tireless support, none of this would have been possible nor would we
have had the current opportunity with Dr. Macchiarini.<br /><br />It is
our understanding that ABC News has expressed interest in doing a
documentary if Dr. Macchiarini does, in fact, choose an American for
the new surgical procedure. For this reason e specifically gave us
permission to discuss our case with the news media.
</div>
<div style="margin-bottom: 0in;">
<br />
</div>
<div style="margin-bottom: 0in;">
It was my thinking that, given the the
fact that this represents an American and a resident of Vermont who
was being evaluated for this ground breaking medical procedure within
weeks of the first transplant hitting the news, you would doubtless
appreciate the local and perhaps national news interest in such a
story. In addition, the fact that it also involves stem cell research
being done in the US, the fact that the patient is a former London
Royal Ballet dancer, the fact that she has a special trained "O2
Sniffing" service dog to assist her, etc., there would be
numerous additional reasons this story would be compelling to your
audience. Should you or your staff wish to be in contact us and/or
Dr. Macchiarini you can reach us at this email address,
<a href="mailto:LifeReInspired@gmail.com" target="_blank">LifeReInspired@gmail.com</a>
or by phone at <a href="tel:802-735-2211" target="_blank">802-735-221</a>1
or by cell phone at <a href="tel:802-503-1211" target="_blank" value="+18025031211">802-503-1211</a>.
</div>
<div style="margin-bottom: 0in;">
<br />
</div>
<div style="margin-bottom: 0in;">
For photos of Rachel at the Royal
Ballet as well as several pictures showing the service dog and
Rachel's current condition please visit:
<a href="https://picasaweb.google.com/100732066417136046779/PressPhotos?authuser=0&feat=directlink" target="_blank">https://picasaweb.google.com/<wbr></wbr>100732066417136046779/<wbr></wbr>PressPhotos?authuser=0&feat=<wbr></wbr>directlink</a>.
</div>
<div style="margin-bottom: 0in;">
<br />
</div>
<div style="margin-bottom: 0in;">
For a brief clip about the story done
on our local ABC TV station please visit:
<a href="http://www.abc22.com/story/15160790/burlington?autoStart=true&topVideoCatNo=default&clipId=6094665" target="_blank">http://www.abc22.com/story/<wbr></wbr>15160790/burlington?autoStart=<wbr></wbr>true&topVideoCatNo=default&<wbr></wbr>clipId=6094665</a><br />
<br />Thank
you for your consideration. <br />Very Truly Yours,<br /><br />Steven and
Rachel Phillips
</div>
</div>
</div>
Anonymoushttp://www.blogger.com/profile/08061954435357100481noreply@blogger.com1tag:blogger.com,1999:blog-4016247516138085339.post-27868568728498348892011-07-27T23:45:00.000-04:002011-07-27T23:45:18.083-04:00On the NewsPaolo Macchiarini recommended that we get our story out to the media so that we can find a way to pay for the surgery. Here's the video from our first TV news story:<br />
<br />
<script src="http://www.abc22.com/global/video/videoplayer.js?rnd=155422;hostDomain=www.abc22.com;playerWidth=630;playerHeight=355;isShowIcon=true;clipId=6094665;flvUri=;partnerclipid=;adTag=News;advertisingZone=;enableAds=true;landingPage=;islandingPageoverride=false;playerType=STANDARD_EMBEDDEDscript;controlsType=overlay" type="text/javascript">
</script> <br />
<br />
<script src="http://www.abc22.com/global/video/videoplayer.js?rnd=155422;hostDomain=www.abc22.com;playerWidth=630;playerHeight=355;isShowIcon=true;clipId=6094665;flvUri=;partnerclipid=;adTag=News;advertisingZone=;enableAds=true;landingPage=;islandingPageoverride=false;playerType=STANDARD_EMBEDDEDscript;controlsType=overlay" type="text/javascript">
</script><br />
<br />
<br />
<br />
<br />Anonymoushttp://www.blogger.com/profile/08061954435357100481noreply@blogger.com0tag:blogger.com,1999:blog-4016247516138085339.post-17198073150984642612011-07-24T02:53:00.000-04:002011-07-24T02:53:07.461-04:00Reality check through a fogI'm on the official countdown now until I see Dan and Paolo. In a little less than 30 hours Steven and I will be sitting talking with them, finding out the particulars of the surgery, finding if he'll take me as a patient. I just had to write a little tonight because the feelings you have before something like this are never easy to remember after the fact. Usually, clarity comes in once you have clarity and answers the misty fog that previously encompassed you is hard to remember. I have this feeling that it won't be exactly like I expect - and that looking back, it will make perfect sense and seem as if the meeting when exactly as it should and exactly as I should have expected. I was looking through some writing from our trip to Maryland back in January and it was just like that. My only worry is that I am putting too much hope in this meeting, and that my expectations are too high. I pray it isn't so, but anything that would devastate me would definitely rock the boat of my psyche right now.<br />
<br />
There are so many things I wonder. I wonder if Paolo will take my case, I wonder if he can grow a large enough segment of my airways to eradicate the effects of the collapse, I wonder if the surgery I had in September will somehow mess up my chances for this. I wonder how we will get to Sweden, I wonder where we'll stay where there, I wonder how soon this will happen, or how long I'll have to wait. I wonder if I can make it that long. I wonder who will keep my service dog, I wonder if we'll have access to the funds we need to pay for all of this. I wonder what they'll do with my trachea, the one they'd be taking out, can they carry out research on it and find out what caused this terrible problem? Can my geneticist be in on that research? Will I be able to help others if I go through with the surgery? I wonder how Steven will manage this. Alone in a foreign country, his wife in the hospital for numerous weeks. No friends to visit, no family around, not even our beloved Sia. How lonely that will be.I wonder if all of it the transplant. Steven and I had to have the uncomfortable conversation tonight about what he would do with my body if I die Sweden. Could we afford to bring me home? These are the questions that play in my mind, that plague my mind at all hours of the day and night.<br />
<br />
Sometimes I get moments of clarity where realize the true gravity of my health situation and how fragile, and precarious life i has become. I had one of those moments today and my eyes were opened to the stark reality that I could die, and that really, death is only a few moments away from me at any given time. I'm not particularly frightened of the thought, though asphyxiation was never high on my list of ways I'd like to die. I wonder with the moment is like when your consciousness leaves this earth and moves to another place. I wonder what you do and don't feel, physically and emotionally. I imagine it is a peaceful event emotionally, though I always wonder about the physical pain. Billions of people before me have experienced this and it certainly nothing new. But I don't know how many people are in a situation where these unanswered questions are always so visible. I really don't worry about me, but I do worry about Steven, a lot. We've been through so much together, to be together, to have a life together. I don't think he'll easily face a life on his own.<br />
<br />
Today has been a hard day. It was clear to me that I am never quite good enough for certain people in my life (no, not Steven). I've realized how many times I've been dropped by family and close friends because I didn't meet their expectations which again says to me, I'm still not good enough. I feel like a leper, outcast, spurned by those who tell me they love me. What does it take to get people to stay around? How do you cope with being abandoned multiple times? How do you manage to have any belief in yourself when you're told that genetic health conditions are your fault? I didn't get to vote on whether or not I got this disease. I didn't get asked whether or not I'd like it. I didn't get asked if I'd be willing to have our lives shaped around. But instead, it was forced upon me, something I've had to fight and deal with this since I was a small child. Something that would cause me health problems and pain that people would dismiss. I was ignored and left to fend for myself, and then abandoned by my family.<br />
<br />
But then I wonder what it would be like to breathe unfettered. It's daunting to think of going through transplant surgery only to come back to constant headache pain, dislocations, subluxations, and constant pain in my limbs, back, joints. I wonder if solving the breathing problem will help these other issues at all, or if they will be things I will contend with for years to come. I wonder if I'd be free of carrying oxygen, free of my respirator. I wonder if I'll be able to ride my bike, camp, or go to Prince Edward Island like we've always dreamed of. I wonder if we'll keep the people in our lives right now, or if this will become too much for them as well. "A friend is made for the time of adversity." I guess that puts our list of friends is rather short. But it makes me realize the importance of having people in your life that are true friends, through good times and bad, through fun, pain, despair, levity. A few true are worth thousands of those who love to be around in fair weather but who run at the first sign of a dark cloud.<br />
<br />
I'm probably rambling on now about philosophical gibberish, but these things are incredibly important to me as I face the challenges ahead. Monday is not the end of a road ( unless Paolo refuses my case altogether), but the beginning of a long and uncertain journey. I hope and pray that somehow I'll be able to help others as I go through this and come out on the other side. Though the limitations that have been forced upon me because of my health are extreme, I still have dreams of helping make the world a better place. And that's with th at hope in my heart that I count down to Monday morning.Anonymoushttp://www.blogger.com/profile/08061954435357100481noreply@blogger.com0tag:blogger.com,1999:blog-4016247516138085339.post-91505312972910397012011-07-22T22:36:00.014-04:002011-07-23T01:41:16.397-04:00College of Medicine: University of Vermont<div>
<span class="Apple-style-span" style="font-family: inherit; line-height: 14px;">Dr. M. and his trip to VT. I'll see him Monday morning before his presentation at Noon. :) Literally counting down now!</span><br />
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<span class="Apple-style-span" style="font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 11px; line-height: 14px;">Regenerative Medicine Expert to Discuss Airway Surgery Advances</span></h3>
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<span class="Apple-style-span" style="font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 11px; line-height: 14px;">Paolo Macchiarini, M.D., Ph.D., a professor of regenerative surgery, director of the Advanced Center of Translational Regenerative Medicine, and director of the European Air Institute at Karolinska Institute in Stockholm, Sweden, led the groundbreaking team that transplanted the first synthetic, laboratory-grown windpipe in June 2011.</span></div>
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<span class="Apple-style-span" style="font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 11px; line-height: 14px;">Surgeon Paolo Macchiarini, M.D., Ph.D., leader of the groundbreaking Stockholm, Sweden-based team that transplanted the first synthetic, laboratory-grown windpipe in a tracheal cancer patient in June 2011, will present a lecture hosted by the University of Vermont College of Medicine at noon on Monday, July 25, 2011. A professor of regenerative surgery, director of the Advanced Center of Translational Regenerative Medicine, and director of the European Air Institute at Karolinska Institute, Macchiarini will discuss “Advances in Airway Surgery” in Davis Auditorium in the Medical Education Center on Level Two of Fletcher Allen Health Care’s Ambulatory Care Center. </span></div>
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<a href="http://www.uvm.edu/medicine/?Page=news&storyID=12170&category=comall">College of Medicine Home : University of Vermont</a>Anonymoushttp://www.blogger.com/profile/08061954435357100481noreply@blogger.com0tag:blogger.com,1999:blog-4016247516138085339.post-23083469174846605262011-07-22T02:15:00.002-04:002011-07-23T01:11:59.694-04:00<div style="font-family: inherit;">
<span class="Apple-style-span" style="font-size: small; line-height: 14px;">"There is a crack in everything. That's how the light gets in." -L. Cohen, "Anthem."</span></div>
Anonymoushttp://www.blogger.com/profile/08061954435357100481noreply@blogger.com0tag:blogger.com,1999:blog-4016247516138085339.post-74136657476990976162011-07-13T22:42:00.002-04:002011-07-23T01:11:46.107-04:00<div style="font-family: inherit;">
<span class="Apple-style-span" style="font-size: small; line-height: 14px;">I want to scream right now. I really do. But I can't because my airways collapse. I can barely breathe because my genetic disorder airway collapse is causing me to slowly die, unless I get an experimental airway transplant. And someone just wrote me to tell me...it's my fault. Thanks for the encouragement. (I'm leaving off your name to spare you the embarrassment.)</span></div>
Anonymoushttp://www.blogger.com/profile/08061954435357100481noreply@blogger.com0tag:blogger.com,1999:blog-4016247516138085339.post-44328295650623791492011-07-08T20:43:00.002-04:002011-07-23T01:11:21.482-04:00<div style="font-family: inherit;"><span class="Apple-style-span" style="background-color: none; font-size: small; line-height: 14px;">Check this out, it's what <a data-hovercard="/ajax/hovercard/user.php?id=1163461274" href="http://www.facebook.com/drstevenphillips" style="color: #3b5998; cursor: pointer; text-decoration: none;">Steven Phillips</a> and I have been talking about. Please keep your fingers crossed and prayers and energy coming our way. I see Dr. Paolo Macchiarini when he's in VT at the end of the month.</span></div><span class="Apple-style-span" style="background-color: white; font-family: 'lucida grande',tahoma,verdana,arial,sans-serif; font-size: 11px; line-height: 14px;"><br />
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<span class="Apple-style-span" style="background-color: white; font-family: 'lucida grande',tahoma,verdana,arial,sans-serif; font-size: 11px; line-height: 14px;"><span class="Apple-style-span" style="color: #333333; line-height: normal;"><a aria-hidden="true" class="external UIImageBlock_Image UIImageBlock_MED_Image" data-ft="{"type":41}" href="http://www.latimes.com/health/la-he-trachea-qanda-20110709,0,3475562.story" rel="nofollow" style="color: #3b5998; cursor: pointer; float: left; margin-right: 10px; text-decoration: underline;" target="_blank" title=""><img alt="" class="img quimby_search_image" src="http://external.ak.fbcdn.net/safe_image.php?d=AQAsf1bZVWJD03AN&w=90&h=90&url=http%3A%2F%2Fwww.latimes.com%2Fmedia%2Fthumbnails%2Fstory%2F2011-07%2F63103177-08153243.jpg" style="border-bottom-width: 0px; border-color: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; display: block; max-height: 90px; max-width: 90px;" /></a></span></span><br />
<div class="UIImageBlock_Content UIImageBlock_MED_Content fsm fwn fcg" style="color: grey; display: table-cell; font-size: 11px; vertical-align: top; width: 10000px;"><div class="uiAttachmentTitle" data-ft="{"type":11}" style="color: #333333; word-wrap: break-word;"><b><a href="http://www.latimes.com/health/la-he-trachea-qanda-20110709,0,3475562.story" rel="nofollow" style="color: #3b5998; cursor: pointer; text-decoration: none;" target="_blank">Making a trachea from scratch</a></b></div><span class="caption"><a href="http://www.latimes.com/" rel="nofollow" style="color: #3b5998; cursor: pointer; text-decoration: none;" target="_blank">www.latimes.com</a></span><br />
<div class="mts uiAttachmentDesc" style="color: grey; margin-top: 5px; word-wrap: break-word;">Andemariam Teklesenbet Beyene left a Stockholm hospital Friday, breathing through a man-made trachea that was built with his own stem cells.</div></div>Anonymoushttp://www.blogger.com/profile/08061954435357100481noreply@blogger.com0tag:blogger.com,1999:blog-4016247516138085339.post-50426292006195986842011-07-02T15:25:00.001-04:002011-07-23T01:12:25.371-04:00<div style="font-family: inherit;"><span class="Apple-style-span" style="background-color: none; font-size: small; line-height: 14px;">Summer has finally arrived & I can't complain since it's the July 4th weekend & if it didn't get here soon, we were gonna miss it! Having said that though, it's giving me A LOT of breathing trouble. Thank goodness for my amazing, can-do-anything husband <a data-hovercard="/ajax/hovercard/user.php?id=1163461274" href="http://www.facebook.com/drstevenphillips" style="color: #3b5998; cursor: pointer; text-decoration: none;">Steven Phillips</a> who's hooking up A/C for me (& thanks to my dr for prescribing it!).</span></div>Anonymoushttp://www.blogger.com/profile/08061954435357100481noreply@blogger.com0tag:blogger.com,1999:blog-4016247516138085339.post-89328319290691802152011-07-01T17:19:00.000-04:002011-07-23T01:21:58.488-04:00<div style="font-family: inherit;">
<span class="Apple-style-span" style="font-size: small; line-height: 14px;">Happy July 1! We're almost to the biggest holiday of the summer, days are already getting shorter, the swamp maples will start turning by the end of the month, we're more than halfway to Christmas, and only 25 days till I see the transplant surgeon from Europe! Where the heck has this year gone?!?!</span></div>
Anonymoushttp://www.blogger.com/profile/08061954435357100481noreply@blogger.com0tag:blogger.com,1999:blog-4016247516138085339.post-2091409596364616762011-06-30T10:22:00.001-04:002011-07-23T01:13:16.206-04:00<div style="font-family: inherit;"><span class="Apple-style-span" style="background-color: none; font-size: small; line-height: 14px;">Another drs appt then get to see my amazing Sis <a data-hovercard="/ajax/hovercard/user.php?id=1132119281" href="http://www.facebook.com/yennivieve" style="color: #3b5998; cursor: pointer; text-decoration: none;">Jenni Demont</a>!! Soooo excited to hang out with her. :) Gonna be a low key, o2 filled afternoon.</span></div>Anonymoushttp://www.blogger.com/profile/08061954435357100481noreply@blogger.com0tag:blogger.com,1999:blog-4016247516138085339.post-55374391935600156832011-06-25T17:06:00.001-04:002011-07-23T01:13:45.192-04:00<div style="font-family: inherit;"><span class="Apple-style-span" style="background-color: none; font-size: small; line-height: 14px;">I never foresaw having to undergo a transplant to save my life in all the things that I've thought, hoped, or dreamed might happen in my life - and certainly not at my age. One thing I've learned is that most of us take our health for granted, until we're no longer healthy. I'm trying to get my head around the whole idea of a transplant but I'm not sure how you really prepare yourself for something like that.</span></div>Anonymoushttp://www.blogger.com/profile/08061954435357100481noreply@blogger.com0tag:blogger.com,1999:blog-4016247516138085339.post-66857584379271201762011-06-22T22:29:00.001-04:002011-07-23T01:14:14.283-04:00<div style="font-family: inherit;"><span class="Apple-style-span" style="background-color: none; font-size: small; line-height: 14px;">I'm sharing the official report of my recent exploratory bronch from Boston. It's worse than we had thought. Kind of nerve-wracking. You can read the actual report below.</span></div><span class="Apple-style-span" style="background-color: white; font-family: 'lucida grande',tahoma,verdana,arial,sans-serif; font-size: 11px; line-height: 14px;"><br />
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<span class="Apple-style-span" style="font-size: small; line-height: 14px;">Instead of rewriting all that's happened in the past week or so with my health and new info that we've received, I've decided to save my energy and repost what <a data-hovercard="/ajax/hovercard/user.php?id=1163461274" href="http://www.facebook.com/drstevenphillips" style="color: #3b5998; cursor: pointer; text-decoration: none;">Steven Phillips</a> (my husband) wrote as it explains everything as well as it possibly could be. Suffice it to say, it's not been an easy week - or a fun one, and I'm trying to come to terms with what all of this means for my life and my future.</span></div>
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The Update I Didn't Want To Write</h2>
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by <a href="http://www.facebook.com/drstevenphillips" style="color: #3b5998; cursor: pointer; text-decoration: none;">Steven Phillips</a> on Saturday, June 18, 2011 at 2:24pm</div>
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<span style="font-size: small;">Rachel and I have returned from several days in Boston for extensive tests regarding Rachel's medical condition. It has taken a few days for us to be able to process the results we found enough to be able to deal with the information. One of the tests she had was very long exploratory bronchoscopy (the longest out of 28 this year - she was in OR for three hours). When the doctor and his assistant came out to see us, you could tell they were both really visibly shaken. The first thing the doctor said was, "Well, are you ready to head over to Europe to see about the transplant possibilities?" (Dr Ernst is a personal friend of Paolol Macchiarini - the only doctor in the world who has successfully grown a trachea and bronchial branch from a person's stem cells and transplanted it back into the patient.) When we asked, "Why?" he said that, nine months out from the surgery Rachel had in September to place mesh on her airways to help hold them open, there was no evidence whatsoever that she had ever had surgery in terms of how badly her airways are now collapsing. In other words, the surgery was a total failure - Rachel's airways are collapsing as badly now (or worst) than they were before the surgery. This means that all of the surgeries, stent placements, medications, etc. of the past two years have come to nothing. A hard "pill" to swallow!</span></div>
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<span style="font-size: small;">Dr Ernst and his assistant spoke at length with us regarding the lack of other options. The tracheotomy procedure that had been proposed earlier will not work for her because of the extent of the collapse she is having and how far down it collapses in her airways.</span></div>
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<span style="font-size: small;">This is an extremely dangerous position for her to be in because it appears to be, in fact, progressively getting worse given the fact that immediately following the surgery she seemed to have some less collapse. The problem is, if she should get much worse they would have to put her on life support to keep her breathing and then we'd have to figure out if there was some way to get Dr. Macchiarini involved - which would be extremely difficult to do at that time given that his procedure has not yet been given FDA approval in the US. Also it takes several months to grow the new tissue after all of the preparations are in place - meaning the soonest we could hope to have this done is at least six months away. We would probably need to have the airways grown in Italy and the surgery done in Spain (Macchiarino has offices in both places), meaning we would have to be over there for several months and, of course, our insurance would not pay for the procedure or any of the other expenses. We would have to try to get medical emergency grants, "mercy flights" for the tickets, some kind of living arrangements over there while maintaining our place here, somehow, etc., - to say nothing of the fact that we will have to convince Dr. Macchiarini to actually take the case</span></div>
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<span style="font-size: small;">DR. Ernst is now calling Macchiarini to see what they can work out. This means Paolo is now hearing about Rachel's case from both Dr Weiss (our pulmonologist here in Burlington) and Dr. Ernst in Boston. Both of these doctors are on the cutting edge of this technology and personal friends of his, so, we could not have better advocacy.</span></div>
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<span style="font-size: small;">You are probably wondering how we are doing with all of this. Oddly enough, we both had a strange "peace" come over us when we were told the news in Boston. Rachel said that, for one thing, it means she is not crazy or some kind of hypochondriac. She has been telling them that she could still feel the airways collapsing all the time and that it was getting worse as time went on. Obviously, there are the doubts about the "unknown" and the fears that try to grab you when your body is in a serous medical situation.She is still in pain daily from the unrelenting headache that began almost three years ago. She has had a great deal of stress put on her body from the move which was not needed at such a critical time.So her shortness of breath and coughing have become obviously worse.</span></div>
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<span style="font-size: small;">I guess, for me it means some clarity of where we stand. We either need a complete "restorative miracle" or we will need a miracle to get all of the pieces to fall into place for the surgery. Please don't "preach at us" right now about the first option. We know that restorative miracles happen and I have had them happen myself, as well as seen them take place during our ministry. But, at best, they are notably few and far between. Sometimes it is hard when people rush to try to get you to depend upon that option alone when you know that they have never seen one, let alone had to believe for one for themselves.</span></div>
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<span style="font-size: small;">I also don't see Peter asking advice from the guys in the boat when he began to sink when he was walking on the water with Jesus. The fact is, faith is a "gift" and there is only One who can help us to trust Him more. Believe me, we are trusting God, the best way we know how, right now. We'd both be dead by now if we weren't. But we are also amazed at how God has set things up for us, so far. The three pulmonolgists involved in the case are from different sides of the globe, they know each other well, and they have all worked in this technology (DR. Wiess is working on growing a complete set of lungs, the cardiologist Rachel was referred to for another issue turns out to be working with Dr. Wiess to figure out how to hook the new lungs up to a heart when Wiess finally gets it done, Dr Ernst has been a part of regrowing airways and transplanting them into sheep in Boston, Dr Macchiarini has actually done the procedure three time now on humans and... HE IS SCHEDULED TO SEE RACHEL HERE IN BURLINGTON IN A LITTLE OVER A MONTH!!! What "Masters Hand" could have brought all of that together?????)</span></div>
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<span style="font-size: small;">The biggest problem that I face is the fact that my young wife - the love of my life - is suffering and no one knows how to fix it. Having to think about life threatening issues with someone you love is extremely wearing... to say NOTHING about how wearing that is on her! Our lives have diminished... but hopefully so that HE might increase.</span></div>
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<span style="font-size: small;">Last Tuesday, setting in the waiting room down in Boston, the chaplain's assistant came over to speak with me because she had seen me waiting there for so long. As I told her the story, and the fact that this was the 28th time I had sat waiting in a similar situation the past year, I noticed the whole waiting room began listening in. I said that we had found that we had been required to rethink what church/faith/success really meant. I said that, at one point through the past two and a half years, I had become very depressed because I saw my life's work completely dissolved. But then some strange things had been happening. For example, the "blog" that Rachel had put up to sell some of our stuff before the move had received over 19,000 hits in two weeks!!!... and, it was only published in our local area!!! Some people came to our house in tears. ( Rachel had published our story on the blog.) A lot of them didn't buy anything... some of them had driven two hours just to buy a $20 item! They stayed and talked... exchanged email addresses and phone numbers. Some of them talked all evening long with us... most left saying they would be praying for us and many have been in contact with us since! People all over the world are praying for us because of these updates. Now, almost the entire apartment building we are living in has told us they are praying for Rachel after our only being here for a couple of weeks! I told her that, at our lowest point in our ministry work, we find ourselves "ministering" to more people than we ever had before. I said that we had redefined "success" as just being here, now, and just being here with God... MAKING JUST THAT, OK. </span></div>
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<span style="font-size: small;">I said, "All my life I have been looking for a new definition of "church" and now I fine myself living in one that has NOTHING to do with a place or a format... just being in the midst of a collective group of people who are sharing their lives together... The struggles, and the joys, and the tears, and all of it. When I finally stopped talking with her, I noticed several people in the waiting room had been crying. One guy said, "Sir, I would be happy to take care of her service dog (Siena) while you go back into the Recovery Room with Rachel." The chaplain's assistant gripped my hand with tears in her eyes and thanked me for sharing with her. </span></div>
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<span style="font-size: small;">God still seems to be at work in us and through us, through all of this.</span></div>
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<span style="font-size: small;">You may ask, "What do you need?" The answer is, simply, "In many ways, we don't really know, right now." But we know we need friends through the process. Somehow, when we have a need, what needs to happen, happens. You have been a wonderful part of that process many times. Right now, we just need the strength to keep putting one foot in front of the other. The trouble is, we are on a stairway to heaven... and we can only see one step at a time. Until He shows us the next step, we just have to wait and trust. We're trying to not rush ahead of Him or lag behind... but just to be... here... now.</span></div>
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<span style="font-size: small;">Thanks for waiting with us... This stair would be mighty lonely without you.</span></div>
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</span>Anonymoushttp://www.blogger.com/profile/08061954435357100481noreply@blogger.com0tag:blogger.com,1999:blog-4016247516138085339.post-37874134061329397752011-06-02T00:34:00.001-04:002011-07-23T01:20:24.588-04:00<div style="font-family: inherit;"><span class="Apple-style-span" style="font-size: small; line-height: 14px;">Pain, just pain.</span></div>Anonymoushttp://www.blogger.com/profile/08061954435357100481noreply@blogger.com0tag:blogger.com,1999:blog-4016247516138085339.post-33611800998614257902011-05-08T10:37:00.002-04:002011-07-23T01:22:51.721-04:00Mothers Day Thoughts From a Different Perspective<div style="font-family: inherit;"><span class="Apple-style-span" style="background-color: none; font-size: small; line-height: 16px;">Mother's day can be a mix of emotions for many of us. For me, it's a real struggle. I'm a mother of 5 kids, all of whom I lost before I ever had the chance to meet them. I know there are many others like me who are mothers to children they've never met or to children they lost. And for many of us, we have, at best, challenging if not impossible relationships with our own mother, mothers that didn't live up to basic expectations of what a parent should be, or have lost our mom in one way or another. Please remember with me, the kids that aren't here with us, and for those of us who've lost our mom (however that may be), remember that you've survived and become the amazing person you are because of the challenges. Happy Mothers and Kids day.</span></div>Anonymoushttp://www.blogger.com/profile/08061954435357100481noreply@blogger.com0tag:blogger.com,1999:blog-4016247516138085339.post-84300712540614653622011-04-30T20:26:00.001-04:002011-07-23T01:23:59.017-04:00Gabbi<span class="Apple-style-span" style="background-color: white; color: #333333; font-family: 'lucida grande',tahoma,verdana,arial,sans-serif; font-size: 11px; line-height: 16px;"></span><br />
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<span style="font-size: small;">Today we had to say a final goodbye to one of best friends ever - our constant companion who loved us no matter what through thick and thin, through lots of moves, traveling North America and was always happiest when she was closeest to us. She never met anyone she didn't win over. Gabbi lost her battle with cancer this afternoon. She was beginning to visibly suffer so much that allowing her to go was the last act of love we could do for her. Our vet gave us a poem that meant a lot to her when she lost her dog, and it meant a lot to us as well. "Cut the leash that holds me here, dear friend, and let me run. Once more a strong a steady dog, my pain and struggle done".</span></div>
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<span style="font-size: small;">So many of our friends knew and loved Gabbi, and we wanted to give you the chance to share in our tears and remembrance of her tonight. Gabbi, Mommie and Daddy love you so much and have a huge hole in our hearts tonight...goodbye our sweet puppy. Gabriella Noelle Phillips - November 1998-April 30, 2011. Please feel free to post any stories or memories you have of her. We uploaded pictures of her from puppyhood to now, if you'd like to see them.</span></div>
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Anonymoushttp://www.blogger.com/profile/08061954435357100481noreply@blogger.com0tag:blogger.com,1999:blog-4016247516138085339.post-59283842144059299802011-02-11T00:08:00.000-05:002011-07-23T00:36:05.651-04:00The Grind of HealingI need some sort of a mantra or perhaps a set of them. Healing from a surgery is always difficult for me at this stage. I'm past the initial couple of weeks, when to be honest, I think adreneline sort of kicks in and helps you get through. But this stage is sort of flat. I'm still dealing with post-op pain, can't figure out how to sleep with my "new" neck, ie with the fusion of C4-C5 and that's been more of an adjustment than I would have thought. To be honest, everything happened so quickly with the surgeries that I wasn't really prepared for the recovery period and what to expect. So, I've yet to hit a time when I'm feeling really good, though I've been trying to put on a good face for most people. I think Steven really knows I'm having a difficult time, though we've not talked too much. He gave up literally his entire month in January just so I could get medical treatment and I know he's "medicaled out" so I've tried not to make tons of conversation about it, though it's almost impossible to avoid the topic. So, I'm back to the mantras, something I can recite to myself to get me through the times when I'm feeling depressed or drained or in pain or all of the above. Something to get me through this recovery time and on to the next phase, which will be 3-6 weeks away. I don't know what I want to be doing, seems like something other than what I am, though. I'm trying to remember that the most important thing I can do right now is to allow my body to heal as much as possible and recover from the surgeries.<br /><br />I want to say both to myself and anyone else who reads this that despite my complaining and struggling through this time, I'm SO incredibly grateful that I was able to have the surgeries! I know that it was literally a miracle that it all happened and I have had SO many people praying and physically working on my behalf to make those surgeries happen (special thanks to Anne, my dr and Sheila, part of her team, without whose epic amount of work, those surgeries wouldn't have happened). I've been wondering lately if over my life I've done things for other people that in the Universal flow of things somehow have come round to bless me with so many wonderful people who have been willing to help me, or if I have years and years ahead of finding ways to pay back good things to others for all that's been done for me. I hope, to be honest, that it's some of both...though I have no idea at this point how I could do that. But those thoughts need to be saved for a later time in order to preserve current emotions which have been a bit internally volatile (understatement). <br /><br />So back to my mantras. What could those be? I will get through this. I will heal from these surgeries. This healing period will pass. It's just a few more weeks. It's OK to feel emotionally variable through this time. The pain will ease. My body will acclimate to the new changes that have been made in my body. These changes will be good and will help. My TBM has been more manageable for the past couple of weeks. My HA isn't better yet, but we have time and the new meds on our side to try to help that. It will be interesting to see how the Diamox will help with the Intracranial Hypertension which may help the HA. I have friends and family who are helping and supporting me through this time. With my drs' help, we'll figure out how to deal with the nightly horrendous, gut wrenching, waking up in tears nightmares that happen EVERY night. And somehow, with their help, we'll figure out how to get that better.<br /><br />I guess that's enough pressure let out of me for now and maybe a few good thoughts to hang onto in the midst of this lull that's hard to get through. Problem is, no matter how much help I have, it's still me that has to live out every minute of every day and that's a daunting prospect. But I'll do my best to not look ahead to that and just focus on now and let the future be just that...the future.<br /><br />Deep breath, and sigh.<br /><br />Good night. I really hope it is one. :)Anonymoushttp://www.blogger.com/profile/08061954435357100481noreply@blogger.com1tag:blogger.com,1999:blog-4016247516138085339.post-64857252462323732011-01-31T23:10:00.000-05:002011-07-23T00:36:05.678-04:00Life after untethering - 6 days post opSymptoms are changing around from day to day, which I expected but the surgical pain in still very much present. I forget I can't do simple things like pull up my underwear in the bathroom, which is why, I suppose they invented the infamous "sexy" johnny hospital gowns. They're not the most comfortable things in the world but they are functional. <br /><br />I try to spend a little time up on my feet (with help, as I find I'm a little wobbly with the meds...) to get my "sea legs" back. This is the tightest my back has felt in my entire life! Funny, you un-tether the spinal cord so it's finally NOT under strain...and my lower back feels really tight. It's just the surgery itself. I know it will get better and resume it's hypermobile self in time.<br /><br />I'm a little scared as I've had a few coughing spells today. So far, still better than before but it hurts SO badly to cough because of the cervical discectomy that was done that it's miserable. I can't imagine the pain if I couldn't stop the coughing! I have moments when the ringing in my ears stop and for the first time in my life I hear - silence. But I also have times when it comes back so I'm trying to remind myself that this is a major process of my body rearranging the nerves and relearning what it's like to live without the spinal strain and brainstem compression. I think it's going to take several months for things to "refind" their way but the time will pass. <br /><br />I had some issue with one of my ears bleeding after surgery and it's been "popping" strangely today but since this is mostly a place to write down some of the weird symptoms as they happen, just to keep a record, I figure it's worth mentioning.<br /><br />Keeping fingers crossed that the meds allow me to sleep tonight. :)Anonymoushttp://www.blogger.com/profile/08061954435357100481noreply@blogger.com138.966944, -76.86222238.966944 -76.862222tag:blogger.com,1999:blog-4016247516138085339.post-15982341621727692462011-01-23T00:26:00.001-05:002011-07-23T01:24:45.382-04:00Giving over, not giving up<div style="font-family: inherit;">
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<span style="font-size: small;">I've come to a place of surrender. I've always hated that religious term because it holds such difficult and negative connotations. No one wants to "surrender", wave the white flag, or not "get their own way". But I'm realizing that those aren't really the true meaning of the word. I'm believing that it means instead of "giving up" or "not getting my way" that it means I can give these concerns "over" to God because he is well able to keep them for me. So, I'm attempting to hold these surgeries lightly in open hands before God. What he chooses to do, I leave with him. If there's supposed to be a delay, he still knows best. I have to admit to still hoping he works all out so that miraculously, I could still have the surgeries this week and I still plan to do my part and follow through on any work I need to do to accomplish that. But if he wants me using a walker for a season, that's OK. If he wants to allow me a season in a wheelchair, there must be a reason. So many people have seen his miracles in my life through this, often in working things out quickly for me. But I want that to continue. I don't have the strength to go on and to do this...but he does and my extremely limited strength is only an opportunity for his limitless strength kick in and get me through. I have no idea what this week will hold for me. I still am in need of treatment and surgeries but God knows this so much better than I do. And I'm so grateful for the information I've learned about my genetic conditions and how're they're affecting me and the expertise and kindness I've experienced from the drs I've seen while being here in Maryland. As a posted earlier, a very good friend suggested I "trust the process". Throughout my life, God has often come through for me "last minute" and I was reminded by this friend that, while it may be difficult, it IS a recurring pattern in my life and if I go with it instead of fighting it, I'll be much more at peace. And she was right. :)</span></div>
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<span style="font-size: small;">I'm remembering that even though I truly believe that healthcare is a basic right for all people, it's also a privilege that I went without for many years. I'm trying to remember how far I've come because of all the doors that have opened for me. Without the intervention time and again from a higher source than any of us, I can't even imagine where I'd be.</span></div>
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<span style="font-size: small;">And, I have a wonderful family - intentional family, who have supported me and loved me through thick and thin when times have been awful and I've been a pain to be around. I'm so grateful for all of you and for the many of my medical providers who I count among that group. To have such a family, is another miracle in my life.</span></div>
Anonymoushttp://www.blogger.com/profile/08061954435357100481noreply@blogger.com0tag:blogger.com,1999:blog-4016247516138085339.post-35774271672135663942011-01-12T23:56:00.001-05:002011-07-23T01:25:26.259-04:00A different day and more tests needed...<span class="Apple-style-span" style="background-color: white; color: #333333; font-family: 'lucida grande',tahoma,verdana,arial,sans-serif; font-size: 11px; line-height: 16px;"></span><br />
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<span style="font-size: small;">Repost from my husband: @Steven Phillips</span></div>
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<span style="font-size: small;">THE GOOD NEWS: Doctors down here think they may have isolated three specific possible conditions that may be the reason for Rachel's problems. THE BAD NEWS: we are stuck here waiting on approval from the insurance before we can proceed with testing to confirm findings. ARAUGH!!! Can't go home - can't proceed! PLEASE PRAY NEED MIRACLE RIGHT NOW!</span></div>
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<span style="font-size: small;">Couldn't agree more but I'm feeling kind of off kilter with the new info as no one has really shared all that it means or could mean for me. Plus, it's been an awful pain day and actually a really bad cough day, too. My team of drs back home are working overtime to try to help get things sorted out but we really do need prayer for all of this to work out OK. I guess I got the two appts back to back to begin with, which is why I'm here so I'll try to trust for similar openings going forward.</span></div>
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<span style="font-size: small;">I guess it's dawning on me that if the problems they are going to be looking for on the next round of studies/testing are actually conditions they find I have, I'll be looking at likely two surgeries. One I'm not overly nervous about, but the other would require surgical correction of the area in my mid brain where the brain stem is (where the spinal cord connects to the brain). I didn't realize that would be what would be needed and any surgery around the brain stem (controlling all autonomic nervous system functions) has a potential for some serious complications. I'm trying to just be at peace since it could be found not to be a problem but there is definitely a malformation of one of the bones in my mid brain according to the geneticist yesterday.</span></div>
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<span style="font-size: small;">I need sleep so much, it would help the pain and the ability to cope and process all that's going on. I'm SO grateful for the new information and am trying not to get my hopes up (too much) that this could help because it would be absolutely awful to hear now that they know I have some malformed bone in my brain BUT they can't do anything about it (sort of a "sucks for you" type of thing).</span></div>
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<span style="font-size: small;">Enough rambling for now. I'm not even sure I'm making sense now but I'm so grateful for my friends/family and I'm so grateful for your love and support. I'm feeling and acute need for it right now so, please know it's valued and appreciated.</span></div>
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<span style="font-size: small;"><span style="font-family: inherit;">Sleep well all, hopefully with wonderful dreams</span></span>.</div>
Anonymoushttp://www.blogger.com/profile/08061954435357100481noreply@blogger.com0tag:blogger.com,1999:blog-4016247516138085339.post-64628605731153271552011-01-11T23:15:00.001-05:002011-07-23T01:26:08.714-04:001st Appt in Maryland with my geneticist<div style="font-family: inherit;">
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<span style="font-size: small;">Today was overwhelming and I'm really tired & hurting. Looking back, I'm not sure exactly what I expected but the appt with the geneticist certainly was good. She is AWESOME & we definitely loved her & her approach immediately. She was SO thorough, did a lot of physical examination, measuring, etc. I have much more connective tissue disorder involvement than I had realized but we need to do DNA testing to (hopefully) rule out a couple of possible types of heritable connective tissue disorders that are life threatening. We're praying that the insurance will spring for the testing (it requires a pre auth). She's never seen a patient with a CT disorder with the level of respiratory involvement that I have but she's willing to help as much as possible. She (and we) are really looking forward to the neurosurgery appt tomorrow and what the neurosurgeon will have to say.</span></div>
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<span style="font-size: small;">The weather is bad down here...especially for down here! It's snowing and icing so we're also hoping and praying for safety getting to appts for us and the drs. But, we both have peace that the weather might open possibilities that wouldn't be there otherwise. We'll see how it goes. I'm so grateful to be getting the chance to see these drs and for all the work that MY drs back home have done to talk to these specialists and have them accept my case. Going to try to sleep now...thanks everyone for all the love, energy, prayers and friendship.</span></div>
Anonymoushttp://www.blogger.com/profile/08061954435357100481noreply@blogger.com0