All I Want For Christmas... Is not what you might think.
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.
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.
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.
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).
It doesn't have to be at Christmas, Steven has a birthday on December 2nd 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.
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.
Monday, November 14, 2011
Monday, September 5, 2011
(Published in Seven Days Newspaper) Fletcher Allen Has a Candidate for Groundbreaking Windpipe Transplant
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| From Left to Right: Rachel, Steven, Siena, & Paolo |
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.’”
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.”
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.
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.
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.
“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.”
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.
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.
“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.”
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.”
“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.”
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.
This former ballerina has pulled off plenty of breathtaking moves in the past. For now she remains, quite literally, a woman waiting to exhale.
See original article on Seven Day's Website at the link here: Fletcher Allen Has Candidate For Groundbreaking Windpipe Transplant
Monday, August 22, 2011
(Published 8/22/2011 In the Quincy Herald-Whig) Former ballerina hopes to become 12th person in world to undergo surgery to replace windpipe
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)
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Published: 8/22/2011 | Updated: 8/22/2011
By STEVE EIGHINGER
Herald-Whig Staff Writer
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.
But first things first.
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.
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.
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.
"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."
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.
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.
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.
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.
"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.
"It's scary."
Steven and Rachel are receiving support from across the country, including Quincy.
"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."
Right now, though, that is not possible.
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.
The physical trait that may have allowed Phillips to rise to the top of the ballet world now threatens her life.
Doctors have now also determined that EDS was directly responsible for five miscarriages Rachel had earlier in the couple's marriage.
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.
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.
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.
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.
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.
"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."
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.
"That same tenacity is there in everything she does," he said.
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.
"I know (at a certain point) I have two minutes to live," Rachel said.
That's when there is a mad dash to the hospital.
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.
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.
"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.
"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."
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.
It would keep her alive.
-- seighinger@whig.com/221-3377
Link to the original article: http://www.whig.com/story/news/In-Need-of-a-Miracle-082211
Friday, August 12, 2011
One Minute at a Time (published on the GoodMenProject.com website)
August 18, 2011 By
I recently read Dan Griffith’s article The Demise of the Guise of Guys 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.
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.
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 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.
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.
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.
Try this with me. Take a breath.
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!
You are now living on a comparable amount of oxygen to what Rachel is.
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.
Here’s to my amazing wife, Rachel… the strongest and bravest person I know.
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?
Here goes… again…
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.
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!
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.
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.
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!
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.
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?
Is this how Jesus felt that night in the garden?
No answers… only loving friends waiting with us.
Silent weeping.
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.
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.
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.
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.
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.
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.
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.
About Kirsten Tynan
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.
If you'd like to see the original link, you can access it here: GoodMenProject.com - Steven Phillips
Through Facebook, Kirsten Tynan tells the story of Steven Phillips, a man standing between his wife and her death.
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.I recently read Dan Griffith’s article The Demise of the Guise of Guys 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.
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.
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.
♦◊♦
July 4, 2011I 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.
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.
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.
Try this with me. Take a breath.
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!
You are now living on a comparable amount of oxygen to what Rachel is.
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.
Here’s to my amazing wife, Rachel… the strongest and bravest person I know.
♦◊♦
July 14, 2011I 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?
Here goes… again…
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.
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!
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.
|
♦◊♦
July 15, 2011Rachel 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.
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.
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!
♦◊♦
July 23, 2011When 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.
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?
Is this how Jesus felt that night in the garden?
No answers… only loving friends waiting with us.
Silent weeping.
♦◊♦
July 31, 2011I 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.
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.
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.
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.
♦◊♦
August 15, 2011I 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.
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.
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.
♦◊♦
This story continues to unfold in Steven’s Facebook Notes, which you can read if you are logged into Facebook, and on Steven’s and Rachel’s blog Breathing Companions.
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 Rachel Reinspired.About Kirsten Tynan
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.Comments
If you'd like to see the original link, you can access it here: GoodMenProject.com - Steven Phillips
Thursday, July 28, 2011
A Compelling Story
To Whom It May
Concern,
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 First Successful Transplantation of a Synthetic Tissue Engineered).
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 First Successful Transplantation of a Synthetic Tissue Engineered).
Dr.
Macchiarini 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.
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.
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.
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.
Last month we met with Armin
Ernst, MD - Caritas Christi Health Care 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.
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.
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.
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.
Dr. Dan Weiss (UVM College of Medicine) 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 Winooski Family Health), 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.
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.
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.
Dr. Dan Weiss (UVM College of Medicine) 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 Winooski Family Health), 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.
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.
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,
LifeReInspired@gmail.com
or by phone at 802-735-2211
or by cell phone at 802-503-1211.
For photos of Rachel at the Royal
Ballet as well as several pictures showing the service dog and
Rachel's current condition please visit:
https://picasaweb.google.com/
For a brief clip about the story done
on our local ABC TV station please visit:
http://www.abc22.com/story/
Thank you for your consideration.
Very Truly Yours,
Steven and Rachel Phillips
Thank you for your consideration.
Very Truly Yours,
Steven and Rachel Phillips
Wednesday, July 27, 2011
On the News
Paolo 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:
Sunday, July 24, 2011
Reality check through a fog
I'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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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I can’t even begin to describe how touching this is.
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.
Thank you, Iris. I think the links have been fixed now.
Iris,
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.
Again, thanks for your kindness!
Chrysti
Man…sometimes there are no words.
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.”
Thank you for writing this.
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 http://breathingcompanions.blogspot.com)
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!
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. :’(