JIVA
  • wendy turner | sf | jiva studios
  • resume
  • writing samples
  • portfolio

Pediatric brainstem glioma {conversion of health provider document to patient focused document}

8/8/2017

 
OVERVIEW
Gliomas are tumors that develop in the brain or spinal cord. They grow from glial cells that surround nerve cells. Glial cells can develop into different types of tumors. Brainstem gliomas usually belong to a group of tumors called astrocytomas.
 
Astrocytomas are the most common type of tumor diagnosed in children, and most are low-grade (slow growing and not cancerous). Brainstem glioma treatment and prognosis are determined by the type, grade and location of the tumor. Possible treatments include: surgery, radiation therapy, chemotherapy, targeted therapy and experimental clinical trials.


SIGNS AND SYMPTOMS
Boys and girls are equally affected, and the most common age range of diagnosis is between 5 and 10 years. Symptoms usually appear quickly, over days or weeks.
 
Common symptoms of brainstem gliomas include:
 
  • Eye movement abnormalities
  • Weakness on one side of the face
  • Numbness or weakness in hands and feet
  • Difficulty with balance
  • Headaches
  • Nausea
  • Double vision
  • Difficulty speaking or swallowing

DIAGNOSIS
If your child is experiencing these symptoms, your doctor may refer him/her to a brain specialist (neurologist) or recommend further testing. One common test is a brain scan called magnetic resonance imaging (MRI). An MRI can identify the exact location of the tumor and often is all that is needed for a diagnosis.
 
In some cases, your doctor may want to collect a sample of the tumor for further examination (biopsy). Biopsies of brainstem gliomas have become more common in recent years and can be helpful in confirming the diagnosis and in determining treatment.
 
Gliomas are graded, or classified, from one to four. Low-grade tumors are characteristically slow growing and may be treated with surgery, while higher-grade tumors are faster growing and more complex to treat. The majority of tumors that develop in the brainstem region, other than proven grade 1 tumors, tend to grow rapidly and may be life-threatening.


​

UCSF Researchers Find Common Therapy May Drive Mutations in Recurrent Gliomas {conversion of published scientific research paper to general public article}

5/30/2017

 
Cancer by nature is about change. Cancer cells multiply and evolve quickly. Certain types of brain tumors called gliomas pose their own particular challenges, as an initial tumor’s genetic makeup might be very different from that of a recurrent tumor. Further understanding of this could have great implications on future management of these recurrent and more aggressive tumors.
 
In the December 12, 2013 issue of Science Express neurosurgery researchers from the University of California San Francisco investigated the genetic makeup of both initial and recurrent tumors and compared the mutations found in each. They also evaluated how treatment with the widely used chemotherapeutic drug temozolomide (TMZ) might affect the evolution into a secondary tumor. 
 
Low-grade gliomas are usually treated through observation, surgical removal, chemotherapy, radiation, or some combination of these options. Frequently these tumors return, sometimes years later, in a more aggressive and less treatable form. TMZ works quite effectively on original gliomas but has shown little success in recurrent tumors which usually have a grim prognosis.
 
In most cancers, recurrent tumors grow in different locations in the body yet share common genetics. In the case of the gliomas, new tumors appear in nearly the same location as the original tumors but the genetic profiles of the two are quite distinct. It is hypothesized that the new tumors grow from tissue left behind from the original surgical excision and then progress on their own distinct evolutionary path.
 
To test this hypothesis, tissue samples were taken from 23 patients’ original and secondary tumors. Genetic sequencing determined that in 43% of the cases, only about half of the mutations from the original tumors were present in the recurrent tumors. These results diverged from previous research showing that tumor evolution generally progresses along the same genetic path. This is known as clonal evolution.
 
Additionally, in 6 of the 10 samples from patients treated with TMZ, it was found that the number of mutations in the recurrent tumor was approximately 30 times greater than expected. These results suggested that TMZ treatment was the cause for the newer mutations in the tumor and was responsible for the change from low-grade glioma to higher grade glioma.
 
The results of this research will lay the foundation for future testing to determine if particular genes contributing to the TMZ-induced hypermutations could be turned off, allowing for the benefits of TMZ treatment without the deadly mutational side effects.
 
Precision medicine’s goal is to use information specific to each patient’s disease when making treatment decisions.  This study moves us one step closer to that goal for patients with glioma.

{Glioma Facebook post}

Is your chemotherapy drug causing your tumor to grow faster? UCSF researchers describe their new understanding of tumor evolution, and their surprising discovery on how TMZ might affect recurrent gliomas.
 
science.sciencemag.org/content/343/6167/189.full

{Glioma Tweet}

UCSF research finds therapies drive mutations in recurrent gliomas. @sciencemagazine http://bit.ly/2rRtyWp  #ucsfneuro #PrecisionMedicine



SFS Community: Bay View Opera House {newsletter feature}

11/28/2016

 
Before the Community Center, parents like Barbara Ockel helped shuttle the school’s many instruments to theaters around town for musical performances. Recognizing the logistical complications, Barbara introduced the revolutionary idea of renting a U-Haul to transport the instruments safely and efficiently to their destinations. It seems Barbara has a knack for solving problems and getting things done.

Barbara and her family have lived in the Bayview since 1993. Her son Romare attended SFS from preschool to graduation in 2009. Each morning on the way to SFS, they passed a lovely but deteriorating building called The South San Francisco Opera House.  Occasionally, SSFOH would host events which Barbara would attend. Once she worked with Hunter’s Point Shipyard artists to create a banner for the Opera House. She hoped to create a connection between the shipyard and the SSFOH, both prominent in the area’s history.

In the mid 1800’s, the Bayview was an undeveloped marshy area known as “Butchertown.” Slaughterhouses had been pushed from the city center. Related industries soon followed, and with them came residents who settled the area. In 1888, the Masonic Lodge built what they hoped would become a cultural center. This ornate Victorian structure was named “The South San Francisco Opera House.” The building hosted vaudeville and theatre productions until the 1906 earthquake compromised access to the region. Wartime shipbuilding efforts temporarily buoyed the social hall, but after the war, activity slowed and the building fell into disrepair. In the mid-sixties, threatened by demolition, the building was saved by resident, activist, and artist, Ruth Williams. Williams organized performances and encouraged many neighborhood artists to develop their crafts. In 1995 the building was renamed the “The Bayview Opera House Ruth Williams Memorial Theatre”.

In 2008, Barbara joined the board as a volunteer. She facilitated an art exhibition for a Bayview artist, and organized an inauguration celebration for then newly-elected president, Barack Obama. Soon thereafter, the BVOH was seeking a new leader and Barbara was asked to serve as interim director; a position that would soon become permanent.

Under Barbara’s tenure the structure has undergone two renovations. Initially, she uncovered grant money awarded for historic preservation from the National Park Service. During this phase, original Douglas fir floors were salvaged from beneath the worn linoleum. The second renovation occurred after the BVOH was placed on the Registry of Historic Places guaranteeing the original structure would be preserved. They reinforced the balcony, rebuilt a water-damaged wall, and made bathrooms ADA compliant. Esteemed Oakland landscape architect Walter Hood redesigned the surrounding yard and gardens.

The  ribbon was cut July 2016 and officially reopened in September with a neighborhood celebration. Today, the BVOH serves as a culture and arts center available to the community at little or no cost. Most recently the BVOH hosted the Sphinx Symphony, an all black/Latino orchestra. The group’s mission includes performing works by minority composers, and mentoring young musicians. Over 200 SF school children enjoyed this free concert in early October.

Barbara is a big believer in community outreach and a strong supporter of SFS’s mission of inclusion, diversity and community involvement. “SFS is so great in terms of connecting with community. They do an awesome job of opening the school and giving people a glimpse of what the school does and inviting them to participate. “ In turn, Barbara would like to invite the SFS community to visit BVOH, and to volunteer for any upcoming events. More information can be found on their website: www.bvoh.org.

Sofia Lopez-Ibor: 20th Anniversary {newsletter feature}

11/28/2016

 
2016 marks a milestone for music and Spanish teacher, Sofia Lopez-Ibor. In 1996 Sofia left her home country of Spain to join The San Francisco School (SFS) as a teacher. This September, the school hosted a 20th Anniversary Celebration in her honor. Many of us know Sofia as the quiet and intense teacher who calmly orchestrates the songs and musical pieces of the school concerts. At her anniversary celebration, we learned so much more.

One of twelve children, Sofia was born in Madrid, where she says that it was always “busy, messy, and loud.” Sofia’s father was a counselor to the royal family at a time when they were exiled to Portugal following a government takeover by Francisco Franco’s regime. Her father and others decided to build a progressive school in hopes of educating Franco’s appointed successor, Juan Carlos, in ways no longer allowed under the dictatorship. Sofia attended this school and thrived in the environment of music, poetry and art. She learned Orff Schulwerk, folk music, and dance, and later studied flute, recorder, and Baroque music in Madrid and London.

Sofia flourished in the busy life of study, writing, and performance. Her excellence in teaching children was recognized by her teacher Elisa Roche, who encouraged Sofia to pursue teaching as her main focus. She was sent to the Orff Institute in Austria where she developed her talent in music pedagogy and where she met Doug Goodkin, a teacher at SFS, who invited her to come to the school.

Sofia decided to make the move. She credits her colleagues Doug Goodkin and James Harding, and the children she teaches each day, as her inspiration and support. “They are everything to me; these colleagues are just gold. What keeps me here? This mass of musical kids that challenge me every day and that I adore. I didn’t need to be up on a stage; I just needed to be down on a rug with the kids. I found my place; you all made this my place.”

Sofia continues to travel the world, instructing children and adults in music. She has written several books, was awarded the Medallion of Honor at the Orff Schulwerk Forum in Salzburg in recognition of her teacher training, and was named Queen of Development in Dzodze in the Volta Region in Ghana. We are so fortunate that Sofia has chosen to make SFS her place.

Parent Education Partnership {newsletter feature}

11/28/2016

 
The core values of the The San Francisco School are Community, Diversity and Culture. Promoting these values extends beyond students to our broader parent community through the Parent Education program. This year, the school has partnered with two organizations SPEAK and Common Sense Media to bring enrichment opportunities to our families. SPEAK is a coalition of Bay Area K-8 independent schools whose mission is to enhance parent education through speaker series. SFS is also partnering with Common Sense Media, a non-profit organization that provides education and advocacy to families to promote safe technology and media for children. SFS Parent Education topics this year will cover social media & technology, math education & growth mindset, social-emotional learning and relationships, and brain science.

Last year’s parent ed series, featured Miguel Lopez, Professor of Multicultural Literature and Teacher Education at California State University. He presented a four-part series entitled “Literary World Cafe”. Miguel is a powerful advocate for inspiring passion for learning through literature. He spoke to parents and teachers on diversity, social justice, and democracy, and demonstrated how they can be cultivated through reading. Miguel developed a summer reading list with diversity at its center, and brought parents ideas into the mix through facilitated workshopping in small groups.

Rate. Educate. Advocate. Many people know CSM for their movie and game ratings. Supporting missions are to educate on digital literacy, and to advocate for children through legislation. Early this October, Eisha Buch from Common Sense Media led an engaging conversation around the question, “How can we build awareness of what we need to know for our children?” with the goal being to keep our kids safe and supported in their media choices. The SFS/CSM partnership gives parents access to a bounty of resources, among them an entire K-12 Digital Citizenship curriculum. CSM  reports that adolescents are looking for connectivity, identity, and peer validation. One teen said, “I’m not addicted to tech, I’m addicted to my friends.” Eisha offered ways to approach the topic w/ kids, “Don’t be judgmental, focus on reflection, ask them what’s their favorite app.” She stressed the need to be transparent, model trust, and avoid a power play and recommends working together on creating “no device” challenges at home. “Device free dinner” is a great place to start.

Future parent education nights will feature Jo Boaler who’ll be speaking on her book “Mathematical Mindsets.” Jo is a Professor of Mathematics Education at Stanford University and internationally recognized expert on teaching mathematics. This event will take place Tuesday, October 25, from 7:00-9:00 PM at Chinese American International School. Admission for SFS families is free. Winter and Spring parent education opportunities will include a talk with Rosalind Wiseman, expert on bullying, ethical leadership, the use of social media, and media literacy, and a presentation by Dr. Melina Uncapher co-director of the UCSF Educational Neuroscience Lab, and one of the leading voices on the science of learning, talking about what neuroscience tells us about raising and educating children.

Stories From Your Parents {blog post}

7/31/2014

 
There exists an archetypical story from a generation prior to mine, of the perils and obstacles once faced by kids just trying to get to school. How many times have we heard the one about the five-mile walk, barefoot through the snow, to a one-room schoolhouse with no heat?

My version of this story, the one I’ll tell my son, will go like this…When I was a little girl, I traversed the almost two miles to school on my bicycle. On a good day, when the traffic cooperated, I could make it the whole way without hands. Once there, I found my desk, in my row, and followed along with the lessons the nuns would impart. We didn’t learn to read until we were in first grade, and we practiced writing using a fat pencil on wide-ruled paper.

Fast forward to college, to an era they call the late ‘80’s. Hair was permed, bags were large, and fashion was at a low-point (I cringe and chuckle at its resurgence). The requirements for papers were numerous in the Liberal Arts track, and my desk was ever littered with collections of handwritten assignments. I repeat, “handwritten”!

What did this mean? One implication was that it was necessary to complete the papers prior to the morning on which they were due, since there was still another step. The paper had to be typed. A typist had to be contracted and paid. Why not type it myself, since I had, after all, received a typewriter for high school graduation? Well, I didn’t know how to type. My high school offered either Latin or Typing, and it seemed that declension was my destiny – puella, puellae…

Personal computers did make their debut while I was in college. There was a room, in a building, on a side of campus where few sociology majors dared to tread – the COMPUTER SCIENCE lab! Rows of little boxes sat upon tables. These little boxes were called Macintosh Pluses and they sported 1 MB of memory (up from the prior version’s hefty 512k). It was here that I grasped my first mouse and used the MacPaint spraypaint tool – color: hot pink; design: polka dots. I marveled at the miracle of my creation as it emerged from the lab’s printer.

Two years later, at my first job in San Francisco, I taught myself to type (the upside of working in a perpetually empty art gallery). And in 2007, I once again found myself in that place where education and technology joined hands (Silverpoint – web solutions for school), this time in a much more successful pairing.

And my Kurt Vonnegutian advice for this generation? Study Latin and typing; one will help you read, one will help you write. Embrace technology but don’t forget to ride your bike. And remember, it’s not polite to laugh (out-loud) at your parents’ soon-to-be arcane nuggets of wisdom. Just send them a text to let them know you heard… :-)

{ Perhaps you educators (and parents) could share a story or two of how the kids in your life are coping with the double-helix of life and technology. Maybe more importantly, how are you navigating the terrain? }

Mary Robertson {newsletter feature}

7/28/2014

 
A wooden gate off a redwood-lined road leads to a house perched on the bluff of the Russian River. Roxy and Doc, the Airedales, greet us in a hummingbird and flower filled yard. The river beyond is a light green and flows gently by. It is hard to imagine that in 1986 and 1995 this same river crept up over the deck and yard, and into Mary & Frank Robertson's home. This is the river whose character we have come to know better through the paintings of Mary Robertson.

In the early 1960s, Mary Robertson received a $500.00 art scholarship to the University of California-Los Angeles. She majored in art history and enrolled in painting and drawing classes, but ceased attending as her interest in the UCLA film school developed. "Girls weren't supposed to be artists, they were supposed to be teachers."

Though she did make one "art film," her future took a different course. Robertson moved to Venice, California and began her career as an art-world adjunct working for a commercial paint company. She named colors, developed an olive green she says no one ever bought, and traveled to distant and exotic places, "as far north as Modesto, or Fresno" to give Jet-Dri enamel demonstrations by "pouring paint into the whirly-gigs."

After moving to San Francisco, she worked as a graphic designer for a number of magazines. Throughout this period, Robertson continued to paint privately, mostly making self-portraits at home. At the urging of a friend, she enrolled in a ceramics class taught by Ron Nagle at the University of California-Berkeley. She describes Nagle as a wonderful teacher who not only instructed her, but encouraged her reentry to the fine art world. "Ron always said to hang with the heavies, and to get advice from the people you admire." That's just what she did.

Through this association, Robertson met Gordon Cook, who became an important figure in her development as a serious artist. In the past, her painting style had been experimental and varied. "I showed Gordon a lot of work; mostly big brushstrokes, Ab-Ex gloppy-style...I was just flailing." Cook encouraged her to paint one thing, to paint the way her hand wanted her to paint, and to accept the seriousness of her undertaking.

In 1978, the Robertsons moved to Guerneville where she worked part-time at the local newspaper, and painted on her days off. The solitude of the region allowed her a quiet calmness that she wanted to recreate in her paintings. "I'm not trying to make a photograph; I hope they capture more than what meets the eye." Her first show was at Glastonbury Gallery in 1982 and featured simply paintings of eggs in their cartons. Charles Campbell bought the first painting, and shortly thereafter became her sole representative.

Robertson's work bespeaks the solitude of a moment, but instead of freezing a specific action, her paintings possess a serenity that can be likened more to an eternal pause. A figure wading into the river, a beach umbrella, or a stack of innertubes marks a perpetual moment. In these, one notices the light primarily. Each piece suggests a specific atmospheric condition and a particular time of day. She has often been linked to the Luminist and Tonalist traditions as she shares their concerns for light and color directed movement.

Her other passion, the environment, has sometimes drawn her into disruptive fights to save trees and waterways. Her subjects which frequently included the river, trees, and beaches often reflect her feelings about these struggles. "The landscapes are usually dark and escapist, not sunny or cheerful like the bright contrasty beach and river scenes. Sometimes I just have to paint them (the trees)."

Otherwise, Robertson simply paints what she likes. She says objects are chosen for their colors, patterns, and compositional potential. Occasionally, they have spiritual meaning for her, other times she sees them simply as pleasurable objects. "You don't know a thing until you've drawn it."

Concerning exhibitions and deadlines, Robertson considers them with mixed feelings. As a deadline approaches, "it gets to be a job. Sometimes I have to drag myself kicking and screaming into the studio, at other times, it's pure pleasure." After the years of working for magazines, her main struggles with painting are against the pitfalls of being "too glib or slick," or against the urge to get too complicated. At these times, Robertson looks to the work of Thiebaud, O'Keefe, Eakins, Morandi, and Winslow Homer. Currently, she is appreciating the early work of Russell Chatham, and wistfully ponders,  "If I could draw like Claus Oldenberg and paint like Russell Chatham..." Despite the hard work, "like Anne Lamott said, it's a vacation life, it's doing something that you love while living in a beautiful place."

Mary Robertson's upcoming exhibition will feature over twenty-five new paintings and work on paper. This show will focus on the hills, curves and trees of the local landscape as well as on the summer dams and warm beaches of the Russian River. Robertson also plans to include works from an ongoing series entitled "Yellow Trees," landscapes made from travels over the last 10-15 years.

Face Time, Please! {blog post}

7/1/2014

 
Time for the next installment in my series, “Gee Whiz, What Will They Think of Next??”

Last night, my son finally pulled out the front tooth that, for days, had been wobbling and jutting about at unnatural angles. With blood on his chin and pride brightening his face, he triumphantly held up the tiny white wedge of enameled magic. Soon this nugget would be converted into a George Washington (somehow that doesn’t sound as impressive as a Ben Franklin; fortunately, 6 year-olds are easy to impress).

The event merited a call “back home” to Memphis. Better yet, it demanded FaceTime (Apple’s video calling software). Prior to FaceTime, I would have been holding the phone up to my son’s ear and coaxing him to tell Gramma his story. Instead, FaceTime allowed the extreme close-up of his mouth to do all the talking <insert>Gramma squeal</insert> .

Three cheers for the personal connection!

Recently, at Silverpoint's regional Web Strategy Workshops,  I was reminded of that other “face-time.” I found myself together with many of the people I spend much of my day talking on the phone to and emailing. In a few instances we were meeting face-to-face for the first time.

It’s surprising that something so simple can be so profound. Sharing an experience with someone, looking into her eyes, or shaking his hand; these things carry a weight that far out-powers the hours logged emailing. It’s what makes the difference when all four phone lines are ringing and the one you pick up has someone you’ve actually met on the other end. It’s the extra bit of patience that a client extends to me when she's anxiously awaiting word on some pressing project. It’s a reminder of our humanity, of respect and courtesy, and of our shared goal of excellence.

Imagine getting all this AND WEB STRATEGY!! You should definitely come to our next round of workshops; we can’t wait to share some face-time with you!

Twenty-Five Treasures {catalog introduction}

7/1/2014

 
We welcome you to our fifth edition of the Twenty-Five Treasures catalog. This fall, as in years past, the owners Charles Campbell and Paul Thiebaud have composed a delightfully diverse visual symphony comprised of the many wondrous artworks and artifacts that cross this gallery's threshold. This concert of images was conducted with a shared baton, as Charles and Paul led the assembly of gallery artists, juxtaposing the subtle whispers of a delicate drawing with the thunderous bellows of a mighty painting. The spicy local consortium is joined by the unnamed tribal, Pre-Columbian and American Indian artists whose efforts so intrigue the owners, and staff. And it is to our great delight that the harmonious additions of an exceptional representation of international artists infuses this melody.

Ultimately, through this exhibition, we hope to convey the joys of these discoveries. Imagine the thrill of encountering what you deem to be a quintessential example of a favorite artist or style, and now imagine your surprise upon encountering its rival. Under the direction of Charles, Paul, and Diana Young, these exciting moments occur with astonishing frequency. Their feats seem effortless at times, but an endeavor such as Twenty-Five Treasures only evolves with the ease that can be enjoyed after a lifetime of connoisseurship.

This presentation of treasures reflects our desire to give voice and audience to twenty-five of this year's favorites. We hope that you will join us in September for the celebration.

Patient Story {Edited patient web video transcript}

3/31/2014

 
Paul C. and his family were making the most of life, enjoying a family vacation in Hawaii. Paul came down with a cold on that trip, and upon returning home to Morgan Hill, Calif., felt run down and had trouble catching his breath. His wife Stephanie suggested a chest X-ray. Instead of the pneumonia he was expecting, Paul learned that he had a condition called idiopathic pulmonary fibrosis.

In the months that followed the diagnosis, Paul and his family scoured the Internet for information and options. His pulmonologist sent him to a specialist who did not consider Paul a candidate for a lung transplant. Paul’s condition was worsening to the point where he required an oxygen machine to breath. Paul and his family sent his scans and test results to various transplant centers.

UCSF contacted Paul for an interview, and Dr. Charles Hood, cardiothoracic surgeon, concluded that despite an esophageal issue, Paul was a candidate for a lung transplant. He underwent a successful transplant and is now breathing freely and saying yes to things in life once again.

How did you feel when you knew something was wrong?

Well, first of all I was reluctant to believe that it was as bad as it was. I just figured it was something they could fix.  Doctors can fix everything.  When we found out it was more serious, we did research on the Internet, and then we got nervous.  

In your mind there were no options?

All of the research said, “There is no cure, one to five years,” and nobody mentioned any other options. I had never known anything about lung transplants. There was no hope.  

Tell us about the disease in your terms.

Well, I was diagnosed with idiopathic pulmonary fibrosis, a disease that basically hardens the fibers of your lungs and prevents the oxygenation of the blood. This disease progresses differently for everybody, mine was really fast.  

Once my oxygen saturation was low, they put me on oxygen and, I had a 50-foot leash. They did have portable tanks, which lasted one to two hours if I was sitting.  If I was walking I would use more oxygen and so would have less time. Just to go to the store I had to use the little electric shopping carts.  Here was a guy, 46 years old, with little kids, stuck in this thing, and I hated that. 

The pulmonologist referred me to a specialist, who started monitoring me and checking oxygen levels. I also did clinic visits, had CT scans and had pulmonary function tests. They put the results on a CD and my brother and I took it to the hospital for my specialist to review.  After a quick look, he basically said I was not leaving; it was bad enough that I needed to get transplanted right away.  I was there for seven days and did multiple tests every day. The final one was a test of my esophagus and my motility to push food down. 

At the end of all of that, the specialist just said, “I’m sorry you are not a candidate for transplant.” He didn’t say there were options or that there were other places that do transplants.  He just said I was not eligible.  And so I asked him a logical question, “How long do I have to live?”  And he just said, “We don’t like to answer that.”

How did you feel when you found out you had an option?

When we found out there was an option to get a transplant, I went through a lot of different feelings.  You know, it is weird.  Somebody else’s parts are going to be in me.  I don’t know how long they will last.  I don’t know anything about the process. It wasn’t like, “Oh I’ll just do that, and it will be all over.” We had to think about it.

We took all of the test data and started sending it out to transplant centers.  We sent it to UCSF and two other places farther away. Thank God UCSF called and said that they would like to interview me. I had an interview with Dr. Hood and he said they would do the transplant. I told him about my esophageal issue and he said it was not a problem and that they would tackle that afterwards. He was just so encouraging.  I thought, “Wow, okay. We can do this!”

What went through your mind when you got the call that lungs were available?

There were a lot of mixed emotions. I had a pretty good attitude going in and I was set if something really went wrong, I did everything that I could. I think when we actually got the call I was a little nervous. I wasn’t 100 percent sure, but it was good, we were excited. We had been waiting for months and were thinking,  “Come on, come on, let’s do it,” but at the same time, this is a big surgery. It’s been a journey the whole time, and this is something new starting that is bigger than anything I had ever gone through so far.  So it was huge, it was just huge.  I had lots of hope and a little bit of fear.  I felt alive, I felt hope, and I felt close to everybody.

What was your prognosis when you left?

Well, when I left, I just figured everything was going to be okay.  It was 100 percent, almost as good as new.  I was told, “Go recover, do what you are supposed to do.  Do your walking, do your breathing exercises, do all of your breathing treatments, take your medicine and go live your life,” and that is what I did.

What is the feeling of your new lungs?

My chest felt tight and that was mainly because the lungs were good and they were full; my own lungs had been shriveled up.  Before the transplant when I was sick, I would breath very quickly. After the transplant the lungs were fine, but I was still breathing the same way. The doctor told me, “Paul your lungs are working fine, they are working great, look at your oxygen level,” and so it’s sort of like I had to learn how to tie my shoes again. I literally had to learn how to breathe, and I did.  

Also, laughing was huge.  You know, when you are sick everybody wants to cheer you up, and it’s great, but I had times when I laughed and it was horrible, because when you laugh, you exhale more than you inhale.  And so after the transplant, to laugh feels great.  

How do you feel now?

Awesome.  I feel pretty darn normal.  And I don’t take it for granted.  I get up every day and thank God I get to do what I want to do. Six weeks after the transplant I was back to work full time.  Before, I had worked 10 to 12 hours a day, so two things happened: one, I couldn’t do that after the transplant, and two, I was missing my family.  So I switched things around. There are not a lot of “somedays” anymore. I don’t put a lot of stuff off.  

Is there anything you want to add?

It’s been an incredible journey and it still goes on.  It doesn’t stop here.  I am super glad and thankful every day. I’m glad to be here and I take advantage of everything I can do.  You know, when life happens and your family argues or whatever, I get sucked into it like everybody else, I’m normal, but I turn around a lot quicker I think.  I’ll stop myself in the middle of something like that and just remember it.  I’m lucky to be here.  I am very thankful. 
Powered by Create your own unique website with customizable templates.