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St. Louis Second Wind Lung
Transplant Association
Newsletter |
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Volume 11 Issue 10 | October 2010 |
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Dear Members, Friends and Family:On behalf of the St. Louis Second Wind board members and our general membership, I take this opportunity to thank Linda Nottestad for her exemplary service as our treasurer for the past five years. Linda's husband, Ken, is a bilateral lung transplant recipient and Ken recently celebrated the eleven -year anniversary of the gift of new lungs.Linda and Ken have six children and twelve grandchildren. Two children are in St. Louis, three in Texas, and one in Nebraska. Email pictures and telephone calls keep everyone updated. Linda's hobbies include volunteering, gardening, working crossword puzzles, genealogy, and traveling the world.
She retired in 2004 after a 30-year career at Webster University. She was associate vice president for academic affairs, and traveled frequently to Webster's extended campuses throughout the United States.
Thank you, Linda, for your service to the Board of St. Louis Second Wind and to our members. It is rare to serve with an individual who not only demonstrates commitment and excellence but who is a very dear friend.
Welcome Peter Nicastro
Peter Nicastro, our new treasurer, has been busy acclimating himself to his new role. Peter has been a long-time supporter and member of Second Wind. Most recently he served as a committee member for the Annual Lung Walk and filled the position of refreshment chairperson in 2010.
Appointed in 2006 to a four-year term on the Governor's Organ Donation Advisory Committee, Peter was elected chairperson in 2010. The committee advises the Missouri Department of Health and Senior Services on the operation and fundind of Missouri's organ donor registry.
Peter has cystic fibrosis. He received a double lung transplant in 1998 and a living donor kidney transplant in 2005.
He holds master's degrees in business administration from Washington University in St. Louis and in biology from the University of Missouri, St. Louis and a bachelor's degree in chemistry from Saint Louis University. He has worked for Express Scripts in St. Louis since August 2010.
Peter amd his wife Ellen, a pediatrician at Mercy Pediatrics in Creve Coeur, have one year old twins Peter and Elizabeth.
He is a member and director of St. Louis Second Wind and has been an officer of the Knights of Columbus, a Catholic family, fraternal organization. Peter enjoys gourmet cooking and spending time with friends and family. Welcome Peter.
Fondly,
Tom Archer
314.664.6360
tea3440@sbcglobal.net
1.888.855.9463 |
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Washington University School of Medicine
Barnes-Jewish Hospital
Division of Pulmonary and Critical Care
RSV INFECTION AFTER LUNG TRANSPLANTATION
Respiratory syncytial virus (RSV), a single-stranded RNA virus, is a member of the paramyxovirus family which includes measles, mumps, and parainfluenza. RSV causes an acute respiratory illness in people of all ages, and most have been infected at least once by the age of 3 years, but re-infection is common even in a single season. RSV infection is seasonal, typically occurring between December and March in the northern hemisphere. The virus is transmitted from person to person directly and can survive on the hands for several hours, underscoring the importance of hand washing to prevent transmission. The severity of the illness depends on the patient's underlying health. It is one of the most common respiratory infections in children under the age of 1 year, and causes a severe infection in premature infants and children with congenital heart defects or chronic lung disease. In healthy adults, RSV typically causes a self-limited upper respiratory tract infection and serious disease is unusual. However, RSV can cause a severe illness in immunosuppressed adults and those with underlying lung disease.
Typical symptoms of RSV infection include sinus congestion, cough, and wheezing. Fever is typically only low-grade, unlike the high-grade fever characteristic of influenza. Gastrointestinal symptoms, such as nausea, vomiting, and diarrhea are uncommon. However, severe pneumonia can develop in immunocompromised adults. Pneumonia with respiratory failure is a common complication of RSV infection among stem cell transplant recipients, but this is unusual among lung and other solid organ transplant recipients. Nevertheless, because the virus typically infects the lower respiratory tract in lung transplant recipients, it causes inflammation and edema of the small airways. In addition, RSV infection can predispose to secondary bacterial respiratory infections in lung transplant recipients, and this usually complicates the illness further. The diagnosis is usually made or confirmed by testing respiratory secretions, obtained by nasopharyngeal swab or wash, for viral antigens or RNA using various commercially available rapid assays.
Supportive and symptomatic care is typically the cornerstone of treatment for otherwise healthy adults. Few drugs are currently available for the treatment of RSV infection, and these can only be recommended for infants at high risk for severe infection or immunosuppressed adults. Ribavirin is an antiviral drug that is used for the treatment of hepatitis C and RSV. For RSV, it is typically aerosolized but the oral and intravenous routes have also been used. It does have some side effects including anemia, bronchospasm, and birth defects in pregnant women, but it is generally well tolerated. Nevertheless, its routine use in otherwise healthy adults or children is not recommended because studies demonstrating efficacy have been lacking. On the other hand, cases series in stem cell and lung recipients have shown some benefit, but it is important to note that the efficacy of any treatment is difficult to determine in non-randomized studies. Nevertheless, many transplant centers use ribavirin for the treatment of RSV infected patients. Palivizumab is a monoclonal antibody to a highly conserved viral protein and is usually used to prevent infection in high-risk infants. However, it has been used in severely ill immunocompromised patients, although this has not been well studied. Lastly, bronchodilators and steroids are often used to alleviate the bronchiolitis symptoms of coughing and wheezing.
For most healthy children and adults, there are no long-term sequelae of RSV infection. However, some children are more likely to develop asthma and recurrent respiratory infections years after the RSV infection. Furthermore, RSV infection increases the risk of bronchiolitis obliterans syndrome (BOS), or chronic rejection, after lung transplantation. This is not unique to RSV as all respiratory viruses have this effect. The exact mechanism is uncertain, but it is thought that viral infection of small airways in the lower respiratory tract triggers an inflammatory cascade that ultimately results in the small airway obliteration characteristic of Bronchiolitis Obliterans Syndrome - chronic rejection.
A new drug for RSV, ALN-RSV01, is currently being evaluated in a Phase 2 multi-center clinical trial. The results of a small clinical trial using ALN-RSV01 in lung transplant recipients infected with RSV were recently published. The drug reduced symptom scores, and more importantly, reduced the incidence of BOS 90 days after the infection. The Phase 2 clinical trial aims to corroborate those findings in a larger cohort and is planning to enroll patients this season. Obviously, this would be an important breakthrough in the management of the acute infection and the long-term sequelae in lung transplant recipients. |
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 We Remember Mary Ann Barker
1939 - 2010
Mary Ann Barker age 71 of Ballwin, Mo, passed away, Friday, September 17, 2010. Beloved wife of Richard Barker; dear mother of Debbra (Will) Doheny & Rick (Sarah) Barker; loving grandmother of Josh & Justin Denton and Morgan & Jimmy Barker; dear sister of Charles (Sara) Kreider & the late Robert (Judy) Kreider; aunt of Jackie Ward and family; very dear family friend of Barb (Trigger) Hill and Jason & Kenny Hill.
Mary Ann received lung transplant #544 at Barnes-Jesish Hospital on November 10, 2000.
Memorials may be made to St. Louis Second Wind Lung Transplant Association. Memorials and mailed to our treasurer, Peter Nicastro, 2169 Willow Ridge Lane, Chesterfield, MO 63017.
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November's Second Sunday Social
Dr. Bryan Emerson will speak at the November 14th Second Sunday Social and Meeting. He is the chiropractic physician who joined us at the Lung Walk again this year. He met with individuals and small groups and provided treatments.
Dr Emerson's Presentation
Dr. Emerson's presentation will cover the following:
- How mental, physical, and chemical stress influence the body and what to do about it;
- How nutrition and exercise influence the healing process;
- How improper breathing and lung conditions can create pain/discomfort in the musculoskeletal system, and what you can do about it.
About Dr. Emerson
Dr Emerson has been trained in a variety of chiropractic techniques ensuring a comfortable and effective treatment for each patient's needs. He has been trained in the most current rehabilitation techniques and uses active rehabilitation for many of his patients. He also has a strong interest in nutrition as he just finished "Integrating Nutrition into Practice" at the end of 2008. Dr. Emerson's overall aim is to help each patient achieve wellness not just in treating symptoms, but on encouraging full restoration of health through chiropractic treatments, nutritional advice, and rehabilitative exercises.
Outside the office Dr. Emerson enjoys spending time with his wife, Jessica. He also enjoys playing a variety of sports, including golf, tennis, racquetball, soccer, and running. He still tries to find the time to play in an occasional golf tournament, as he played golf for Concordia University. He also enjoys reading and watching a variety of sports.
Bryan J Emerson, DC
Triad Sports & Family Chiropractic, LLC
Creve Coeur, MO: (314) 993-2424
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Christmas Party
Please join us as our guest for our Annual Second Wind Christmas Party on December 12, 2010 at Chris' Pancake and Dining which is located at the intersection of Watson and Southwest Ave, just a block west of Hampton Ave.
We will begin at 2:00 P.M. with a 30 minute social and beverage time. Dinner consists of an entree of your choice, a salad, baked potato, mixed veggies, and cake & ice cream.
To make reservations please contact the chairperson:
Amanda Helderle
We will need the following information: your name, number of reservations, and your telephone number. Reservations must be received by Friday, December 10, 2010. We are looking forward to celebrating the holidays with you! Second Wind Board Members: Annette Carr, Linda Nottestad, Marian Fremtzel, Gary Brandenburger, Josh Stegeman, Peter Nicastro and Tom Archer
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Lung Walk Memories
By Jan Kwasigroh
In 2006, Larry and I missed the opportunity to participate in our first Lung Walk figuring the cold, rainy weather Mother Nature presented was not what a pre-transplant person would want to participate in and comprimise his health status. The Walks since then have gone from Brrrr cold and windy to sunny and delightful. Lung Walk 2010 was absolutely sunny and delightful. The advance planning by the Board and Committees had everything in place as the 405 pre-registered checked in and received their Lung Walk 2010 t-shirt. Another 50+ checked in that morning which made this Walk the largest to date. The Memorial Service at the start of the morning gave special recognition to those friends who have gone before us, pre- and post-transplant patients as well as caregivers.
The runners and walkers were off at 9 o'clock and the House of Bishops Band kept everyone, supporters as well as returning runner/walkers, in a party mood with their fantastic array of music. The free food which included donuts, bagels, cream cheese, a wide variety of fruit, vitamin water, orange juice, and regular water were available to one and all.
Basket raffle tickets were on sale for $1 each and with 25 or so to choose from I was hard pressed to decide which baskets to put my tickets in. There was an Italian themed basket, wine basket, tailgate basket, coffee basket, fruit baskets, and a bicycle basket just to name a few. While I spread my tickets over several I'd hoped to win, I didn't, but the fun was still there. My chuckle of the day came when the photographer was getting a picture of the young man who won the bike. As he was being positioned on the seat he looked around and then said, "Where's the bell?"
I saw several folks who were at Barnes the same time as we were waiting for a lung transplatn transplant. We were able to catch up on health status and life in general. It was a sunny day in many respects! I hope Mother Nature is as good to us next year because we'll be there!
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A Record Breaking Day for the Lung Walk/Race
By Linda Nottestad
Participants
Second Wind Lung Transplant Association had a record-breaking number of participants in the Lung Walk/Race. This year 489 individuals participated. We have never had such a large turnout for our annual fundraiser. The credit for this goes to members from Greater St. Louis and Southern Illinois who assembled large teams for the event.
5K Race Winners
There were 82 runners this year and 407 walkers. Congratulations to all of the runners for completing the course. The following race participants won in their age category:
Female 1st Overall - Lea Rondals, Female 12 and under - Mallorie Monckton, Female 13 to 19 - Amanda Juengst, Female 20 to 29 - Stacey Roberts, Female 30 to 39 - Inka Nisinbaum, Female 40 to 49 - Lisa Basich, Female 50 to 59 - Linda Martin, Female 60 to 69 - Rita Kellogg, Female over 70 - no runner
Male 1st Overall - Travis Bashaw, Male 12 and under - Nathan Juengst, Male 13 to 19 - Brian Lebow, Male 20 to 29 - Marc Hendel, Male 30 to 39 - Jason Coleman, Male 40 to 49 - Stephan Clark, Male 50 to 59 - Ron Haglof, Male 60 to 69 - no runner, Male over 70 - Leonard Busen
Largest Teams
The Bob Bleich Brigade had the largest team again this year with 65 participants. It was close this year with Ben and Brandi Akers (Team Sweetie Pea) coming in with 60 participants.
Thank you very much to all of you who assembled a team. It adds to the fun atmosphere to see large groups marching along with their team signs. |
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 Proud Winner
Thomas O'Brien gives a thumbs up after winning the top-prize bicycle at the 6th annual Lung Walk on October 16.
He attended the event with his grandparents, Tom and Jenni O'Brien. Tom received a lung transplant on November 16, 1999. Jenni is an I.C.U. pediatric nurs at St. John's Hospital in St. Louis. Thomas' parents are Jeremy and Mary O'Brien.
On the Friday afternoon before the Lung Walk, Thomas appeared on the televison show, "Show Me St. Louis" with his brother Alexander and his grandparents to promote the Lung Walk. |
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 November Transplant Anniversaries
By Jan and Larry Kwasigroh
As much as I hate to admit it the year is drawing fast to a close. The late fall rain brings the beautiful leaves down in a swirl and the towns that have leaf pickup for their residents have a big job ahead. Once the Halloween goblins are back in the closet then thoughts turn to Thanksgiving. The Thanksgiving holiday and the gi-mendous menus are a small part of this. Thanksgiving comes every month as transplant recipients and caregivers alike offer thanks to their donor and the donor family for the best gift anyone could ask for. The breath of life was a November gift to the following.
11 Years Tom O'Brien
11 Years Dick Wyatt
10 Years Dorothy Fogliasso
10 Years Mary Rademacker
10 Years Pam Simmonds
8 Years Jan Rueb
5 Years Christine Lobos Kahl
4 Years Rey Candia
4 Years Ina Dent
4 Years Larry Kwasigroh
4 Years Kim Morgan
4 Years Ralph Wilcox 2 Years Donna Byerley |
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Transplant Games
By Valerie Vandervort Boyer
Tx # 600 Barnes-Jewish Hospital
Double Lung
Cystic Fibrosis
I have attended the US Transplant Olympic games five times, but this is the first year my donor's family, Stacey and Kevin Oglesby, were able to attend and watch me compete. The feeling of them being there was AMAZING. We -- my donor, Colbey and I, won a bronze medal in the 50 meter backstroke swimming event, with Stacey and Kevin there cheering us on. I am blessed beyond measure to have an extended family, and to be able to breathe, swim, run, live my life to the fullest everyday. The games help me to feel like I am using my lungs to their best ability and I connect with others who have also had transplants and who have some of the same feelings and experiences.  I just had my 9 year transplant birthday/anniversary on Oct 4, and pray I am allowed many more. Two topics I campaign for are organ donation and Cystic Fibrosis research. I often speak to groups, bringing organ donation and CF into my speech. For without my donor's family decision I would not be here today. I was born with Cystic Fibrosis, diagnosed when I was 6 1/2 weeks old. I believe without a doubt that I am who I am today, for all this was in God's plan to make me who I am; BLESSED! Thank You Colbey and The Oglesbys! |
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Calendar
November: National Marrow Awareness Month
November 14, 2:00 PM, Second Sunday Social at Chris' Pancake and Dining. SPEAKER: Dr. Bryan Emerson, Chiropractic Physician.
November: National Donate Life Month
December 12, SECOND WIND CHRISTMAS PARTY, 2:00 P.M. at Chris' Pancake and Dining. |
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