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| St. Louis Second Wind
Lung Transplant Association
Newsletter |
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| Volume 10 Issue 11 |
November 2009 |
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Dear Members, Family and Friends,
The highest reward for a person's work is not what they get for it, but what they become because of it.
This is one of my favorite quotes attributed to those who volunteer. All who volunteer to help those who Second Wind Lung Transplant Association serves can stand proudly when they read this quote as it is about each of you.
No matter the way in which you help, no matter how often you are able to help, no matter from where you help, together you make up the tapestry that is St. Louis Second Wind.
Some of our volunteers help by praying for those who are waiting for a transplant. Some appear on Friday afternoon prior to the Lung Walk to make preparations. Some volunteers take on positions as members of the Board of Directors. Others make phone calls or assemble and mail membership notices. Some of our volunteers attend the monthly socials at Chris' to listen and offer words of encouragement and support. Others, including those listed above, support the association through memorials and and other financial contributions.
At the end of our life our questions are simple: Did I live fully? Did I love well?
Healthy Regards,
 Tom Archer 314.664.6360
1.888.855.9463
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Ramsey R. Hachem, M.D. Washington University School of Medicine 
Barnes-Jewish Hospital
Division of Pulmonary and Critical Care
Ex Vivo Lung Perfusion The number of lung transplants performed annually has increased significantly in recent years. In fact, over 1,400 procedures were performed in the United States in 2007 compared to less than 1,000 procedures in 2000. However, the number of lung transplants performed remains substantially smaller than most other solid organs. For example, over 16,000 kidney transplants were performed in 2007 and over 10,000 of these were from deceased donors. This is in part because two kidneys are usually retrieved from one deceased donor for two recipients, whereas two lungs are often retrieved for a single recipient. Indeed, bilateral lung transplants are performed for approximately 60% of recipients in the United States. Nonetheless, even after accounting for the number of bilateral procedures, the disparity between the number of lung and kidney transplants performed is still striking. Furthermore, in liver transplantation where a single organ is retrievable from each donor, over 5,500 liver transplants were performed from deceased donors in 2007. The difference in the number of lung, liver, and kidney transplants performed is driven primarily by differences in donor organ utilization rates. Approximately 75% of potentially recoverable kidneys and livers were transplanted in 2007 compared to less than 20% of lungs. In other words, kidneys and livers can be retrieved and transplanted from approximately 75% of donors whereas lungs can only be transplanted from less than 20% of donors. Lungs are most susceptible to injury after brain death, such as neurogenic pulmonary edema, aspiration, pneumonia, or ventilator induced lung injury, and this renders most organs unsuitable for transplantation. Yet, the death rate on the waiting list is significantly higher for patients awaiting a lung transplant (125 deaths per 1,000 patient-years at risk) than for those awaiting a kidney transplant (65 deaths per 1,000 patient-years at risk). Clearly, retrieving lungs from a greater proportion of deceased donors would increase the number of transplants performed and reduce the death rate on the waiting list. Ideally however, this should not compromise donor organ quality.
Over the past several years, there has been growing research in the field of ex vivo lung perfusion, or perfusing the lungs outside of the body. After retrieving lungs from the donor, a standard ventilator is used to inflate them using relatively low pressures and oxygen concentrations to avoid overdistention and further lung injury. The lungs are then perfused with a mixture of a special preservation solution and red blood cells. Using this system, lungs can be maintained for up to 12 hours, and this allows additional time to assess their suitability for transplantation. More importantly, some interventions can be implemented to improve lung function and convert unsuitable organs into lungs suitable for transplantation. For example, the tonicity of the preservation solution can be altered to remove edema fluid from the lungs via diffusion into the perfusion solution. This would be beneficial in cases where lungs have been injured by neurogenic pulmonary edema, a common complication after brain death. Furthermore, maintaining donor lungs at normal body temperatures would preserve the necessary cellular metabolism for endogenous reparative processes that are inhibited by hypothermic storage. Theoretically, this would allow an injured lung to partially repair itself. Most of this encouraging research has been performed in animal models. However, a Swedish group reported their early clinical experience using this technique. The group was able to successfully recondition six of nine pairs of lungs initially deemed unsuitable for transplantation, and these six pairs of lungs were transplanted into six patients. All recipients survived three months after transplantation indicating adequate early pulmonary function, but two recipients died in the first year after transplantation of apparently unrelated causes. This early experience with this technique is encouraging, and a multi-center clinical trial is planned in the United States.
The real impact of ex vivo lung perfusion on donor organ utilization, the number of transplants performed, and long-term outcomes after transplantation remains to be seen. However, this technique offers the possibility of addressing the donor organ shortage that has limited a more wide spread use of lung transplantation.
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| Welcome New Board Members
Welcome Amanda Helderle
We are proud to introduce to you two new members of the St Louis Second Wind's Board of Directors; Marian Frentzel and Amanda Helderle. We have asked each of them to introduce themselves to the members of the organization.
 My name is Amanda Helderle. I am 33 years old and have had a roller
coaster ride of a life so far. However, it is wonderful that my life has started to level out a bit. To begin, I was born with a genetic lung disease called Cystic Fibrosis (CF). At the time of diagnosis my life expectancy was 6 years and it gradually increased as I got older; I am now 33 and living a life that I never expected to live. My life began to change when I moved to Los Angeles to be listed on USC's lung transplant list. After being listed on the lung transplant list for a couple of years I received the call I had being waiting for...the call that would save my life. On May 12, 2004 I was called and told that I should arrive at USC's ICU as quickly as possible. Later that evening my two gorgeous pink lungs were placed inside me.
Eventually, I affectionately named my lungs Mike 'n Ike for my favorite candy that I could no longer eat because of the development of steroid induced diabetes. Me, Mike 'n Ike and my beloved dog traveled all over Southern California hiking, running, surfing, skating, swimming and anything else that required deep breathing. I felt that since I received this gift of life I should enjoy everything possible. Additionally, I began taking classes at the local community college. From the first class I took (History of California), school just felt right. I continued to take classes at the community college in Santa Monica until I began to miss my family. In August 2006, I left California to travel by car from the west coast to the midwest via Highway 44. The drive was an amazing 18 day road trip! From L.A. to San Francisco, south through Redwood National Forest, Yosemite, Arizona, New Mexico and more. It was truly an amazing trip. I arrived back in St Louis greeted by my family, and I have been living here and going to school since my arrival. I hit some bumps in the road in 2007 when my body began to reject Mike 'n Ike. Luckily, I was once again listed on the lung transplant list only this time at Barnes-Jewish Hospital. I was transplanted only three months later on February 14, 2008. While I have had many ups and downs with being an organ recipient, my life has been quite interesting and challenging to say the least. I have managed to make it this far and do not plan on stopping now. Currently, I spend much of my time in school and volunteering for several different organizations. I have a wonderful support network of friends and family that encourage me to continue to fight no matter what happens. I feel truly thankful for every moment I am given!
Welcome Marian Frentzel
All About My Lungs St. Louis has been home to me all my life. I went to Beaumont High School, Washington University School of Fine Arts, University of Missouri St. Louis, married, raised my three children, my grandchildren were all born here, worked at Ralston Purina, and above all, received a double lung transplant at Barnes Jewish Hospital on July 6, 2006. All in St. Louis, Missouri. I was diagnosed with chronic rheumatoid arthritis 20 years ago in my early 40's. I became less and less active due to the pain and deformity of my wrist, hands, knees and feet... Many medications (gold injections, methotrexate, Naproxen, Cox-2 Inhibitors) were used all the way up to acupuncture, which gave me the most comfort. My husband and I divorced after 24 years of marriage. I was a smoker, and successfully quit in 1999, after many failures. Dr. John Best, my pulmonologist from St. Luke's Hospital told me I was suffering due to the beginning of COPD in 2002. Along with taking rehab at St. Luke's Hospital and using acupuncture to ease the pain of rheumatoid arthritis everything was generally uncomplicated. But within 1 year I was hospitalized with a respiratory infection. After a virus recurring again and again I was put on oxygen 24/7 in 2004. As time went by, I required more and more oxygen and became weaker and very fragile. I was evaluated for a double lung transplant in Sept 2005 at Barnes Jewish Hospital and was listed March 1, 2006. I battled panic attacks, depression and fear of the unknown along with being sick. My daughter Karrie was a huge help being my significant caregiver of my family. Betty Wallace helped so much by introducing me to Second Wind of St. Louis, taking me with her to Barnes Support Group, and even taking me with her to church. On Thursday July 6, 2006 I got the call from Barnes to go pick up my new lungs. My surgery started at 9 PM and was in ICU by 2 am Friday morning. I was on a breathing tube and ventilator over night and by 7:30 am I was extubated (with ventilator and breathing tube removed). Before surgery my lung function was 12% and 7 weeks later it was 90%. I have continued to do well after almost 3.5 years. Immune depressive drugs I take for my transplanted lungs, has nearly ended discomfort and further damage from rheumatoid arthritis. Every day is a gift because of my donor family and the miracles of medical science. Each of these wonderful factors hasn't much value without each other. I am enjoying and thankful for my remarkable life. I am probably the only 65 year old woman who feels happy about her age. I feel well and want to give back any way I can. |
CHRISTMAS PARTY
Please join us as our guests for our Annual Second Wind Christmas Party on December 13, 2009 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 PM with a 30 minute social and beverage time followed by dinner consisting of three entrees you can choose from, a salad, baked potato, mixed veggies, and cake & ice cream.
To make reservations please contact: Tom Archer 3440 Halliday Ave. St. Louis, MO 63118 314.664.6360 tea3440@sbcglobal.net We will need the following information: Your name, number of reservations, and your telephone number. Reservations must be received by December 10, 2008. We are looking forward to celebrating the holidays with you! Second Wind Board Members: Annette Carr, Linda Nottestad, Gary Brandenburger, Josh Stegeman, Marian Frentzel, Amanda Helderle and Tom Archer
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| LOVE OFFERING
Dear Sir,
Enclosed is a check for $800.00 as a donation to help lung transplant patients. We have a church member that has just had a lung transplant. His name is (name with held) and his wife (name with held) brought this association to our attention. We are very happy to be able to help with this. We also know that a lung transplant is very expensive for recipients and their families. This is a just a drop in the bucket. We hope it will help a little.
God Bless All of You,
Sadie Humphreys
Jackson Chapel Church
Wingo, Kentucky
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Treasurer's Report
By Linda Nottestad
Because of your generosity Second Wind provided $1,223.34 in assistance during November. The payments were for lodging in St. Louis and insurance copays. We Need Your Help to Reach Our Lung Walk Goal - We Are $5,500. Short Our goal this year is to raise $40,000. in assistance funds for patients in need. To date we have received $34,442. This is our primary fundraiser for the year. We know many of you were not able to participate physically in the Lung Walk, but, please consider making a donation to help us reach our goal. Welcome New Members (Fred) Sherrill and Shelia Lee from Mayfield, KY. Fred was transplanted 10/5/09. Barbara and Joseph Kramer from Kimberling City, MO. Barbara was transplanted 10/19/09 Memorials In Loving Memory of June Feltz James Graves Mike Bendele Amber and William Slade Stan and Pat Zielinski John and Bonita Parry Billy Baker Bob Johnson Brad and Donna Maitland Danny and Tammie Roth Richard and Sharon Kidwell Gerald and Garnett Rinehart Frederick and Brenda Woodrell Thomas and Karen Taylor Denise and Frederick Johnson Cindy Spears Christina and Carl Hopkins Patricia Foester Kenneth and Dorothy Hylton Debra LaFleur Stephanie Duarte Louis and Kathryn Francis Tom Platnico Michael Goldwasser T.C. and Nancy Williams Carole Tholborn
Tom Archer In Loving Memory of Renee Haven Michelle and Jerry Gillman - Message: In honor of the second anniversary of her passing. "We love you and miss you very much. Love, Mom and Dad." In Loving Memory of My Dear Friends of Second Wind Who I Came to Know through this Wonderful Organization.
Betty Wallace, Joy Warnecke, Debbie Ratliff, Annie Archer, Renee Haven, Sharon Miller, Jennifer Sutton, Laura Riggin Brandenburger, Jack Richie, Joe Dougherty and Mike Smith from Gary Porte Psalm 103: 15-16 As of man, his days are like grass, He flourishes like a flower of the field, The wind blows over it and it is gone.
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Caregiver's Corner -- An Unscientific Response By Jan Kwasigroh
I have been corresponding via e-mail with a transplant caregiver in the Boston, MA area. Her husband was transplanted about a year ago and, like a lot of us, has had some "bumps in the road to recovery." One of the reoccurring concerns is that he doesn't exercise enough and she doesn't know how to get him motivated. The doctors in the Boston area as well as here in St. Louis all stress the importance of exercise. Not only does this aid in the healing process but the increased blood flow strengthens the lungs. As caregivers we can see that they get to rehab after surgery on a regular schedule and even walk with them in the neighborhood or at the mall. Wearing a mask at the mall is a good precautionary measure to be protective of the immune status. Once the rubber legs begin to firm up a bit some transplantors' get to feeling "almost normal" and begin to slack off on their exercise plan. Of the folks in the group we bonded with in St. Louis I saw a full range of attitudes. Some got out and walked, and walked and walked! Others did what they needed to and not much more. And then there were those who hated to exercise and chose to do almost nothing once home. It's this group that I find myself a part of. Veiled comments, pointed suggestions bring an "I know, dear." Response but not much action. So I have left the nagging couch and relinquished ownership of the problem. It's not that I don't care but like other habits, he's got to want to do it first. I realize this is in no way a medical or scientific answer. Just a reality check. So hug 'em and love 'em and be there because you are needed.
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WE REMEMBER YOU
October 22, 1936 - November 10, 2009
Darlene M. Daurelle, 73, of Maquoketa died Tuesday, November 10, 2009, at the Clarissa C. Cook Hospice House in Bettendorf, Iowa. Funeral services were held at 7 p.m. at Pape Funeral Home in Clinton. Burial was held in St. Irenaeus Calvary Cemetery.
Darlene was born in Clinton, Iowa, on October 22, 1936, the daughter of Vincent and Magdalyn Determan Whalen. Darlene graduated from St. Mary's High School. She married Arthur Daurelle on October 6, 1956, in Clinton. Darlene had worked at Charlie's Supper Club, the Port Hole and Interstate Power Company. She was a member of Faith Community Church in Maquoketa. Darlene enjoyed watching her grandchildren play sports, bowling, reading and watching movies.
Darlene was a member of St. Louis Second Wind Lung Transplant Association. She received a left lung transplant at Barnes-Jewish Hospital on October 12, 2002
Darlene is survived by two daughters, Vickie Logan, of Long Grove, Iowa, and Kathy (Kevin) Holle, of Bettendorf; two sons, Michael Daurelle, of Cape Coral, Fla., and Tom (Alison) Daurelle, of Maquoketa; nine grandchildren, Chris, Shaun, Kimi, Tyler, Shelby, Miranda, Shannon, Haleigh and Cassie; and her brother, James (Carol) Whalen, of Davenport. She was preceded in death by her parents. Memorials may be made to the St. Louis Second Wind Lung Transplant Association, Inc. Online condolences may be sent to www.papefh.com.
Memorials may be made to the St. Louis Second Wind Lung Transplant Association, Inc.
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WE REMEMBER YOU
Robert Michael Smith
August 2, 1946 - November 12, 2009
Robert Michael Smith, United States Marine Corp, 63, of St. Louis, Mo. died Thursday, Nov. 12, 2009, at St. Louis University Hospital, after a lengthy illness.
He was born August. 2, 1946, in Evanston, Ill., the son of Robert and Martha Smith. He married Karen Richardson in Mount Prospect, Ill.; she survives.
Mike joined the U.S. Marine Corp in 1964 and served in special services. Mike was a photographer and made a career in auto sales.
Surviving also are his parents; four brothers, William E. Smith of Springfield, Ill., James K. Smith of Peoria, Ill., John J. (Jean) Smith of McHenry, Ill., David J. (Susan) Smith of Marengo, Ill.; and two sisters, Mary C. (Greg) McAllister of Eureka, Ill., and Sarah A. Barringer of Cypress, Texas. He leaves 10 nephews, two nieces, two great-nephews and two great-nieces.
He attended Holy Family School and graduated from Spalding Institute. A memorial Mass was celebrated at Holy Family Church at 11 a.m. Saturday, Nov. 21, with Father Michael Glastetter officiating.
In lieu of flowers, memorials may be made to St. Louis Second Wind Lung Transplant Association.
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Transplant Anniversaries
By Jan and Larry Kwasigroh 
We are closing out 2009 with a hearty congratulations to those celebrating their "Second Wind." Remember the donors and their families with heartfelt thanks and greet 2010 secure in the knowledge that we all are blessed. See you next year!
Jan and Larry
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