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| St. Louis Second Wind
Lung Transplant Association
Newsletter |
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Volume 11 Issue 3 March 2010
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Quick Links |
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Chris' Pancake and Dining
(314) 645-2088
Almost Home
Transplant Housing
(314) 503-5219
Bioscrip
Pharmacy
(314) 454-6686
(866) 899-8413
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My Kidney Transplant 
By Peter Nicastro
When I received my lung transplant in 1998, I received lungs from a CMV-positive donor. I was CMV negative. Throughout the first year after my transplant, I encountered recurrent CMV infections, treated successfully with ganciclovir and eventually with a powerful antiviral drug called Foscavir or foscarnet. Foscarnet is known to be a nephrotoxic drug, but no other alternatives were available.
It was several years later when I first started experiencing symptoms of end stage renal disease. Eventually I gained 40 pounds of water weight. I could barely move my knees, my feet had swollen and barely fit in my shoes, and I was not hungry but always sleepy. The last straw came when I fell and severely bruised my knees. When a biopsy was performed on one of my kidneys, fluid leaked from the biopsy hole for the next few days, something the nephrologists said they had not seen before. I started on dialysis in July 2002. In the first week in the hospital, I lost 30 pounds of fluid through dialysis.
My dialysis schedule was Tuesday, Thursday, Saturday. I would get to the dialysis clinic at 6:45, spend three hours on dialysis, and go to work during the week or home on Saturday. Fortunately, my job as a chemist gave my some flexibility over my schedule, and I arranged sedentary tasks on my dialysis days, and active tasks on the alternating days. Most people on kidney dialysis are on disability and do not work. I also had to carefully watch my fluid intake and eat a bizarre dialysis diet. The dialysis diet excludes all dairy; potatoes; and fruits like oranges, melons and bananas which are high in potassium and phosphorus, which are not removed in dialysis as they are by functional kidneys. It is a very unhealthy way to live!
Unlike lungs, cadaveric kidneys are first matched according to cell surface antigens, called HLAs. Everyone has six different HLA subtypes, in three categories, two from each parent. Greater matches lead to better post-transplant outcomes and organ survival. I was placed on the kidney transplant list, and awaited a match. There are many more people waiting for kidneys than for lungs. Of the 1,721 people on the waitlist in Missouri, 1,272 or 74% are waiting for kidneys, compared to 112 or 6.5% for lungs.
In 2005, my wife's sister's husband, George, agreed to be a living kidney donor for me. Living donor kidney donation usually has a better outcome than cadaveric donation, generally thought to be because of the much smaller amount of time the kidney spends outside a body. We went through the extensive testing together, and found that, although completely unrelated, George and I are a 2 / 6 HLA match, which was very good and statistically unlikely.
My kidney transplant was on July 7, 2005. George and I were set up in adjacent operating rooms, and the operation took two teams of surgeons and several hours. I was in the hospital for 6 days, then had some complications and returned for another five days a few weeks later. George, likewise, spent about a week in the hospital and a few days in the next week because of a complication. These complications resolved. My kidney function returned immediately to normal, and my serum creatinine levels have remained stable between 0.8 and 1.2 since then. My immunosuppression regimen was unchanged from before my kidney transplant. George has not had any chronic problems. We celebrated my successful transplant by going on a cruise. Crusing is very difficult while on dialysis because of the volumes and quality of water which dialysis requires.
I was married on August 2, 2003. My wife Ellen and I met when we were both chemistry students at Saint Louis University. She is a general pediatrician and works at St. John's Mercy Medical Center in Creve Coeur. We had twins on July 28, 2009. Peter, Jr., and Elizabeth are now eight months old, and while they are both CF carriers, they are healthy, hungry, happy babies. |
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We Remember
Mary Ann Barnes
February 25, 1941 - March 7, 2010
Mary Ann (Weisbruch) Barnes, 69, of Bloomington-Normal, formerly of Peoria, Illinois, passed away with loved ones by her side at her residence on Sunday, March 7, 2010 at 2:15 p.m.
Mary Ann was born on February 25, 1941 in Peoria to Bernard "Beno" and Mary Weisbruch. Loving mother of son Dan, daughters D'Joane (Nick) and Jennifer (Joseph); dear grandmother of grandsons, AJ and Nicolas, and step-grandmother to Melanie; loving sister of Daniel (Camie) Weisbruch of Peoria, sister Carol (Pat) Butler of TN, siste-in-law Kathi Weisbruch of Peoria; and a dear aunt and friend to many. She was preceded in death by her parents and one brother, Thomas.
She had a great sense of humor and was a loving mother and grandmother who enjoyed gardening, spending time with her family and friends, and playing with her beloved grandsons.
In lieu of flowers, memorials may be made in Mary Ann's name to Second Wind of St. Louis, 3440 Halliday Ave, St. Louis MO, 63118.
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We Remember
Carl Lynn Johnson, Sr.
October 6, 1946 - March 14, 2010
Carl Lynn Johnson, Sr., 63, passed away on March 14, 2010 at Valley Baptist Medical Center, Harlingen, TX.
Carl was born October 6, 1946 in St. Peter, Minnesota to Carl Edward and Eleanor Ruth Johnson. After graduation, he attended the University of Texas Pan American in Edinburg and proudly served his country in the U.S. Army during the Vietnam War. Carl retired from Citation Oil and Gas Company after many years of dedicated service.
Carl received a lung transplant at Barnes - Jewish Hospital on June 12, 2004.
He was a member of Christian Fellowship Church and was an advocate for Texas Organ Sharing Alliance (TOSA). Carl was a member of St. Louis Second Wind Lung Transplant Association.
Carl had a passion for classic cars and was a member and past president of the Antique Automobile Club of America-RGV Chapter.
He was preceded in death by his wife, Deborah Stapleton Johnson and parents, Carl Edward and Eleanor Ruth Johnson.
Carl is survived by his son, Carl Lynn Johnson, Jr; daughter, Kylie (Brandon) Kulwicki; brothers, Craig Johnson and Brian Johnson; and sister, Terri Drefke.
In lieu of flowers, Carl's family has requested memorial contributions be made to
St. Louis Second Wind Lung Transplant Association. Please make your checkpayable to Second Wind and mail to Second Wind, 3440 Halliday Avenue, St. Louis, MO 63118. |
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We Remember
John Dennis Burke
October 10, 1952 - March 1, 2010
Burke, John Dennis, 57 of St. Louis, MO (formerly of Oklahoma City, OK and Celina, OH) died March 31, 2010 on the Feast of St. Catherine Siena with the benefits of the Sacraments of the Church.
He is survived by his partner of 30 years, Thomas E. Archer; Brother, Robert Daniel Burke (Barbara), of Oklahoma City; Nephew, Robert Daniel Burke, Jr., of New York New York; and Niece, Cherie' (Tommy) Pendergraft of Oklahoma City.
John was born in Oklahoma City on October 10, 1952. He is preceded in death by his parents, Bobby "Bob" Donald and Ileene Beatrice (Pendergraft) Burke of Oklahoma City. He is a graduate of University of Central Oklahoma where he received a Masters degree in psychology. He also studied at St. Meinrad Benedictine Seminary in St. Meinrad, Indiana. He was a licensed Psychologist in private practice both in Ohio and Missouri. He was employed by the state of Missouri; Missouri Department of Corrections and St. Louis Developmental Disability Treatment Center. John was an adjunct professor of psychology for the University of Missouri - St. Louis and Wright State University - Celina, Ohio.
John was an avid reader and spiritual sojourner. He is a member of The Order of Carmel Discalced Seculars. He also enjoyed plants, gardening, cooking and raising Dachshunds. He will be missed by Adelbert "Brother" and Philomena "Saster" Burke - Archer.
A funeral mass followed by a reception will be held at Christ Church Cathedral in St. Louis, on April 24, 2010 at 3:00 PM. A mass and burial service will be held at Immaculate Conception Parish in Celina, Ohio on May 1, 2010.
In lieu of flowers, donations may be made to St. Louis Second Wind Lung Transplant Association, Inc., 3440 Halliday Avenue, St. Louis, MO 63118. |
| Organ Donor Check-Off
Donations to the Missouri Organ Donor Fund, mostly in $1 increments to Department of Revenue fee offices ("the DMV") received when registering a vehicle or renewing a driver's license, have fallen off in recent years, from a decade high of about $375 thousand in 2001, to a low of $98 thousand in 2006, recovering slightly to $148 thousand last year. THANK YOU to everyone who donated $1! Meanwhile, significant resources were used to develop www.missouriorgandonor.com, which is available 24/7 to Missourians wishing to join the registry, check, change, or cancel their registrations.
There are several possible reasons for the decline in donations. Undoubtedly, the tough economic climate has everyone counting his or her pennies. Additionally, changes to the vehicle registration process - cars now need be registered every two years - meaning that contributors have fewer opportunities to donate. There is competition at the DMV counter from the Fund for the Blind and the WWII Memorial Fund. It doesn't seem that fee office clerks consistently ask customers to donate. Also, fee offices can only accept donations of $1, and no other amount.
HB 2325 was introduced in the Missouri House by Rep. Chris Kelly (D-Columbia). The bill would allow Missouri taxpayers to contribute a portion of their tax refund to the Organ Donor Fund. This would give each Missourian an annual opportunity to support organ donation in any amount. Please contact your State Representative and Senator today and ask them to support the passage of HR 2325 and sustainability of the organ donor registry.
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March Transplant Anniversaries
 By Jan and Larry Kwasigroh
The Weather Man is trying to keep this cool weather around for this Midwest family but Mother Nature is playing her trump card and winning the battle. Flowers are beginning to poke up through the soil, I don't have to turn on my electric blanket, and I actually saw jonquils waving in the breeze! Even though April starts with April Fools Day, there's no trickery for the following transplant recipients. Flowers and fresh air to each of you.
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 Treasurer's Report
By Linda Nottestad
Because of your generosity Second Wind provided $6,930. in assistance during March. The payments were for lodging in St. Louis, travel expenses, insurance co-pays, and medicine.
Memorials for Mary Ann Barnes
The Barnes Family, Ron and Becky Dunker, Cindy and Jon Henning, Larry and Jan Kwasigroh, Kristen and Edgar Lay, Katherine and Erik Maurer, The Mottler Family, Michael and Kelley O'Neil, Carole and Donald Owen, Mr. and Mrs. Sherman Peck, Scott and Donna Rogers, Fritz and Sherry Weisbruch, Tom Archer
Memorials for Denise Oravez
Gail and Frank Baldino, Larry and Nan Barton, Jeanette and Hugh Lamonaca, Lois and Leon Fox, Mary and Craig Fox, Richard and Virginia Gance, Linda and James Laverty, Judith McCormick, Joann and Daniel McGaughey, Jacqueline and Thomas McGlone, Elizabeth Mellor, Deborah Oravez, Thomas and Elizabeth Oravez, Rosalind and Stephen Pendergast, Francis and Maria Ranalli, Mark and Kathleen Rickart, Kathleen and Raymond Sarnacki, Lori and Stephen Schermerhorn, Kathryn and Rex Van Winkle, Tom Archer
Memorials for Cynthia Curtis
John and Judy Ludwig
Memorials for Mary Ann Durant
John and Judy Ludwig
Memorials for Betty Champlin
Tim Belford and Dave and Rita Potochick
Memorial for Denny Klaas
Christian Fellowship of Jefferson City Missouri
Honorarium for Ken and Linda Nottestad
Winston and Marietta Carron
Welcome to New Members
Jack and Kay Crump and Khalil and Roxanne Hmid
Thank You to Members Who Paid Their Dues
Tony Brown, Sharon and Dick Kelly, Patrick and Sandra Randolph, Judith Rice, Joel and Jodi Wright
Special Thanks to Members Who Made a Donation with Their Membership Renewal
Tony Brown, Sharon and Dick Kelly, Judith Rice
Reminder Regarding Matching Donations
Some of our members are affiliated with companies which make matching gifts. In the past 12 months we have received matching donations from Monsanto, Pfizer, and Chase Bank to name a few. Please check with your place of business to see if they will match your donations to St. Louis Second Wind Lung Transplant Assoc.
|  Photo Gallery By Gary Brandenburger
We have lost John Burke, a very dear friend and supporter. I know from my own losses that no words can adequately convey the depth of grief and sorrow that Tom Archer is experiencing. In place of words, I and all who have known John and Tom may hold them both in our thoughts, our hearts and our prayers.
This month I have added photos of John to our Flickr library to
honor and remember this kind, gentle man.
Please click below to view the images of John.
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 Caregiver's Corner
Caregiving affects everyone's life. Former First Lady Rosalyn Carter has stated that "There are four kinds of people in the world: Those who have been caregivers; those who currently are caregivers; those who will be caregivers; and those who will need caregivers."
As a caregiver you carry a heavy load helping loved ones manage details of living as well as assisting throughout the day with all forms of need, from making sure medications are taken to just getting around. And your Enemy Number One is Stress. Stress can affect your health, cause depression and influence your immune system.
The following 5 tips will help you stay well, physically, mentality and emotionally.
1. Do something just for yourself every day whether it is reading, phoning friends, exercise, or working at a craft.
2. Watch for signs of depression. Having trouble sleeping, low in energy, feeling helpless or hopeless are a couple of signals. Don't delay talking to your doctor. We aren't made of concrete and the doctor will help you "over the hump."
3. When people offer to help, accept it! Having a meal brought in occasionally or letting someone get your groceries means you can let them feel good about helping and you have some time for Tip #1!
4. Eat healthy - not just snack or fast food. Your food is your fuel and medicine so chose balanced and nutritious meals.
5. Be open to ideas that encourage your loved one's independence. Doing as much as possible for themselves will lessen the stress you are under and also the stress your loved one feels being dependent.
I will have 5 more tips next month meant to keep us well, physically, mentality and emotionally.
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 CALENDAR
April: National Donate Life Month
April 11, 2:00 PM, Second Sunday Social at Chris' Pancake and Dining.
May 9, 2:00 PM, Second Sunday Social at Chris' Pancake and Dining.
June 13, 2:00 PM, Second Sunday Social at Chris' Pancake and Dining.
July 11, SECOND WIND PICNIC - Tower Grove Park, located in St. Louis City.
August 1: National Minority Donor Awareness Day
August 8, 2:00 PM, Second Sunday Social at Chris' Pancake and Dining.
September 12, 2:00 PM, Second Sunday Social at Chris' Pancake and Dining.
October 10, 2:00 PM, Second Sunday Social at Chris' Pancake and Dining.
October 16, 2010, LUNG WALK in Forest Park.
November: National Marrow Awareness Month
November 14, 2:00 PM, Second Sunday Social at Chris' Pancake and Dining.
November: National Donate Life Month
December 12, SECOND WIND CHRISTMAS PARTY, Chris' Pancake and Dining. | |
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