St. Louis Second Wind Lung Transplant Association
St. Louis Second Wind
 Lung Transplant Association
Newsletter
Volume 11 Issue  2

                    February, 2010 

In This Issue
Osteoporosis in lung transplantation
We Remember Denise M. (Oravez) Metto
We Remember Cynthia "Cindy" Curtis
Treasurer's Report
Photo Gallery
March Transplant Anniversaries
IPF gains SSA recognition
Caregiver's Corner
A Note From a Member
CALENDAR
Quick Links
 
 
Our Sponsors
 
 
 
 
 
 
Dear Members, Family and Friends,
 
Last week, when the weather outside was frightful, I accepted my own Olympic challenge to clean-up the "stuff" on my desk.  I found myself moving from one pile to another and making no headway to the clean and orderly desk-top I have trained 40 years of my life to achieve.
 
There was no method to the madness of putting things where they belong and throwing away those things I couldn't even remember saving. I ran into one steep down-hill slope as I open a cabinet door to shelve the last couple issues of Airways, the National Second Wind newsletter. I couldn't get one more sheet of paper on the shelf. My task was clear --- organize these news-letters.
 
I grabbed a hand full and as I pulled them off the shelf the entire stack created an avalanche of newsletters across my office floor. I had not trained for this challenge. I  gathered them in haphazard stacks and trudged to the dining room table for the next Olympic challenge of putting them back in sequential order. I did catch a break, the first Airways staff began the tradition of stapling each issue. 
 
Individual articles and columns caught my eye as I sorted through 17 years of newsletters. The first issue was published by The Lung Transplant Support Group of St. Louis Missouri. The  headline read, "Wow!!! 5 in One Week." The article by Nancy Camp and Sara Munday chronicled the transplants of five Barnes patients between September 30 and October 5, 1993.
 
Over the years the news letter covered topics important to all of us, Organ Donation, Rejection After Lung Transplant, Pulmonary Rehabilitaion, The Lowdown on Ports, US Transplant Games, Life After Trasplant, Medicaitons, Infections, Weight Management, Photopheresis, Transplant Stories and others.
 
The first editor, Steve Love, wrote in the premier issue of October, 1993, This is your paper... let us hear from you...we also need to know what information you would like. It is true, the more things change, the more they remain the same. We would love to hear from you.
 
 
Warm Regards,
 

Tom Archer, President
(314) 664.6360
(888) 855-9463
Ramsey R. Hachem, M.D.                                               
Washington University School of Medicine
Barnes-Jewish Hospital
Division of Pulmonary and Critical Care 
 
 

Osteoporosis in lung transplantation

 

          Osteoporosis is a skeletal condition characterized by a reduction in bone mineral density and alterations in bone architecture and consistency resulting in an increased risk of fractures, including spontaneous ones.  Osteoporosis is an important medical complication for the transplant patient because the immunosuppressive regimen, particularly prednisone and steroids in general, contribute to bone loss.  The World Health Organization (WHO) defines osteoporosis as bone mineral density 2.5 standard deviations below peak bone density.  Normally, the bony matrix is continually being remodeled, but the fundamental problem in osteoporosis is an imbalance between bone formation and resorption that results in decreased bone density over time.  The diagnosis of osteoporosis is established by measuring bone mineral density using a radiology test called dual energy x-ray absorptiometry, or DEXA scan.  

 

In general, post-menopausal women have the highest risk of osteoporosis, but the disorder can affect men and women of all ages.  A significant proportion of patients have osteoporosis before transplantation because of chronic steroid use, low body weight, smoking history, physical inactivity, and vitamin D deficiency.  Other predisposing factors include malnutrition and malabsorption of vitamin D, especially in patients with cystic fibrosis.  In severe cases, osteoporosis may sometimes be a contraindication to transplantation since it is expected to worsen after transplantation.  This is especially true if the patient has had multiple vertebral compression fractures or a hip fracture since these can be very disabling.

 

 Therefore, prevention and treatment of osteoporosis are critical to better bone health.  Non-medical therapy is a straightforward but essential component of treatment.  This includes a healthy diet with adequate supplies of calcium and vitamin D.  The total recommended amount of calcium is 1500 mg daily; this includes dietary intake and supplemental calcium.  The recommended amount of vitamin D is 800 IU daily, but higher doses are necessary if the patient has malabsorption or is vitamin D deficient.  Weight-bearing exercise is another important non-pharmacologic treatment of osteoporosis.  The minimum recommended exercise regimen to derive a beneficial effect is 30 minutes three times weekly.  In a large study of post-menopausal women, those who exercised 4 hours per week had a 40% lower risk of hip fracture than those who exercised less than an hour a week.  Smoking cessation is strongly recommended for everyone in general, but smoking also accelerates bone loss.  This is an additional risk factor for osteoporosis among past smokers.  These measures should be adopted for all patients who have osteoporosis or are at increased risk for the disorder.  However, these lifestyle modifications alone are not sufficient for those who have osteoporosis and an increased risk of fractures.  Such patients require pharmacologic therapy for osteoporosis.

 

          Bisphosphonates are a class of drugs that inhibit bone resorption and are widely used for the prevention and treatment of osteoporosis.  This class of drugs includes alendronate, risedronate, and ibandronate, among others.  By inhibiting bone resorption, they increase bone mass and reduce the risk of fractures.  Numerous randomized controlled trials have demonstrated significant reductions in the risk of fractures for these drugs when compared to placebo.  Bisphosphonates are poorly absorbed when taken orally and must be taken on an empty stomach.  Additionally, the drug should be taken with at least 8 ounces of water, and the patient should stay upright for 30-60 minutes to reduce the risk of esophagitis.

 

           Many patients have hypogonadism before transplantation as as result of chronic illness, malnutrition, or prednisone use, and this contributes to the risk of bone loss.  Unless contraindicated, hormonal replacement with testosterone for men and estrogen-progestin for women can alleviate bone loss.  However, the use of estrogen is no longer considered a first-line treatment for osteoporosis among post-menopausal women because of an increased risk of cardiovascular disease and breast cancer.  Another class of hormonal agents, known as selective estrogen receptor modulators, include raloxifene and tamoxifen.  These do not have the same risk profile as estrogen, but can be effective for osteoporosis prevention although their efficacy is inferior to bisphosphonates.  Unlike other agents that inhibit bone resorption, teriparatide (Forteo) is a parathyroid hormone that stimulates bone formation and reduces the risk of fractures.  It is administered as a daily injection.  However, its use is limited to a maximum of two years because an increased risk of bone cancer was noted in animal studies, although this has not been observed in humans.

 

          Osteoporosis is a serious condition that can result in disabling symptoms and adversely affect quality of life after lung transplantation.  However, lifestyle modifications and medical therapy can improve bone health and mitigate the impact of osteoporosis on outcomes after transplantation.

 
 
 

We Remember

Denise M. (Oravez) Metto
 
 December 10, 1947  -  February 14, 2010
 
      Denise M. Metto died on Sunday, February 14, 2010. She
is survived by her beloved husband of 23 years, Paul Metto.
 
     
She was the loving mother of Nicholas Taraborelli (Christina) and Gina Hernandez (Henry); adoring grandmother of Alessandra, Ava and Paul; and devoted sister of Jeffrey and Ronald Matteo.
 
     
Denise received a lung transplant at Barnes-Jewish Hospital on July 21, 1994.
 
     
Denise's husband has requested contributions in Denise's honor be made to St. Louis Second Wind Lung Transplant Association, Inc. Checks made payable to "Second Wind" may be mailed to 3440 Halliday Avenue, St. Louis, MO 63118.
 
      Contributions will be used to provide financial assistance to lung transplant patients at Barnes-Jewish and St. Louis Children's Hospitals.
 
 
 

We Remember

Cynthia "Cindy" Curtis
 
February 15, 1969 - February 24, 2010
 
      Cynthia "Cindy" Curtis passed away on February 24, 2010, at the Barnes Jewish Hospital, St. Louis, Missouri.

      She was born on February. 15, 1969, in Carthage, Missouri. Cindy was the daughter of Richard Capps and Sarah "Bryant" Capps and the late "James" Jim Klice. Cindy enjoyed participating and attending antique car shows with her husband showing off their 1971 Chevelle, fishing and gardening.

      Cindy married Robert Curtis on June 29, 2002, at the Mount Moriah Church in Carthage, Missouri. He survives. She is also survived by her father Richard Capps of Port St. Lucy, Florida and mother Sarah James of Joplin, Missouri; father-in-law Bob Curtis of Carthage; one son Michael Hamilton of Joplin, Missouri, and one daughter Jesica Franklin of Webb City, Missouri; three  brothers Rick Capps of Baxter Springs, Kansas,  Larry Capps and Mark Capps both of Carthage, Missouri; two sisters, Mandy Hollcof and Angel Capps, both of Atlanta, Georgia; one grandson Jeremiah Hamilton.  

      Cindy is preceded in death by her dad James "Jim" Klice and mother-in-law Jean Curtis. 

 
      Cindy received a lung transplant on July 18, 2009 at Barnes Jewish Hospital.
 
      Memorial contributions may be made to Second Wind Lung Transplant Association. Please make your check payable to Second Wind and mail to Second Wind, 3440 Halliday Avenue, St. Louis, Mo 63118.
 
Contributions will be used to provide financial assistance to lung transplant patients at Barnes-Jewish and St. Louis Children's Hospitals.
 

Treasurer's Report
By Linda Nottestad
 
      Because of your generosity Second Wind provided $8,887.72. in assistance during February.  The payments were for lodging in St. Louis, travel expenses, insurance co-pays, and medicine.

 

Memorials for Betty Champlin

 

Richard, Lois, Ardith, and Kevin Champlin; Shelley and Richard Champlin; Marian Frentzel; Ray Henrich; Carl and Mary Kothe; Larry and Jan Kwasigroh; Ken and Linda Nottestad; Mame and Randy Nowlin; Proctor and Gamble St. Louis Division; Ron and Margarete Wilson, Tom Archer

 

Memorials For Gary Vescovo

 

Sally Balmes, Jacqueline Blume, Chuck Link, Steven and Olene Lux, Diane and Daniel Mounce, Dr. and Mrs. Stephen Ross, Laura Schlapprizzi

 

Thank You to Members Who Paid Their Dues

 

Kathy Bennaka, James and Diane Cooper, Josie Dunnavant, Sharon Fricke, Sue Harnett, Ray Henrich, Mary Beth Houser, Larry and Jan Kwasigroh, Christine Lobos Kahl, Peter and Robbie Martin, Marion Peck, Father Michael Randolph, Josh and Amanda Stegeman, Victoria and Ted Staten

 

Special Thanks to Members Who Made a Donation with Their Membership Renewal

 

James and Diane Cooper, Josie Dunnavant, Christine Lobos Kahl, Marion Peck, Father Michael Randolph, Josh and Amanda Stegeman

 

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 Second Wind Lung Transplant Association.

  
 
 Photo Gallery 
 By Gary Brandenburger
 
You'll find a hodgepodge of items from 1999 to the present, including of course t-shirts plus trophies, signs, cakes, logos, the recipient signature banner and even a bumper sticker. The photo of the display window in the Center for Advanced Medicine at BJC from 2004 contains our transplant recipient quilt, a poster listing all the lung & heart-lung recipients at that time and yes, t-shirts. Like all our photo sets in Flickr, new photos will be added in the future.
 
Of course, if you have photos you would like to add to our library, simply
email them to: secondwindstl_pix@yahoo.com and please feel free to email
suggestions or requests for our photo library too.

 
 March Transplant Anniversaries
 By Jan and Larry Kwasigroh
 

      I am so ready for sunshine, longer days and no more wind chill factor in the weather updates! I truly enjoyed the snow days when everything came to a halt for a day or two.  Forced relaxation I call it.  But now I am ready for the signs of renewal - flowers popping through the cold, moist dirt; mud replacing snow and ice, and getting up to glorious sunrises.

 

      March is notorious for "in like a lamb, out like a lion" or visa versa, but for those that received their transplant in March the wind and weather takes a back seat to breathing easier and enjoying all the joys of Spring.  Happy anniversary!

 
       

IPF gains SSA recognition

By Joshua Stegeman

 

Do you know what IPF is?  It stands for idiopathic pulmonary fibrosis.  Why is it important to know about this?  The Social Security Administration recently added IPF to its list of "Compassionate Allowances".

 

What does this mean for sufferers of IPF.  It means being approved for benefits in a matter of days rather than months or years.  It also means that since applicants with these diseases will be "fast-tracked" for benefits, it affords examiners more time to closely evaluate other applications, especially determining applications involving respiratory conditions.  Beginning March 1, 2010, the Social Security Administration will begin screening for these new conditions.  Applicants will still need to wait the full 24-month period for Medicare benefits, but will at least receive disability benefits almost immediately.

 

The Coalition for Pulmonary Fibrosis, which is a member of the National Organization of Rare Diseases, played a vital role in supporting the inclusion of IPF on the Compassionate Allowances.  You can visit their website for more information at www.coalitionforpf.org.  

 

The Compassionate Allowances list was created by the Social Security Administration in October 2008 to expedite claims for 25 rare diseases and 25 cancers.  In addition to including IPF, Social Security also added 37 other conditions.  For more information about the diseases and conditions included on the list you can visit www.socialsecurity.gov/compassionateallowances

 

 

 Caregiver's Corner 
  By Jan Kwasigroh
 
      2010.  Sounds like something far off but it is now the present and doesn't seem any different as 1998 or 1985.  Yet lots of life has entered our memory books and, as always, hopeful for many more years in that book.

 

      This is the time to change the scenery.  Go to the mall and walk a bit then sit and people watch.  What an education in styles and the new hair colors!  Grab a to-go sandwich, eat in the car and watch the drivers as they go on their merry way.  I tried to count cell phone users but gave up -- there were too many! How about going to the library and look over the latest books, checking out the most interesting ones? 

 

      But my favorite mood shifter is to get my hair done.  Many feel they can do it themselves just as well and probably they can.  But there's just something relaxing about the water pouring over your head as you lie back and relax and let someone else massage those worries away.  And this is good for guys and gals alike!    Pamper is the word here and that's a mood picker upper for sure.

  

     Email me at LKwasigroh@aol.com and let me know what ways you use to keep the moody blues at bay! 

 
 A Note From a Member                                     
 
Tom,
 
      I just got around to reading my Second Wind Newsletter and wanted to respond. I so appreciate the efforts that you and other Second Wind people make to keep all of us in touch.  

      I'm afraid that what I'm doing with my new lungs is nothing impressive--I take care of my mom. Of course, it's a blessing to be able to do that (I was afraid it would be the other way around!) but I am running no marathons and filling no important posts. This is what I need to do, though, and I am grateful to be able to do it.

      My son and daughter and their families took me to Disney World last March, to celebrate the fifth anniversary of my transplant. Here, an old friend helps me celebrate.
 
     I want to reach out to everyone in Second Wind to offer my feelings of joy and gratitude. My beautiful lungs have been making my life a miracle now for six years (on February 26). For those who are struggling, I send encouragement. For those we have lost, I offer my prayers. For those of us blessed with good times, I say, LIVE GENEROUSLY!!! 
 
Love,
Susan Milligan
 
 

CALENDAR

March: National Social Work Month
 
March 14, 2:00 PM, Second Sunday Social at Chris' Pancake and Dining.
 
March 14 - 20, Pulmonary Rehabilitation Week, Every breath brings success
 
March 17, Pulmonary Rehabilitation Program: St. Lukes Hospital
 
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, 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.