Renewing Spirit: a Gathering of Caregivers

Hope Chest News PATIENT NEWSLETTER

January - March 2008

The information provided in this newsletter is for educational purposes only, and it is not nor implied to be a substitute for professional medical advice. Always consult your own physician or healthcare provider with any questions you may have regarding a medical condition.

Mission Statement To support and educate University of Minnesota Medical Center, Fairview patients and their families as the progress through the process of lung, heart or heart / lung transplantation, and to promote public awareness of the needs of these patients.

Renewing Spirit: A Gathering of Caregivers If you are, or have been a caregiver of a lung or heart transplant patient, this full day conference is being held just for you! Renewing Spirit: A Gathering of Caregivers will be held on Saturday, September 13, 2008. This is a conference sponsored by University of Minnesota Medical Center, Fairview. There will be a special keynote speaker, plenary sessions on relevant topics, wonderful food, a beautiful setting, great music and lots of time to spend with both old friends and new. It truly will be a wonderful way to renew your spirit! This conference will be held at the beautiful Dolce Oakridge Conference Center in Chaska. The center is situated on a lake with lots of walking trails to enjoy. They are known for their wonderful food and great hospitality. Feel free to check out all of the amenities available at www.oakridge.dolce.com. This event was originally scheduled for April 2008 but had to be changed because of speaker conflicts. More information and registration information will be sent this summer. Be sure and mark your calendars now so you do not miss out on this event. If you have questions or would like more information about the conference, please call Barb Peterson at 952-431-8442 or email her at [email protected].

Page - 1 2008 Transplants As of March 17 there have been 6 Lung transplants and 7 Heart transplants. Lung Transplants Heart Transplants Name Type # Date Name # Date D/L 203 01/05/08 639 01/07/08 Mary Paquette D/L 204 01/10/08 640 01/12/08 D/L 205 01/10/08 641 01/15/08 S/L 358 01/31/08 642 01/30/08 Ralph Loftus D/L 206 02/09/08 643 02/08/08 S/L 207 02/18/08 644 02/16/08 645 03/05/08

Due to HIPPA rules Marget Schmidtke needs permission from patients to release their name and transplant number and data. Contact her for your transplant number. If any of the people transplanted this year would like to have their name printed in the newsletter, please E-Mail [email protected] or you can call 952-457-8281. If you let us know the date of your transplant and your transplant number, we can also make a button for you. News from UNOS A faster, easier and better search experience Responding to feedback from patients and members, United Network for Organ Sharing (UNOS) today launched the Google search engine on its UNOS, OPTN and Transplant Living Web sites. This feature makes it much easier to search for Web content, PDF files and other online file attachments. Patients and members alike will now be able to more easily locate specific transplant information. Visitors can now also benefit from the same relevancy, speed and ease of use they get on Google.com. Google uses sophisticated ranking and text-matching techniques to find pages that are both important and relevant to your search. Google goes far beyond the number of times a term appears on a page and examines dozens of aspects of a page's content to determine if it's a good match for your query. Articles from the January\February UNOS Update magazine The UNOS Update is a bimonthly magazine that contains news and information of interest to the transplant community. Selected feature articles from the latest UNOS Update are now available in PDF format at the UNOS Web site. www.unos.org/Resources/UNOSUpdate.asp The primary audience is OPTN/UNOS membership, including transplant surgeons, physicians, nurses and coordinators. Interested patients, donor families and the general public can view the information and are encouraged to subscribe.

Page - 2 January

Matt Bartocci DL 01/09/06 229 Richard Hruza SL 01/08/02 1 1 167 Steve Blake DL 01/02/06 339 Karen Jacobson SL 01/12/07 1 37 Dean Lanz HL 01/04/97 186 Marge Engstrom SL 01/31/00 69 Dennis Orlikowski DL 01/07/98 1 204 Mary Paquette DL 01/10/08 338 Lester Fuhrmann SL 01/04/07 231 Eva Quirk SL 01/25/02 1 88 Stella Regenneiter SL 01/27/95 February

Dave Amato LL 02/25/04 342 Sue Martin SL 02/20/07 Michael Bluhm SL 02/01/03 340 Donna Meegan SL 02/17/07 33 Noreen Burke DL 02/21/95 279 Nancy Meyer SL 02/29/04 70 Rose Dalager DL 02/05/98 Linda Meyer DL 02/14/02 132 Brent DeBoer DL 02/05/03 341 M. Fern Olson SL 02/21/07 123 Sharon Durante SL 02/25/97 Hannah Joy Olson DL 02/18/06 84 Mark Gammon DL 02/19/99 32 Sandi Peterson SL 02/05/92 278 Maxine Golombiecki SL 02/29/04 Bridget Shaffer SL 02/18/06 83 Ruth Heinen DL 02/11/99 Barb Tackaberry DL 02/07/02 DuWayne Johnson SL 02/06/06 250 Sharon Warner SL 02/10/03 Robert L. Jones SL 02/01/02 55 Gary Wulf DL 02/20/97 206 Ralph Loftus DL 02/09/08

158 Wendell Anderson SL 03/04/99 Peter Kosberg H 03/01/07 Shirley Baumberger SL 03/09/06 204 Eugene Kuhns SL 03/01/01 18 Brent Bowen HL 03/23/90 160 Lyle Lohse SL 03/16/99 106 Richard Butschi DL 03/22/01 124 Sheila Long SL 03/02/97 6 Grace Charboneau DL 03/19/92 73 Bob Mathis DL 03/16/98 104 Gail Deyoung DL 03/19/01 48 Vyonna Maxwell SL 03/13/93 Donald Eastman SL 03/03/02 161 Leland Nelson SL 03/16/99 207 Karen Fisk SL 03/25/01 194 Timothy Olby DL 03/02/07 Brian Frederick DL 03/14/05 Greg Runge DL 03/22/02 72 David Goroski DL 03/13/98 Diane Sickels DL 03/01/03

Page - 3 163 Sharol Sturart SL 03/25/99 285 Cathie L. Vaara SL 03/23/05 Tom Vanderpool DL 03/21/05 195 Michael Wenner DL 03/31/07

Page - 4 In memory of loved ones and donors please remember them in your prayers

We have lost more of our lung buddies:

Cynthia A. Ales d/l transplanted 01/22/01 Passed away 02/02/08 Ashley Gelking d/l transplanted 09/26/05 Passed away 02/09/08

Our prayers go out to their families and for any others who have passed away that we are not aware of. Memorials

In Memory of Cynthia A. Ales In Memory of Bonnie Bieber The Ales Family Gordon Olson In Memory of Eileen Fiore SL # 221 In Memory of Bill Greising From her husband Ed, her children, grand LaVonne Maring children and great grand children In Memory of Wes Rhode In Memory of James Weyneth Elaine Rhode Judy Weyneth Honorariums

In Honor of Gary Broberg In Honor of Nancy Meyer Paul and Geri Howard Wayne Anderson In Honor of Nancy Meyer In Honor of Nancy Meyer Ed and Sandy Aubitz Frank Vermeulen In Honor of Nancy Meyer In Honor of Sue Saffel Gary Wulf Bruce and Sue Saffel Donations Thank you to the following individuals for their generous donations

Judy and Michael Cannon William and Lonnie Davis Robert and Kathleen Desrocher David and Rita Grace Frances Kaye David Knowles Roger Remer Bridget and Thomas Shaffer Barbara Tackaberry Linda Tollakson

Page - 5 Vincent Voelz

Page - 6 Cynthia A. Ales 4/2/1950 - 2/2/2008

I had the privilege and honor to be Cindy’s transplant buddy. Cindy was diagnosed with Primary Pulmonary Hypertension in 1994 and from there to the transplant (2001) to the time of her death we spent a lot of time together. I watched her and her family struggle with this disease and still grab for the best that they could get. When times got tough they laughed and loved and worked through each day to the best of their abilities. In looking back over the years I think that each of us knew only a part of all of the pain and fears that Cindy went through but she never let it beat her down. I would often go to visit her thinking that it would cheer her up and would leave having discussed my problems and I would be the one feeling uplifted. She had a strong and loving heart and the center of her world was her beloved Stephen (she rarely called him Steve). He was with her for everything. I am sure that Bobby and Dr. Hertz saw as much of Stephen as they did of Cindy. Of course there were her two children Patty (Scott) and Philip (Erin) that gave her the will to press forward, they were the joy of her life. And without them she wouldn’t have had those wonderful grandchildren that even in the most difficult of times could make her smile. " Daniel, Ryan, Grant and Abigail ". In fact all you had to do was tell a story about one of them and she would laugh. The disease took her all too soon for us but her life was family not the disease. We want to thank the doctors and nurses that have helped her over the years, your kindness and loving care were very important to all of us and much appreciated. We would also like to extend our thanks to the support group and to Hope Chest and of course to the family that had the courage to allow their child to donate an organ. God Bless you all. The Ales Family Thank You A special thanks to all those who have donated to the Hope Chest News through memorials, honorariums or personal donations. Any donations made to Hope Chest News will be used to either defray the costs of producing and mailing the newsletter or will be used to provide financial assistance to other FUMC heart/lung transplant patients and waiters. Proceeds from the sale of the cookbook and other items will also be used in this manner. Hope Chest News is a 501(c)(3) charitable organization and all donations are tax deductible. Please keep us in mind when you are making Honorariums, Memorials, or wish to make a tax deductible charitable donation. All donations should be made out to Hope Chest News and be mailed to: Judy Vermeulen, 796 Regent Drive, Shakopee, MN 55379-8261

Page - 7 News from the HCN Board of Directors

Kip Peterson, President (3) 952-431-8442 [email protected] Ed Aubitz, Vice President (2) 952-457-8281 [email protected] Judy Vermeulen, Treasurer (1) 952-445-2497 [email protected] Kathy Greising, Secretary (2) 651-738-2954 [email protected] Julie Caron, Corresponding Secretary (3) [email protected] Ross Bourgeois, Director (2) 763-522-6053 [email protected] Brenda Daml, Director (1) 763-753-4169 [email protected] Ramona Foore, Director (3) 952-431-2884 [email protected] Philip Gracia, Director (3) 651-293-0718 [email protected] Hinda Litman, Director (1) 952-935-1687 [email protected] Elliot Sovell, Director (1) 507-694-1433 Eileen Vierow, Director (2) 651-483-3146 [email protected] Harriette Wock, Director (3) 651-439-1808 [email protected]

President’s Review Over the 2007 Holiday season Hope Chest News helped 16 families at approximately $200.00 per family. During the first months of 2008 we have established a budget committee of Judy Vermeulen, Harriette Wock, Ed Aubitz and myself, we presented the budget for approval to the board and adopted it for this year. You will see an overview of the budget from Treasurer Judy Vermeulen that she will present in a separate article. In addition from the budget project we learned of the areas that need the most attention from Hope Chest news. So in a following board meeting we looked at our priorities as well long range goals. o Helping transplant families as we currently do working through Marget at the U of M medical Center. o Setting up a fund for subsidized housing in the U of M neighborhood, this will need some further study to determine the best direction. o Holding educational conferences regarding transplant related topics for both the patient and caregivers. In the past we have had files for Hope Chest News scattered in various places on many PC hard drives which could be lost. So we have had an effort to get the historical records of Hope Chest News in an online storage. As of this date we have up to 95% of the old Hope Chest Newsletters in that file. Copies of previous Board Meeting minutes are next to be moved online. The golf committee has been working hard on the 2008 tournaments going full speed and looking to be even better than the 2007 tournaments, there will be more about the tournaments following in this publication.

Page - 8 Treasurer Report

Judy Vermeulen, HCN Treasurer, supplied the following report. A first ever budget for HCN was created in a meeting of a sub-committee held last month and covering the 2008 year. This plan and budget has been approved by the board. HCN is starting to set money aside for items we may want to do in the future. Where are we: . $5,000.00 in CD long term plans of possible purchase of temporary patient housing near the U of M . $5,000.00 in CD medium range plans for a seminar/banquet sometime in future . $5,500.00 in Money Market our rainy day fund . $6,500.00 in checking to cover our immediate expenses

The HCN 2008 Budget: Income Donations, Memorial, Honorariums and merchandise purchased 9,900.00 Golf Scramble and Larry’s Tournament 39,101.00 Hal’s Pancake Breakfast and all other income 1,100.00 Grants 2,500.00 TOTAL $52,601.00 Expenses Fund distribution (helping patients) 20,000.00 Christmas fund distribution to needy families 3,000.00 Funeral Baskets and gift bags at time of transplant 850.00 Newsletter publication and postage 2,560.00 Golf Scramble & Larry’s Tournament 13,719.00 Miscellaneous office/organizational items 1,565.00 Transfer to savings for potential patient help 10,907.00 TOTAL $52,601.00

* * * * * We don’t want to miss you… Marget has short-term parking passes for the group meetings. So come to group and if you need one just ask Marget. We don’t want anyone to stay away from meetings because of financial concerns.

Page - 9 Important Numbers: The following chart will help if you need assistance in one of the listed areas. Purpose Who to Contact Phone Number E-Mail Address Address or E-Mail Ed Aubitz 952-457-8281 [email protected] Change In the Hospital Any Board member See list elsewhere [email protected]

Marget Schmidtke, 612-273-5796 or Financial Assistance Thoracic Transplant Social Worker 1-800-478-5864 Heart\Lung Status Ed Aubitz 952-457-8281 [email protected] Change Mentorship Program Eileen Vierow 651-483-3146 [email protected]

Obtain your Transplant 612-273-5796 or Marget Schmidtke Number 1-800-478-5864 Heart Buttons Ed Aubitz 952-457-8281 [email protected]

Newsletter Topics . The Newsletter is produced on a quarterly basis. For this issue we have made some formatting changes using a single font (Lucinda Sans) to be consistent with the fonts used in other HCN documents and forms. . The Newsletter is also available online at www.hopechestnews.org. Click on the “Newsletter” tab on the left hand side of the page. Once there, you can view the newsletter or download a copy to your PC. We can provide E-Mail notification to you when the latest copy is available online. To request this service please send an E- Mail to [email protected] . If you would like to share a personal story about your transplant experience, if you have questions or information you would like to share with other lung or heart transplant patients, please contact Ed Aubitz by calling 952-457-8281 or via E-Mail to [email protected]. Removal from the Mailing List? If you no longer wish to receive the Hope Chest News please initial and date the following statement: ______I do not wish to receive the Hope Chest News newsletter

Send this initialed and dated page to: Hope Chest News 161 East 105th Street Bloomington, MN 55420

Page - 10 Transplant Education There are many, many resources on the Internet covering heart and lung disease and transplant. One that was recently found is from the American College of Chest Physicians. This site is primarily aimed at doctors but there is a section of site that contains information for patients. The following is the ‘Link’ to that page with entries to several ‘Patient Education Guides’. These are overviews of the various topics but are a good start to understanding lung disease and transplant related topics. www.chestnet.org/patients/guides/index.php

TSA Regulations on use of oxygen The following ‘link’ is to the information from the Transportation Security Agency (TSA) for those patients who want to travel while they are using supplemental oxygen. www.tsa.gov/travelers/airtravel/specialneeds/editorial_1568.shtm Fund Raising HCN fund raising efforts have increased in the last two years. In previous years we depended on donations or grants from people or organizations. Now we are able to use multiple ways to raise funds. Below are the 2008 sales and events that you can participate in that directly help our transplant patients in need. Fund Raising Items For Sale

Item Price Contact Phone # Email

Cookbooks $15.00 Judy Vermeulen 952-445-2497 [email protected]

Logo Tote Bag $15.00 Eileen Vierow 651-483-3146 [email protected]

Logo Jackets $35.00 Eileen Vierow 651-483-3146 [email protected]

Pancake Breakfast – Sunday, September 21st, 2008

Litchfield Eagles Club - 3424 S. CSAH 34 Litchfield, MN Last year one of our members, Hal Wenaas, approached the Eagles club for a donation to Hope Chest News from their pull tab profits. Rather than giving a donation they allowed him to hold a fundraiser breakfast in their building. Hal needed 10 friends to help him and would get the profits from the breakfast after expenses. Last year it was held April 15th from 8am to noon. Hal had Pancakes, French Toast, Sausages, Juice, milk and coffee for only $5.00. The event made over $600.00 for Hope Chest News. Hal plans to do the same this year on Sunday, September 21st from 8am to noon. Hal’s friends in Litchfield and a few people from Hope Chest have agreed to help again. Please consider taking a relaxing ride West to support this event.

Page - 11 * * * * * 4th Annual Daml Golf Tournament Larry Daml’s wife, Brenda, had a life-saving heart transplant in September of 2006. As Brenda and Larry waited for her ‘call’ Larry realized not only the emotional toll taken by a loved one in need of a transplant but also the economic impact of this situation. Although not a golfer himself, he organized a tournament to raise money to donate to a charitable organization that supports transplant patients. In 2007 Larry and Brenda became members of Hope Chest News and Larry contributed all money raised to HCN. Larry’s tournament this year to be held at The Ponds golf course in St Francis, MN on Saturday, June 14th, 2008. The ‘flyer’ for Larry’s event has been reproduced on the following 2 pages. Please feel free to use it yourself or to pass it to friends, family and co-workers. Please send completed forms to Larry Daml, 7078 Old Viking Blvd. Anoka, MN 55303 * * * * * 2nd Annual Marie Anderson Memorial Golf Scramble The 1st Annual Marie Anderson Memorial Golf Scramble held in 2007 was an unqualified success. 120 golfers enjoyed a magnificent day playing with friends or relatives followed by a dinner at Elsie’s in Minneapolis. Preparations for the 2008 event are under way. It will again be held at the Les Bolstad Golf Course on Monday, July 28th, 2008. The event has been expanded to include a Raffle for prizes of $500, $300 and $100 as well as having the customary on-course games and contests The ‘flyer’ for this event follows the Daml Tournament flyer. Please feel free to use it yourself or to pass it to friends, family and co-workers. Ask them for participation in any of the categories; Event or Hole Sponsorship, Donation, Silent Auction item or as a player. Please send completed forms to Judy Vermeulen, 796 Regent Drive, Shakopee, MN 55379 Helping with these golf events Both of these golf events need people to make them happen! As a Hope Chest News newsletter recipient, you can help in several different ways: . Recruit Event or Hole sponsors. The levels of participation are in the flyers. . Provide an item for the Silent Auction. This is a very effective way of helping our cause. The most revenue comes from the Silent Auction . Recruit golfers for the event. The more people who share the experience the better! . Volunteer to help organize either of the events. This could be setting up the Silent Auction display, registration, processing the Silent Auction bids or cleaning-up at the end of the day. Please feel free to copy the pages for either or both flyers and pass them to others. If you want a fresh, clean copy just contact one of the committee members listed in below and we will send them to you: Hal Wenaas 320-593-7533 Gary Broberg 651-456-0340 Larry Daml 763-257-4967 Ed Aubitz 952-457-8281 Kip Peterson 952-431-8442 Judy Vermeulen 952-445-2497

Page - 12 Page - 13 Page - 14 Page - 15 Page - 16 Medjet Assist program for AARP members The following is a summary of a program available to AARP members that could be of interest to some of our patients. More details are available at the following Web address: www.medjetassist.com/aarp Regular Medjet Assist is your ticket home if you become ill or are injured while traveling domestically or internationally. From $225.00/annually Expatriate Memberships are available for residents of the U.S., Canada and Mexico living for extended periods in other countries. Diamond The Diamond Membership offered by MedjetAssist is available to individuals between the ages of 75 and 85. Short-Term Medjet Assist offers short term programs for residents of the U.S., Canada and Mexico up to age 75, with protection provided 24 hours a day during a selected travel period. From $85.00

Recognizing a stroke Remember The 1st Three Letters.... S.T.R. A neurologist says that if he can get to a stroke victim within 3 hours he can totally reverse the effects of a stroke... totally. He said the trick was getting a stroke recognized, diagnosed, and then getting the patient medically cared for within 3 hours, which is tough. Indications of someone having a stroke Sometimes symptoms of a stroke are difficult to identify. Unfortunately, the lack of awareness spells disaster. The stroke victim may suffer severe brain damage when people nearby fail to recognize the symptoms of a stroke . Doctors say a bystander can recognize a stroke by asking 3 simple questions: S - Ask the individual to SMILE. T - Ask the person to TALK and SPEAK A SIMPLE SENTENCE (Coherently) (i.e. It is sunny out today) R - Ask him or her to RAISE BOTH ARMS. If he or she has trouble with ANY ONE of these tasks, call 911 immediately and describe the symptoms to the dispatcher. NOTE: Another 'sign' of a stroke is this: Ask the person to 'stick' out their tongue.. If the tongue is 'crooked', if it goes to one side or the other , that is also an indication of a stroke.

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PERMIT NO 31185 NO PERMIT Bloomington, MN 55420 MN Bloomington,

MINNEAPOLIS MN MINNEAPOLIS Street Circle Street 105 East 161

Ed Aubitz Ed

PATIENT NEWSLETTER PATIENT US POSTAGE US

HOPE CHEST CHEST HOPE NEWS NONPROFIT ORG NONPROFIT Marie Anderson Memorial Golf Scramble Benefiting:

Hope Chest News

Proceeds from this event will be used to provide financial assistance to University of Minnesota Lung Transplant recipients, waiters, and Care Givers Support Group Meetings : . Weekly on Mondays at 11:00 a.m. (no day meeting on the first Monday of the month). . Evening meeting only at 7:00 p.m. on the first Monday of each month. Caregivers Support Group:

. First Monday of the month at 6:00 p.m. prior to the regular support group. Sioux Falls Support Group:

. Contact Jo Brouwer at [email protected] or June Schnieder at 605-339-3067 Board Meetings

The Hope Chest News board of Directors will hold its next monthly meeting on April 21st, 2008 in the 8th floor hospital conference room in the luncheon area from 12:30PM to 2:00PM. This is the “Bridges” Conference room. We encourage participation from all our members.

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