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Hope Chest News PATIENT NEWSLETTER July - September 2009 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. Future Hope Chest News Events The following are the events of possible interest to Hope Chest News patients Monthly Meeting of the Hope Chest News Board of Directors 10/19/2009 HCN Bake Sale 10/26/2009 Monthly Meeting of the Hope Chest News Board of Directors 11/16/2009 Monthly Meeting of the Hope Chest News Board of Directors 12/21/2009 Concert at Willow Creek Church benefiting Hope Chest News 03/14/2010 (Details later) Page - 1 U of M Lung Transplant Support Group Meeting Monday November 2, 2009 7:00 – 8:30PM Lillehei Conference Room Dwan Variety Club Cardiovascular Research Center Jo Anne Young, MD, Transplant Infectious Disease Specialist at University of Minnesota Fairview will be addressing the group on the subject of the H1N1 flu virus. Doctor Young is an Associate Professor of Medicine and joined the faculty in January of 1999. She received both her B.A. and M.D. from Case Western Reserve University and completed a residency in Medicine at Vanderbilt University Medical Center. Her fellowship in Infectious Diseases and several years of junior faculty service were at the University of Washington with the Fred Hutchinson Cancer Research Center. Of note, Dr. Young's primary area of interest is connecting diagnostic and treatment research from the laboratory to the bedside for transplant patients. She has worked on developing novel methods for the diagnosis of complicated fungal infections in the immunocompromised host. Currently, Dr. Young is lead investigator at the University of Minnesota for multiple clinical trials on bacterial, viral, and fungal agents for transplant patients. *-*-*-*-*-* The monthly Caregivers meeting will be from 6:00 – 7:00PM before the regular monthly Support Group meeting. It is held in a room just down the hall from the Support Group meeting Hope Chest News is pleased to assist Marget Schmidtke, Lung and Heart Transplant Social Worker, by sending out this meeting notice to all our patients who have E-Mail addresses on record with us. If you have any questions please send call Marget (612-273-5796 or 1-800-478- 5864) or send an E-Mail to email@example.com This meeting is in the 'normal' place that meetings are held each Monday. For those of you who are not familiar with where the Lillehei Conference Room is located: Enter the main entrance of the Fairview University Hospital Take the elevator down to level 1 (you are level 2 at the lobby) Turn and walk in the direction of the glass windows of the Pediatric MRI and Sedation Center Turn right and proceed down the corridor You will pass a shipping and receiving area, keep walking another 10-15 yards! The Lillehei Conference Room will be on the left side just after the shipping area Page - 2 2008\2009 Transplants As of 10/20/2009 there have been 16 Lung and 25 Heart transplants in 2009. Lung Transplants Heart Transplants Name Type # Date Name # Date SL 375 12/24/08 664 12/24/08 Nancy Johnson SL 376 12/24/08 665 12/24/08 Gary White SL 377 01/25/09 666 01/06/09 Linda Tollackson DL 211 02/17/09 667 01/24/09 Mae Eastman SL 378 02/19/09 668 01/25/09 Patricia Klotz SL 379 02/19/09 669 02/16/09 DL 212 03/15/09 670 02/16/09 DL 213 03/23/09 671 02/19/09 SL 380 03/25/09 672 02/22/09 Daniel Clay SL 381 03/28/09 673 02/22/09 Elizabeth Johnson DL 214 04/20/09 674 03/12/09 DL 215 05/06/09 675 03/23/09 Kathleen Fredin DL 216 07/07/09 676 03/23/09 DL 217 07/18/09 677 03/26/09 SL 382 07/20/09 678 03/30/09 SL 383 08/04/09 679 03/31/09 DL 218 08/06/09 680 04/06/09 Ron Senn SL 384 08/10/09 681 05/05/09 682 05/16/09 683 06/07/09 684 07/07/09 685 08/11/09 686 08/13/09 687 09/10/09 688 09/12/09 689 10/02/09 690 10/15/09 Due to HIPPA rules, Marget Schmidtke needs permission from patients to release their name, transplant number and date. Contact her for your transplant information. If any of the people transplanted this year would like to have their name printed in the newsletter, please E-Mail firstname.lastname@example.org or you can call Ed Aubitz at 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. Page - 3 July 367 Fred Amrhein SL 07/09/08 11 7 Oien, Jr Dan HL 07/08/89 82 Lucille Benson SL 07/15/94 137 7 Peterson Kip DL 07/21/03 294 Gary Broberg SL 07/28/05 158 Scott Roth 7 DL 07/30/05 319 Sarah Buan SL 07/07/99 329 Dan 7 Schreyer SL 07/27/06 Polly Davis DL 07/28/06 Ed 7 Schuck SL 07/03/03 266 Lyle Derry SL 07/25/03 98 7 Suzie Seever DL 07/20/00 79 Jean Dunson SL 07/04/94 182 Candace Sprout 7 DL 07/06/06 88 Jo Elliott DL 07/14/99 24 7 Brian Stainbrook HL 07/07/91 446 Ramona Foore H 07/28/02 96 Pat 7 Strohmeier DL 07/01/00 114 Shirley Freel DL 07/18/01 146 Roy 7 Stubbs DL 07/19/04 40 Clarice Hanson HL 07/13/97 97 Shawn Swartz 7 DL 07/14/00 136 Wanda Hinrichs DL 07/03/03 76 Cindy Torgerson 7 DL 07/26/98 Charles Larsen SL 07/25/03 113 7 Chris Trainer DL 07/15/01 Richard Ludgate SL 07/03/03 89 7 Patty Wagner DL 07/30/99 199 Mark Nyman DL 07/25/07 350 Alice Wishard 7 SL 07/29/07 August 115 Mary Ahern SL 08/02/96 80 8 John MacLaren DL 08/18/98 Ronald Aman HL 08/01/07 370 Jane Mathison 8 SL 08/06/08 351 Lowell Amundson SL 08/08/07 167 Jim 8 Melander SL 08/14/99 Gary Anderson 08/31/03 Richard Phinney 8 SL 08/25/04 284 Joe Coletta SL 08/11/04 200 8 Deva Randall SL 08/06/00 186 Clyde Craite DL 08/26/06 213 E. 8 Margaret Resch SL 08/16/01 Martin Glanzer DL 08/25/05 8 Walter Rime SL 08/11/04 137 Doris Griemes SL 08/12/97 8 Paul Ruder H 08/22/92 99 Ronald Hicks DL 08/28/00 150 8 Sandy Sandager SL 08/03/98 Darlene Johnson SL 08/25/04 298 8 Michael Schowalter SL 08/08/05 330 Denise Johnson SL 08/31/06 296 Charlotte Storsteen 8 SL 08/05/05 141 Denise Kitchen DL 08/04/03 297 8 Karen Taylor SL 08/07/05 198 Duane Lokken SL 08/03/00 139 8 Deb Werkman DL 08/05/03 September 181 91 Jan Ankeny DL 09/30/99 245 9 Lavonne Maring SL 09/20/02 Kenneth Bourke SL 09/03/07 119 9 Leroy Martin SL 09/05/96 332 Wally Brandt SL 09/06/06 41 9 Daniel McCullough DL 09/06/95 Susan A. Campina SL 09/20/02 29 9 Carmen Moser DL 09/16/94 593 Brenda Daml H 09/22/06 140 Terry Olson 9 DL 09/28/03 127 Trudy Davey DL 09/08/02 Dale Oman 9 SL 09/04/05 331 Duane Erickson SL 09/06/06 272 Melodie Purk 9 SL 09/09/03 Susan Hackert SL 09/12/06 117 Robert Smith 9 SL 09/03/96 281 Charles Hagenah SL 09/14/04 9 Kristi Van Buren DL 09/25/05 301 Robert Haugen SL 09/20/05 270 9 Carla Viseth SL 09/07/03 13 Larry Larrivy HL 09/28/89 216 9 Carole L. Vondall SL 09/05/01 201 Harlan Lehto SL 09/07/00 19 Richard Ziegler 9 DL 09/30/93 169 Viki Lelm SL 09/13/99 50 Brent Zook 9 DL 09/27/96 269 Eldred (Al) Lorenz SL 09/07/03 9 Page - 4 In memory of loved ones and donors. Please remember them in your prayers We have lost more of our transplant family members: Judy Johnson waiting passed away 12/23/08 David Lee Knowles transplanted 07/04/01 passed away 07/23/09 Chuck Hagenah transplanted 09/14/04 passed away 08/13/09 Ron Senn transplanted 08/10/09 passed away 08/19/09 Our prayers go out to their families and to any others who have passed away that we are not aware of. Memorials Nancy Meyer Margarita Alverez Wayne Anderson Sandy & Ed Aubitz Cathy Broberg Frank & Judy Vermeulen Eileen Vierow Gary & Marcia Wulf Charles Haganah Gretchen & Shawn Appelwick Elizabeth Beck David and Patricia Berglund Gordon & Lillian Davis Hagenah Family Mr. & Mrs. Larry Hagenah Amy Johnson Mark & Susan Wasbotten For Friends who have died Ramona Foore Donations Thank you to the following people & organizations for their generous donations Nicolle & Joseph Dosan Page - 5 News from the HCN Board of Directors Kip Peterson, President (2010) 952-431-8442 PetersonKip@aol.com Ed Aubitz, Vice President (2012) 952-457-8281 email@example.com Judy Vermeulen, Treasurer (2011) 952-445-2497 firstname.lastname@example.org Kathy Greising, Secretary (2012) 763-383-2255 email@example.com Julie Caron, Director (2010) firstname.lastname@example.org Brenda Daml, Director (2011) 763-753-4169 email@example.com Ross House, Director (2012) 763-593-9745 firstname.lastname@example.org Ramona Foore, Director (2011) 952-431-2884 email@example.com Vern Jackson (2011) 651-696-2962 firstname.lastname@example.org Hinda Litman, Director (2011) 952-935-1687 email@example.com Ralph Loftus, Director (2012) 763-639-3937 firstname.lastname@example.org Mary Paquette, Director (2010) 651-450-9767 email@example.com Candace Sprout, Director (2012) 612 338-3419 firstname.lastname@example.org Presidents Review As I look outside and see snow on the ground in October I wonder what happened to fall this year. Hopefully you all are doing well and will continue to do so with the onset of winter. I would like to remind everyone to get their seasonal flu shot as soon as possible. I called my coordinator about the mist / spray that our grand kids are getting and she recommended staying away from them for 2 weeks after they received it as it’s a live virus. A letter from the transplant center regarding H1N1 flu shots has been sent. Judy Vermeulen announced at the last board meeting she will be resigning as treasurer as of the first of the year. Judy has been active with Hope Chest News for 10 years plus, Judy & Frank are some of the pioneers of putting together this newsletter. In addition to being treasurer she has volunteered countless hours in organizing, overseeing many projects and fund raisers over those years. We are extremely appreciative of Judy’s great contributions, she will be missed! Earlier this year Harriette Wock resigned as a Hope Chest News board member which had been on for several years. Harriette was a past President, was involved in the setting up the 501c3 (tax status) as well help forming the Bi-Laws and Articles of incorporation. Harriette helped design and managed our website, she also was instrumental in fund raising campaigns. We wish Harriette well! Due to changes in the economy some of our members are seeing potential increases in their healthcare insurance on the horizon. Hopefully changes that are in the works in Washington will defray some of these costs and make matters more manageable. We have seen a slight increase in the support from Hope Chest News to families in need so in response we have lowered the annual amount any one person can receive in an effort to continue to help as many as possible. Page - 6 We continue to look for ways to generate new revenue and would appreciate any help or ideas for new opportunities. If you have something in mind feel free to come to a meeting or contact a Board member. Again, it’s sad that we have lost transplant family members: Judy Johnson COPD Waiting passed away 12/23/08 David Lee Knowles Alpha-1 transplanted 7/04/01 passed away 07/23/09 Chuck Haganah IPF transplant 9/14/04 passed away 08/13/09 This was especially difficult for their family as Chuck lost his wife Donna 8 months before to cancer. Ron Senn COPD transplanted 8/10/09 passed away 8/19/09 Our prayers go out to their families and to any others who have passed away that we are not aware of. For those that haven’t been involved yet please consider joining us! Take Care / Have some Fun! Kip Treasurer’s Report Summer has come to a close at least in Minnesota and I think we have swung into Winter With summer we had our biggest fundraiser the Marie Anderson Memorial Golf Tournament. Closing out at $19,588.00.We have had a number of Bake Sales total for the year so far is $1400.00 We also have had a spring appeal that raised $690.00 and Pancake Breakfast $800.00 We have helped with housing, drugs, transportation, and funeral baskets for 32 patients this year so far with approx. $23,500.00 With a sad heart I have come to the conclusion that after 12 years of service to the Newsletter and Hope Chest News as the treasurer that it is time for me to step down and concentrate on family. I will still be around and on the board but have to give up the duties that I have taken care of. HELP NEEDED !! We are need of a new treasurer. We have the books on Quickbooks Premier for Non- Profits accounting program; I will gladly work with anyone who would like to take it over. This position does not require you to be on the board but you would have to be at Board meetings.. The position comes with a computer and printer. With love and good health to all !! Judy Vermeulen Treasurer Page - 7 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 Candace Sprout 612 338-3419 email@example.com Change In the Hospital Any Board member See list elsewhere firstname.lastname@example.org Marget Schmidtke, 612-273-5796 or Financial Assistance Thoracic Transplant Social Worker 1-800-478-5864 Heart\Lung Status Candace Sprout 612 338-3419 email@example.com Change Mentorship Program Ross House 763-593-9745 firstname.lastname@example.org Obtain your 612-273-5796 or Marget Schmidtke Transplant Number 1-800-478-5864 Heart Buttons Mary Paquette 651-450-9767 email@example.com Newsletter Editor Ed Aubitz 952-457-8281 Eca123#comcast.net * * * * * 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. * * * * * Hope Chest News Online A reminder that Hope Chest News sponsors has an online Web page at: www.hopechestnews.org Updates, current events, breaking news and ‘links’ to other lung or heart transplant sites are available there. Page - 8 H1N1 Novel Influenza information There is a lot of media attention being given to the H1N1 influence situation. We all hear various stories, comments and rumors about how to deal with it. There are many good, reliable resources available on the Web. Below are a few ‘links’ you can use to reference the most up to date and accurate information. Note: The ‘links’ have been shortened from the original longer addressed to make it easier to type! The Web page referenced is still the same one. Minnesota Department of Health Web site: http://snipurl.com/si15n Center for Disease Control and Prevention (CDC) http://snipurl.com/rz4sc US Government H1N1 information center http://www.flu.gov/ In addition to these resources you should have received a letter from the University of Minnesota Medical Center Fairview. This letter was sent to all Lung transplant patients. It summarizes what patients should know about the symptoms of the disease and preventative measures to take so you don’t get it. If you did not get the letter, or are interested in what it contained, you can view it at the following U of M Transplant Web site: http://www.uofmtransplant.org/ Look for a another ‘link’ titled Flu Vaccine Alert for Lung Transplant patients and click on it to see the actual letter. Use of licorice by transplant patients People taking the immunosuppressant cyclosporine should avoid consuming licorice because it may weaken the drug's effectiveness and possibly lead to deadly consequences, new research suggests. The following ‘link’ is to the full article in an issue of US News and World Report from earlier this year. http://snipurl.com/sg9qd Page - 9 Fund raising activities to date Fund Raising Items For Sale Item Price Contact Phone # Email Cookbooks $15.00 Judy Vermeulen 952-445-2497 firstname.lastname@example.org Logo Tote Bag $15.00 Judy Vermeulen 952-445-2497 email@example.com Logo Jackets $35.00 Judy Vermeulen 952-445-2497 firstname.lastname@example.org The following fund raising events were held since the last Newsletter in July: Bake Sale Mary Paquette has organized two more Bake Sales, one on May 11th brought in $307 and one on July 13th which made $429.00. So far the Bake Sales have brought in over $1370 in 2009 and sold almost $200 in Raffle tickets. The next Bake Sale is planned for Monday, October 26 from 9 – 2PM in the hallway outside the Transplant Clinic in the Phillip Wagensteen Building (PWB). If you would like to help by baking something please contact Mary Paquette Pancake Breakfast Hal Wenaas spearheaded another Pancake Breakfast in Litchfield, Minnesota where he lives. The breakfast was held and sponsored by the Litchfield Eagles organization. This latest event raised about $500 Thanks to both Mary and Hal for their work in organizing and holding these fund raising events and to all the Hope Chest News volunteers who helped make them happen especially Kathleen Hallinan and Judy Vermeulen who helped with the Bake Sale on July 13th while Mary was dealing with other priorities. Page - 10 2009 Marie Anderson Memorial Golf Tournament Hope Chest News held the 3rd Annual Marie Anderson Memorial Golf Scramble on July 27th. It was another unqualified success with120 golfers enjoying slightly changing weather and a new course, Columbia Golf Course in Minneapolis. The event generated income of over $19,500 for Hope Chest News programs. Full results follow and can be found on the Hope Chest News Web site. http://www.hopechestnews.org 1. Northland Fastening Godbout, Godbout, Godbout, Willson 58 2. Hals’ Friends Wenaas, Klimstra, Kadelbach, Minton 58 3. Rolnick, Johnson, Abrahamson VanderBloemen 61 4. J&R Diversified Kiecker, Stalboerger, Boes, Droubie 63 5. 3 Cops + a Marine White, Bandemer, Sandell, Payne 64 6. Tuttle, Tuttle, TBD, TBD 64 7. Harris, Foore, Nichols, Neutz 64 8. Defending Champs Hendrickson, Henderson, Raymond, Parnell 66 9. Gary Broberg’s Classmates 1 Brost, Carlson, Leiendecker, Howard 66 10. Clough, Provo, Strandquist, Wilhelmson 66 11. Gary Broberg’s Classmates 2 Webb, Husbands, Morgan, Pettygrove 66 12. Stafford, Frederickson, Carlson, Sheehan 66 13. Anderson, Anderson, Hardie, Meyer 67 14. We’re Trying Wisdorf, Johnson, Michalak, Beckstead 67 15. Contreras, Contreras, Knoll, Pew 67 16. Panichi, Licari, Foltz, Heinrich 67 17. Elmer, Kampinen, Kelly, Larson 67 18. VERNantors Hallinan, Hallinan, Hallinan, Rada 70 19. Broberg’s plus 2 Broberg, Broberg, Whelan, Schulz 70 20. Opstad, Weldon, Cebulla, Cebulla 70 21. Contreras, Abrahamson, Fairchild, Hartle 72 22. Surgeons Plus One D'Cunha, Hertz, Jelnek 73 23. Wenaas Family David, Alta, Crystal, Mary Jane 73 24. Johnson, Vierow, Jackson, Martin 74 25. M&Ms\Ben’s Four Wetherby, Wetherby, Benson, Hacka 74 26. Nyman, Swanson, Baird, Glewwe 74 27. Nervick, Nervick, Nervick, Nygaard 76 28. Fearsome Foursome Grafstrom, Kofflin, Phillips, Cosgrove 78 29. Reisner, Schirber 78 30. Loftus, Loftus, Loftus, O'Mara 86 Results of the on-course contests were: Closest to Pin Men - David Wenaas Women - Cindy Michalak Longest drive Men - Jimmy Sheehan Women - Michelle Wetherby Pictures from the event are posted online at the following ‘address’: http://snipurl.com/piqod The winners of the raffle were: 1. Michelle Wetherby $1,000 2. Jodi Tracy $750 3. Bob Kadelbach $500 Page - 11 U of M nurses respond to patients with Smartphones The following article by Rob Olson was a special segment on the My Fox Twin Cities TV station and was Published Wednesday, 23 Sep 2009 on their Web site. You can read this article and view a video at the following ‘link’ http://snipurl.com/s8jtj MINNEAPOLIS - The nurses at the University of Minnesota Medical Center admit that at first they weren’t crazy about the new devices they got handed about six months ago. “These phones are bigger than most nurses want to carry around,” says Lynn Humann, longtime nurse at the hospital, “but the patient satisfaction’s been huge.” Now, there’s no way they’d part with them, nor would the patients. “Sometimes they kind of joke because three people will come in and answer their call!” The phones use wireless internet technology and integrate with the equipment the hospital already uses. The old method, still in use at many hospitals, is that when a patient pushes their call button, someone at the nurse’s station answers. They then must relay the patients request to their nurse through a pager. It can take up to ten minutes for a nurse to respond to a patient’s request. Now, when a patient pushes their call button, it directly dials their nurse. They often answer within seconds. If they can’t, someone else will, because the same call goes to two other people. Linda Benassi, a patient who’s been treated at the U of M Medical Center for several years, says that under the old system of waiting for a nurse to be paged “I would get so annoyed laying in bed thinking when are they going to come in here and help me.” Now, she says, the response is nearly instantaneous. The point of the new technology is to increase efficiency and patient satisfaction. It’s working so far, says Dr. Amy Jonson, whose heard tons of feedback from patients that they haven’t had to wait nearly as long to get their pain medications. The phones also allow doctors to directly call a nurse, rather than also waiting for them to respond to a message passed through the nursing station. The U of M Medical Center has 225 of the ASCOM devices in use and are now seriously considering expanding them to other hospitals in the Fairview system. “I don’t see any downsides” says Dr. Jonson. Page - 12 * * * * * Using the generic form of Prograf As a transplant patient many of us are taking Prograf as our primary immunosuppressant. This is a very expensive medication and some insurance companies don’t pay as much of the cost as others. To address this Hope Chest News would like to tell you that there is at least one new generic form of the medication available from Novartis\Sandoz. It will become available soon and some insurance companies will require it to be used instead of Prograf The following are some points that were presented by Chris Martin from the Specialty Pharmacist of the U of M Fairview Clinic. He spoke at the Monday October 5th Lung Transplant Support Group meeting. Also, Marget Schmidtke, Lung Transplant Social Worker, gave the following guidance about switching to the generic form of Prograf 1. Before you switch contact your transplant coordinator and make them aware you are considering or being required to switch to the generic form of Prograf. They will want to check levels during the switch-over process 2. There is more than one generic form of the medication available. It will be important that your pharmacy stay with one brand and not switch back and forth each month. So, you should pay attention to the brand name or at least the look of the medication and make sure its consistent each time you have the prescription refilled. You should not switching between brands, that could affect levels. 3. In general the U of M Clinic staff are OK with switching when it is going to affect people pocketbooks. Prograf is vastly more expensive than the generic, so even if you were one of those patients that is paying 20% of the cost of the medication it would make a significant difference. * * * * * The blessings of transplant Marie Anderson stood out! She glimmered. Maybe it was just something innate. Her husband Wayne said so. She was always special; that’s why he married her. But after her lung transplant, she was even more radiant. She knew something that many of us have forgotten. She knew what a gift every breath and every day was. Marie wrote the following words about the blessings of transplant. Thank you Marie for reminding all of us. • For years, the field and the woods was a view from the dining room table. I now can walk to the woods, pick a rock or a stick. Memories of finding the fox’s hollow, a sleeping deer. • Just 10 days after transplant, the first time in so many years that I could talk, walk and breath all at the same time. • Taking a shower by myself. Had a home health aid giving me showers before transplant. Do you know how difficult it is to have someone come into your house, a woman you have Page - 13 never met before and that person giving you a shower. It also didn’t matter if I was on 3 liters of oxygen or 5 liters of oxygen. Could not breath. • No more weekly infusion therapies. • When you can’t breath, nothing else matters. • Being able to walk up the stairs of my house which I hadn’t been able to do for over 2 years. • Making my husband’s brown bag lunch the evening after being discharged from the hospital. No big task but was big deal for me. • There were so many bumps in the road for the first 10 months. I became very angry and then remembered; I prayed for the transplant and being able to take a deep breath once again. I could breath and also had the strength to endure the major medical problems post transplant. • Keep your dreams alive. I always stated, “after transplant I would purchase a new yellow “beetle” Volkswagen”. After transplant, living on disability income we were not able to buy such a car. On the second anniversary of being listed for transplant, I rented a “beetle” car for a weekend. How much better could it be —my daughter driving the car on 694, I’m in the passenger seat eating a fresh bagel smear and sipping my favorite coffee. Life is good!!! • The next year, third anniversary of being listed for transplant, once again rented a car. This time it was a PT Cruiser. How sweet it was! Could not afford the purchase of a car but weekend rental was in the budget (I saved my pennies for this excursion). • A family vacation in 1999. The first vacation we had taken for 12 years. Walking the shores of Lake Superior with my family. Each of us picking rocks, looking out into the horizon, seeing the ships off in the distance. A family photo from the Light House. Playing games, laughing, eating and reflecting on the past 2 years. My family is one of the richest blessings of life. • Participating in the planning of my daughter’s wedding. Even included in the beginnings of the “stag” party. • Dancing at my daughter’s wedding. The photographer even captured a picture of Wayne and I dancing. It had been sooooo many years ago. • Meeting some of the nicest people in the world through our Lung Support Group. • Volunteering at LifeSource. Makes me feel part of the working world which I can not return to as per the physicians. Speaking and spreading the news to one and all about the gift of life. Removing the myths through education we volunteers have received through training at LifeSource. Wonderful people work here. • Support. The first anniversary of transplant. Inviting our family and friends to dinner at a restaurant to celebrate this gift of life. Telling our story. They, giving gifts of money for in honor of this celebration. Page - 14 • Grandchildren. New life to love. New feet to guide. What more could anyone ask for. • The laughter of friends, closeness of family. • Having the strength to help my daughters and their husbands pack their belongings for moves to different houses. • Entertaining – resuming card club. We began with this group in 1969 and so desperately wanted to reenter the social world. Dinner, playing cards, prizes. I did it!!! • Eating. Before transplant it was difficult to consume any portion of food as it would be exhausting. Any amount of food, pressure on your diaphragm, would make it most difficult to breath. Struggling for every breath you take. • Going with my family to “Mama Mia”. Standing during the encore, singing and crying “I’m Having the Time of My Life”. Truly I was. • Walking side by side with others needing transplant so they never have to walk this journey alone. • Faith, fight, family and friends have sustained me each and every day of life pre and post transplant. • Each and every morning, I give thanks for my donor. I know not the dignity of my donor’s life, nor the tragedy of their death but I do know I received the greatest gift of all, the gift of life. Yesterday is history Tomorrow a mystery Today is a gift!!! They told me I would never live to see Christmas. Transplantation works. Every day is a gift. Every day is Christmas! Life is good! Marie Anderson - 01/12/04 Editor’s Note: Marie was the first person who met me at the door on the first day of my evaluation week in 2004. She could see the ‘deer in the headlights’ look I had on my face and calmly introduced herself, led Sandy and I to chairs and welcomed us to the beginning of the journey. I will never forget that event Marie passed away on June 22, 2005. Her spirit is still a part of this Hope Chest News organization. Marie’s words above capture many of the sentiments that I myself have felt since transplant. I would imagine she has touched on some of yours also. Let’s honor Marie’s memory and continue her work by spreading the word on donation and transplantation. Page - 15 HOPE CHEST NEWS NONPROFIT ORG PATIENT NEWSLETTER US POSTAGE Ed Aubitz PAID 161 East 105th Street Circle MINNEAPOLIS MN Bloomington, MN 55420 PERMIT NO 31185 Address Service Requested U of M Support Group Meetings: Evening meeting at 7:00 P.M. on the 1st Monday of each month. Weekly on Mondays at 11:00 A.M. (no meeting the 1st Monday of the month). These meetings are held in the Lillehei Conference Room which can be found by: o Entering the main entrance of the U of M Hospital - Fairview o Take the elevator down to level 1 (you are level 2 at the lobby) o Turn and walk in the direction of the glass windows of the Pediatric MRI and Sedation Center o Turn right and go down the corridor through an automatic roll-up door o You will pass a shipping and receiving area on the left, keep going! o The Lillehei Conference Room will be on the left after the shipping area Caregivers Support Group: First Monday of the month at 6:00 p.m. prior to the regular Support Group. Sioux Falls Support Group: Contact June Schnieder at 605-339-3067 Hope Chest News Board Meetings The Hope Chest News board of Directors holds its monthly meeting on the 3rd Monday of each month 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 HCN patients.
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