Hope Chest News PATIENT NEWSLETTER October - December 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. Future Hope Chest News Events The following are the events, conferences and seminars of possible interest to Hope Chest News patients in the next few months U of M Lung Transplant Support Group meeting – 7PM – 8:30PM January 5, 2009 Speakers from the Palliative Care department Monthly meeting of the Hope Chest News Board of Directors January 19, 2009 Hope Chest News Bake Sale – Outside Clinic 2A – 9AM –2PM February 8, 2009 Monthly meeting of the Hope Chest News Board of Directors February 16, 2009 Herberger’s Coupon Book Fund Raiser February 28,2009 Monthly meeting of the Hope Chest News Board of Directors March 16, 2009 Eagles Breakfast - 8:30 -12:30 – Litchfield, MN April 19, 2009 Monthly meeting of the Hope Chest News Board of Directors April 20, 2009 Monthly Meeting of the Hope Chest News Board of Directors May 18, 2009 3 Annual Marie Anderson Golf Scramble – detail later rd July 29, 2009 Monthly Meeting of the Hope Chest News Board of Directors June 15, 2009 Page - 1 2008 Transplants As of 12/16/2008 there have been 25 Lung and 25 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 Mary Carhill S/L 358 01/30/08 641 01/15/08 Jennifer Rousseau D/L 205 01/31/08 642 01/30/08 Ralph Loftus D/L 206 02/09/08 643 02/08/08 Shelle Goodwin D/L 207 02/18/08 644 02/16/08 S/L 359 03/26/08 645 03/05/08 S/L 360 04/02/08 646 04/08/08 Viola Poeschl S/L 361 05/02/08 647 04/15/08 S/L 362 05/02/08 648 04/30/08 Allen Jarnot S/L 363 06/05/08 649 05/21/08 Gloria Heideman S/L 364 06/25/08 650 05/29/08 Renee Holzapfel S/L 365 06/25/08 651 06/25/08 S/L 366 06/28/08 652 07/22/08 Fred Amrhein S/L 367 07/09/08 653 07/25/08 D/L 208 07/17/08 654 08/02/08 S/L 368 07/26/08 655 08/05/08 S/L 369 08/02/08 656 08/13/08 Jane Mathison S/L 370 08/08/08 657 08/14/08 S/L 371 08/28/08 658 08/28/08 S/L 372 08/28/08 659 10/18/08 S/L 373 10/18/08 660 11/06/08 D/L 209 11/17/08 661 11/08/08 S/L 374 11/25/08 662 11/14/08 D/L 210 12/07/08 663 11/19/08 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 HopeChestNews@aol.com 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 - 2 October 292 Ann Alexander DL 10/28/07 152 Judy Johnson SL 10/14/98 82 Arlen Anderson DL 10/24/98 44 Terry Juezk HL 10/12/98 307 Ed Aubitz SL 10/17/05 356 Janet Klein SL 10/31/07 61 Roger Beck SL 10/25/93 Pamela Krake SL 10/01/02 59 Jo Brouwer SL 10/22/93 129 Vern Kuehnl DL 10/05/02 305 Judy Cannon SL 10/09/05 304 Doris Oman SL 10/05/05 14 Mack Croyle. Sr HL 10/04/89 1 Heather Penick LL 10/05/00 100 Harold Ezzone DL 10/25/00 101 Kathy Rabbitt DL 10/27/00 Sharon Flatequal SL 10/07/03 58 Norman Rathbun SL 10/19/93 30 Mathew Gould DL 10/16/94 81 Sally Reagan DL 10/21/98 33 David Graves HL 10/11/94 4 Allen Sorenson LL 10/10/01 34 Ricky Gustafson HL 10/27/94 51 David Swanson DL 10/01/96 147 Gina Hanson DL 10/06/04 Melissa Thomason DL 10/30/05 220 Jane Harmon SL 10/29/01 43 Gaye Trcka DL 10/29/95 333 Ross House SL 10/26/06 52 Ellen Varney DL 10/26/96 306 Shirley Irwin SL 10/09/05 244 Dennis J. Weiland SL 10/11/02 218 Valdamar Jacobson SL 10/25/01 116 Hal Wenaas DL 10/07/01 November 153 Barbara Beck SL 11/18/98 335 Brad Knutson SL 11/03/06 Ron Bergerson SL 11/17/03 336 Hugh McDonald SL 11/03/06 173 Mary Cordes SL 11/01/99 175 Gordon Olson SL 11/02/99 164 Lisa Dekowski DL 11/01/05 141 Delores Opatz SL 11/09/97 174 Richard Fitzgerald SL 11/01/99 311 Roger Remer SL 11/17/05 310 Colleen Goodin SL 11/04/05 334 Darlene Reynolds SL 11/03/06 16 Cherry Hamlin SL 11/05/90 310 Sandra Sazama SL 11/04/05 177 Lester Hanson SL 11/17/99 Diane Sydnes 11/26/01 312 Robert Howden SL 11/26/05 63 Sandra White SL 11/15/93 224 Emma Jean Knopik SL 11/25/01 Page - 3 December Pat Chmieleiwski 12/01/00 87 James Laser SL 12/08/94 117 Pete Conwell DL 12/20/01 28 Joan Longmuir SL 12/06/91 166 Pam Cullen DL 12/07/05 106 Sandra Majeski SL 12/19/95 Linda Curran DL 12/25/02 314 Rose Otterstetter SL 12/27/05 227 Dennis Dahl SL 12/16/01 James Pratt DL 12/19/02 313 Ron Daily SL 12/12/05 Don Russell H 12/12/06 427 Gary Harris H 12/15/01 183 Pat Swirtz SL 12/31/99 Tom Hovorka H 12/01/03 181 Frank Vermeulen SL 12/03/99 182 Bob Kozieck SL 12/17/99 67 William Way DL 12/20/97 Diana Larson SL 12/12/07 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 firstname.lastname@example.org Change In the Hospital Any Board member See list elsewhere email@example.com Marget Schmidtke, 612-273-5796 or Financial Assistance Thoracic Transplant Social Worker 1-800-478-5864 Heart\Lung Status Ed Aubitz 952-457-8281 firstname.lastname@example.org Change Mentorship Program Eileen Vierow 651-483-3146 email@example.com Obtain your 612-273-5796 or Marget Schmidtke Transplant Number 1-800-478-5864 Heart Buttons Mary Paquette 651-450-9767 firstname.lastname@example.org * * * * * 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 - 4 In memory of loved ones and donors. Please remember them in your prayers We have lost more of our lung buddies: Dave Amato LL – Transplanted 02/25/04 Passed away 10/23/08 Barbara Stuart D/L - Transplanted 09/16/97 Passed away 10/18/08 Charlie Irwin, husband of patient Shirley Irwin Passed away 11/26/08 Donna Hagenah, wife of patient Chuck Hagenah Passed away 12/07/08 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 Marie Anderson In Memory of Ross Bourgeois Wayne Anderson Allen & Maureen Arbeiter Diane Caldwell Bourgeois In Memory of Carol Deichert Gary & Barb Broberg Dennis Deichert Julie Caron Paul & Kathleen Ditter In Memory of Nicholas Jolly Steven Fitch Kathy Jolly Rosemarie Gleason In Memory of Ralph Loftus’ donor Kathy Greising Ralph Loftus Steven & Rita Humble Richard & Sharon Hyrkas In Memory of Yvonna Maxwell Steven & Karen Hyser Sharon Flatequal Mary Johnson In Memory of Larry McKeever Julie Larsen Steven & Amy Larson Duane & Diane Lokken Joy McConnell In Memory of Steve Messner Nancy Meyer Jan Messner Mark Nyman Gordon Olson In Memory of Pete Nieman Thomas & Wendy Opine &Tony Johnson Kip & Barb Peterson Judy Spray Edward & Emily Pouliot In Memory of Joyce Richwine D.J. & Y. M. Schivone Lisa & Scott Olson Mike & Velora Schoenberger Paul & Colleen Theis In Memory of Barbara Stuart Cheryl & Richard Thurn Beth Karjola Mary Ellen Vetter Eileen Vierow Page - 5 Donations Thank you to the following people & organizations for their generous donations Eagles AERIE NO 3424 Jonathan Dahl Richard Fitzgerald JoAnn Miller Robert Smith Bridget Shaffer Candice & Mark Spout * * * * * HCN Newsletter & Database topics 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 will provide E-Mail notification to you when the latest issue is available online. To request this service please send an E- Mail to email@example.com 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 firstname.lastname@example.org. We would also like to hear of any patients who have passed away. If a caregiver or family member could drop us a note it would be appreciated. If you no longer wish to receive the Hope Chest News please initial and date the following statement and send it to the address below: I do not wish to receive the Hope Chest News newsletter ______________(Initial) Name: _________________________________________ If your residence, home phone, cell phone or E-Mail address has changed since you registered as a Hope Chest News member, please provide your new information below: Name: _________________________________________________________ Address: _________________________________________________________ City: ____________________________________ State: _______ ZIP: ________ Home Phone: _______________________ Cell Phone: ____________________ E-Mail Address: ______________________________________________________ Due to HIPPA rules, Marget Schmidtke (1-800-478-5864) needs permission from patients to release their name, transplant number and date to Hope Chest News. Tx Date: _____________ Tx #: ______ Tx Type: _______ (Single\Double Lung, Heart or Heart\Lung) Fill in the information needing updating and send this page to: Hope Chest News C\O Ed Aubitz 161 East 105th Street Circle Bloomington, MN 55420 Or you can E-Mail the information to email@example.com Page - 6 News from the HCN Board of Directors Kip Peterson, President (2010) 952-431-8442 PetersonKip@aol.com Ed Aubitz, Vice President (2009) 952-457-8281 firstname.lastname@example.org Judy Vermeulen, Treasurer (2011) 952-445-2497 email@example.com Kathy Greising, Secretary (2009) 651-738-2954 firstname.lastname@example.org Julie Caron, Director (2010) email@example.com Brenda Daml, Director (2011) 763-753-4169 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 (2009) 763-639-3937 firstname.lastname@example.org Mary Paquette (2009) 651-450-9767 email@example.com Eileen Vierow, Director (2009) 651-483-3146 firstname.lastname@example.org Harriette Wock, Director (2010) 651-439-1808 Hmw1808@aol.com The vacancy on the Board created when Ross Bourgeois passed away was filled by Ralph Loftus at the November 17, 2008 Board Meeting President’s Review With the Holiday season we often spend time with family and friends and reflect on our blessings. Those of us that have received a life saving organ transplant are truly thankful for this extension of our life. We are also very thankful for our donor‟s and their families. We hope for their continued healing and peace as they spend another holiday season missing their loved one. We are truly blessed to have each of our caregivers and the support system they provide for us. In some ways I feel that their journey may be more difficult than that of ours as recipients. We would like to send positive thoughts for all of the people still waiting for their transplant and hope that they remain as healthy as they can and that their time on the list will be short. Once again we have lost many of our friends this past year. They have all been a part of our transplant community and each of them will be missed. We especially remember their families and loved ones. I am so grateful for each of you and for all the relationships I have been able to form through my journey in transplant. I would like to challenge everyone to become involved in some sort of volunteerism in 2009. I guaranty it will make a difference in your life as well as that of others. Have a Great Holiday Season! Kip Page - 7 Treasurer’s Report A recap of HCN finances from September to December Income: 1. Fall envelope campaign - $1,030.00 in donations, Honorariums, and Memorials 2. Last of the Golf Tournament - $1,490.00 3. Eagles Pancake Breakfast in -$619.00, w/sale of tote bag $15.00 4. Herberger Coupon Books - $265.00 Total Income: $6,801.42 Expenses: 1. Fund Distributions to patients: Utilities-$650.00, Housing $1074.19 Medical $2150.00 (total 7 patients) 2. Funeral Baskets -$82.71 (2) 3. Miscellaneous: newsletter printing, postage and other office costs - $612.17 Total Expenses: $4569.07 A look back for 2008: Our Income was 13,929.86 over expenses, compared to 2007 of 8,630.28. Good Job everyone. Our biggest income comes from our the 2 Golf Tournaments that netted us $22,902.84 this was up from the 2007 total of $17,869.69 Our other fundraiser though smaller in scale brought in a fair amount also. They included, spring and fall envelope campaigns, Eagles Pancake Breakfast, Herberger Coupon Book Sale, Bake Sale, Memorials for our lost lung buddies, and sale of HCN items. We were able to help 22 patients with Housing, Utilities, and mainly Medical expenses. As of today we have $36,625.96 in the bank. Your board of directors has earmarked $5,000.00 plus interest for future (way down the road) building of a House for Lung and Heart Transplants here on University of Minnesota Campus for patients and families. Thank you all for a good year and have A VERY HAPPY HEALTHY YEAR IN 2009. Sincerely Judy Vermeulen Treasurer Page - 8 Hope Chest News has been the recipient of proceeds from three fund raising events held since the last Newsletter. Eagles Fund Raising Breakfast in Litchfield, MN The Hope Chest News held their second annual fundraiser breakfast at the Eagles club in Litchfield, MN. The event was organized by Hal Wenaas who is a double lung transplant living in Litchfield. We served Pancakes and French toast sausage juice & coffee for $6.00. All the proceeds went to Hope Chest News. We served over 150 people collecting $500.00 from the Eagles club and another $120.00 from a „donation jar‟ at the door. The tentative date for next year is Sunday April 19th- 8:30AM-12:30PM. Hal Wenaas Hope Chest News thanks the Eagles for their generous donation of their facilities, a manager to oversee the kitchen and food for this event. We also thank the people helping including people from Hal‟s family, friends, neighbors and HCN patients for attending to support the morning. Herberger’s Coupon Book sales Harriette Wock lead an effort to sell Herberger‟s coupon books in November. With the help of patients, family members and friends the event brought in $265.00 HCN plans to participate in the Herberger‟s event in the Spring. Please watch for the announcement via E-Mail in late January. Bake Sale sales Mary Paquette organized a Bake Sale on Monday, December 18th in the hallway outside the U of M Transplant Canter. The sale was from 9-4 and all the „goodies‟ were sold out by 1 pm! We had choc chip cookies, peanut butter blossoms, caramel corn with almonds, pumpkin bread, lemon bars, peanut butter cookies, praline cookies, double choc chip, ginger and white choc macadamia nut cookies, brownie bites and candy canes. Proceeds amounted to $160.00 We intend to do it again on February 8, 2009. More information on that later. Mary Paquette Fund Raising Items For Sale Item Price Contact Phone # Email Cookbooks $15.00 Judy Vermeulen 952-445-2497 email@example.com Logo Tote Bag $15.00 Eileen Vierow 651-483-3146 firstname.lastname@example.org Logo Jackets $35.00 Eileen Vierow 651-483-3146 email@example.com Page - 9 Reference Corner American College of Chest Physicians There are many, many resources concerning lung diseases, treatments, transplantation on the Web. The following is a „link‟ to one for the American College of Chest Physicians. It has some nicely done brochures you can download or review online covering various topics such as: Shortness of Breath Patient Education Brochure A Guide to Lung Transplantation Patient Education Guides on Cough http://www.chestnet.org/patients/guides/ * * * * * COPD Topics The COPD Foundation publishes newsletter three times a year that specializes in COPD specific information. Patients, family members, friends, physicians, researchers, and policy makers will find the COPD Digest a valuable resource. www.copddigest.org/ * * * * * CF Topics The Cystic Fibrosis foundation has many resources for patients with CF including locating a local chapter from among the 80 in the US, subscribe to their newsletter, watch informational videos and participate in fund raising events. www.cff.org * * * * * Pulmonary Fibrosis Topics The incidence of the various forms of Pulmonary Fibrosis is rising across the US. This as well as other Web sites gives information about the disease, resource to help patients and caregivers and funding for research. www.pulmonaryfibrosis.org/home.htm * * * * * Page - 10 Hope Chest News received the following letter from Anne Amato. It is a touching tribute to her late husband Dave who passed away in October. To the HCN Community, My husband Dave was a living lobar lung transplant patient who received his lobes from live donors At Fairview University Medical Center – which we live in Minnesota and stayed at the Radisson Hotel on campus for 4 months. Dr. Herrington was the surgeon and Dr Whelan was his pulmonary Doctor who did a wonderful job and saved my Dave…. I have attached a copy of the photo showing his donors – 3 total – 2 donors and a backup. What a gift and there are a lot of amazing people out there – a lot of good hearted people willing to help… In 2006 we did a benefit and raised $36,000.00 and gave to the university for Lung Research. They formed a foundation called Amato Family and Friends Foundation. Dave had his transplant on Feb 25th 2004 – which was Ash Wednesday. We were blessed with a second chance for Dave and valued every minute. Since his transplant Dave had a battle with the ongoing CMV virus and a pear size tumor filled with MRSA but he overcame both of these and beat the odds with his positive attitude and strong will to live for me and the family. In 2007 Dave came down with squamous cell carcinoma skin cancer on his head – so in 2008 underwent at the University of Chicago medical Center Treatments for head and neck cancer –In Feb. were told there were 2 spots on his lobes and since he was being treated they would just continue. They did start to shrink,,,, In April Dave came down with pneumonia and had an emergency treach put in – we were told it didn’t look good and called in the family to say goodbye. On Easter morning Dave woke up and said I was his wife…. Again with Dave’s strong will to live – he beat the odds again. Dave finished up his head and neck treatment at the end of May – at the end of June Dave underwent head and neck surgery to remove the rest of the cancer. At this time Dave’s head and neck were cancer free. But with the bad news that the cancer on his lobes have spread to 5 spots – Radiation would have been too risky – so Dave went with chemo – He fought till on Oct. 17th he took a turn – said goodbye to all of us and told us he was tired – please don’t be mad – he loves us but just can’t fight anymore. Dave was in allot of pain and never complained. On October 23rd at 10:10 pm with me laying by his side and family all around Dave passed peacefully. His pain and suffering is over. God how I miss him so much and my days feel so empty – but I know Dave fought for us and now we need to be strong for him. He is the love of my life and my best friend and I will cherish every memory. Thank you for all your support when we were in Minnesota. Below are 2 links - one to the obituaries which shows Dave with me and his mother - but also there is a video on that page that can be watched if you would like. http://snipurl.com/779va And then another from the paper called the legacy which people can write things about Dave http://snipurl.com/77b03 Please feel free to take a look at these and learn allot about what a difference he made in so many peoples lives…Please feel free to share this with everyone in the newsletter. Thank you Anne Amato Page - 11 A note from Judy Vermeulen Hello Everyone from Sunny California. Frank and I are doing great and he just celebrated his 9th Anniversary of his Lung transplant. I would like to share the words of our son on this occasion. WOW! 9 Years! Happy Anniversary on your transplant Dad! I can't express how happy I am that you were able to get that transplant 9 years ago. I can't imagine what my life would have been like if you were not able to be at my wedding, be there for the birth of Jessie, and be able to experience the past 5 3/4 years of Jessie's life. I never would have dreamed 9 years ago that you would be able to spend a day at the beach with us in California, ride the Pirates of the Caribbean ride at Disneyland with Jessie, and take a walking tour of the USS Midway with me in October 2008! God gave us all a miracle that day 9 years ago and I pray that we will be able to spend many more years with you and enjoy many more of life's experiences together! Happy Anniversary Dad! We love you! He also was there for the 4 other grandchildren‟s births, we have traveled the US from east to west and are enjoying our time together and sharing it with our family and friends. Acknowledging your “Gift of Life” This following article was in the Letters to the Editor section of the Minneapolis Star Tribune on July 5, 2008. It highlights the need for those of us who have been transplanted to acknowledge the special “Gift’ we have received from our donors. While a letter can be difficult to write it is a duty we have. If a response is returned from the donor family, it is a reward. If there is no response, its not because of you but because of the loss the family is feeling ORGAN TRANSPLANTS - Acknowledge the 'gift' Over the last 11 years, articles about successful organ transplants have had one thread regarding organ/tissue donor families -- to reference them almost in a whisper while the bugles blare with a bias to donation promotion. It is true that many organs and tissues are recovered for transplantation at the time of someone's death. Our family experienced that 11 years ago with the loss of our 25- year-old daughter, who died of a stroke. Donors and donor families make this "Gift of Life/Gift of Love" as an act of charity, a charity that is a continuation of God's love for mankind. That love is the legacy of the deceased person and carries God's love to the organ/tissue recipient. It is that love, then, that enables the recipient to continue sharing their own respective love with his/her family, friends and hopefully with the donor's family. In the June 25 article, "Ailing Fargo tot defies the odds by getting lucky -- twice," the mother of a 20-month-old heart transplant patient said, "I thank God that they did decide to give that gift. I won't know what it's like to be on the other side. But I know it wasn't an easy choice." Well, from the other side, we did not receive any acknowledgment from any recipient until more than six years after our daughter's death. We have learned that a prompt communication from any one of the recipients would have helped us with our grief process. It would have provided a direction and a positive energy. We feel that if recipients would accept the motive for the "gift" as being an outpouring of God's love, they should not be reticent about sending a prompt and simple "thank you" note to the donor's family. Donor families are not so much in need for condolences as they are in need of consolation. J. WILLIS WESLEY, WATERVILLE, MINN Page - 12 HEART DISEASE In 2007 Hope Chest News altered its Article of Incorporation and By-laws to include heart patients. Because most of our current patients are lungs, it was thought that some information about disease of the heart that could result in a transplant would be good to include for general knowledge. The following article was submitted by one of our newer heart transplant patients. Heart Disease is an umbrella term for a number of different diseases affecting the heart. They include: Arrhythmias are abnormal heartbeats usually caused by an electrical “short circuit” in the heart. The heart’s electrical system sends signals around the heart, telling it when to contract and pump blood around the body. Arrhythmias cause the heart to beat less effectively resulting in the interruption of blood flow to the brain and to the rest of the body. If the heart is beating too fast, the heart’s chambers can’t fill with the right amount of blood. If it is beating too slowly or irregularly, the right amount of blood can’t be pumped out to the body. Coronary Heart Disease (also called Coronary Artery Disease) is a condition in which fatty deposits accumulate in the cells lining the wall of the coronary arteries. These deposits build up gradually and irregularly in the large branches of the two main coronary arteries which encircle the heart and are the main source of its blood supply. This process, the building of deposits, is called atherosclerosis, which leads to the narrowing or hardening of blood vessels supplying blood to the heart muscle. Narrowing or hardening of the blood vessels results in ischemia, or the inability to provide adequate oxygen to the heart muscle and can cause damage to the heart muscle. Complete occlusion of the blood vessel leads to a heart attack. Cardiomyopathy refers to a change in the muscle structure of the heart. As the cardiomyopathy progresses, the heart muscle becomes enlarged or abnormally thick or rigid. The heart becomes weaker and less able to pump blood through the body. Cardiomyopathy can result from various causes, including prior heart attacks, viral or bacterial infections, and others. It can lead to heart failure, arrhythmias and edema in the lungs or lower extremities. Extrinsic Cardiomyopathies are where the primary pathology is outside the myocardium itself. They include: Alcoholic Cardiomyopathy - is due to the direct toxic effects of alcohol abuse, which weakens the heart muscle. Coronary Artery Disease - is a disease of the artery caused by the accumulation of plaques within the walls of the arteries that supply the myocardium. Angina pectoris (chest pain) and myocardial infarction (heart attack) are symptoms of this Congenital Heart Disease - is present at birth and is a heart defect or defect of blood vessels near the heart. Ischemic Cardiomyopathy - is a restriction in blood supply generally due to factors in the blood vessels. Page - 13 Hypertensive Cardiomyopathy - is a result of chronically elevated arterial blood pressure. Valvular Cardiomyopathy - is any disease process involving one or more valves of the heart. Inflammatory Cardiomyopathy - involves inflammation of the heart muscle and/or the tissue surrounding it. Intrinsic Cardiomyopathy is weakness in the muscle of the heart that is not due to an identifiable external cause. They include: Dilated Cardiomyopathy (DCM) - is the most common form. The heart, especially the left ventricle, is enlarged and the pumping function is diminished. Hypertrophic Cardiomyopathy (HCM) - is a genetic disorder caused by various mutations in genes encoding barometric proteins. The heart muscle is thickened, which can obstruct blood flow and prevent the heart from functioning properly. Arrhythmogenic Right Ventricular Cardiomyopathy (ARVC) - arises from an electrical disturbance of the heart in which heart muscle is replaced by fibrous scar tissue. The right ventricle is most affected. Restrictive Cardiomyopathy (RCM) - stiffening of the walls of the ventricles and resist the normal filling of the heart with blood. Heart Failure (also called Congestive Heart Failure) is a condition in which the heart can’t pump enough blood to the body’s other organs. The “failing” heart keeps working but not as efficiently as it should. As blood flow out of the heart slows, blood returning to the heart through the veins backs up, causing congestion in the tissues. Often swelling results. It occurs mostly in the legs and ankles, but it can also happen in other parts of the body. Heart failure can result from coronary artery disease, scar tissue from a past heart attack, high blood pressure, heart valve disease, cardiomyopathy, congenital heart defects or infection of the heart valves or the heart muscle. Hypertensive Heart Disease occurs when high blood pressure damages the artery walls. The walls become weak and are likely to become clogged and hardened. Because of this the heart has to work harder in order to pump blood through the arteries. If the arteries become too clogged, blood clots can form and cut off the flow of blood altogether. Hypertension can cause arteries to have an aneurysm or a hemorrhage. Inflammatory Heart Disease is a condition caused by reaction to an external factor, such as an infection caused by bacteria or a virus, or an internal factor. When the body produces antibodies to fight the infection even though the infection is long past, these antibodies end up targeting the body’s own tissues or organs. Pericarditis is an inflammation of the lining of the heart. The pericardium is a thin tissue sac that the heart sits in. It covers the surface of the heart and helps protect it from movement and infection. When inflamed, it presses against the heart, and as it rubs against the heart muscle, fluid can leak into the sack making it hard for the heart to pump effectively. Page - 14 Myocarditis also results from an infection, and is an inflammation of the heart muscle itself. It may cause conditions such as dilated cardiomyopathy or trouble with the electrical signals in the heart, which leads to heart rhythm problems. Valvular Heart Disease is any dysfunction or abnormality of one or more of the heart’s four valves, including the mitral valve and aortic valve on the left side, and the tricuspid valve and plutonic valve on the right side. In a normally functioning heart, the four valves keep blood flowing in one direction and with the right timing. In valvular stenosis there is a narrowing, stiffening, thickening, fusion or blockage of one or more valves. In valvular regurgitation blood leaks back in the wrong direction because one or more of the valves is closing improperly. Mitral valve prolapse is a condition in which the two flaps of the mitral valve cannot close properly and may result in blood leaking back into the left atrium. Atresia is a condition in which one of the valves has not developed and is completely closed at birth. Sources used for this article were: American Heart Association, Inc.; Micronutra Journal; iVillage, Inc.; Nemours Foundation; About Kids Health; RxMed and Family Practice News * * * * * Hot Weather Forecasts and Safety Information from the NWS Even though it is December and the temperature hovers in the single digits, both above and below zero, its never too early to think about the effects that the other season in Minnesota brings! The following article can be of use to everyone not just transplant patients so please share it as you see fit. Heat related deaths outpace fatalities in several severe weather categories. Based on a 10 year average from 1992-2001, excessive heat claimed 219 lives each year. By contrast, floods killed 88, tornadoes 57, lightning 52 and hurricanes 15. We in the transplant community can be more at risk than the general population. This Web site gives you the possibility of seeing the conditions in the major cities in the country. The data includes information on the Heat Index, UV Index as well as hints of warm weather safety. http://www.crh.noaa.gov/mpx/hotWx.php The National Weather Service's Mean Heat Index 3 to 7 day forecast can make you aware of potentially dangerous heat conditions developing in the next week. The UV Index is a next-day forecast of the amount of skin damaging UV radiation expected to reach the earth's surface at the time when the sun is highest in the sky (solar noon). 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 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 Fairview University Hospital 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, press on! 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.