Support Meetings

August – December 2006

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.

Support Meetings:

-Weekly Mondays at 11:00 a.m. (no day meeting) on first Monday of month.

Evening meeting only at 7:00 p.m. on the first Monday of each month

No night group in January 2007 – Michelle Stessman, dietician – Eating Right – pre and post transplant for the February 5th evening meeting.

Caregivers Support Group:

-First Monday of the month at 6:00 p.m. prior to the regular support group.

Support Group Sioux Falls:

-Contact Jo Brouwer at or June Schnieder at

605-339-3067

Board Meetings

The Hope Chest News board meets the third Monday of the month in the 8th floor hospital conference room in the luncheon area from 12:15 to 3:00. This is the “Bridges” Conference room. We encourage participation from all members.

Transplants for 2006

Hope Chest NewsPage - 1

d/l transplant – 7/6/06

d/l transplant – 7/26/06

s/l re-transplant – 7/26/06

s/l transplant – 7/27/06

d/l transplant – 7/28/06

d/l transplant – 7/30/06

s/l transplant – 8/15/06

d/l transplant – 8/26/06

s/l transplant – 8/31/06

s/l transplant – 9/3/06

d/l transplant – 9/5/06

s/l transplant – 9/6/06

s/l transplant – 9/6/06

s/l transplant – 9/12/06

d/l transplant – 9/19/06

s/l transplant – 10/26/06

s/l transplant – 11/3/06

s/l transplant – 11/3/06

s/l transplant – 11/25/06

Hope Chest NewsPage - 1

As of 11/27/06 there have been 46 lung transplants

If any of the persons transplanted this year would like to have their name printed in the newsletter, please email or you can call 651-738-2954. If you let us know the date of your transplant and your transplant number, we can make a heart button for you.

Contact Marget Schmidtke for your transplant number

If you would like to share any personal stories about your transplant experience, or have questions, or information you would like to share with other lung transplant patients, please contact Bill or Kathy Greising, editors of the HOPE CHEST NEWS at or call 651-738-2954. You can also submit articles to Hope Chest News, 2000 Margaret St., St. Paul. MN 55119

Newsletter Changes

Being part of a successful lung transplant program has its drawbacks. Over the past few years our mailing list has almost tripled. In addition to increased mailing costs, we are also faced with increased costs associated with printing the newsletter. In the past, we have relied on the use of LifeSource’s copy machines to keep costs at a minimum, but we are now printing over 400 copies of the newsletter. To reduce costs further, we will be producing the newsletter on a quarterly basis. We are also asking any of you who no longer wish to receive the newsletter to indicate this on the form located on the last page of the newsletter.

The Newsletter is also available on line at our Web Site- Just go to the “Newsletter” tab on the left hand side of the page. You can view the newsletter on line, download a copy to your home pc or make copies if you wish. If you would prefer to save a few trees and read the newsletter on line, we will provide email notification to you when the latest copy is available on the web. Please send an email to if you wish to receive email notification.

Congratulations To All

Bill Greising – or # 651-738-2954

Thank You For Your Support

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Hospitalized and Feeling Bored??

If you are hospitalized,hospital staff cannot let us know. If you would like to let the support group know about your status, please call Bill or Kathy Greising at (651-738-2954). If you want visitors, let Bill or Kathy know, and they’ll get the “the word” out, otherwise we’ll just let everyone know so we can all keep you in our thoughts.

Forgot Something??

Did you move?? Get a new email address? More importantly – get your new lung?? The hospital and staff are not allowed to disclose any of your personal information to us. If you have any changes to your lung status, address, phone number or email address, please send these changes to Kathy Greising, 2000 Margaret St., St. Paul, MN 55119 or email her at .

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We’ve Missed You…

Marget has short-term parking passes for the group meetings if you need one. We don’t want anyone to stay away from the group meetings because of financial concerns.

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Financial Assistance Available

Hope Chest News is dedicated to providing emergency financial assistance to UofMN Medical Center, Fairview Lung Transplant waiters, recipients and their families as a consequence of their medical conditions.

Our resources are limited. Marget Schmidtke (the lung transplant social worker) is the contact person for this fund. Persons requiring assistance should contact Marget at 612-273-5796 or1-800-478-5864.

News from the Board

Discussions continue regarding fund raising activities. If you have some ideas and can’t make it to a meeting, send us an email at . We need some activity which will call attention to our needs and mission. We would like to do more for patients in need, but are constrained financially. We need an event which will provide a consistent source of funds to be used to administer our programs. Our hope is to have an annual event that would raise awareness and funds for our organization. At the present time we are looking at a Golf Tournament next summer or a play in the fall of 2007. If you have any contact persons who may be willing to provide items for a silent auction, door prizes, hole sponsors (if a golf tournament is held), please relay this information to Hinda Litman (952-935-1687 or email her at )

Mentoring Program

Hope Chest News is pleased to announce the creation of a Mentorship Program. The aim of this program is to provide help and support to University of Minnesota Medical Center, Fairview lung transplant patients and/or their caregivers by facilitating one-to-one dialogue between a Hope Chest News member seeking such personal support and a more "experienced" transplant patient or caregiver. Additionally, if possible, mentors and mentees will be assigned based on disease classification. Recent changes in the UNOS Lung Allocation Policy have decreased the time to transplant substantially, thereby resulting in less time to more thoroughly understand the transplant process and the risks involved.

If you are interested in becoming a “mentor” or feel like you could use some “mentoring”, please send an email to or contact Denise Dolan ().

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 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 mailed to: Judy Vermeulen, 796 Regent Drive, Shakopee, MN 55379-8261.

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We have lost more of ourlung buddies.

Lori Wething – retransplanted 5-5-06 – died 9-9-06

John Goodlad – transplanted 7/30/06 – died 8/10/06

Our prayers go out to the Wething & Goodlad families and for any others who have lost their battle to live.

Thank You

A special thanks to all those who have donated to the Hope Chest News either through memorials or personal donations

Memorials and Honorariums

In Honor of

Gina Hanson’s Birthday

Happy Birthday Gina! Paul and Linda Taber

In Honor of

Ed Aubitz’s One Year Anniversary

In Memory of

Marie Anderson, Donna Brown, Frank Fazekas, and Wes Rhode Thank you for all that you taught me. “Today is a gift, every day is Christmas – Life is good”.

In Memory of

Omer Germundson and Loren LeBlanc

Your friends Lyle and Shirley Lohse

In Memory of

Jerry Nelson

Your friends Judy and Frank Vermeulen

In Memory of

Carol Volten

Your friend Mary Davis

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Transplant Quilt

Denise Dolan is making a transplant quilt. She has asked us to include in this newsletter that it is imperative she get everyone’s permission so she can includeyour name on the quilt. Please let Denise know if it is okay either by email () or send her a letter saying it is okay to include you or your loved one’s name on the quilt. Her address is 1364 Case Ave., St. Paul, MN 55106 or you can call her at 651-771-0317. Thank you.

Improvements in Lung Transplantation

Over the last 18 months major improvements have been made in the process of lung transplantation. The New York Times ran an excellent article in the Sunday, September 24, 2006 issue on this topic. It was summarized and re-printed in the Minneapolis Star Tribune a few days later. The ‘link’ to the New York Times online article follows:

The article talks about changes that have taken place and the dramatic shortening of the wait-times for lung transplants. U of M Medical Center, Fairview Surgical Director of the Lung and Heart/Lung transplant programDr. Cynthia Herrington is quoted in the article along with other prominent lung specialists from around the country. The article also features our “own” CF patient Hannah Olson who was transplanted February 18, 2006.

CaringBridge

As has been mentioned in several issues of the Hope Chest News, one very useful tool available to anyone who needs to communicate a medical condition to multiple people is the CaringBridge web site. Just go to to access the web site.

CaringBridge is sponsored by the University of Minnesota, and offers a free service to publish information about you or a loved one’s medical condition on the Web for friends and family. A CaringBridge site can be set up at any time, it’s not limited to the post-transplant period. It helps avoid making multiple phone calls and emails and allows the patient and caregiver and family more time to do the many things involved with their recovery.

Setting up a web page takes just a few minutes and 3 steps. If you have any questions about the set-up process please feel free to call Ed at 952-457-8281 for help.

Recent Web “Discoveries”

A website sponsored by UNOS, and can be customized for the individual. It contains valuable information regarding various types of transplants, medications, problems, etc.

This website provides a “new” magazine which has information on all lung diseases, treatments, etc. and is appropriate for most all lung patients pre or post transplant or those who are not “eligible” for transplant. Click on “digital issue” and download a free copy of their magazine. It’s over 50 pages, so it will download faster if you have a high-speed connection. You can also subscribe to receive a printed copy of the magazine, but the annual subscription rate is $12.50 per year for four issues.

This website is sponsored by Astellas Pharmaceuticals,the drug company that makes Prograf. Has basic transplant information. Sign up for their mailings, answer a few questions about your transplant, and periodically receive “freebies” – recent packages have contained sunscreen and SPF 30 lip balm, plus articles regarding overexposure to the sun and skin cancer.

The website sponsored by the Pulmonary Hypertension Association. Excellent source of information on PH disease types, treatment options, ways to promote awareness, etc.

Celebrating 20 years of Lung Transplantation

The University of MN Medical Center, Fairview recently celebrated their 20th anniversary of performing heart/lung and lung transplants. There have been over 500 heart/lung, double lung, single lung and living lobar transplants performed at the University. To celebrate, a reception was held at the McNamaraAlumniCenter November 6, 2006. The party was a huge success, attended by physicians, staff, recipients, waiters and family members. Speakers included Dr. Marshall Hertz, Dr. Cynthia Herrington, Ken Jones (the first transplant), and Kip Peterson (Double Lung July ’03). Videos were shown of Dave Amato (Living Lobe Feb ’04), and David Murphy (Judy Murphy’s son and living lobe donor). Everyone talked about the impact of transplantation on their lives. We also had a special viewing of a Kare11 TV video that was originally televised in 1997, and featured the lung transplant patients at that time. Marie Anderson was prominently featured in this video.

Prior to the formal program, we were treated with a slide show containing pictures of transplant patients past and present.

Thank you to the University Staff and all personnel who made the evening a success. It was great to see old friends and meeting new ones.

Pictured above are Ken Jones and his wife Debbie. Ken’s surgery was the first heart/double lung transplant performed at the University of Minnesota Medical Center, Fairview in 1986. In the early years, the technique for transplanting just the lungs had not yet been developed Ken and his family wasat the party celebrating 20 years of Lung Transplantation at the University of Minnesota Medical Center, Fairview. After 20 years Ken is still going strong. Congratulations to you and thank you for coming and speaking. You are an inspiration to all.

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If you have any suggestions you would like to make to improve our organization or services to you, please contact any of your board members listed below or come to one of our board meetings.

Board Members

Harriette Wock, President
Kip Peterson, Vice President
Barb Peterson, Secretary
Judy Vermeulen, Treasurer
Ed Aubitz
Kathy Greising, Co-Editor, Newsletter
Bill Greising, Co-Editor, Newsletter
Jan Ankeny
Gary Broberg
Hinda Litman / 651-439-1808
952-431-8442
952-431-8442
952-445-2497
952-881-1471
651-738-2954
651-738-2954
952-922-8390
651-456-0340
952-935-1687 /









Frank Vermeulen / 952-445-2497 /
Nancy Meyer / 952-944-4080 /
Eileen Vierow / 651-483-3146 /
Denise Dolan / 651-771-0317 /

Fund Raiser Items For Sale

Cookbooks$15.00 ($10.00 is tax deductible)

Contact Judy Vermeulen for cookbook orders - 952-445-2497 or email

Logo Tote bags $15.00

Logo Jackets $35.00

Contact Eileen Vierow at 651-483-3146 or email to purchase either of these items.

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Want a unique way to celebrate your transplant or remember your donor?

For a $25 donation to “The Family Circle” arm of the 2007 Donate Life Rose Parade float, a Rose will be placed on the float which will appear Jan 1, 2007 in the Rose Parade in Pasadena, California. This event is televised world wide. The float is used to promote donation awareness. Please visit their website at for more details.

‘Tis the Season

For Colds and Flu, that is. If you and your family members have not yet received your flu shots, please do so as soon as possible. The following information is from the National Institute of Health
Cold, Flu, or Allergy?
Figuring Out What's Ailing You
Symptoms / Airborne Allergy / Cold / Flu
Fever / Never / Rare / Usual, high (100-102°F), sometimes higher—lasts 3-4 days
Headache / Rare / Rare / Common
General Aches, Pains / Never / Slight / Usual; often severe
Fatigue, Weakness / Sometimes / Sometimes / Usual, can last up to 3 weeks
Extreme Exhaustion / Never / Never / Usual, at the beginning of the illness
Stuffy, Runny Nose / Common / Common / Sometimes
Sneezing / Usual / Usual / Sometimes
Sore Throat / Sometimes / Common / Sometimes
Cough / Sometimes / Common, hacking / Common, can become severe
Chest Discomfort / Rare / Mild to moderate / Common
Treatment
Transplant patients should always contact their coordinators / -Antihistamines
-Nasal steroids (prescription only)
-Decongestants / -Antihistamines
-Decongestants
-Aspirin, acetaminophen (such as Tylenol) or ibuprofen for aches and pains / -Aspirin, acetaminophen or ibuprofen for aches, pains and fever
-Antiviral medicines (see your doctor)
Prevention / Avoid those things that you are allergic to, such as pollen, house dust mites, mold, pet dander, cockroaches / -Wash your hands often
-Avoid close contact with anyone with a cold / -Wash your hands often
-Avoid close contact with anyone with the flu
-Annual vaccination
-Antiviral medicines (see your doctor)
Complications / Sinus infection, asthma / Sinus congestion, middle ear infection, asthma / Bronchitis, pneumonia; can be life-threatening

Take Precautions to Combat Infections

Organ recipients should be aware of ways to combat germs and be sure to call their doctors at any sign of infection. Prevention of illness is the key to a healthy life, and check-ups are vital to preventing illness.

Because the risk of bacterial and fungal infection is greatest in the first few weeks after your surgery, it may be necessary to take the following precautions:

• Avoid indoor crowded places like stores, movies, restaurants and churches in the first few months after transplantation.
• Avoid people with known infections or illnesses.
• Avoid taking care of animals.
• Avoid working outside or in your garden.
• Wash your hands frequently--it's a safe and effective way to stop some infections before they start.
• Good dental care is important. You should brush and floss daily, and see the dentist regularly. You may also need an antibiotic before routine dental cleaning visits.
• If you get a cut or scrape, cleanse the wound and apply a clean, dry dressing. If any sign of infection develops (fever, pain swelling or redness), contact your doctor.
• Avoid buildings under construction or destruction.

The article above is re-printed from the transplant living web site

Proper Hand Washing to Stay Healthy

The most important thing that you can do to keep from getting sick is to wash your hands.

By frequently washing your hands you wash away germs that you have picked up from other people, or from contaminated surfaces, or from animals and animal waste.

What happens if you do not wash your hands frequently?
You pick up germs from other sources and then you infect yourself when you

• Touch your eyes
• Or your nose
• Or your mouth.

One of the most common ways people catch colds is by rubbing their nose or their eyes after their hands have been contaminated with the cold virus.