PATIENT'S NEWSLETTER by yaohongm

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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 hopechestnews@aol.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 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 - 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   eca123@comcast.net
  Judy Vermeulen, Treasurer (2011)      952-445-2497   javfpv@aol.com
  Kathy Greising, Secretary (2012)      763-383-2255   kjgreising@aol.com
  Julie Caron, Director (2010)                         julicaron@gmail.com
  Brenda Daml, Director (2011)          763-753-4169   larrydaml@q.com
  Ross House, Director (2012)           763-593-9745   agsector@popp.net
  Ramona Foore, Director (2011)         952-431-2884   rfoore@charter.net
  Vern Jackson (2011)                   651-696-2962   vjacks49@yahoo.com
  Hinda Litman, Director (2011)         952-935-1687   hlitman@hotmail.com
  Ralph Loftus, Director (2012)         763-639-3937   rrloftus@embarqmail.com
  Mary Paquette, Director (2010)        651-450-9767   mnangel29@yahoo.com
  Candace Sprout, Director (2012)       612 338-3419   mandccando@earthlink.net


                            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         mandccando@earthlink.net
 Change
 In the Hospital        Any Board member        See list elsewhere   hopechestnews@aol.com
                        Marget Schmidtke,       612-273-5796 or
 Financial Assistance   Thoracic Transplant
                        Social Worker           1-800-478-5864

 Heart\Lung Status
                        Candace Sprout          612 338-3419         mandccando@earthlink.net
 Change
 Mentorship Program     Ross House              763-593-9745         agsector@popp.net

 Obtain your                                    612-273-5796 or
                        Marget Schmidtke
 Transplant Number                              1-800-478-5864
 Heart Buttons          Mary Paquette           651-450-9767         mnangel29@yahoo.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   javfpv@aol.com

Logo Tote Bag    $15.00    Judy Vermeulen     952-445-2497   javfpv@aol.com

Logo Jackets     $35.00    Judy Vermeulen     952-445-2497   javfpv@aol.com


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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