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HPN Ambassadors
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The main goal of the Oley Ambassador is to heighten awareness of Oley resources whether it is in their geographic area, social networking community, clinical circles, etc. The “job” responsibilities can be flexible based on the Ambassador’s skills, available time, and interest. Please call (518) 262-5079 or e-mail metzgel@mail.amc.edu if you are interested in becoming an Oley Ambassador or learning more about what is involved. 

 

HEN = has experience with enteral (tube-fed) nutrition

HPN = has experience with parenteral (IV) nutrition

HPEN = has experience with IV & tube-fed nutrition

Parent = parent of HPN or HEN consumer

Spouse = spouse of HPN or HEN consumer

* = Has information on support group meetings

 

Please do not contact Ambassadors for solicitation, marketing, or research purposes.


Kristy Poindexter

1771 Limewood Ct.
Concord, CA 94521
(925) 349-4835

krisper29@yahoo.com

 

Kristy, the oldest of three siblings, became ill when she was 8 years old and thus began a long journey of doctors and hospitals. She was originally diagnosed with Achalasia, a disease of the esophagus. Soon after, she was misdiagnosed with Crohn’s disease, put on bowel rest and began her first round of HPN. For a period of time, she was able to tolerate HEN. She has been back on HPN for the last 10 years. Kristy is now a licensed esthetician. She enjoys knitting, cooking, gardening, and boating with her family. She lives her life on day at a time, and lives each moment to the fullest!


Bruce & On Braly

(Parents)

1239 E. 8th St.
Davis, CA 95616
(530) 867-2209

bruce.braly@gmail.com

 

The Braly’s son, Matthew, born in 1988, has short bowel and is on HPN. Feeling they had gotten much support through Oley over the years, they decided they wanted to give some back!


Darla Edwards

2764 Shearwater Way
Fairfield, CA
(707) 437-0241

cookie0241@aol.com

 

When she was just two years old, Darla was diagnosed with Congenital Intestinal Lymphangiectasia. Since then she has received additional diagnosis of Secondary Protein Losing Enteropathy, Secondary Hypo-Gamma Globulinemia, Asthma, and Spinal Osteopenia. She was HPN-dependent for eight years and also received enteral nutrition through a G-tube. She has experienced beginning stage liver failure, pitting edema, and suffers from compromised immunity. Though currently off TPN, Darla still receives IVIG and protein infusions. Now in her early 20s, Darla is a full-time college student majoring in Child Psychology. She is employed as a part-time child daycare provider and spends her free time drawing, singing, dancing, and doing jigsaw puzzles. She knows about the importance of achieving her goals in spite of the challenges put forth by her disease. Darla hopes that sharing her medical experiences and personal knowledge will help Oley members. She is very interested in developing local fundraisers and searching for new outreach avenues.


Jane Golden

PO Box 645

Watertown, CT 06795
(860) 945-6315

Janegolden@aol.com

 

As a result of short bowel syndrome, Jane has been on and off HPN since 1993. She feels strongly that survivors of short bowel need other survivors to talk to and see, since it is difficult for others to truly understand the lifestyle and concerns of people with the syndrome. She has worked hard to get back to a “normal” life and would like to share her experiences with fellow homePENers. Jane has a degree in Business Administration and is now retired from IBM. She enjoys horses and has a good sense of humor.


Daulton Heisey

 

 Lebanon, Pennsylvania

(717) 639-1800

Heisey-daulton@yahoo.com

 

 


When Daulton was six years old, he lost his intestines due to a volvulus. He was left with six inches of colon and six inches of duodenum. After the doctors explained the risks associated with living on home parenteral nutrition (HPN), Daulton and his parents decided he should have an intestinal transplant. After being tested and put on the transplant list, Daulton waited about a year before receiving a small bowel transplant in 2000. “This was one of the hardest things I have done thus far,” Daulton says. About a year into the having the new bowel, Daulton had severe rejection. He had emergency surgery, where they removed his small intestine once again.

After recovery, Daulton was told he had post-transplant lymphoproliferative disorder (PTLD). “I had twenty-two tumors throughout my body, on every organ except the heart and brain. A new challenge lay ahead,” he says. Soon after, Daulton and his mother attended an Oley conference. “It was one of the best choices I made,” he continues. “Oley has been very helpful for information, friendships, and to help me know I am not alone. Oley has given me the strength to deal with my condition and has given me opportunities to talk to other teens going through the same things.”

 Daulton has been on HPN since 2000, and in 2016 he completed nursing school. He “lives a fairly normal life,” he says, with a family of eight (people), two dogs, and three cats. He enjoys playing volleyball and bowling.

 

 

 


Barbara Klingler

1290 Farnsworth Ave.
Valkaria, FL 32950
(321) 724-4566

lbklingler@att.net

 

Barbara has been dependent on HPN for many years due to short bowel syndrome. Remembering the isolation she felt when she first started the therapy in 1986, Barbara makes a special effort to reach out to new Lifeliners so they know they aren’t the only ones fed intravenously. Barbara is also interested in discussing common consumer problems and new technology developments related to the therapy.


Lee Levknecht

 

 N441 Military Rd.

Sherwood, WI 54169

(920) 989-0196

kidsatplayfarm@frontier.com

 

 


Lee’s life with HPN began when he was diagnosed with Crohn’s disease in January 1969. He was finishing his last year at the University of Montana. He weighed 205 lbs. When he finished his student teaching in the spring, he was down to 150 lbs. His health deteriorated to a point where he had to cancel his first teaching contract.

For the next nine years, Lee averaged one surgery about every three years. First, a section of small bowel was removed, then an ileostomy was performed, and lastly, he had surgery on a stomach that was ready to perforate. In December 1977, he ended up in the hospital dehydrated, at a weight of 105 lbs. Lee says, “It was a bleak time in my life. I did not see improvement as a possibility. Then a special blessing occurred. I received a visit from a gastroenterologist that had just transferred from the Mayo Clinic. He shared with me about a new program that would feed me intravenously.” Within a week, Lee had a central venous catheter surgically placed to receive this IV nutrition. Lee says he could feel a change in his body even when he first woke up from surgery, laying in the recovery room: “I felt strength and energy again. I was extremely grateful for this renewal of life.”

For the next twenty years, Lee’s “daily feedings” allowed him to coach baseball and basketball.  As a result of the Disability Act of 1990, he returned to school and earned an MSED in School Counseling. He recently retired after twenty-two years working with elementary students. Lee stays physically active with biking, golf, cross-country skiing, and tennis. He is also involved with ministries for the cognitively disabled, nursing home residents, and youth from his church. He and his wife, Jane, have been married for fifteen years (2016).

 

 

 


Marcia Denenholz

(636) 532-9990

iamgrandmamarcia@gmail.com

 

 

 

Marcia was diagnosed with Crohn’s disease at the age of twenty-three. At that time, she had a six-month-old son. The Crohn’s flared every year, andl four years later, when she was pregnant with her second child, she got very sick and was hospitalized for a month. She was given only IV fluids, clear broth, and Jell-O, and couldn’t take many medications because of the pregnancy. After a month in the hospital and at three months’ pregnant, she weighed 85 pounds. She wasn’t well, but her baby was growing. When her mother died, she left the hospital for the funeral and, she says, “by some miracle I got better. Six months later I had a healthy baby girl. I was very lucky. Had HPN been available at the time, I probably could have avoided that lengthy hospital stay. But it was only 1969.”

Every year her Crohn’s flared up and she would be hospitalized. After two surgeries, in 1984 she was given an ileostomy. “I was scared,” she says, “and didn’t know how I was going to be a mother and continue my job as an administrative assistant for Washington University School of Law. But I persevered. I attended many ostomy meetings and I learned all I could. I was also very active in the Crohn’s and Colitis Foundation of America (CCFA), serving on the local executive board for many years as recording secretary.”

In 2001, Marcia was put on home parenteral nutrition (HPN) to rest her bowel. She didn’t eat anything for a couple of months. She says it was very hard psychologically. In 2009 she had another surgery and was put on HPN several times a week. And in 2013, after another surgery, she ended up with severe short bowel syndrome. She has a little over a foot of small bowel. Complications following the surgery left her on a respirator for ten days, hanging onto life. “That event changed me forever. I will be on HPN for the rest of my life,” she says, “but I am grateful to wake up every morning.”

Marcia keeps busy. She takes a literature class, does yoga, plays mahjong and canasta, and belongs to a knitting group. She is still involved with CCFA and the UOAA (United Ostomy Associations of America). She has been to several Oley conferences and says she looks forward every year to the next one. Marcia is now seventy-four years old (2016). She is married and has two children and two granddaughters. 

 

Rosaline Ann Wu*

14339 Hix Rd.
Livonia, MI 48154
(734) 464-2709

rosalinewu@att.net

 

With a lifetime of abdominal problems and nearly twenty years of being on HPN, Rose and her husband Bill have decided to take each new day as a gift and, like any gift we receive from a loved one, we treasure it and remember to thank God for giving us this special day. Rose and Bill share the credit and responsibility for trying to keeping the folks in their area connected and benefit from a strong “family” of lifeliners in their area. Rose and Bill have attended several Oley conferences and have experience traveling with HPN. Rose was the first recipient of the Lenore Heaphey Grassroots Education Award in 1994.


Bonnie Sjoberg

       

14942 62nd Ave
Milaca, MN 56353
(320) 983-2138

centuryfarm92@outlook.com

 

Diagnosed with pseudo-obstruction, Bonnie has been on HPN and/or HEN since April of 1995. Bonnie joined the Oley Ambassador team because she feels strongly about the importance of networking with fellow HPNers and group support. She offers fellow lifeliners her empathy, experience, strength, hope and encouragement. She’s attended Oley Conferences, and enjoys sewing as a hobby.


Jennifer Thiesse

       

111 Elm Street
St. Peters, MN 56082
(507) 519-1058

jentc30@gmail.com

 

Jennifer has been on home parenteral nutrition (HPN) since 1982, when she was diagnosed with FAP/Gardner’s syndrome. She has had a total proctocolectomy (removal of colon and rectum) with a continent ileo reservoir/Koch Pouch type ileostomy. She writes, “I have had benign tumors along my small intestine, desmoid tumors, and adhesions as part of my Gardner’s syndrome, which the doctors had to remove. In the end, I have short bowel syndrome (SBS) and motility problems. Ten years ago, I got leukemia, too. I have been in remission since my chemo treatments—praise the Lord!”

Jennifer has a master’s degree in rehabilitation counseling and works part time as a cashier at a local grocery. She is active in her church, and also enjoys flower gardening, golfing, computer games, and reading. Jennifer, who has always been ready to help individuals with questions and problems with their HPN, has been part of Oley since 1987.


Felice Austin

(Parent)

       

252 Pala Vista Cir.
Henderson, NV 89014
(702) 435-6007

fleecey@aol.com

 

Felice is a trained social worker and a single parent of two, including her daughter, Mariah, who is an Oley Ambassador and is on HPN therapy. Felice can speak about a wide range of parental challenges, including travel, insurance, advocacy and separation issues.


Mariah Abercrombie          

252 Pala Vista Cir.
Henderson, NV 89014
(702) 435-6007

abercrombimf@vcu.edu

 

Mariah is the daughter of Oley Ambassador, Felice Austin. She was born in 1981 and has been on HPN therapy since 1984 due to pseudo obstruction. She also has a gastrostomy and ileostomy. Despite these challenges, Mariah travels, swims, jet-skiis, dates, has been to summer camp, and has graduated from college.


Patricia McKenney              

62 Sunset Dr.
N. Salem, NY 10560
(914) 277-3275

 

Patty brings to us the benefit of her experiences and frustrations surrounding pseudo obstruction. Married and mother of four, Patty found herself dealing with the issues surrounding HPN alone and hopes to offer a support system to others, remove the feelings of isolation and help others adjust to life on HPN.


Roberta (Bert) Gelle*        

964 Rosewood Dr.
Elyria, OH 44035
(440) 365-0908

bgelle1@yahoo.com

 

Roberta has been on HPN since 1992, secondary to Crohn’s disease. She is very willing to lend an ear to anyone who needs support, and has lots of enthusiasm.


Tammi & Robert                
Stillion*

15300 County Rd. 10
Fayette, OH 43521
(419) 452-6131

Tammis705@aol.com

gffdchief@gmail.com

 

Tammi has been on home parenteral nutrition (HPN) since 2001 due to short bowel syndrome from a tumor. She lives with her husband, Robert, in northwestern Ohio. Tammi currently utilizes a Port-a-Cath® to infuse her HPN, but she also has experience with Groshong® catheters and PICC lines. Robert is her caregiver and is committed to being an advocate for HPN users, as well as advocating for the rights and responsibilities of caregivers. Tammi and Robert would like to help in any way they can, and encourage people to contact them with questions or just to talk. They are involved with a local support group that is growing into northwestern Ohio and southern Michigan and encourage you to contact them for more information on the meetings. Robert and Tammi look forward to hearing from you!


Judi Smith                          

                         

10 Cindy Dr.
Drums, PA 18222
(570) 706-1488

Judi_1@frontier.com

 

Judi has over 30 years of experience with chronic intestinal pseudo-obstruction, the many peripheral issues that accompany neuro-muscular disorders, along with the issues all consumers of IV or tube feeding share. As the years have passed, her perspective of viewing life’s glass as half-full has grown, as has having faith in the power of God and using creative methods of self-expression. One of the greatest things that she has learned is to view herself as an integral part of her team of health care workers. Oley has been most helpful in this regard. She has been on HPN since 1990, after 16+ years seeking an accurate diagnosis.


BetteMarie Bond                

           

56 Rustleaf Lane
Levittown, PA 19055-1421
(215) 946-0898

bettemarie@aol.com

 

With a diagnosis smooth muscle disorder, BetteMarie has been an Oley Ambassador since 1992. Bette has gained her independence while on HPN. She has experience with going to college, job interviews, working full time as an occupational therapist, and purchasing her own home, all while connected to a PCA. Her positive perspective, kindness, generosity, and “can do” attitude set a terrific example of what can be achieved while on therapy.


Betty Bond                                

(Parent)     

56 Rustleaf Lane
Levittown, PA 19055-1421                 
(215) 946-0898

eabondrn@aol.com

 

Betty is the mother of Oley Ambassador, Bette Marie. Betty offers support, as well as her experience as a parent of a child who grew up on HPN and as a nurse. She has volunteered for Oley at the Double H Hole in the Woods camp as a HPN nurse.


Eve Thomas                        

            

45 Sycamore Ave. Apt. 1618
Charleston, SC 29407
(864) 417-4652

evethomas22@gmail.com

 

Eve was diagnosed with idiopathic gastroparesis in 2004. She has been on both enteral (EN) and parenteral (PN) nutrition, but is currently off both. “I have quite a bit of experience with both HEN and HPN,” she writes, “and am free to answer questions anyone has. I have had a lot of experiences with gastroparesis (and other chronic illnesses), PICC lines, and central lines, as well.” Eve, who is twenty-eight years old (in 2012), also has a G-tube for venting. Eve is interested in starting a local support group. Please reach out if you are in her area.


Michelle Barford

            

1655 Panoha Dr.
Germantown, TN 38138
(901) 755-8924

michelle.barford2254@gmail.com

 

After being a nurse for over thirty years, Michelle became the patient in 2008 when she went to the ER with acute abdominal pain. She awoke from surgery to find out she had carcinoid cancer of the small intestine. Because it was so widespread, they closed her up after a second surgery and sent her home on hospice. Michelle says, “I have a T-shirt from Spamalot that says, ‘I’m not dead yet,’ and that became one of my many mantras.” She continues: “There isn’t any treatment for carcinoid except to cut it out, so I discharged myself from hospice in 2009 and had the ‘big’ surgery where 90 percent of my intestine was removed. After a year or more of denial I finally got my groove back! I have since tried to live every day to its fullest. My husband, Mark, is very supportive. The nurse/teacher in me wants to give back and I am looking forward to being an Oley Ambassador!”


Robbyn Kindle                      

            

1016 Hillview Dr.
Keller, TX 76248

robbynskindle@sbcglobal.net

 

Robbyn has been an Oley Ambassador since 1998 and brings to our network a desire to share what she has learned about life and health issues. She spent some time initially “mourning” the loss of her gut and has moved on from depression. She has gone into the field of nutrition, and is now a Registered Dietitian. In 2000, Robbyn underwent surgery for a multivisceral transplant - small bowel, liver, pancreas, and kidney, and after a long, hard recovery and still somewhat dependent on HPN/HEN, is doing well. She is very willing to work with consumers living on nutrition support and anyone with transplant concerns.

 



Updated 10/29/16

 

more Calendar

2/6/2017 » 2/10/2017
Feeding Tube Awareness Week

2/18/2017 » 2/21/2017
Oley exhibit at A.S.P.E.N.'s Clinical Nutrition Week

5/6/2017
Oley Regional Conference

This website is an educational resource. It is not intended to provide medical advice or recommend a course of treatment. You should discuss all issues, ideas, suggestions, etc. with your clinician prior to use. Clinicians in a relevant field have reviewed the medical information; however, the Oley Foundation does not guarantee the accuracy of the information presented, and is not liable if information is incorrect or incomplete. If you have questions please contact Oley staff.

 

Updated in 2015 with a generous grant from Shire, Inc. 

 

This website was updated in 2015 with a generous grant from Shire, Inc. This website is an educational resource. It is not intended to provide medical advice or recommend a course of treatment. You should discuss all issues, ideas, suggestions, etc. with your clinician prior to use. Clinicians in a relevant field have reviewed the medical information; however, the Oley Foundation does not guarantee the accuracy of the information presented, and is not liable if information is incorrect or incomplete. If you have questions please contact Oley staff.
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