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Transplant 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

Click on name to send e-mail.

 

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


 

 

Swapna Kakani


Alabama
Email: info@swapnakakani.com
Facebook or Instagram: @SwapnaSpeaks
Website: swapnakakani.com                 

     

Swapna was born seven weeks premature and was diagnosed with multiple intestinal atresias (short bowel syndrome). Shortly thereafter she had her first surgery when she was two days old, and was put on parenteral nutrition (PN, or IV nutrition) and enteral nutrition (EN, or tube feeding).
In twenty-eight years, Swapna has had sixty-five surgeries, including over thirty central line placements, a Bianchi lengthening surgery, a STEP lengthening surgery, and, in 2014, an isolated small intestine transplant. Swapna says, “Growing up, I was determined to live a life as similar to my peers, although my daily routines were starkly different.” She went to school with two backpacks—one for school books and one for her EN—and in the evenings, she hooked up to her PN and EN. She says, “I received EN from a low-profile G-tube sixteen hours a day every day for twenty years; and PN from either a Broviac/Hickman central line or port for twelve hours a night three to seven times a week for twenty-five years and counting.”

In college, Swapna learned to do her own health care while maintaining a demanding academic schedule.. At the age of twenty, Swapna decided to have one more surgery, a modified STEP and tapering surgery to improve her symptoms, and ultimately her quality of life. She thought surely this would be her last surgery and her last hospitalization. Unfortunately, this led to another surgery, complications, more surgeries, and more complications. She developed fistulas that were very painful and had a severely negative effect on her quality of life.

In 2012, she, in her own words, “made the hard and bold decision to have a total enterectomy to take out the small and large intestine—the same intestine my family and I had spent my entire life saving.” After surgery, she was completely dependent on PN and IV fluids. Her G-tube was used as a 24/7 gravity drainage tube. She was not allowed to eat any solid food by mouth. Despite these new challenges, Swapna was pleased to be free of the burning fistulas. She went back to college and graduated in December 2013 with a bachelor’s degree in psychology. She gave the commencement address with her PN backpack on!

In 2014, Swapna was listed for an isolated small intestine transplant. This decision came, she says, “after much consideration, a commitment to my faith, and an acceptance of the worst outcome—death.” On June 18, 2014, she received the transplant, and three weeks later was able to eat solid food for the first time in three years. One thing Swapna and her family hadn’t anticipated was that, after being dependent on HPEN all her life, she now is learning how to eat and sustain herself on approximately 2,000 calories, taken orally, per day.

In the last four years after the transplant, Swapna has endured fungal and bacterial infections, and bilateral hip replacements after being diagnosed with avascular necrosis of the hips. Today, she likes to say, “my hips don’t lie,” as she travels across the country as a professional speaker and healthcare advocate. Swapna has also created a Facebook group for pre- and post-intestinal/multivisceral transplant patients and their family members (“Intestinal and Multi-visceral Transplant Support Group”). She is involved in advocacy surrounding legislative and regulatory issues of importance to the HPEN community. This fall, Swapna will be starting graduate school in public health and healthcare administration at University of Alabama at Birmingham.


“My story is filled with joys and hardships,” she says. “I am grateful for the fulfilling life I have been able to lead and the amazing people I have been able to meet on this journey.” Swapna says, “I am excited to expand my advocacy efforts as an Oley Ambassador, where I hope to continue to pursue my passion for health policy and improvement for health-care delivery. I look forward to meeting others, because together we can support and learn from one another!”

                         


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 11/15/18

more Calendar

2/9/2019
Oley Regional Conference - Dallas, Texas

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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