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A Lifelong Journey

Swapna Kakani

 

Swapna has been dependent on nutrition
support her whole life.


I was born seven weeks premature, and shortly after was diagnosed with multiple intestinal atresias (which led to short bowel syndrome). I was immediately transferred to Children’s Hospital of Alabama, where I had my first surgery as a two-day-old baby. In the same surgery, I received a central line in my chest and a gastrostomy tube (G-tube) in my stomach, becoming dependent on parenteral and enteral nutrition (HPEN, or IV nutrition and tube feeding).


In my twenty-eight years, I have had sixty-five surgeries, including over thirty central line placements, a Bianchi lengthening surgery, a STEP lengthening surgery, and, most recently, four years ago, an isolated small intestine transplant. The goal from the beginning was for me to be free of IVs and tubes.

School Days
Growing up, I was determined to live a life similar to the lives my peers were living, although my daily routines were starkly different. From kindergarten through college, I went to school with two backpacks—one for my school books and one for my enteral (EN) feeds. In the evenings, unlike my peers, I would end the day by hooking up to my parenteral nutrition (PN) and EN feeding bags hanging on my personal IV pole. I received EN feedings from a low-profile G-tube sixteen hours a day every day for twenty years; and PN from either a Broviac or Hickman central line or a port for twelve hours a night three to seven times a week for twenty-five years and counting. Despite this extensive routine, I attended school just like my peers. It was my normal.

Every year, the routine would be interrupted with hospitalizations to treat the fearful central line infections. Thankfully, we were able to conquer both the bacterial and fungal culprits, and continue on with our normal. I graduated high school with a love for school, a commitment to community service, and experience as a member of our varsity tennis team. I made aces with my EN feedings running!

I went on to college, away from home, where I learned how to do my own health care while maintaining a demanding academic schedule, without the guidance of my parents. It was one of the best years of my life, physically, emotionally, and mentally. For the first time in my life, I learned how to eat more orally with the social help of my college roommates. Unfortunately, it was quickly evident that my gut could not take the stress of the extra oral intake along with the EN feedings.

After trying different regimens and going through a gut rehab program out of state, my family, the medical team, and I decided to try another modified STEP procedure. This time it would not be with my pediatric surgeon of twenty years, who had done all of my surgeries prior. It would be with a different surgeon, at a different center—my first time to transition from pediatric care to adult care. I was confident this would be my last surgery, and my last hospitalization.

However, the surgery resulted in several complications, and a two-year odyssey of surgeries, second opinions, and more complications, with four different surgeons at four different hospitals around the country. I was left with four fistulas connected from my small and large intestine and bladder to my skin at four different spots on the abdomen.

Difficult Decisions
To have the best chance of the fistulas healing and future quality of life, in 2012 I 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, I was completely dependent on PN and IV fluids 24/7. My G-tube was no longer used for feedings, but was instead used as a 24/7 gravity drainage tube. Because I had neither a small intestine nor ostomy, I was not allowed to eat any solid food by mouth. I drank clear liquids that came out into my drainage bag or I chewed and spit out solid food.
Despite this new routine, I had quality of life, I had a new normal. For the first time in over a year, I was free of the burning fistulas. I was determined to finish college. I graduated one and a half years later with a bachelor’s degree in psychology (December 2013). With my HPN backpack on, I gave the commencement address.

I was twenty-four years old with a college degree and I received all of my nutrition from an IV. I could not eat solid food. I had quality of life, but I was starving to eat. I spent every free minute watching the Food Channel, reading food blogs, and cooking elaborate meals for my family and friends. That was my life. And medically, there was no getting better; instead, it was either staying the same or getting worse. We had exhausted all of our options. But, in my teens I had decided I would never lose hope, and I would never stop fighting.

After much consideration, a commitment to my faith, and an acceptance of the worst outcome—death—I made the decision to be listed for an isolated small intestine transplant at the Cleveland Clinic. I fortunately only waited fifteen days on the transplant waiting list. On June 18, 2014, I received a small intestine transplant. On June 19, 2014, I woke up for the first time in my life with a fully functioning small intestine and no G-tube! On July 3, 2014, I ate solid food for the first time in three years. In the last four years, I have had milestones I had only dreamed of, and disappointments I could not have anticipated.

Challenges of Eating and Advocacy
My family and I learned that due to my short bowel syndrome journey, I never truly learned how to eat and sustain myself on an oral diet of approximately 2,000 calories/day. It was only after the transplant, when I reached the milestone of no more IVs and tubes, that I realized I needed to learn the routine of how to eat.
What can I eat? What do I tolerate? What is hungry? What is full? When should I eat? With the help of a team of nutritionists and a supportive family, I am learning how to eat and how to sustain myself on the correct amount of calories and fluids. It is my new new normal. For the first time, I do not have pain before, during, or after eating, like my normal growing up, and I am able to eat more food, in terms of both variety and quantity, in a day than I was ever able to before. The struggles currently are eating well consistently, absorbing what I eat with a permanent ileostomy, and staying hydrated with no colon.


My story is filled with joys and hardships. 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. As a result, I have committed my life to health advocacy and to sharing my story to inspire others to lead a life with hope, determination, and perseverance.
I am a professional speaker and a health-care advocate. I travel around the country giving talks to nonprofits (including Oley), corporations, and medical associations for the purpose of improving health-care delivery and the rare disease patient experience. For example, a common topic I talk about is the importance of central line infection control from the patient perspective. I have also created a Facebook group for pre- and post-intestinal/multivisceral transplant patients (called the “Intestinal and Multivisceral Transplant Support Group”). This closed group, comprised of patients, caregivers, and family members, gives those who are exploring the transplant option an avenue for asking questions to people who have had intestinal/multivisceral transplants, as well as a support group to those post-transplant, because the journey can be unique. The group has strict guidelines and rules, and is closely monitored.


Most recently, I have been very involved in federal and state rare disease advocacy. Last legislative session, I, along with other rare disease advocates, helped get a joint resolution passed to create an Alabama Rare Disease Advisory Council. The council will advise and educate legislators on health policy and initiatives for the almost 500,000 people in the state who have a rare disease.

In the past two years, I created Alabama Rare, a grassroots support and advocacy coalition for the rare disease community in Alabama. We have hosted an annual Alabama Rare Disease Day awareness event at the state capitol, and worked with the governor to pass a law to name February 28 as Rare Disease Day in Alabama and February as Rare Disease Awareness Month. We also hosted the first annual Alabama Rare Disease Patient/Caregiver Symposium. To augment my passion and efforts, in fall 2018 I began graduate school for public health, studying health organization and policy.

I am excited to pursue my passion for health policy, improvements in health-care delivery, and the importance of speaking up in health-care settings. I have enjoyed meeting so many Oley members and look forward to meeting more. We can support and learn from one another! Please reach out to me with questions about living independently or going to school with HPEN, transplant, advocacy, health-care policy—or anything else. I can be reached by email at info@swapnakakani.com, Facebook, Twitter, or Instagram at @SwapnaSpeaks, or through my website, swapnakakani.com.



LifelineLetter, November/December 2018
updated 3/12/19

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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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