Swapna Kakani was diagnosed at birth with a rare chronic disease, Short Bowel Syndrome. For 27 years, Swapna has lived with supplemental intravenous nutrition and a feeding tube (from 0-24 she had a gastrostomy tube and from 24 onwards she has had an ileostomy). She has undergone several surgeries at multiple hospitals throughout the United States. In 2012, she made the difficult decision to have her dysfunctional bowel removed and as a result, was not able to eat solid food for almost 3 years. In spite of this, she loves to cook for her family and friends, calling herself a true “foodie,” and has become well-versed in nutrition. This lifelong battle with chronic illness has also led Swapna to become a passionate advocate and public speaker, raising awareness about the experience of life as a patient and overcoming personal adversity.
Check out a few highlights from our exclusive interview with Swapna below!
Can you tell us about time that you have been challenged by your illness?
I entered college in 2008. It was two hours away from home, and I remember so clearly moving into the dorm, meeting new people, getting set up with my new roommate. It was such an exciting time. After my sophomore year, I went home that summer and had a surgery I hoped I would quickly recover from. Unfortunately, that surgery resulted in complications that made going back to school almost impossible. I had to do online classes, and ultimately had to pause on school in 2010. I moved back in with my parents, spent my time in hospitals and with sub-specialists, and ultimately had 13 additional surgeries between 2010 and 2012. Mentally, I was extremely disappointed I was not going to graduate with my peers. Physically, I was exhausted by the complications. I did want to give up. It was such a hard time, and I worried I may never go back to school.
How did you overcome that challenge?
After my last surgery in 2012, I had no intestine and no colon. I was completely dependent on a 24/7 IV, and my GI contents were being trained into a bag I wore on my leg. But I did have my mental power back. I persevered through a very hard time, and I went back to school. I finished a year and a half later than I was expected to graduate and at my graduation, I was the commencement speaker.
It meant so much to me to have hit those lows of surgery after surgery, and ultimately to stand in front of my peers and give the commencement address. I wore my IV (TPN) backpack on stage, and had my drainage tube under my dress and gown. I did it.
I learned that it wasn’t only about physically coping, it was also about learning how to mentally cope. I’ve realized that there is no timeline. It doesn’t matter when you do things, only that you didn’t give up. Because I took the time to accomplish a personal goal at my own pace, I was able to graduate at the top of my class. That commencement speech was the first time I realized I had a platform to speak on. It led me to the advocacy work I do today.
Can you tell us about the importance of securement in your life as a patient?
I live with a Double Lumen silicone central line. It’s my vehicle to life. It has been since my birth – I’ve received IV nutrition through my central line for 27 years and counting. It’s a life saver, but it’s also a curse. With Short Bowel Syndrome and a central line, I’m always at risk for a central line infection. I’ve had 25 infections and I’m on my 31st central line right now. I know the power of it. I know what it’s been able to give me, but it’s also been really challenging to maintain it and work through the infections.
Now I can proudly say I’m 13 years line infection free! I wish I could shout to the world what I do that makes that happen, but I can’t. There’s no one perfect formula. I can say my diligence in taking care of it, and making sure it is safe, clean, and secure, is constantly on my mind.
My central line is pretty long, around 12 inches. From the exit site, if I let it dangle it comes down to my groin area. Letting the line dangle is not only an issue for contamination, it’s also not comfortable (or I don’t think it is anyway). It is so important to have the line secured and safe, and away from GI tubes, drains, and ostomies. Securement and dressing integrity is vital for me, and a huge part of my daily routine. It’s become as normal as a bra.
I recently tried out Mastisol on my skin to the left of my IV dressing before securing my central line with my favorite tape. Three days later, the tape is secure and it looks just the same as it did on day one!
What is one thing you wish people knew about life as a patient?
It’s sometimes hard to communicate how many things I need to manage on a daily and weekly basis. There is so much time and energy put into the logistics of being a patient. As you worry about all those outward tasks (like ensuring medications are delivered on time) you also have to worry about inward tasks (like hydration, making sure you are infusing on time, etc.).
I live a public, functional life. But the work that goes into making that happen isn’t always super visible to people. This will always be a part of me and a part of my life. The way we manage life with illness is so important.
This piece was created for Eloquest in partnership with Mighty Well.