Nicole Seefeldt

Nicole Needed New Lungs – Now needs a Kidney Evaluation Test

Nicole “Nikki” Seefeldt, a lifelong advocate, native South Dakotan, and east coast transplant, needs your help. Nicole has Lymphangioleiomyomatosis (LAM), a progressive lung disease that results in cystic destruction of the lung where the airway is blocked, limiting oxygen delivery to the rest of the body. In August 2015, the seriousness of her 12-year battle with LAM escalated to such a point that her doctors wanted to evaluate her to determine if she would be a good candidate for a double lung transplant! underwent evaluation testing in August of 2015. She listed on March 1, 2016. She also has Tuberous Sclerosis Complex (TSC), a genetic disease that causes benign tumors to grow in many of her organs.

She had her double lung transplant at the Hospital of the University of Pennsylvania on December 2, 2016 after a 9 month wait on the list. She was living with 12 percent of her lungs left during her wait.

Nicole grew up in Clark, South Dakota and graduated from South Dakota State University in 1999. From there she resided in New York City for 10 years then moved to Pennsylvania in late 2010 where she resides with a group of close friends. Today she needs the help of her family, friends and community.

Even though Nicole had good insurance through her employer, transplants are financially draining. Because her health deteriorated, she was unable to continue working in July 2015, which required her to go on COBRA. After her transplant, Nicole had stay close to the hospital for several months to recover and attend rehabilitation. Post-transplant anti-rejection medications must be taken for the rest of her life and they are enormously expensive. Nicole cannot face this challenge alone.

Additionally, now, even under Medicare, some drugs & medical supplies of hers are still expensive & some are not covered at all. She also faces a few more surgical procedures due to complications of her TSC.

In June of 2023, Nicole started outpatient kidney dialysis due to declining kidney function because of LAM and TSC and being on years of immunosuppressants.

NOTE: As of 7/18/2023 — Hi everyone, since my evaluation tests will likely be held in August. You can hold off on donating until I figure out exactly what my expenses will be and that I do in fact qualify. Once I find out, I will post them here. But to those who have contributed in the interim, I appreciate it because if I have an unexpected cost or test that isn’t covered, I now know I have enough in my fund to cover it.

She is starting the process of sending away for information to potentially receive a kidney transplant evaluation and see if she qualifies for a transplant. She has two centers she is exploring and has recently sent away for updated criteria on their programs and options.

To help with this financial burden of Nicole’s ongoing expenses, a fundraising campaign in her honor has been established with Help Hope Live, a trusted non-profit organization that has been providing community-based fundraising guidance for patients and families for more than 30 years. All donations are tax-deductible to the full extent allowed by law, are held by Help Hope Live in the Mid-Atlantic Lung Transplant Fund and are administered by Help Hope Live for transplant-related & medical expenses only. Please, consider giving.

For credit card contributions, please click the yellow Donate Now button.

Thank you in advance for your support. Keep an eye on this campaign page for updates and fundraising events. Nicole can be reached at [email protected].

With sincere gratitude,

Nicole “Nikki” Seefeldt and her Family and Friends