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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.

Updates (38)

July 18, 2023

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.

July 17, 2023

Update: I need your help again. I recently started dialysis, and now that the pandemic has settled some, I need to explore options for a kidney transplant evaluation since my Chronic Kidney Disease is Stage 4. I'd rather not wait until Stage 5 to start the process and see if I'm a candidate. I'm starting by sending away updated criteria for an evaluation to a few different centers so I can pinpoint exactly what Medicare and my supplement will cover and what might not be covered that I'll have to fundraise for. Any help or donations will be hugely beneficial.

My kidney function has been destroyed by both TSC and LAM as well as the impact of immunosuppressant drugs I take for my lungs. Furthermore, drugs I tried before the transplant to slow growth I developed problems with after transplant so my treatment options are extremely limited.

Please watch this page for updates. Since I'm not sure what my expenses will be yet or which center may accept me, I have not set a specific goal. As I know more, I will post more, but I wanted to refresh this page to start fundraising again.

Guestbook

July 18, 2023

Always impressed with your tenacity and proactive nature. Here’s to future success!

Ariana Del Negro

July 18, 2023

Sending you best wishes from a TSC Family in Alaska. Keep fighting!

Rebecca Racenet

December 17, 2016

So happy to hear you are recovering successfully! Thinking of you!

Kat Aldrich