Who am I ? Why did I start blogging?
My name is Nikki. I have Tuberous Sclerosis Complex (TSC) and Lymphangioleiomyomatosis (LAM). These are two rare diseases that are progressive & destructive.
The first (TSC) was a genetic disorder I was born with. I have benign tumors on several of my organs as a result.
In turn, when I developed them in my lungs, this is what lead to my LAM diagnosis at the age of 26. Some women do develop a sporadic type of LAM. This disease (LAM) causes a breakdown of the healthy lung tissue & impacts my ability to breathe.
Because of the destruction LAM has caused, I underwent a transplant evaluation test in August of 2015. Someone hit me head-on in my car in October that delayed my listing.
As of March 1, 2016 I was actively listed for a double lung transplant. They anticipated my wait time to be around 6 months. It was longer, 9 months. I received my double lung transplant on December 2, 2016. I was in the hospital 11 days before I was released, which was pleasantly surprising. I’d had other lung surgeries I’d been hospitalized longer for.
I found the news I needed testing for a double lung transplant shortly in May of 2015. I have fought LAM since at least 2003. Up until very recently, the life expectancy was around 5-10 years on average. Now it’s been extended, but that doesn’t hold true for everyone.
This is my journey as a young single woman out East navigating this healthcare labyrinth with my friends but also supported by family in the Midwest where I originally grew up.
I will be honest, I am fortunate to know several people who have been transplanted, but the majority are married and the few that I know who are single either have family close or live in other countries.
These don’t make their stories any less encouraging or valid, but I find myself struggling to marry up some of the frustrations that come along this journey with single hood (mainly in terms of resources).
I also have had so many experiences both personally & in my career over time that have positively affected my own navigation of the healthcare system. I try to blog about interesting topics in that regard to & make them relatable to those people in the trenches with chronic illness, disability, or rare disease (as well as transplant) in case they find my experience valuable or insightful in forging their own path.
The TS Alliance is a great resource for information on TSC.
The LAM Foundation is a great resource for information on LAM.
This excellent video explains LAM in simple terms.
How did I choose the title of the blog?
I’ve renamed this blog a few times, but this struck me when I came across it. I’m a journalism graduate so I sometimes look for figurative language (idioms are one form) that illustrate what I’m trying to say in a creative way.
“As I live & breathe” is an idiom for the expression “How Amazing!”.
I’ve cheated death 3 times already – I think that’s amazing.
After transplant (12/21/16):
After Transplant (2/4/17)
After transplant (4/17)
-Transplant evaluation August 2015.
– officially listed for double lung transplant on 3/1/2016.
– Time on waiting list 9 months.
– Double lung transplant surgery December 2, 2016.