Najah is sharing her story of hope and resilience as part of our “Thriving with LAM” series for Worldwide LAM Awareness Month 2020. Lymphangioleiomyomatosis (LAM) is a rare lung disease without a cure.
Najah was diagnosed in 2007. We’re grateful to her for telling her story and offering her advice for living and thriving with LAM.
October 2007, I was sitting in lecture hall between nursing lectures when it felt like I took my last breath. It was a moment I will never forget. It literally felt like someone had taken a rope and cut off my air supply.
My friends drove me to the hospital where they told me I had suffered a 60% lung collapse. I was 23 years old, healthy and extremely active. My family and I couldn’t understand why this was happening.
The next day after having a chest tube inserted, I was told that I had an incurable lung disease and ultimately would probably not live past 10 years. Devastation, confusion, anger, anxiety, sadness, are just a few words to describe the feelings I experienced that day.
I stayed in the hospital for one week and ultimately returned to finish my nursing school. I graduated college and resumed my life, in denial, as if nothing ever happened.
Fast forward to 2010, I was working at a state psychiatric hospital, where I was kicked in the chest while restraining a patient. I was seen by Employee Health and returned to work the next day. A few days later, a frantic doctor called to tell me my lung was collapsed and I needed hospitalization immediately. I was confused because I worked for three days without any symptoms.
Again, I was hospitalized, but this time for two weeks, with three different chest tubes. The doctors again brought up the name LAM, something I placed in the back of my mind three years prior. They showed my parents the cat scan, and my lungs were described as looking like cottage cheese.
My lung wouldn’t reinflate, so I was scheduled for a partial lobectomy. I was sedated and ready for the procedure, but at that very moment, the X-ray showed that after two weeks my lung had finally reinflated.
Again, I resumed life as normal, having two healthy pregnancies and giving birth to my daughters in 2011 and 2013. Due to my history, I was considered a high risk pregnancy because of the LAM diagnosis, but I never displayed any symptoms, even exercising throughout.
In early 2014 while working, I felt like I was having a lung collapse, the same shortness of breath and chest pain. Luckily I work at a hospital, so the ER was just a wheelchair ride away. Fortunately it was not a collapse, but just some of the symptoms that come along with LAM. It was that day that I first learned about The LAM Foundation, from a well informed ER doctor.
I immediately got connected and went to my first LAM Clinic appointment in NYC spring of 2014. I was scheduled for labs and PFTs. Although it was seven years post diagnosis, this appointment and having these tests done, made the diagnosis feel real for the first time.
There was no way to know how much, if any, decline I had since diagnosis or if the pregnancies caused my disease to progress. I was advised that I should consider birth control and not having anymore children. However, I procrastinated with the decision and became pregnant and gave birth to my third daughter in 2015.
In 2016, I was advised that I needed to start sirolimus (the only approved treatment for LAM), and in 2017 was prescribed oxygen for exertion and exercise. The oxygen prescription took a toll on me mentally, because I am an avid gym member and I couldn’t possibly go from one of the most active members in class to being hooked up to a tank.
It took a lot of support, prayers and encouragement from my loved ones for me to finally have the courage to go the gym with my oxygen tank. There were uncomfortable stares, whispers and lots of anxiety and tears for many weeks and months following the oxygen prescription.
Fast forward to 2020, and from what I’ve been told, I have become one of the most inspirational members at my gym. I have not let the oxygen keep me from doing what I love, which is exercising and taking part in group fitness classes.
You’ll see me doing HIIT, Step, Combat classes, weight lifting, etc. I rarely take the low options or modifications, because I am lucky enough to still have a very high endurance level. Some people still stare, some people offer encouraging words and some people ask questions; my favorites are the people who thank me, for still being there and pushing them to exercise without me even knowing it.
LAM has taken me through emotions that I never thought I would ever experience; placed me in roles I’ve never imagined; but it has also given me a different perspective on life. I truly believe this disease makes me a better nurse and more empathetic to my patients. It makes me more understanding to people living with silent battles.
Is it possible that the three pregnancies could have exacerbated my disease? Yes. Would I go back and do it differently? Absolutely not!
For many years after my diagnosis, I was in a dark place and felt like I had no reason to live. I often thought to myself, I’m going to die within ten years anyway, so what’s the point? My daughters are the reason I didn’t give up on life. They gave me something to live for; they gave me the strength to be strong and fight LAM on good days and on bad days.
While there were and are still times I get emotional and wish I never had this diagnosis, I am also thankful that I do. It’s an emotional roller coaster at times, but it’s given me the opportunity to show my daughters and others what resilience looks like. I know that I was chosen by God for this fight and because I believe in his purpose for my life, I am no longer afraid.
If I can continue to inspire others to not give up, then I know my purpose is being fulfilled. I am forever grateful for the support, love, understanding, and prayers I’ve received over the years from family, friends, co-workers, and even strangers.
Thank you for reading my story and like I always say, I have LAM, LAM doesn’t have me!
I am a wife to a very supportive husband and mother to three amazing girls, that I had post LAM diagnosis. I have been a diehard Mental Health RN for ten years. Working in this field, has helped me deal with the many emotions that come along while living with this disease.