Valerie Delsoin

The Journey of a Haitian Woman with LAM

I was first diagnosed with Lymphangioleiomyomatosis (LAM) in May 2016. LAM is a rare, cystic lung disease that usually strikes women during the childbearing age. In LAM lung disease, muscle cells that line the lungs’ airways and blood vessels begin to multiply abnormally. These muscle cells spread into areas of the lung where they don’t belong. This results in increased difficult to breathe normally on a daily basis.

I began to notice subtle changes happening to my body as time went by. First I notice my lack of stamina throughout the day. It was becoming difficult to maintain my stamina at work and at home with my husband and two children. I started experiencing shortness of breath throughout the day with the simplest of tasks. Along with my shortness of breath, I started to feel fatigued more often and for longer periods of time. These unexpected symptoms I was experiencing were an unwanted disruption in my life. As my body started to slow down, this led me to unable to function properly, which ultimately led me to the hospital emergency room.

As soon as I entered the emergency room, I felt like everything around me moved so quickly and I couldn’t keep up. I remember my oxygen dropping so drastically that the hospital immediately admitted me. I had to undergo multiple tests to hopefully figure out what was happening to me. After waiting a few weeks for the results of these tests, in the end a biopsy result diagnosed me with LAM. I knew that this would be the start of a long and difficult journey.

I started my journey with Brigham and Women’s Hospital in Boston, MA in August 2016. I met with my transplant team and started the process for evaluation of treatment. At this point I became oxygen dependent with a co2 tank for my oxygen treatments along with taking medication to keep my lungs more stable. I became more connected with my doctor and specialists and working with them to complete my medical clearance to get a new pair of lungs. During the first year, I had so much support from my family and friends especially from my Aunt. She was my biggest support. She would come with me to appointments, and trust me I had a lot. Unfortunately she passed away at the end of that year from Ovarian Cancer. Not a day goes by that I am not grateful to her for making that first year more bearable for me.
After I was diagnosis I had so many thoughts running through my head all at the same time. I felt scared, confused, stubborn, ashamed, depressed, and very angry. What was going to happen to me? I wanted to run, but I couldn’t. What do I do next? What would happen to my family, my children? They needed me. I didn’t want to cooperate with the doctors. It was so overwhelming to deal with. Everything I do is for them, because I know they need me. There was no way I was going to fight this illness and let it win.

Eventually I had to turn around and see things differently, in a more positive way. I had to change my way of thinking about life, making peace with myself spiritually, psychology, and emotionally. I realized that the only way I could fight this illness is to push through. I needed to be there for my kid’s milestones. I needed to be there for the birthdays, the proms, the graduations, all of it. So I turned myself to God completely and prayed to him to provide me with support to continue this difficult journey. I let God fight for me; God got me.

I no longer feel depressed, ashamed, or like I am a failure. I started cooperating with the doctors in making tremendous strides to meet the goals I needed to get that lung transplant. I am aware of transplant risks but I don’t let it bother me because I am now on top of my game. But I survived all of that I am in a good place. I was crushed but didn’t fall down completely. I am ready for transplant. I am ready to start a new life with my children. I am winning.

Please donate to my story. Please donate to help me complete this long and difficult journey my family and I have been traveling on for years. Your donations will help me pay for my medical expenses during and after my transplant surgery. Donations will help me get the medical equipment that I need that my health insurance won’t cover. Donations will allow my family and friends to visit me while I’m in the hospital recovering. Please take action by sharing my story with family, friends, co-workers, and fellow members your community.