This is by far the most difficult blog I’ve written. As I’m typing I can’t stop the tears from streaming down my face. Knowing what I’m about to share makes my heart ache in a way I’ve never experienced. This blog has been a work in progress, most days I’ve been too emotional to write more than a few lines or so. I’m still trying to sort through the pieces and come to terms with this devastating situation that has hit my family like a hurricane. Through the tears and emotional rollercoaster, I’m learning some of the greatest lessons of my life. Yet I don’t want to learn them this way, not through the potential loss of a loved one accompanied by mind-numbing pain and sorrow. I don’t think any of us truly comprehend how precious life is until it’s threatened to be taken away from us. My hope by sharing this very intimate and personal blog is that together we can all learn from this unfortunate and heart-wrenching situation, then make any necessary changes in our own lives without having a doctor tell uswe only have ‘X’ number of days or years left to live.
A few weeks ago I received the shocking news that my oldest sister was in the hospital, struggling for her life. Less than two months prior, she’d been in an automobile accident while on vacation. They took X-rays of her chest, which led to a CT scan, and to everyone’s astonishment they unexpectedly found her lungs covered in cysts. The doctor gave his best guess as to what may be causing the problem, but it was a small county hospital that wasn’t equipped to deal with her unusual situation. She was told to see a pulmonologist immediately when she returned home. For several reasons (denial runs deep in our family) she put off seeing the specialist right away. She was also struggling with a kidney and sinus infection, which she was treating and hoped to have under control before she saw the pulmonologist. Unfortunately she waited too long. She suddenly became so weak she could hardly function and was struggling to catch her breath.
By the time she was admitted to the hospital she’d gained nearly 30 pounds of fluid and her potassium and sodium levels were so low it was amazing she was still functioning. The doctors struggled to slowly increase these levels, while draining the fluids from her struggling lungs, as they began running numerous tests. What they saw in the CT scan, along with her symptoms, has led them to diagnose her with Lymphangioleiomyomatosis (LAM), an extremely rare lung disease that mostly affects women in their mid 30’s and 40’s. There are less than 1500 documented cases in the United States, making treating her difficult. In LAM, abnormal, muscle-like cells begin to grow out of control in certain organs or tissues, especially the lungs, lymph nodes, and kidneys. It is a genetic disease, which except for a few rare instances only affects women, so the hormone estrogen also may play a role in causing LAM. Unfortunately there is no cure, and the disease tends to worsen over time. How quickly the disease worsens varies from woman to woman.
I keep asking myself over and over again, why did this have to happen to MY sister? She is the most kind, sensitive, thoughtful, and loving person. She takes extremely good care of her body with an exceptional diet of organic foods, exercise, and she has been an advocate of complementary medicine even before it became the ‘fad’. All she ever wanted in her life was to get married and become a mother. She tried for over 20 years to become pregnant and has undergone every fertility measure available in order to conceive. At last, five very happy years ago, she and her husband were able to adopt a baby boy. Her life was now complete, and watching her as a mother would absolutely melt your heart. Finally, she has been living her dream until less than a month ago, when she was delivered this horrific blow. While in the hospital her doctor roughly gave her five years to live, possible eight years if she is able to get a lung transplant. What do you do, how do you function, and in what manner do you live your life after finding out you only have a short time left to live?
My sister is my hero now more than ever. When given the
