“I suppose I started this transplant journey at age twelve when I crawled in the neighbors bushes to try my first cigarette. Habit started and continued in to my fifties. My breathing started giving me problems in my late thirties, at that time I was told I had asthma and allergies. I ran with that, couldn't be the cigarettes I loved. I was given inhalers and nebulizer and those continue to be an everyday part of my life for over twenty years now.
The really bad breathing and lung infections started about ten years ago, I was having a hard time getting to work, walking up the stairs to the bedroom at night and just doing regular activities of daily living. I had to quit my job in 2007 as I was having a hard time getting from the parking lot in to my work place without having to stop to catch my breath every so often. I was referred to Barnes in 2008 and at that time deemed too healthy for a transplant but put on supplemental oxygen 24/7.
I started pulmonary rehab and tried to stay strong. In 2009 I got the call from Barnes that I was ready to start transplant testing. But once again they thought I was too healthy and sent me back home to lose some weight and get caught up on some inoculations and have a colonoscopy. I returned to Saint Louis and the transplant hospital every spring and finally in spring of this year, 2012, I received the word that I was ready to be listed. It was a long time in coming for me! I had been saving money like crazy with the thinking that I would have to relocate from my home in Wichita Kansas to Saint Louis to wait. I was told I could live with my brother and mother at the lake 3-1/2 hours away!
A wonderful way to be able to save that money for living in Saint Louis after the transplant. I initially was told I would have a 6-9 month wait for donor lungs but once the results of the antibodies tests came back that all changed. I have very high antibodies, it seems that 95% of the population will not or does not match me so that means only one in twenty will match. They have now said my wait could be a long one, maybe two years. The good news is I am in pretty good shape. The bad news is I am away from home and away from my husband and children, my dogs and my friends,
MY LIFE! I am lucky to have a family that cares about me, a brother that lets me live with him, a mom who wants to be my caregiver and a husband that hangs in with me thru thick and thin. I am sure this Caring Bridge journal will be nothing but boring until the day I receive my call, then my family will be able to use it to keep you updated in an easy way. To those of you that take the journey with me, thank you, and please say a prayer for my future donor and their family. Without them I will not be able to continue my life.”