Wednesday, May 28, 2014

life is short .. do what you can .. when you can

Went to the doctor's yesterday for a check-up. I went into the hospital two weeks ago with RSV and pneumonia and was pretty sick. I am home now, feeling much better but still on IV medications. My lung function, even though I'm feeling better is continuing to decline. I am currently at 30%. My doctor's are concerned that my windows of opportunity to get a kidney transplant are closing in. The trick is to do the kidney before my lungs get any sicker. Both of my sisters ended up being a match. Christine is a little bit of a closer match so she is going ahead with more testing to make sure she is definitely a candidate to donate her kidney. Hopefully we will be able to schedule surgery in the very near future. As soon as I am recovered from my kidney transplant, they are going to finish the few tests I have left to be re-evaluated to be re-listed on the waiting list for lungs. Right now my lungs are "too healthy", but with time they will just get worse. Thankfully right now I have not been needing oxygen. My breathing is horrible, but not being dependent on oxygen has been a blessing. I am okay when I am sitting at home, or doing things really slowly, but the second I have to do anything strenuous, I get REALLY short of breath. I feel like there is no oxygen and I'm just gasping for air. I'm in such a weird place right now. I wish that I was just able to breathe and that this chronic rejection miraculously disappeared. I want to go back to work. I want to make money so that Joey and I can start saving for a house. I want to be able to plan vacations again. I feel like once again, my life is on hold. People might think I am crazy, but as long as I am not dependent on oxygen - I am actually going to try to go back to work. Not full-time, but maybe once a week. To keep myself active, to make some money and to feel productive. I seriously hate not being able to contribute money at all. The NICU is a really safe area and the people that I work with are always looking out for me. I honestly think I'm more at risk of catching infections and viruses when I'm out in public, at work I use protective barriers and am always super careful. I am really so blessed to have a job that I love, that I cannot wait to go back to. Most people would actually like being in my place and not having to work. Since I am little, I have always liked working and staying busy. The more that is on my plate, the more productive I am. I'm definitely more of an "all or nothing" type person. Sometimes it's not the best characteristic trait, but I am pretty proud of my work ethic and wouldn't change it for the world. I know that the next few months/year is going to be rough. Things unfortunately are going to have to get worse before they get better. I think the only thing I can really do, is live each day as fully as I possibly can. I do not want to ever look back and have regrets, wishing that I would have done more.