Throwing Curveballs Our Way

Life has a funny way of pushing us down one path or another. Sometimes things have to be so blatantly obvious for us to accept a new direction in our lives. This coming Monday, June 9th, Tom and I will be moving! We are moving from Walnut Creek to an area called Redwood Shores, about half-way between San Francisco and San Jose. In this post I will focus on the questions you must be asking : What?, Why?, Where? and How?.

What? I know ... "what the heck?" is what we have been saying throughout this process. We never expected to pick up our lives and move while I am waiting for a transplant, especially this late in the waiting process. My health is really deteriorating, but continue reading and you'll see that it makes a lot of sense.

My Life Of Numbers

Numbers are all around us and recently I noticed myself paying more attention to the numbers in my own life. Not everyone can understand what my daily life is like, but most understand numbers. Numbers can give a more concrete picture of a situation.

The photo above represents my life seven days a week. The table is covered with seven days' worth of medicine to keep me alive. Seven days' worth of pills, aerosols, diabetes maintenance, and of course my new best friend ... Ollie, the oxygen concentrator. I want to point out something that isn't part of my everyday life, my appearance. To be completely honest, I put on my "healthy" mask for this photo shoot. I did this more for myself than for anyone else. I wanted to take pictures looking good because it is rare for me to get dressed in something other than loungewear, or to put makeup on, or even to dry my hair. Some days, showers don't get done altogether. So as much as I "don't look sick", I'm very sick. Looking all made up with my hair done, makeup on and a put-together outfit only happens every couple of weeks or so. It took many hours to get ready for these photos. My energy is low and it took me the better part of 5 hours to get my treatment done, eat, shower and be ready. Tom teased that it would take me until 4pm to be ready. Well I'm happy to report it only took me until 3pm, so HA! The rest of that photograph is an accurate depiction of my seven days a week routine.

Lungs At 26

It may be my birthday today, but CF doesn't give me a day off. CF has been kicking my butt the last few days, which is making my special day a little less bright. I'm trying to fight through the sickness I'm feeling, but a nap and a lot of tea drinking seem like the best presents I can give myself today. Tom has been so great with helping me through this time. Men seem to always want to fix things, and I just keep reminding him that cuddles, kisses and hand-holding are all that is required when I feel so crappy. He has done an excellent job at giving me as many cuddles as possible.

Events have happened lately that I have not got around to blogging about. In my little bubble of life it doesn't seem like such a big deal, but I figured I would finally share the latest happenings with all of you.

Last Saturday evening I got another phone call for lungs. Unfortunately, they were high-risk lungs once again. The doctor told me the donor was a prostitute and, at the time of testing at least, she was negative for HIV and all forms of hepatitis. The doctor went on to further explain that the donor's chest wasn't looking right and they were asking for more intensive testing to be done to find out more about the lungs and how viable they were. The high risk factor and the unknown viability of the lungs made me realize the lungs were not for me. As much as I wanted them to be right because I'm feeling so ready for new lungs, I knew it was in my best interests to turn them down. I was able to learn that I was the second person to be called that night. Another patient at a hospital in San Francisco was asked if they wanted the lungs first, but that patient turned them down as well.