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.

50 feet. That is how much oxygen tubing now follows me around the house. I obviously can't take Ollie around with me so we keep him in the garage and I have, as I like to affectionately call it, my "tail" of oxygen cable following my every move, up and down the stairs, into the shower, into bed, and trying to trip up Tom whenever possible!

24% is my current lung function, and dropping.

3 is the number of breathing treatments I do each day to clear the mucus from my lungs. I look forward to the day my treatments go away and I have more freedom with my day.

I counted the days on the calendar and I have now been on the transplant list for 196 days. Although I have had two phone calls for high-risk lungs, I never thought I would be waiting this long for my perfect set of lungs. Managing my own expectations and having patience has been the hardest part of this entire process. Finding the emotional strength to fight for my life every day does get harder as each week passes.

3,000 to 4,000 is the number of calories I should be ingesting each day. Effort is the word that comes to mind when talking about my nutrition plan. It is the same for people who want to watch their weight and diet, it takes effort to make the right decisions every day. It takes planning and structuring my day to allow that many calories into my body.

My numbers after transplant should look a bit different to the current numbers in my life. After transplant I would like 100% lung function. I know I will have 0 treatments a day and 0 feet of oxygen tubing following me around. There will be less planning and preparing of food because my body will work more like a well-oiled machine and less like a leaky gas tank.

For now, these numbers are my life. They aren't good, they aren't bad, they are just the numbers that follow me around. I know the numbers will change for the better in due time. My hope is for 2 very healthy, pink lungs soon!