April is National Donate Life month, so this is an appropriate time for a blog post. If you are not already an Organ Donor, please become one. The impact you will have on an individuals life, their family, friends, and their community is really beyond words. Presently, several people close to my heart need organ transplants. My Aunt needs a new liver, my friend Talana needs new lungs, and my friend Kari also needs a new liver. (Both Talana and Kari have cystic fibrosis like me.) Follow this link to become a donor today, and please spread the word to your friends, families, and your community. http://www.lcnw.org/
As the third year of my transplant life rolls along I find myself still in a continual state of transition. Most other transplant patients I know say it took them about five years before they felt like they returned to a state of "normal." That time line seems to be true for me so far as well. Being able to breath is the dominant feeling, but year to year my body is still making a lot of changes and I still don't feel like I have reached my new equilibrium. It is an interesting journey to say the least.
I tried working two different jobs in 2011, being back working felt good because I had not been able to do that in such a long time, but it was also very difficult. Even though I can breath now, I still do not have normal energy levels. I cannot work a full eight hour shift and do all the other things that normal healthy people do in a work day. Like go to the grocery store, do laundry, run a few errands, or go out for a beer with co-workers. I basically have to go home immediately and go to sleep, so that I can have enough energy to get through the next work day. The most difficult part of this is explaining my restrictions to bosses/managers. The fact that I look so normal is a disadvantage in this situation, it is VERY difficult to paint the picture of life with CF and transplant life and the challenges they present when you don't look sick at all. When I was hauling around an oxygen tank all hollowed eyed and emaciated and weighing maybe 118lbs it was fairly easy to convince people I was ill.
I struggle everyday thinking about what the hell I am going to do for income and a job. I do not qualify for state disability aid, and I am way too young for my social security to kick in. I am presently back in school (yay!) slowly working towards finishing my bachelors degree someday. But even if I am able to finish that, I don't know what kind of work I can do. I will need an INCREDIBLY understanding boss and a job with lots of flexibility, (which I am so far convinced doesn't exist.) I don't think I will ever be able to work a 40 hour week either.
I have been talking a lot with the social worker at my transplant center, asking what other patients have done with this problem. She is an awesome lady and very honest, and is very open about the fact that they do a really good job of getting people new organs but a horrible job of preparing people for life after transplant. I have always had to think outside of the box in order to participate fully in life, so I will just continue to do that and hopefully figure something out someday.
In the meantime I am enjoying being back in school, and it has been really sunny in Seattle and sunshine always makes everything better. (Especially in April in the Pacific North West.) It is beautiful in the city, there is still snow in the mountains, and climbing season is right around corner. All in all life is good.
(Oh, AND I can eat spinach again! Why is that exciting you ask? Well, I have this long list of can't eat food because of transplant and spinach was on that list because there were so many instances of E. coli and other gross bacteria that can make you sick, growing on spinach so it was blacklisted for people with compromised immune systems. But it is safe again, so I can eat it now! It never fails that when someone says you can't do something, or can't have something, you want it really bad. Believe it or not, but I have been craving spinach for the last three years, and now I can finally have it! Spinach salads, here I come!!)
I hope life is treating all of you well, I apologize again for the delayed blogging. Please help spread the word about Organ Donation.
Love and Light,
Emily
