Monday, July 19, 2010

This is the hard part of recovery...

This is the hard part of recovery, I feel like getting better is slowing down and that I am sort of stagnant. I feel like I am just waiting for this year to be over, but I must realize that at the one year point everything is not going to be magically better, it is all going to take time.
This part of the year has been especially hard seeing all of the people I went to high school graduate from college and go to graduate school. People ask me where I am in school, and it is so embarrassing that I am now so far behind-no one (except my mom) takes into account that I have had a heart transplant.
This week I had to drop the summer school classes I was taking. I decided it was just too soon to get back to school-even if it was just online. But I signed up for the same classes next semester, I may or may not take them, but now that I am signed up for them I at least have the option. This week was also hard because the admissions lady from SMU called me 3 times a day harassing me about when I was going to sign up for school. I finally had my dad call me, she was actually really nice to my dad, which is weird because when I talked to her in December and told her I had a heart tx in November, she did not feel that was a good enough excuse. I think it is funny how even at 22 years old people still believe your parents over you, like if I was ever late to work I should take a note from my mom saying that I was feeling icky and my boss would be okay with everything. Anyways, they are trying to push my start date for SMU to January-maybe.
Now on to the good parts of my week:
I finally got in touch with the pain management clinic and got my first appointment! I am happy to start with them so hopefully I can stop taking pain medications (which isn't great for your body) and it will all help with my recovery process and getting healthy.
I finished 2 books-I always feel better when I finish something-I need to accomplish things. I finished "Always looking up" which was okay, it is more about politics (which I am not really into) than dealing with a life threatening illness, but it is well written and made me want to learn french. I also finished "Bitter Sweets" which I would not recommend reading at all, I read it because I love to read about middle eastern culture, it fascinates me for some reason. The only part I liked about the book was learning more about the culture.
I am about a week away from finishing the New Testament!!!! I know I did not comprehend half of it, but I have been working on this since transplant.
Tomorrow we are painting Katies room and next week is a week of Clear Lake which I think will definitely be good! The picture is of me and Papa last summer at Clear Lake.

Sunday, July 11, 2010

More CTDN-Eden Run to the Lake

So today was another fun filled CTDN day-which was so nice because I was literally in bed all day yesterday so I would wake up this morning to make it to Eden.
Nana and Katie walked the race and the picture, above is their "before" picture. Dad and I worked the CTDN booth with Robert (a heart and Kidney recipient of only 4 months!) and his wife. It was nice to put a face to the name that everyone was talking about at the TRIO meeting. And is amazing how he doesn't even look sick 4 months out. Seeing people that have just had their transplant looking so good is so inspirational to people who are still on the list. I remember being at Kaiser's Heart Transplant support group and seeing a man in his 70's that had his heart transplant 8 weeks prior-he looked like a normal healthy human. He was my "vision" for everything being okay-I though that if he can do it (and look that good 8 weeks post op) than I definitely can do it.
I also met Natalie-who is a double lung transplant. It is always good to meet other recipients/family members and compare stories. She had a crazy (sad) story. She needed her transplant after an infected lung puncture from a biopsy. But she is doing great 18 months out and ran the race. Again, another inspiration-maybe next year I will at least walk it. She also seemed like she was "mentoring" a 19 year old girl waiting for a heart/lung transplant. I love that-there is not many young women with transplants, and it is just nice to see them sometimes.
I was a little nervous to work the booth-I had never done it before and did not really know what to expect. It was pretty easy, nothing serious happened, but some of the things people said were hilarious. One guy said he believed in organ donation, and "had the dot" when it was a sticker, but did not like how the new dot was printed on the card. He felt that he wanted the choice-I was (thinking): "What?!?!? First of all-you would be dead-you would not get the choice and second the sticker was okay-but the sticker being printed on the card is not okay?!?!?!?" Another lady said signing up to be an organ donor was like asking to die-it puts the "thought" out. I thought this was cooky-but to both people, Roberts wife had the best response: "Well these two heart recipients are sure doing well with their organs" As Sheldon would say: Bazinga!
We got a few sign-ups, a lot of weird questions (one lady asked EXACTLY what happens-like she just said "What happens"-awkward!) we gave out a bunch of pens, key chains, VEGETABLE clips (hahah chip clips) and pamphlets.
Then I came home and crashed and slept for 5 hours-hahah, but it was all worth it!
Goal for next year: Do the Run to the Lake and work the both afterwards!

Friday, July 9, 2010

Transplant filled day-2

So this "morning" I did not wake up until about 12 (in the afternoon). And even at that point I was not even up-I was still exhausted from last night. I think I went to bed around 2 am after getting home at 12. I was sooooo tired.
Then I met up with Kara and we went to Berkeley. We were early, so we went to college and got lunch at La Med (my favorite!). Then, we went to this new hat shop and Kara got a Cloche and I got a feathered headband. The store was so cute, I wish I was working right now-I would have bought a million hats from there.
Then we went back to the campus and I did my talk. It was for the National Youth Leadership Forum. It was a bunch of JR. High/ High School Kids that were bored out of their mind listening to lectures the whole week on medical issues. I tried to be funny and make light of the "lecture", but I think that the students enjoyed the hearing my story. When you say you are a heart recipient, you usually get a longer stare than if you said you were like a kidney or liver. Anyways, it was also fun talking today because it was the first time I have spoken to youth. They asked the funniest questions, like if I have developed any skill my donor had, etc.
Then we drove home and I drooped Kara off and my family called me to go to Bancheros (my other favorite place!) It was so yummy! I normally love kids, but tonight I sat right behind a bunch of really annoying kids, I was joking that it was the best form of birth control ever! Being with kids like that makes me realize, maybe I am better at loving kids from afar-it was meant to be that I don't have any.
Then, I rushed home to do homework. I failed another test. I just don't know what is going wrong with me. I took this class last semester (but had to drop it for the TX) and had an A going, I have not done well on any of the tests. I wonder if my brain is every going to get better and when that will be. Anyways, I don't know what to do with this whole school thing-any suggestions?

The picture above is of my dog Stella-Luna-it just makes me happy!

Transplant Week

Today, my world revolved around transplant-and it was a good day!
I did a speech for CTDN at the main office in Oakland (right before the Grant/Meserly verdict!) about my transplant experience. It was so much fun. I feel like I really do actually help when I do this-by putting a face on a transplant patient.
Before I did my speech I met Gill, who has volunteered for 10 years with CTDN, and worked for them since December. I have heard of him-but never met him. He was such an inspiration and has an amazing story:
He is friends with an oncologist, who encouraged him to enter his blood into the blood marrow database-he did and a few years later they found a perfect match for a 19 year old boy with Leukemia! This was years ago when they took the marrow from your illiac crest-so you were either intubated or had a spinal block (epidural). Gill donated and the boy was CURED (but later succumbed to pneumonia). When he said that, he immediately focused on the part that this boy died, but I was like: "Gill, you helped cure someone!-If it wasn't for bacteria he would be alive!!! Without you, that might not have happened!" How amazing is that. I truly can't wait until my year is up and I can donate blood/plasma/whatever I can. Anyways, more on Gill (he has quite a story!) His son got a transplant when he was 16 years old, but it only lasted 4 years because of "electrical problems"-what the doctors said was an anomaly. But, Gill said those 4 years were great and his son did so well! Then, his other son suddenly died in a car accident. They were not able to contact the sons family quick enough to donate his organs, but they were able to donated his corneas to two people and skin/tissue to like 20 people! Amazing!
Anyways, it was finally time to share my story. I really need to write out my whole story and just get it out on paper, because I need to memorize it. I always feel like my brain is spaghetti and I am all over the place. But Katie and my Nana were there and said it was good, made sense, and was the right am mount of time.
After I did my speech, I met a surgical technician who helped harvest my heart (the guy with me in the picture above!) It was soo cool to meet someone who helped save my life and took care of something so precious to me before I could take care of it.
The best part of the day is how I am trying to inspire these people to keep on doing their job well, and they were so thankful that I was there to show them that their work had meaning. As I was finishing my speech, a guy was leaving to go harvest a heart, and just talked about how this really hit home.
After my speech, Gill told me the things that hit him. One of them was that he was an educator for the people who first brought out dopamine as a heart drug (it is related to L-dopa for Parkinson's). Wow, what a connection. He also helped save my life, dopamine is very complicated and risky and he laid the foundation for people to use the drug that kept me going when my body could not keep on. It was just an amazing day.
Then, my father took me to the Bay Area TRIO meeting. It was at El Camino Hospital in Mountain View-It looks like a Hilton hotel or something. It had someone playing a grand piano and then a marble staircase! The meeting was pretty good. I don't know if I will make my father go back, but I definitely like it as support. It kind of stunk that my first meeting was in the summer, so a lot of people were gone, but it looks like a good place to come for information, everyone was really nice, and they are the kind of people that genuinely care about how their fellow transplantees are doing. It felt good to be there and have people agree that some of the symptoms that I have had, they also had.
Anyways, it was also fun to just hang out with my dad after. I love getting to spend quality time with him.
What a good day!
Tomorrow another talk for CTDN at UC Berkeley, and Sunday I am working the CTDN both at the Run to the Lake. And Tuesday is the summer heart transplant picnic at Santa Clara, then Friday another UC Berkeley talk.