Last Entry of 2010

12/31/2010-Last Entry of 2010!
I have to sneak in one last entry of 2010! This has been one amazing year! A lot of hard work, many, many struggles, a lot of learning, changes, going out of my comfort zone, getting many opportunities and experiences that most people don't normally get, and a full year with someone else's heart!
Heart/Health wise this year started off really tough and it did not turn around utill the last few months. I had bad rejection many times and was on prednisone tapers that were anywhere from 1000 mg of Prednisone/Solumedrole to 100mg of Predrisone to being off for 3 weeks (and I finally got my face back! but now I am back on the prednisone so it is gone again). But I was so lucky that I did not have the antibody rejection and have to stay in the hospital, the worst I had was having to go in 3 days in a row for IV medication.
I am also so fortunate that this heart feel so strong! It honestly feels....undescribable...I don't know if everyone is walking around with hearts feeling like this, but you if you are, you are some lucky ducks. Even on my worst days, when the medication makes my heart feel so weird and the beats are off, or the rejection was bad, I still feel way better than when I was 5 years old-before there could have been that much damage to my heart. I said this to someone before, it just feel so good, so natural with this new heart. To not have to have something mechanically keeping your heart going (like a pacemaker, LVAD, ICD, etc.) the mechanical stuff is great for an emergency, but it is not the same as a real heart. It is not great for people who are still highly active and/or will need the mechanical support for long-term use.
I am finally used to the right heart caths! You can poke me in the jugular as much as you want! I am getting used to the nausea, sort of. I changed one (of my 3) antirejection meds to from myfortic to rapamune (because my biopsy showed mild rejection/inflammation. I am not liking the rappamune, it has done a number on me and I am hoping I can go off of it at this next appointment. So far my headaches have gradually returned, I am short of breath, by blood pressure is high (normally it is perfect and I don't even have to take anything to lower it! I am so lucky!) and I am still nauseous, and I don't know if the acid reflux is worse all the sudden or it has been bad for a while and I have just not been paying attention (the antirejection meds really rip up your stomach so you are put on 2 antacids). But yet all this was not enough for me to call the doctors office early and get a sooner appointment or get try to get off the meds.
It is just starting to hit me-13 1/2 months later, that this is not really my heart. I got this heart because poor person died. I know I could not have prevented their death, and my illness had no correlation to their death, but it has just started hitting me that this could have been one of my family members (or myself) who got in a fatal accident and died (it happens everyday). I think I came to this conclusion with all of the excitement over the float in the Rose Bowel Parade and seeing all of the donors florographs-it put a "face" on the donors (like how being a volunteer with CTDN and talking about my transplant I am trying to put a "face" on transplants, it was just one of those moments), so many of the donors are so young, like my age, you just don't expect people to die young. But it also makes me remember that I have to live for my donor and their family, and the life I was given will not be in vain.
I have gotten so many experiences that I (probably) would not have been able to do/been given if I was in school/working/did not get the heart transplant. I got to travel and live with my sister and cousin-away from my parents. That was sooooooo cool! I grew a lot closer to my sister, we had a lot of fun, and learned about how to rent a house and set it all up-without any help from our parents!
I have gotten many speaking opportunities, many volunteer opportunities with CTDN, and a internship with a nurse educator. At all of the place I learn so much-and hopefully I am again putting a face on transplant. These opportunities I would not have been given without the transplant or if I was in school and they have been so cool.
One thing I have tried to do this year and will try to do in 2011 is be a support person for the younger people that need a transplant. I did not know anyone young that had a transplant, it wasn't until 6 months out that I met some friendly transplant people at TRIO, but it wasn't until I went and talked to another young person in the hospital that I met someone closer to my age that had/needed a transplant. The reason this makes a difference is so many of the people that are transplanted at my hospital were near retirement when they got their transplant, so they just retired. I am just starting my life and I still need to go back to school, so there are a whole different set of issues with me and it is nice to talk with other people my age to see if they are struggling with the same things. But for me I definitely had to step out of my comfort zone to even go to groups like TRIO, much less talk to people my age about transplants, but I think that this was is such a pertinent part of the transplant process for someone waiting, that one of my goals (and if you are the prayerful type-you can pray for this) is to keep stepping out of my comfort zone and talking with transplant people.

T'was the Night of Christmas

12/25/10 T'was the Night of Christmas
Today and last night was PERFECT! I got to spend another year with my family (except my father, who has the flu so he is in quarantine :) and except for my father having the flu, I got all of the presents I want-to just be with my family. I honestly don't mean this to sound cheezy, and I know most people will not understand this because they have not had to really think about the thought about their death, but right after I had the heart transplant last year was the holidays and then my birthday and I did not really want any presents. I just thought that this was because I was too tired to think about that sort of thing, but I feel the same way about it this year. I would much rather have all my health-like have no rejection, have the back pain go away, get my memory back, etc. and be able to be here and with my family (and conscious) than any present that could have been bought.
So here is the run down of Christmas Eve and Day:
I was late for dinner to the Christmas eve party because I was running around and wore out too quick, I fell asleep before I left for the party and was awakened to my cell phone of my grandmother calling me to tell me dinner was being started. By the time I got there all the food was gone! But I had mashed potatoes, which were yummy!
This year instead of presents for Christmas eve my family did white elephant gifts, which was a lot less stressful than getting a gift (or gifts) for someone. And it was so funny watching people opening them. And they were really fun to buy.
Nothing too exciting about Christmas morning. My whole family went to my grandmothers house and had breakfast and then just the cousins did a secret Santa exchange. Then we sat around and talked for a few hours. I have had alot of fun getting to know my cousins girlfriend Anni lately, she is really sweet, and I got to talk to her a lot to day-too bad she is going away to nursing school in Napa for 2 years. Then the cousins and aunts and uncles had to go and just my family stayed and had hours de jour and a family friend came over and my grandmother made veggie soup (from scratch). My mom, sisters, and I opened gifts.
Last year I was too tired to really think about my donors family. But this year, now that I have been in contact with Olga, my donor sister, I just can not imagine being in her situation. From how it has sounded from her letters, she does not have a family and raised Ruben (donor, her brother). So she is alone for the holidays. What even complicates the situation more is that she speaks Spanish and I speak English. I hope she realizes the greatness that she has done with her act and the impact that she has had on my life and that it is because of her that I am getting to spend this Christmas with my family. I am still thinking about the if/how/where/when/etc. of meeting Olga, who wants to meet me-which I know sounds really selfish-I know I should be the person pushing her to meet me (and not the other way around) but I just did not think that it would happen so quick and I do not want her to think that I am a replacement for Ruben. I still do not think that she has gotten over his death.
The last two years my cousins has made me a special ornament for our Christmas tree. I feel like this is a special way of honoring Ruben in our close knit family.
So my family likes to get me funny heart shirts and here is my the ones I got for Christmas:
This one is actually a campaign for Pearl Izumi (a cycling company), my Dad got it for me


After I got the shirt and he told the guy at the check out why he was buying it for me (that I had had a heart transplant) the guy gave me this sticker, I am not sure it really fits my situation.


Jackie got me the following.
Jen (my cousin) drew the tin man in this one, and Jackie designed this, I think I am trying going to try to sell these shirts to raise money for my Team in Training ride.