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.

What I would like to say to all donor families

Hi, I am Allie, I got a heart transplant on November 19/20, 2009 @ Stanford. I just (last Tuesday) gave my letter to my social worker to give to the OPO. It took me so long because of many reasons. At first I wanted to write away, like 3 days after I got out of surgery, but I felt like I HAD to wait a little while because it would be curel to say how good I am while others are suffering. Then the drugs made me very ill and I couldn't see well for awhile, so I could not write it. Then prednisone makes you very hyper and it made me write it. I am glad I did, I really hope I hear back from them. If I don't, can you be my surrogate donor family? Even if I don't hear back I will send updates, such as when I graduate, when I run a marathon, etc. I figure it is better to send the letter and let them make the decision to read it or not, it is their choice if it is too painful. Anyways, the following is my letter to my donor family, I want to use it to thank you and all donor families who have given myself and my other recipient friends LIFE!

Dear Donor Family,My name is Allie and I am the recipient of your family members heart.  I am 22 years old and I am currently a nursing student in the Bay Area in California.  I had suffered from Restrictive Cardiomyopathy since birth, but it is unknown how I developed the disease.  I was sick for quite some time before I was diagnosed when I was 15 years old and had to have a pacemaker implanted.  After I got the pacemaker I felt a little better, but I never returned to the full activity level that I had before I really got sick.  Over the past six years my health declined and I was able to do less and less physically.  In this past year it had gotten to the point where I had trouble doing normal activities such as hanging out with friends, walking to class and even sleeping.  My last months before my surgery were spent in the hospital an hour away from my friends and family.  I was fully relying on medications and my pacemaker to keep me alive.    
    On the day I got the call from the hospital, I almost wanted to say no, I realized the implications that someone had died and I mourned the loss of someone else’s life, but I knew that I was being given the gift to live again. The hours before the surgery are a blur of shock and disbelief that something so life changing was going to happen.  I woke up the next morning a couple of hours after having my transplant surgery I felt so different and so much better. This new heart was bounding and pulsing and I could feel it; I felt as if I could run a marathon.        
I have put off writing this letter for the past few months because I have been healing, learning to be a healthy person again, and coming to terms with the fact that I was given such an amazing gift from your family member. Everyday I think of how much pain you must be feeling for the loss of your loved one and I am also extremely grateful for the gift of your magnanimity.  I feel so blessed everyday to have such a strong heart beating in me.  I am so grateful for the unselfish gift that you gave me.       
I am home now with my family and slowly returning to a more normal life and continue to feel better everyday.  I have been able to do so many things that I have never had the ability to do. I plan on completing my nursing degree and working with heart transplant patients and their families. 
       Thank you so much for making such a difficult decision, by doing so you have really changed my and my family’s life and I am eternally grateful. Your family will always be in our prayers.With Love,Allie