Hey, I am Allie have had my heart transplant for 1 year!!! I have been keeping a blog about my experienced offling for awhile, but reading other Tx patients blogs has really helped me. So I am putting mine out there to help others! Enjoy! By the way, I got the name "Girlfriends guide to heart transplants" from a book pregnancy book Rachael (from the TV show "Friends"), read called, "Girlfriends Guide to Pregnancy".
Monday, May 31, 2010
Attitude Change
I don't know if it is the Prozac or the medication, but for some reason I have noticed a huge attitude adjustment. If it is the Prozac, I think they should just put that in the water. Why should we have deal with unhappy people when you can get cheap medicine. I am being partially sarcastic, but really, I don't understand why people are against it.
Jackie is moving, and it seems like somehow I am the only clearly thinking person in my family about all of this. I am going with her and I am super calm and cool. I just want a new experience with Jackie.
It seems like I am very much into makin memories with the people I love. Katie, Lynne T, and I took a Retro Dessert Cooking Class at Sur La Table in San Fransisco. It was so much fun. I did not realize that I could cook. We made whoopie pies, creme filled cup cakes, bakes donuts and fried donuts, and a Strawberry Chiffon Pie. After class I came home, went grocery shopping and made a Raspberry Chiffon Pie. I read a lot about Flax seeds and how it was really good for your heart, so I have been adding that to a lot of things. I added the flax seeds to the Chiffon Pie and everyone said it was really good, I think because of the small seeds in Raspberries you could not even tell that there was Flax in it. (Side note:since taking the flax I have felt better, even though i think i am getting another cold. I have been trying to eat better and exercise everyday and just be well balanced). Then today we made almost everything again at auntie sues house, for Jackie and Joel's nursing school graduation party.
Anyways to the meat of my blog post.
When I was in the hospital, back in October, sometimes I felt like I was just going to drift away (die). That was one of the things that kind of scared me. So, since I have gotten out of the hospital, I have tried to do a lot, make a lot of memories with different people I love. I try not to sit around, and I try to get out of my comfort zone. I love this postsecret. It is totally me. It keeps me in the mindset that its good to make mistakes, I am LIVING!
So, a lot of places I go I am constantly taking pictures. People think this is kind of weird/over the top sometimes (like in a cooking class), an I just want to yell out: "I just had a heart transplant!"
I also have noticed that sometimes I just want to be alone. I have not really just been alone, or on my own since before I went into the hospital in October. This weekend I got the chance to drive Jen's mini (which reminds me of mine, which has to go into the shop, i am not really sure why, my dad just said so). Having this new lease on life just makes me love some of the small stuff sometimes. I love the mundane things like running errands. I did not realize how much I like listening to music. Everyone always has it off in their cars and I am always the one turning it on. And last night i was listening to Pandora on my blackberry while cooking, that was so much fun. I just love driving around in the mini doing stuff. It has been kind of hard because my family is still scared about me so they still want to always be with me. So that last couple of times I have had to run errands I have literally run out of the house without telling anyone so I could just be by myself. I have mixed feelings about this because I want to be with my family an all, my grandparents are getting older and stuff, but I feel like I do need some alone time.
So, living where we do, we do a lot of driving. It is always interesting the conversations or things that happen in the car. The other day Tim McGraws song "Live Like You Were Dying" came on when Jackie and I were driving. I was fine with listening to it, but Jackie shut it off immediately. I think people are still a little touchy with what they can say/do around me. They are still tip toeing around. Like the man Dave who got his liver Thanksgiving day, while I was at Stanford died. I am not really sure why or any detail's, but my mom did not want to tell me and even told Jackie not to tell me, which I though was pretty funny. She thinks that it will scare me because he had a transplant also, but i am like: "Mom, hes 50 years old, with a liver, I am 22 years old with a heart" I don't feel like there is really any comparison. I think that this might have just came at a bad week. This was the first time my mother and I have had a conversation about my health. I told he I am basically just scared of the unknown, and she just said that she doesn't think about the bad that could happen. I wanted to have a fuller conversation about all of this with my mother, before I left, but we were in a restaurant, so it was kind of hard, and I started to tear up, so I stopped talking.
When I was "high" on prednisone I email Flavio (departments transplants therapist) that I would like to talk with him. I am not sure I if I want to or not. On one hand I want to "fight this" on my own, on the other hand, I think my head might be more clear with therapy. I feel that for a lot of things. I am right on the edge to get the bariatric surgery, but I feel that if I get it, its like I am cheating, and I need to work hard and do it on my own. I also sometimes feel that way about the Prozac, like i just need to deal with this on my own. But then I think that its a David and Goliath battle and I am David because prednisone gives you SEVERE anxiety, so its like fighting an uphill battle.
Anyways another interesting conversation I have had is with my grandmother. She has always said that she would never get surgery again because she is too old. She now needs surgery on her arm. I think I might have been a force for her to get it. I kept telling her that the transplant was nothing and she could make it through it. She is having the surgery in August because she is in so much pain. I hope I am back so I can help her recover like she has helped me.
One more thing I wanted to talk about was about feeling my heart. I have been swimming lately to just make my whole body feel better. I love holding my breath under water and just feeling my heart beat. It feels amazing, so good and strong. After I did a ton of laps I just would hold my breath under water so I could feel my heart.
Thursday, May 20, 2010
सिक्स months
Sorry everyone who has commented and I have not commented back, I have not been feeling well and have not been on the internet very much.
Anyways, since this blog is about me and my journey with my heart transplant, I get to talk somemore about me now.
I had my second episode of rejection. It was not as bad as the 1st time 3R/3A, it was 2R/3A. The doctor was concerned with how IV solumedrol would make me feel, so he decided to just let me do oral meds to see if this cleared up. I love my transplant team, they really care about my quality of life, I can not express my appreciation.
All of this kind of scares me. There was no damage to the heart from the rejection (detected yet), but it's kind of scary to have 2 episodes of rejection in 6 months.
I do not know if I am being mellow-dramatic being scared of the rejection, or is it generally something to be scared of. They say the more rejection you have, the worse it is for your heart. Everyone has rejection at some part in their journey, but twice in 6 months? It just makes me realize how I just need to turn to god, I really need to be accepting of this life and live for what I have.
Also, being on all of these steroids makes me really emotional. It is good and bad. It makes me realize what is truly important to me, and the little things that get me. I learned that I can not stand to hear people eat. Yesterday, Jackie was eating peanuts and I could hear the crunch in her teeth and it made me so mad. I remember back when were were staying at the appartment and my dad was eating postacios, it probably made my blood pressure got to 300/178!
Tomorrow I am speaking for California Transplant Donor Network at Eden, the hospital I was born at. I have not really planned my speech, but I have my outfit and I bought a camecorder (the most important things!). I am (hopefully) going to put the speech on here afterwards and maybe do updates like that.
These days just make me have to keep in the mind set that I am not living for the here and today, I am living for God and, his glory, and ultimately to get to his kingdom.
Tuesday, May 4, 2010
Survivor
Looking at this necklace makes me feel so good, so stong, and reminds me how much I have accomplished in the last 5.5 months. My mom gave me this necklace the night I got discharged from the hospital (Dec 1). We had to go to Target that night and pick up the necessities since neither of us had prepared a suitcase for when we got the call. The pendant is a heart with wings that says "survivor". The heart is the heart that was generously given to me, I pray that the wings reflect that my donor is in heaven, and the survivor reminds me that I have fought and, so far, won the battle, and will continue to fight!
Labels:
donor,
heart transplant,
jewelry,
necklace,
survivor
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