A Perfect Day With a Heat Transplant/A Perfect Day Without A Heart Transplant

I got this idea from the excellent blogger extraordinaire Josh at his blog "Welcome to Joshland" (http://www.welcometojoshland.com/2010/08/my-perfect-day-stolen-post-idea-from.html) you have to check him out, his is an all around cool guy and has funny blogs, medical videos, etc. and is an inspiration for people with life threatening illnesses. He has struggled with Cystic Fibrosis and Cerebral Palsy all his life. I am jealous of the CF community because they have such a great community, the heart/transplant community is just starting to build up, but is not nearly what the CF community is. One of the things I would like to work on is to make my community as great as their, to provide support to my fellow patients. Josh also inspired me because my best friend's brother also has Cerebral Palsy and has had major struggles his whole life, so he has taught me a lot more about it. Anyways on to my post:
A Perfect Day With A Heart Transplant:
My perfect day is actually a day spent at the doctors office. I know that sounds so weird, who wants to be at the doctors, right? But, it is a whole day that me and my mom spend alone, together, we talk together for about an hour there, have lunch together-talk, talk in between appointment, and then talk in the car ride home. We treat each other that day, the hospital is in a fun place, Santana Row, so we go shopping and go out to a great lunch and just get to spend quality time together and indulge. It makes actually being at the doctor, and the pain (like if I have to have a heart cath) so much easier. At the end of the day I don't want to leave my mom.

I honestly don't know where my life would be if I did not have my heart problem. I think I might have gone to art college for Jewelry or fashion, I either wanted to design purses or wedding dresses. I know the whole fashion thing sounds weird since I am not all that fashionable of a person, but I love to dress other people, not myself, and I love purses. And I know that it sounds weird to want to design wedding dresses if you are not crazy about weddings, but it was actually for specific people.
But since I have my illness, I have really gotten interest in medicine. I think that if I had the stamina to get through medical school (to get through the long hours and then residency) I would do that. I would love to go now, but I know if that is really a possibility. I am somewhat glad I have my illness because it sort of awoke me in life. I went from a really fake life, not really doing anything to help society, (I hope I don't offend anyone by saying this) but what does a hair dresser really do to help people, it is a really fake job, you constantly have to tell people they look amazing-even when they don't. I feel like when I become a nurse I will be able to help my fellow transplant patients, like really help them. I have a lot of patience and compassion for people, which some people in the medical field do not have and that makes being in the hospital a lot harder.
Okay, so know that I have actually written this post I realize this is not at all how I meant for it to turn out. Part of it was about a great day with a transplant, and part of it is how my life would have turned out without an illness. What can I say, my mind still goes in a million ways, hahah.

A turly inspiring person

So normally I would not write about fellow heart transplant patients 2 posts in a row, but these two ladies just struck me. This lady I am going to introduce you to is so inspiring. She won this years essay contest for the Ride of a Lifetime contest, after you read her story I will explain why she touched me so much!






Jennifer Shih
Atlanta, GA
Heart Transplant Recipient

The phrase “the best laid plans of mice and men often go awry” from Robert Burns is very fitting for transplant patients. I was a Pediatric Cardiologist fellow 5 years ago when my plans went awry. I had just finished 20 years of schooling, and 3 years of pediatric residency to fulfill my dream of becoming a pediatric cardiologist at Cincinnati Children’s Hospital, a very long-term plan. While on call one night, I felt a little tired and a was a little short of breath after climbing a flight of stairs to my office, so I decided to perform an echocardiogram, an ultrasound examination of the heart, on myself. I found unexpected fluid around my heart, which was strange since I had never been sick in my life. In fact, I was the perfect doctor because I rarely seemed to catch illnesses from my patients.

Because of the fluid in my heart, I decided to take myself to the ER. It was a good thing that I did because I went into cardiac arrest 6 hours after I performed the echocardiogram on myself. At that point, I underwent emergent treatment and a med-flight to the Cleveland Clinic. Upon arriving there, I arrested a few more times and my heart could not be shocked into working order again. To save my life, I was brought to the operating room to have a BiVAD placed to keep me alive until a lifesaving heart could be found to transplant. Since I essentially did not have a heart anymore, I lived in the ICU until I heard the news a heart had been found for me. It had been about a week since the time I was completely normal to finding out I would die without a heart transplant.

After my lifesaving transplant, I recovered for 3 months in the hospital and 2 years on disability. I wasn’t able to practice pediatric cardiology anymore due to the activity and risk of infection exposure. In that time I started the Have a Heart Benefit Fund with my friends. We raise between $10,000 and $20,000 each year to help fund transplant patient care, education, and research. I have always loved helping people and this has been a great way to show my gratitude to donor families as well.

I now have my heart transplant care followed at Emory in Atlanta, have gotten married, and work as a pediatrician in the neonatology department at Emory, while running the benefit. My transplant has made me a more empathetic doctor, since I can truly understand what it feels like to be a patient. It has also made me live life to the fullest even more than before and not take any of my relationships with family and friends for granted. I am forever grateful to those who give the Gift of Life.

Jennifer inspires me so much for so many reasons. She literally went as far as she could go as a pediatric resident and now is a neonatologist. When I started getting ill a lot and had to be around a lot of bad doctors, I decided that one day I would like to be a doctor and my long-term goal is to be a doctor, but I never though that would be a possibility since being a doctor is physically demanding. Reading Jennifers story just kind of made me realize it could still be a possibility. I have had my hopes set of pediatric cardiology, but in the last few months I had been thinking neonatology because the babies are so small I can physically handle them and they are less likely to be infectious.
She inspired me that she took the time off of work that she needed, she went back to work as a Dr. (she did not just get married and "quit" as a lot of young women do, while she was recuperating she volunteered, and she is giving back).
Her story just gives me a better picture of the future of my tx!

Hannah Jones-What would you do if you had been sick all of you life

So, a lot of the time I write when I am somewhere that I do not have Internet connection (I know-today where in the world could that be?) with the intention of uploading it the next day. I have (sort of) followed this little girls story and saw a special update on her, so I wanted to write a little bit about her and how I feel about her situations-which I wrote a week ago.

09/14/10 Hannah Jones
(If you are in the transplant world) unless you are living under a rock you have heard about the 13 year old girl from the UK who refused the heart transplant, but later when she became ill decided to take it. It outraged many people that this girl "refused" the transplant and then days before dying changed he minded and decided to be listed-potentially taking the heart from another person who had always wanted to live.
Tonight there was a special on Hannah and her family, 1 year after hear transplant. Hannah had AML (Accute Myloid Leukemia right after she was born, the Chemo ruined her heart and she developed Cardiomyopathy). What Hannah really said when she was first offered to be listed that she did not want to be listed then-how she said it on TV did not make it sound like she was ruling ever getting the transplant.
So, why would anyone care about this? I think Hannah was really smart to wait until she was ready to have the transplant. When I was 15 years old, at Lucille Packard, the transplant doctors tried to push me to get the transplant and I am so glad I did not get it. A transplant is truly a life changing event that you must commit your life to, and if you are a teenager you must have the maturity and the will that you want to survive. Waiting for the transplant to see how sick you could get without it makes you realize how much you needed it, how you really must take you medications, and how it was the right time. You hear so many stories of people who get Tx's who lose them because they do not follow their doctors orders (mostly do not take their medications). It is really sad because usually these people are depressed because they have just been through so much, the surgery in itself is a huge life changing event, then the medication makes you sick, and then the change in work, family dynamics, etc. But if the doctors had knowingly had given Hannah the heart earlier, she might not have taken the medication, this could have resulted in a wasted heart, that could have gone to another sick child, that would have been really sad.
I somewhat feel that I can relate to Hannah. Although I did not have cancer as a child, I have been sick since I was an infant and my parents has drug me to all sorts of doctors to figure out what is wrong with me. When I was about 17 years old I just got to the point that I did not care anymore if I got the Tx or not, I did not want to ever see a rude doctor, needle, or hospital ever again. In a way I was a lucky sick child because I was never treated like a sick child because we did not know I was seriously ill until I was almost 16 years old. I am happy for my heart transplant buddy Hannah, we are both about a year out and doing well!

Feeling So Much Better!

I am feeling so much better, back to being a human again! I am finally getting my medications "drawin in" to the right dosage and I am feeling better than I have in years. Helping my grandparenmother out (since she can only use one arm for 2 more months) has really tired me out, so I decided I did not need to use the sleep medication anymore. It has cut my migraines in half! Which just generally helps everything else.
I finally convinced the gastro to move my appointment to today, so I have been holding the food waiting to get the upper endoscopy and biopsy. I am hoping they don't find anything, but I am hoping they find the cause of the nausea and give me a magical pill to cure it that makes everyting better.
I have been doing so much, and I am so excited that I am able to do so much more! I am 99% sure I am getting a road bike for my re-birth day in Nov so I am so excited to get to use that and just generally get to get out and do stuff!
This week I have the TRIO meeting tomorrow, and Tuesday I get to see the Tx group at Kaiser, which I havent see all summer.

09/03/10

09/03/2010
So I have had one crazy busy week full of doctors appointments, cycling, and running errands. I had five doctors appointments this week, I have already been on four rides, and we ran errands everyday, I did not have one "down" or not busy day. This was the first day that I took a nap in the afternoon, and now it is 11:20 and I can't sleep. I think if I keep up with this I can stop taking the sleeping pills!
The rides just got better and better each week, I got better and better, faster and faster each week. I finally fell like something is getting better-I was feeling like I could not get stonger- but after I could climb the hills and do the same rides way faster-I figured something must be going right.
The doctors appointments went pretty well. They started on Tuesday with a pain managenet appointment. It was an "intake appointment" to get introduced to the team and their system. I got switched to a new medication called Opana-which is a mixture of Oxycodon and Morphine. It is to get me on a more scheduled way of taking pain medication, I was just taking Percocet/Oxycodon when I felt like it, which was not working because I did not want to take it-or really know when it was appropriate to take it, so this gives me more of a schedule to take it.
The next appointment was with a social worker as a therapist. One of the things that I think more thansplant centers need to have is a Psychologist on staff that is for before and after transplant care, the Psychologist at my hospital is mostly for transplant evaluation. She was extremely nice, she was close(er) to my age and we connected really well. At first I was aprehensive about going to her because she is working on her hours to get her LCSW, but she is great, and gave me great refferals. I feel this is a good time to go to therapy, before transplant mostly the doctors made me feel like I did not have an adequate problem and that I was a whiner if i went to therapy. Now that I have meet others, I know that this is a major life changing event and that it is okay to go to therapy, and probably a good thing to do. Spending so long in the hospital, and then away from home and friends and family, now not being in school and work for so long, having major surgery, and now being on all of these medications, and having all of this responsibilities has just put a lot on me and I think that it is a good idea to talk this through with someone. The only thing about this is that almost no one knows that I am going, my parents, my sister, my bff Kara, and anyone reading my blog-which I have know told anyone about. I go to a hospital 45 minutes away, where I know I will not see anyone I know, but I am glad that I did because I do not have to worry about seeing anyone that I know and I found a great social worker.
That afternoon I went to a class on sleep hygiene. It was ok. Every doctor I go to tells me I need to go to this class, and keeps putting in a refferal for me to go, so I just finally went. It was ok, the only thing I learned was that I needed was that/thought about was that I just need to stay out of the house, tire myself out, not nap, and stick to asleep schedule-pretty generic.
The next day was to a psychiatrist to manage my medications. He was very nice. I was first given prozac and a beta blocker to help with my migranes. I did not have depression or hypertension, but the mixture of the two are supposed to help with migraines. The combination did not work and I was taken off the beta blocker because my blood pressure was too low and was given Topiramax for migraines and I am currently on an increasing schedule, but they have forgotten to take me off prozac. At a lot of doctors appointments I go to they have you fill out this form that has you select on a scale the range of tiredness, lack of energy, trouble sleeping, loss of intress in things you used to like, being sad, etc.- it is the depression test. So we talked a lot about my symptoms, most of them are just tirdness,lack of energy, trouble sleeping which every doctor has said that I am depressed, but I don't think I am depressed becuase I am not sad and I have not lost interet in what I used to like. I think the other symptoms I do have are side effects of medications, the other side effect I have is anxiety, which I know is cause by the prednison. I know it is caused by the prednisone because when I go on high doses it gets worse, but when it gets lower it doesn't get as bad. So he tried to just tell me to "work through my anxiety" and I just bluntly said I wanted a pill, and he gave me on, and I think it is working. So that is nice.
And sometime inbetween there I finally got an appointment with a clinical pharmacist. The clinical pharmacist was able to help my mothers friend a lot, but the one I talked to was totally freaked out by my medication list and was not even willing to see me, so that was sort of a downer for the week. But the rest of the appointments were great. One of the reasons I wanted to see the clinical pharmasist was to see if she had a better idea for a schedule of how to take my medicine because my nausea is getting worse and worse, I have an upper GI scheduled for the end of the month, but at this point I cant wait that long, so I think if the Dr. doesn't tell me by the end of Tuesday that he can do the Upper GI that week I am going to urgent care or the ER to get it done. The Transplant team is just like: "Oh, you are just going to have to live with this nausea for a year to 18 months" I had bad nausea before transplant, but not as bad as this. I am just waiting for my medication to come up.
So back to good things. I am hoping if it is cool tomorrow, to ride at least 20 miles. I really want to do the 64 mile Solvang ride in November and need to rack up some more miles. I have rode over 20 miles, but not in about 3 weeks. I would love to do that, it would be exactly 51 weeks after tx and in honor to Ruben.
I know I have said this many times before, but each day, and each stumble that I come across, I realize that I could do so well working in the transplant field. I am getting so much experience as the patient, things that a person that did not go through this would not know.
Jackie told us that she gets off December 22-26, I am so excited she will be home for Christmas, but not my new birthday, I am hoping maybe she will have those four days off and she could fly home? I would love if my whole family could spend the 19 and 20th with me.

Just A Little But of Everything

So this has been one busy week, and today was only Tuesday! Sunday, I went on a Bike ride with Eric (my BFF and (boy) cousin-who is closest in age to me. I should have found a cute picture of us when we were little to put up, but I just thought of that and it is 11:00 pm and I have an 8:30 am apt that's 30 min away tomorrow. :/. Anyways, I went with he and his girlfriend Rachael, who is so sweet. She is a great girl that fits in with the family so well. Both of their fathers are really into riding-her father is a professional rider and my uncle is a coach for team in training and has done rides like the Death Ride a stuff. They both have really long legs and are very fast, and I have very short legs and I am very slow, but she was so sweet and just went with the flow and chatted and rode! That day I did not get up the last hill, but the next day I went on the same ride with my aunt (who is a triathlete and I think has done an ironman-but I am not sure.) and I made it up the hill that day! I was so excited! Since I have been riding so much (I really have-like 4 days or more a week for over an hour each day, about 10 miles or more-my heart feels great each time-the rest of my body is exhausted-lol) I bought a Camelbak-I was anti them because I hate the mouthpiece (its like sucking on a boob) but one of my medications causes dry mouth and I was having to stop for water a lot or I just got too dehydrated and got too dizzy feeling, and I am not that talented to reach down and get my water bottle, so now I have this. It has worked out well so far, and kept my water cool. Another reason for getting it was when I get off my bike I get dizzy and fall over, I don't fall over while I am riding, but when I am just standing, so now I don't have to stop-perfect. And 1 water bottle was not enough for me, this holds 3 liters. Anyways, 1 last thing about my new toy-it was the perfect weekend to buy it because it was $30 off to begin with, then I got $20 off because my dad was a member, so it was half price! I love getting to the register and finding out something I thought was going to be $100, is on sale and is now $50! Woot Woot!
Then Monday I did my little (literally she is less than 5 feet tall) sister's hair (I am a hairdresser). I highlighted her extra long hair and cut it. It took forever, but I was happy to do it, because I was not sure if I would be able to get through it, but I sat in a chair and made it! And I was happy to be able to do it for her, today was her first day of her junior year! Then I took her to get a new back to school outfit, and there was another sale-Woot! Woot!
Today, I finally had an appointment with the chronic pain clinic. It was ok, they prescribed me a new (stronger) medication called Opana. I was/ an kind of nervous to take it, but they really pushed it on me and I felt like I could not say no. When I asked about getting off of it, they said it could be no problem at all. Well I had this awful experience a few weeks ago where I switched from taking a lot of Percocet to Morphine (which made me hallucinate) and then to a low dose of percocet. No one warned me to slowly switch off, so I just stopped the morphine and switched to percocet. Oh mylanta, it was terrible, I should have gone to the hospital. I just though I was seriously depressed because I felt awful all of the sudden and I could not stop crying-I cried over everything-EVERYTHING. Looking back on it, it is funny how I reacted to everything, I had sever anxiety and would cry at the drop of a hat. So, anyways, I took the pill tonight it was supposed to make me drowsy, and I am wired.
So through these last few days, it is just another realization how fortunate I am to have this support system that I do. My Aunt, Uncle, Cousin, have been my encouragement to get out of bed and bike ride and are always telling me I am doing a great job. My BFF Kara is such a great friend. I can't believe she has stuck by my side, I am so luck to have a friend like her (and she isn't even related to me). She visited me at the hospital, at both Santa Clara and Stanford, our "weekend house" that we stayed at after the transplant, and she is now my connection to the social wold. Sometimes I am just not good at calling her back and such, but she is always understanding that I am not feeling well or am tired and is never mad. My Mom, she goes to all of my appointment so I don't have to be alone. I hate going alone places. And she is just always supportive and running errands for me. My Ante and Uncle(s) they all encourage me and are there for me and support me every way they can and do anything anything they can. My grandparents, they keep me busy and have given me one on one time with them after tx, and a quiet place to stay (my grandma just got a new shoulder so I am driving her and my grandfather around). My father, he is willing to do anything I want, or get absolutely anything I need. He took me to my first TRIO meeting and is going back with me. He always wants to be with me and calls me everyday.
To end on an excellent note-I know this is an extremely lengthy post, but I haven't posted in a long time, so it balances out. I GOT A LETTER BACK FROM MY DONOR FAMILY. I will try to write out everything tomorrow, including my letter, the family's letter (its short and generic) the donors picture and what the family wrote in this years Honor and Remembrance ceremony book.

Crickadoddle

about is a picture of my baby cricket, whom I missed when I was away from her (while I was in the hospital from October-January). I took the pic to send with my bio for a ctdn thing and for the trio youth group. She is a Siberian Crickadoddle (or a Pappillon)
So, I have had extreme nausea for quite awhile now, and I had a biopsy Tuesday and got the results today. Last week I lost 10 lbs in 1 week for not eating ( I have Kix for breakfast, no lunch, and no dinner, and maybe a snack with night meds like 5-10 small pretzels). I thought I was definitely rejecting, and I was almost hoping I was-so I could take massive doses of Prednisone and end the nausea, but no, I got the results today and it was just a 1r/1a, so my medications don't get changed. (The scale ranges from 0 (no evidence of rejection to 3 which is bad rejection). So tomorrow I am going to a gastroenterologist to see if they will scope my stomach to see if I have an ulcer or infection, but this is just a consultation, so I don't know when or if I will actually get this test.
I just can't wait to be fully recovered from the tx. This is one of the frustrating things of the tx, no one knows what is wrong and I just want to be normal, feeling well, and in school and working! I don't think I have ever wanted to go to work or school (or ever will) was much as I do now! But my mind is still on another planet and I can't remember anything.
But I am still thankful for this whole process, it has taught me so much and has slowed down my life from what it was-I was totally all over the place (working on more than one Bachelors degree at two different schools, volunteering, and working over 25 hours a week). As I like to joke-it has given me the gift of time-time off from the craziness of my normal life.
I have been trying to think of/do things to maximize my time that I have off. One of the things I am doing is (trying) to learn Spanish, volunteering as much as I can with transplant related things (I would like to work in the transplant field), lately I have been thinking about collecting data for a project I know I will have in nursing school that I could base around transplants.
So, in December I was asked-kind of pushed into speak at a religious women's event and I just don't know what I am going to talk about or how I am going to do this speech at all. Almost everything I have done for CTDN I have almost winged it, and I joke with my mom and grandmother that I am going to wing it, but I honestly don't really know how I am going to deliver the speech. Usually I am somewhat funny, and I really have to be serious-which I am not. And then my mom says I can't make it sad-which would be the next thing to do, so I guess I will deliver a boring speech? Hahah, like I said, I think it will go best if I "wing it"

I never thought it would be this hard

Life rolled around and I got really busy and neglected my blog (while diligently reading-and thoroughly enjoying others). Lately, I have been writing in my own personal journal about my journey because I have just been having a few bumps in the road and I don't want to make this blog a downer blog, I mean to make it insightful, about the life of a young girl with a heart transplant.
I had a mostly enjoyable summer, except I am still having the pain, severe nausea, and I think the combine of these are causing exhaustion. My family members have a vacation home at the beautiful clear lake (keep clear lake green!), I ween there for over a week, I thought that being there would make me feel better, and it did a little, but it was not the magic cure my family though I was going to get from the green algae.
I think on of the hardest things about being a tx patient is that you are expected to always put on this happy face and act like you life is amazing now that you have this new gift of life. I outside world does not realize all of the complications that come with this gift and for me, adjusting to them is still hard.
Before Tx, they warn you that life will be different and you have to used to a life of a new normal, but I never in a million years would have though that a new normal would have been this (hard).
Part of the things is I have this date in my head (Nov 20th, 1 year after tx) and everything is supposed to be back to normal. I just can't get it out of my head that it is not going to be like that.
Anyways, I just started cycling (outside-I have only ridden the stationary bike-I haven't ridden on a real bike since I was like 13 years old). It is way better than the stationary bike. I love it. My goal is to do the Solvang ride November 13, 2010, which will be exactly 51 weeks post tx. Please pray for me to be able to keep on top of this and just for my over all general health. I am so lucky compared to so many of the other tx patients I know who are battling so my. Also, please pray for my family I know all of this stresses them out and my sister is in Texas-I really hope she can move back in December!

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.

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!

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.

I thought summer would be a happy time, but I think all my friends in the tranplant world are having a hard time

I am back at home in California. I did not want to end my vacation early, but after visiting the ED, I had to. I am even missing Hurricane Alex-I am so mad I am missing that experience. But it is so good to be home and see the family and friends I love so much and who love me and are so supportive. I am also really excited to be doing 3, possibly 4 events for CTDN, 3 speaking 1 health fair in my town, my first health fair!

Anyways, to the meat of my blog. I am not sure if I keep basically repeating the same things, but I feel like I just need to get some of this out (and practice my writing skills), so here goes:

It seems like so many people in the transplant world are having trouble emotionally. I thought summer would be better for me, whenever I get that vitamin D from the California sun-I always perk up. I am doing ok emotionally-taking 3 Prozacs a day, 3 Oxy's for the severe pain, and Klonopin to relax, but besides that I feel like I am the voice of rationale in the family, telling everyone everything will be ok.

It seems like a lot of the people in the blog world have not been doing so well and/or are having depression like issues. I have been trying to stay "up" by doing positive things I love-things that make me happy.

I am a compulsive list maker, so not only do I love making this list, but looking over my lists gets my creative juices going, so I can get "up" again.

I have started reading a lot again, sometimes I really get into reading, I love memoirs, and non-fiction, I love to learn and don't want to waste time day dreaming.

I came home early because I though I was having rejection issues or something like that, but everything seems ok so far. The night before I went to get my biopsy to see if I was in rejection for the 3rd straight time (never been out of rejection) I hung out with my father just having some together time. We headed over to Borders and I saw the book: "Always Looking Up" by Michael J. Fox. Was a little reluctant to get it, but I wanted to see what he had to say. I say a documentary on him about a year ago, and he truly has done a lot for Parkinson's research.
I was reluctant to buy the book because I though it would be all "fluffy" about how great life was, and he just had to deal with being sick. I have read about half the book and this is not the case. Although alot of the book has made me reflect on what has happened on my health related journey and what is to come (and from this-and the high doses of Prednisone made me cry quite a bit) this is a pretty good book.
MJF has made me believe that he has a "happy medium" in being depressed from his illness, but living life to its fullest and fitting in everything he can. I am truly enjoying the book.

I often feel like the world wants me to be this over joyous person, who survived a heart trans plant and is "a walking miracle". But, with the consistency of feeling at about 20% of what a normal person should feel like, being over joyous is just too much of an effort-and I just can't do it. A lot of "sick" people want to show the world how strong they are and how their illness has not stopped them from doing anything. But I think that we all need to find this happy medium. It is okay to get frustrated and depressed. I feel that this is needed, you need to cry-get some of those chemicals (that we take everyday-pills) out of your body. But you also must get an appropriate amount of time to be fully "high on life". You can't really explain it to someone who has never been close to death, but after you come through, when you are overjoyed, it is hard to turn that joy off.
I think before I had the transplant I thought that everything would be great and I would be so happy, again, I must say that I am just at the very beginning of the marathon, (and if we are talking about the San Francisco marathon, we aren't even to the smallest hill yet).

Anyways I love to sew-once I turn on that creative juice I can't stop it. My little sister kind of likes to sew, so I made her help me with a quilt that I am going to take back to Tx. I think it is sooo cute!

Astelles-Ride of a Lifetime

I entered the contest for the Astelles "Ride of a Lifetime" essay contest. I don't really know why, I haven't watched the parade since I was little, but all the other people with heart, liver, and kidney transplants were doing it, so I did it. It is so hard to cut your story into 500 words, but here is my story-or the 500 word jist of it.


Since I got my transplant in November of 2009, my life, and my whole families lives have changed-all for the better. I had been sick since I was little with heart problems, but things started to go downhill when I was 15 years old and I got a pacemaker. At the time I was having a lot of doctors appointments, I was constantly tired, and could not physically or mentally keep up with the other students. My parents and I felt my best options was to attend a special independent study program, the program allowed me to work school around my health and my schedule.
In 2009, my health really started to deteriorate again. I was getting to the point where I could barely walk to class (I was now attending Holy Names University) or do anything on my own. I was even getting too tired to drive. In October my Cardiologists listed me for a heart transplant as a status 1b and I stayed in the hospital, an hour away from my home for almost 3 weeks on IV medications. The IV medications made me feel better, but I still could not do very much. Finally the doctors decided I could go home and 3 days after being home I was called for a transplant.
Immediately when I woke up, only a few hours after surgery, I felt better-my heart function felt better than since I was a little kid. I felt like I could run a marathon, then and there. When I moved to the step-down unit, the nurses were joking that I could go down to the cafeteria and get my own food since I was walking so much, and so fast.
While I was still in the hospital a nurse told me about volunteering with the local OPO and signed up while I was still in the hospital. Since I have gotten out of the hospital I have volunteered for the CTDN, talking to nursing students, hospital staff, and such about organ donation and the impact it has had on my life. I have been accepted into a nursing program at Samuel Merritt University, and hope to one day be a transplant nurse. I know I will make an excellent transplant nurse because I have been in the position of the patient, not only do I know the odd medications well, but I know side effects, and all the other things that go along with having a transplant and taking all this medication. I also have a 3.8 gpa. Before transplant I was a hair stylist and carried around a my business card, now I carry around information for people to sign up to be an organ donor.
I was worried that I was making the wrong decision to get a transplant, I though my quality of life would be not as good, but it is so much better-I feel better than when I was 5 years old. When people see me, they can’t believe I had a transplant. I think I am showing people that you can thrive after having a transplant.


Good luck to everyone who entered!

Moving on up to the East Side-to that delux HOUSE!!!!-Rent is sooooo much cheaper here

So tomorrow is the big day! We are finally out of the extended stay hotel and the house we are leasing is ours! Jackie, Jen, and I are officially adults, we have have our own place-I think that makes you an adult. I really miss my parents and the rest of my family and the bay area its self, but I will be home at least once a month, so I will be okay. But it is so much fun to live without parents:there is no one telling you to get up, or go to bed, or brush your teeth, and we drink capri suns all day-we are like a bunch of hopped up six year olds.
All of this does make me think that this might be the only time I get to live (for an extended time) away from home. With my health how it is, and the exuberant medical expenses I have, I have to stay on Kaiser (which is only in a few states). I have always wanted to live in the bay area, but it just kind of worries me, with the market how it is now, will I be able to get a job where there is a Kaiser?
And it scares me, what if I don't get married-not that I am even looking, but everyone around me is getting engaged, and graduating college, and doing all the normal 22 year old things and I am not.
Always, when I take a step back, I can see gods plan. I now see why god brought Jackie here. It was actually to get me away from home. I don't think I could have taken everyone around me (my age) graduating and getting married. Being 2,000 miles away, makes it feel like it is not happening. I see it on facebook, or I get a text message, but I can just mentally put it out of my head.
When we move back home, I know Jackie and Jen and probably Katie will get married soon, so who will I have to live with?
On a lighter note, it has been 9 months since I lived at my house (I had an extended hospital stay, then I had to stay in a hotel an hour from my home (right near the hospital for a month) then I got to stay with my gradparents (who live 5 minutes from my house) becuase they have a 1 level house and I had trouble walking up and down the stairs at my house, and now I moved here. It is so wierd not being at home. I have grown closer to my parents since the transplant, but after the hotel stay, I have not lived with them, which feels weird, like I am missing a piece of them. Family will say something like: "Dad has been making ______ (last night Jackie said he makes homeny)". I was like: "No he hasn't, I have never had homeny in my whole life" and Jackie said: "It was when you were away, his mother used to make it". Anyways, the homeny was good, but I feel like I am missing out on moments with my parents, but it is hard becuase I am gaining all these moments with my grandparents (whom I have always been VERY close with, but neither have really opened up to me, or anyone in the family, until I stayed with them). I guess you really can't have it both ways.
I love this experience I am getting, I feel like I am away at college, but I am with my sister and cousin (having a blast) and we arn't (totally) poor we all have some kind of income. And I get to go back home! My sister and I are sharing a room, which we haven't done since we were about 14 years old, but not only a room, a bed! It is actually so much fun, we are getting along, and I am getting closer with my sister again. We have these "pillow talks" right before we both go to bed, today I was actually thinking about what we were going to talk about tonight, I so look forward to them.

A spoon full of sugar helps the medicine go down....

So the number 1 question people ask me after they hear I had a heart transplant is how much medicine I take. It is quite a bit...but it could be worst (and actually it is better than my pre-trasplant medication (I had to take A LOT (like 20ish pills a day) of potassium and it really upsets your stomach). I take about 20 pills in the morning, 20 in the evening, and about 10 throughout the day. And yes, I can swallow all of them in one gulp-it is quite the talent because some of them are really big and it totally grosses my mother out. Some of these are prescription medication (like my immunosuppressants) and some are supplements like potassium or magnesium (which may sound like "just a vitamin" (and there is that whole debate over vitamins just being expensive pee and such) but these are very important vitamins. For example: if you don't have enough or you have too much potassium in your body it can effect your heart rate/beats (in fact that is one of the reasons why I spent 3 weeks in the hospital pretransplant (you potassium is supposed to be between 3.7-5.0 and mine was 1.2!) and then I have medications I chose to take like Ambien (Prednisone makes me WIRED).
When I was filling out disability paperwork they wanted me to list every medication and every side effect it had. The disability paperwork is amazing how much there is, but how was I supposed to decipher what medication made me feel what way?
Today my mom was telling me about one of her friends whose son has a pacemaker. After he got the pacemaker he stated getting headaches (the same thing happened to me and the more I research the more I have learned it has happened to others). His mother was asking me what they have tried for the headaches. The biggest thing for me was the side effects. They had tried many medications, most of them didn't work, but even with the ones that did (or did not) I could not stand the side effects.
This is still a problem of mine, I hate the side effects of my medications, but many of them I do not have the choice to take or not-I have to take the. Some days are better than others, but it is still and "up-hill battle". But I have learned to somewhat trick myself and solve this problem. I always have a treat afterwards. Sometimes a little piece of candy, or sometimes I wait until dessert time to take my meds (which can be quite late). I don't think Oprah would like this because I am eating after 7 pm lol, and my doctors would not like it because of the sugar, and my psychology teacher because I am using positive reinforcement with a bad food-but it gets the job done! And I guess the other non-food option would be to buy a Chanel purse every time I had to take my medicine-but I think my father would be out of business pretty quick.
Anyways there are some funny effects of the medications:
1.) Prednison-It finally gave me eyebrows, I never had very much eyebrow hair, but now I feel like Brooke Shields (they look great!)
I get these hot flashes and I joke that I am going through man-o-pause.
Also, Prednisone is a steroid and when you take high doses it can make you really mean or cry a lot. I cried a lot, and was so emotional, it was kind of comical to my family and I freaked out about EVERYTHING. Like someone would mention school and I would start crying that I was not getting to take my finals and I may never be able to-but I never knew why I would not be able to, lol.
2.) Ambien gives me the weirdest dreams/hallucinations. Sometimes I can't remember if something has really happened or if I dreamed it. I have these vivid dreams, and during the day I don't know what is real or not. I wake up in the middle of the night and text people-sometimes it makes not sense at all-like it is not in English and I don't speak any other languages. I have emailed my doctor (how embarrassing). I text people and I don't remember it. I emailed my sister apartment listings in states we don't live in for like 5 room. The day after she got this email she was like: "Thanks for looking for me, and the house is really nice, but I am one person and this is in Kentucky (or wherever)".
My sister calls my transplant experience since October 2009 to now "One big acid trip".

Article About Me!!!

So I am just kind of feeling blah today and I didn't really have any ideas on what I should write about, so I thought I would share this article about me! It was written in my the company my father work's for newsletter.

A Quick Response with a Life on the Line
Submitted by Randy Young, Temperature Control Specialist

At Peterson Power, we’re known for our ability to respond quickly to emergencies in the extremely downtime-sensitive industries we serve. A data center, pharmaceuticals plant, and—most importantly—a hospital simply cannot afford to lose power, even for a moment. But when we’ve heard this message a thousand times, it has a tendency to lose its impact… Until we’re faced with a real-life example of how terrifically important these places can be for the people we love. Gary Weese, Rental Project Coordinator for Power’s Temperature Control Division in Benecia, knows firsthand about the power of a quick response from a hospital—it recently saved his daughter’s life.

For much of her life, Gary’s daughter, Allie, has experienced a gradual hardening of muscle tissue in her heart, an ailment that rendered the organ less and less efficient. Weeks before Thanksgiving 2009, Allie was in grave danger from the disorder, and her name was added to the list of potential heart donor recipients. Since donated tissue must be carefully matched to an individual recipient’s physiology, there’s no reliable way to estimate when an organ that meets a particular person’s needs will become available—one must simply wait, and when the time comes, act as quickly as possible. On November 20th, Gary received the all-important call from Stanford Medical Center indicating that a heart for Allie had arrived. He rushed to the hospital.

That very night, at about midnight, surgeons began Allie’s heart transplant, and roughly five hours later, her new heart was pumping strong. “It was an incredible relief when we found out that a heart was available,” Gary said. “But a lot can happen after the operation, too. Allie needed continued treatment to fully recover.”

Indeed, for twelve days after the operation, Allie stayed at Stanford Medical Center while doctors monitored her heart’s performance. When her condition was determined to be suitably stable, they transferred her to a hotel next to the Kaiser Permanente facility in Santa Clara, where she continued to recuperate. According to Gary, Allie recovered well: “Kaiser had a party on Christmas, and Allie was able to attend—despite having been operated on only weeks before.” Five weeks after arriving at the hotel, Allie’s doctors had more good news for her and her family: her condition was stable enough for her to get back to her normal life, attending a nursing program in college and staying right in the middle of things.

“Stories like Allie’s drive home the point that this can happen to anyone,” Gary said. “The best way to help is to register as an organ and tissue donor with your state. People you know and love can benefit directly—lives can be saved.” Gary added that interested Peterson people can quickly and easily sign up to become organ donors by visiting www.donatelifecalifornia.org (in California) and www.donatelifenw.org (in Oregon and Washington). “It’s that easy,” Gary said. “You can also register at the DMV or by filling out a short form. Donor registration will not change the medical care you are provided if you’re in an accident—they won’t ‘let you die’—nor will it affect your funeral planning or cost your family money. It’s a gift you give so that others might live.”

They Are Better Off Now

I was reading another really good blog by "Sick Girl Speaks" (http://sickgirlspeaks.blogspot.com/2010/05/battle-metaphor-repost-with-new-ending.html) where she discussed the "Battle Metaphor". I had never really thought about it all that much. My mom got me a necklace that says "Survivor" and has a heart with wings, but usually I don't feel like I have really survived anything. But it made me think, one day I will lose the battle and I will not longer be considered a survivor, so does that make me less of a person, or not as great of a person?
You know after someone passed to young, from an awful illness, like cancer, someone will say: "They are in a better place now," which is true, heaven is a much better place. But, they might also say:"they are better off now". I do not believe this at all. Through all the pain I have had, 7 years of nausea, migraines, life changes, etc. everything has been worth those life experiences I have had in those 7 years. Helping people, making people happy, enjoying life with others, it is worth all the pain. Through this road trip I have been in about a level 8 pain, I feel like I am about to cry, and the Oxy doesn't work. But it has all been worth it, I am not only seeing America, I am making memories with my sisters and we are learning new things, and becoming adults together. Alicia Parlette summed it up best when she told her brother: 'I'd rather choose life with this pain than death without it. Choose life, Matthew. Always choose life.' After she told her brother her pain was 100 on a scale of 1-10.

Here is her blog-and where you can buy her amazing book. http://www.sfgate.com/cgi-bin/article.cgi?file=/gate/special/pages/2005/alicia/partone.DTL

I just started the book:"Critical Care" by Theresa Brown, it is so good. I wish there was more nurses like her, or how she describes her self to be.

Again, I totally meant to write about something else, but this popped into my head instead!-No one likes to be rejected

So, after reading another transplant blogger's blog, I planned on writing about something more transplant related, but right before I started writing I did my devotion and read June 3rd in "My Utmost for His Highest". (FYI:this is also a really good book, especially if you mean to do devotionals but never fit it into your life, the author packs a lot of though provoking stuff into 1 small page a day that takes about 5 minutes to read).
Anyways, in the car I was just thinking about how happy I was that I took this road trip with Jackie and Jen. Not only would it strengthen my relationship with Jackie, make it easier for her to move away, but it would also let me grow and get experiences.
The Grans Canyon was never on my list of things to do in life, like I never really cared if I got to see it or not. But yesterday, when we pulled up to it, I almost started crying just for the sheer fact that I had made it to the Grand Canyon and I was getting to see it. It was beautiful. For some reason, a lot of times, when I see something amazing in nature I pray, it strengthens my beliefs, I thank God for making it. I stand in awe.
Todays chapter in My Utmost was about thanking God and Joy. A real friend will not just tell you their sorrows, but also joys. Do we tell God our joys enough, and do we let God speak to us and tell us his joys. This just really hit close to me. Until this trip and seeing America I have never really just let God talk to me, I have done all of the talking. I think through seeing everything it was God showing me his joys and being the un-natury that I am, would have never cared about a place like the Grand Canyon or Sedona Arizona, but God was opening my heart and showing me his joys.
Anyways, I hope tomorrow I write about the blog post I origionally meant to write about because it was really good.
In health news: I am down to 10 mg of prednisone after my 2nd bout of rejection. I don't have to go back to Tx until mid-July (the team knew I was going on vacations and was so nice to let me go-I love them). I am feeling ok. I am just so paranoid about rejecting again. What happens if I reject again. The good news is when I reject my heart does not usually have any damage-so could I just forever reject. I don't feel amazing when I am rejecting-but still am better than before transplant.
Also, for some reason my lower back is killing me! I took an Oxy today (which I usually take at night) and it made me sick! But for some reason ice cream settels my stomach-which I LOVE (but don't want to gain any weight :( ). The Dr. did all of these tests and all they found was that I had normal wear and tear and arthritis in my lower back, is it normal for a 22 year old to have arthritis? Becuase of this, I am so blessed to have a great sister and sester (Jackie and Jen) they do a lot for me. So far every night they have carried in all the stuff from the car for me becuase my back hurts. They are the best.

Music

So today I was on a long road trip and thought of a REALLY good blog post while I was driving, but now that it is 12:28 am, I forget what it was about. So instead I am going to write about other things I contemplated while driving.
We listen to a LOT of country music and I always knew some of the songs had some pretty strong meanings, the biggest one of all being Brad Paisley's with Dolly "When I get to Heaven" (if you haven't heard it yet, look it up, its a must. Do it now!) Anyways, I always knew that they had some pretty strong stuff in them, but now after transplant the words hit me so much harder. Listening to a lot of the songs was just kind of wow, because they were hitting so close to my heart.
In Alicia Parlett's book: "Alicia's Story" she talked about how after finding out about her illness, randomly in the day she would think about things like planning her funeral, what music would be played, etc. She thought this was almost funny how these things just popped into her head, totally normal, but should a 20 something girl really be thinking about her funeral? I love this book so much for so many reasons. One of them being that Alicia helped me put my feelings into words through her writing. All the time I think about things like music being played at my funeral. I never knew if this was weird or normal until I read her book. This book is also a must read, it is sooo good. Order it through the San Francisco Chronicle. You can also read some of it online if you google her name. Here it is: http://www.sfgate.com/alicia/

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.

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.

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!

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

Previous posts I didn't have time to upload

Tuesday, March 09, 2010-No thrush haha and depressing transplant support group.Today was another support group meeting, it was a presentation by Dr. Parek about coronary allograp vasculopathy. It was very informative and
interesting, it was like being in lecture again, but when my mindset changed from just thinking this was a normal medical lecture to this could be a
problem for me, I found the lecture very depressing. A lot of the time I feel like I am on the verge of crying, I don't know why, it's not like someone has hurt my feelings or I am depressed, I just feel like I
am about to cry. I have been doing so many fun things, I don't understand why I am feeling like this, and that is bothering me. I feel like with my family we do not talk about our emotions at all, so this is hard to talk with my mom about and so far Dr. Epstein has not really chatted
with me. Today, when leaving the support group he asked if I wanted to meet with him, but unless I am made to do it, I probably won't do it because it
makes me feel weak. It's like when I almost started crying in front of Dr. Parek, I felt like I was weak, and/or she was winning our fight, I could not let
her see me cry. I kind of just want to chat with a psychologist at the local hospital, but I don't want my family to know about it, so I have to wait until I
start driving again. Hopefully today will be better.
Monday, March 15, 2010This weekend I went to a pub with Jackies friends from school. It was on San Pablo and was kind of fun. I am trying to get Jackie and Jenn to do
more things like that, we all need to be more social. It was a nice group of people from her school, but we had nothing in common and our political
views were very different, so we did not get past just the first layers of conversations, hi, how are you, what is new, do you have a job yet, etc. Yesterday took 2 walks (almost 45 min total). I felt really good yesterday and feel really good today. I am waiting to see if nana wants to go on a
walk with me, her toe is hurting. I started back on the diet and feel pretty good. I feel so good about this diet becasue last time I did it, I was not that committed to it and I still lost about
40 pounds. So I am going to do the same this time and hopefully I will lose more. Hopefully getting the weight off will let me do more things easier with
this new heart. I would really like to do more distance running soon. This summer Kara is doing yoga at DVC with me, I am so excited! I am hoping
to get toned arms, my legs are pretty good, but I need to wait for my chest to finish healing before I do arm weights. Maybe I will do low resistance,
but with a lot of reps?Tomorrow is my monthly visit, but my first time with just Allomap!!!!! But I have not actually got the Allomap drawn yet, I didn't realize I needed an
appointment. Maybe after me and mom will do something fun! This weekend is Clear Lake, I am so excited. I haven't been in 2 years! Hopefully I can walk up the driveway and hopefully I can do the JetSki by
myself! I am so excited!

Ativan

Friday, March 26, 2010-Ativan
I am basically living off/functioning by constantly taking ativan and it doesn't even make the pain go away, it makes me a easier person to be with and
makes my anxiety lessen. I am worried because the doctors will only give me 10 ativan a perscription, so I started taking the klonopin. I am worried
that maybe this isn't the best thing to be doing (taking anti-anxiety medication-especially this kind) but I don't feel like I have any other options. I am sort
of worried I will get hooked on it. My legs continue to hurt and the team hasn't offered any solutions to the problem. When they confirmed I had neuropathy, they did not offer any solutions to help with it. I spend my day just trying not to cry infront of people. I don't know how I could go back to work like this.

Blogs so far

Sunday, November 29, 2009-Last Day At Stanford!
I am so excited to get to the hotel tomorrow so I can use their gym. I can believe tomorrow I will be able to run! I have not done it since June 9, 2003. I just realized that all those dreams of running will become a reality soon. I can't wait to start strengthening this heart and getting strong. I am thinking I will be able to run with everyone else soon, maybe a half marathon? That would be so cool, a dream come true. I feel invinsible, that running and everything will be no problem, that all the sudden I am going to be able to loose the weight. I literally have dreamed at night of running, and I can not believe that soon I will be able to do it. And then it hits me, I am not preparing my self, this is going to be hard work, I am going to have bad days, running is going to be hard. I have to get the weight off and the prednisone weight off. I am worried I am not going to want to eat organic, I will eat junk and that I will stop brushing my teeth 5X a day, or worst of all, I will get bad at taking the medicine because of the side effects. In the back of my mind I am worried that everything is not going to go as smoothly as it has been. When I look around at all of the other transplants, I think something must go wrong soon, how can it all be so good? When is this going to get taken away from me? Sometimes I get overwhelmed with worry that I will need a pacemake or this time even worse-an ICD. I watch my heart rate and rhythm constantly in the hospital to make sure everything is ok, and try and reassure myself that I won't need one, but I must say, I am still terriffied.
Update-afternoonI started researching how to sign up for the Nike Women's Half Martathon and instead found a training schedule on the website. It's a walk to 5K run in 12 weeks. Todays workout was walking 15 min. At first I was a little SOB, but by the end I felt great and didn't want to stop (but also didn't want to wear myself out). The nurses joked that I could just walk down to the cafeteria and get my own dinner, haha. God is so good, I though this would be way worse. Tomorrow is walk 5 min, run 1 min (repeat). I can't wait for the 1 min run, a little worried about the pain. I got a really cute Timex from Target before I went into the hospital, and felt stupid for spending the money, I almost returned it, but it is a bright pea green and soo cute. Im glad I kept it, now I can use it!While I was walking, I all the sudden remembered I would be able to go skiing. Probably not this year, but definately next year!!! Sooo excited. Haven't done that since the 2003/2004 season when I got sick, and dad got scared and took us a bunch. Gotta save up money now!

Wednesday, December 02, 2009
Today I found out I had my first bought of rejection-mild to moderate (3A/3R). I had been having severe headaches since the transplant, but today I woke up nauseous (which seems impossible because of the side prednisone making you feel like you can't stop eating). When we left Stanford I was not neasous for quite a few days, I was so happy, it was the first time in a long time. On discharge, the NP, Christine mentioned one of the side effects of rejection was neasea. For some reason I knew this morning that was what was going on. Fortunately today my biopsy results came back and showed this. This morning, when I did not want to eat my breakfast I knew it was rejection, I didn't say anything because I did not want to be dramatic, but I just knew it. The nurse called my phone a bunch of times, but I missed it and she just said she knew why I was nauseous. I knew for sure then. I didn't get the message until like 6 that night right when we had gotten to dinner at the hotel. Thankfully I was able to call Yuki on the back like and talk to her. I started crying, I was pretty shocked becuase everything had gone so well and I was feeling so good. I had to take an extra 70 mg of prednisone tonight (100 mg total for the day). The go in for IV medication the next three days (Thursday, Friday, and Saturday). I wonder what the side effects of it will be (I think it solumetrole).

Wednesday December 09, 2009Today was the first day that I did not go to Kaiser at all! We literally sat around in the room all day and watched TV (mostly Dog the Bounty Hunter-we have limited TV). The biopsy results from yesterday came back and showed the rejection was better, which I was pleasantly suppriesed at because I still feel neaseous. I am back to taking some Vicodin because I was in a lot of pain today. I am beginning to see the patterns that are going to happen. Like I probably will not feel well the day after a biopsy becasue last week and this week I felt really bad the next day. After taking the Vicodin I feel much better this evening and I am in a better mood. Yesterday was the transplant party, it was so much fun and I am glad I went. I got a T-shirt which I am amazingly proud of. Everyone was so nice and friendly. I met a 17 year old boy, Evan who had Dilated and was on an LVAD. He had his transplant July 4th weekend and returned to school in the fall. He looked great, like he didn't even have a transplant. The nice 30 something year old guy Mark M came up and talked to me again, he is really nice. I also talked with the Urologist and another lady who had Restrictive.
My face is HUGE-bigger than when I got my teeth pulled. I am glad I am so far from home because I look so funny. My skin has never been so dry, its just cracking. But my heart still feels better than it ever has before, I can't wait for the recovery to be over and to start excercising and loosing weight. Tomorrow Eileen is comming, I am so excited. I am hoping to take at least 1 15 minute walk around the parking lot, get mom's haircolor, go to the contiainer store and get craft stuff. I am going to try to knit some stuff. Yuki and Dr. N baby blankets, something for Dr. W, a neck thing for Katie, and Chemo caps. This weekend Auntie Sue and Uncle Dick decorated our place, it looks so good. It feels good to have christmas stuff because we can't have a tree (aspergillos).
Monday December 28, 2009I got to go home for Christmas Eve and Christmas day (I stayed at Nana's and Papa's). We were supposed to come back Christmas night, but at 7 pm mom and I were both to exhausted. It took me about 2 days before I felt better/not exhausted. We left the hotel at 9:30 am and went straight to the Church to drop off Christmas presents, but it was closed, so we went to N&P's to pick up Kara's present and say hi, then we got Katie from Auntie Sue and Uncle Duanes, then we got bagel sandwhiches from the bagel bakery in Dublin and went and got gift certificates from Tootsies in Danville, the I stoped by work and said hi, then we headed home to get ready for Christmas Eve and headed to AS&UD for the night. I only took the nessissities home, but it was still ALOT! There's meds, and my wedge, and my scale, bp cuff, clothes.... it was a lot. Driving home was tiring, just the bumps in the road hurt and I have a some anxiety being in the car because Im afraid that if we get in an accident or the air bag deploys it will hit my healing chest or I would not survive if we got in a big accident.
When I stopped by work they barely recognized me, especially with the mask on. No one hugged be, and it was really awkward conversation basically hi's and that kind of thing. I was there for maybe 10 minutes.
For the christmas eve party I did mom's hair at our house, and since I can't drive, took my stuff to do my hair and makeup at as and ud's. When I got there Uncle Duane was on the pourch, and waited for me to come up and asked if it was ok to hug me, I think that is the third time in my life I have hugged him (2X when we met up at nana's before the transplant). Because of all of this people have really been more open with me. Eric told me a secret the other day and said he felt closer to me becuase I had been through all of this. The few people I have talked to, I have never been so open with, nor have they been so open with me. I went in and helped a very little with getting the food together and then did nana, auntie sues, and katies hair and then my makeup. The night was fun and relaxing and Kara came! Mom and Katie took me to N&P's at like 1030, Nana was up waiting for me, freaking out that presents wernt wrapped. I went to bed and woke back up at like 430. For some reason I had really weird dreams that night and even when I was awake that morning. Nana was up at 430 and for some reason I was thinking that my mom slept over also and it was her. I got out of bed at like 730 and wrapped presents, everyone came around 10 but I was so tired i fell back asleep until like 11 or 1130 and didnt have breakfast. I got a Tiffany's heart necklace! We stayed all day and had dinner there, spageti, which me and mom have been craving. We opened our presents at night and I was exhausted by 7, so me and mom decided we could not drive back and had to stay. The next day me and nana went to breakfast at Hpit and mom came, I took a shower, we packed up and went to drop off presents to jen and eileen and then headed up. We were borded to death, but I was exhausted until today. On monday when I had my clinic visit, dr Kahle said I could go home for CEve and C day, but he did not know when I could finally go home. So I relaxed a little, not knowing when we were leaving. He also changed the dosage of my lasix from 80/80 mg to 40/20 mg. I started gaining weight and by Ceve called the office because I did not want to call over the weekend, but no one answered. I did not want to call the oncall so I called the office today. I was supposed to have a clinic visit this week, even though I dont have a cath, but I didnt know that. So anyways, I made an appointment, so I think they will discharge me tomorrow. I am know having anxiety again about going home. I don't really know why though. I didn't know when I was comming home-now I am scared
Tuesday, January 05, 2010-ZoloftToday was my first day of taking Zoloft. I hate how I didn't want anyone to know I was taking it, but everyone found out I was taking it.

‘we can do not great things, only small things with great love. it is not how much you do but how much love you put into doing it,’ mother teresa;
Sunday, January 17, 2010-First real transplant support group meetingI went to my first real, normal support group meeting on Tuesday. It was actually really good, I liked going and will try to go next time. I don't know why, but being with people who have gone through the same thing you have gone through really is comforting. I was the youngest person by like 40 years, and I didn't really talk to anyone personally, but it was really comforting. My first support group meeting was in November, it was a presentation on Sex after Transplant-mostly geared towards men. One of the transplant patients is actually a Doctor for Kaiser. He had the same thing I had, Restrictive Cardiomyopathy, except he also has systemic/AL Amyloidosis. At that meeting I was doing my stay in the hospital, so I was on the Dopamine drip and wore my hospital gown to the meeting. Leo, who also had restrictive with Amyloidosis (but just in the heart) was there and told me that since I was A+ I would have no problem getting a heart, the only other person that talked to me was a younger guy named Matt. Matt stared at me like he was a therapist, very intently, but was really nice. His girlfriend was there-she was kind of weird. The Dr. brough models of things to help men get have sex and she was touching them and seeing how they worked, I kind of felt bad for Matt, like this must be a little awkward. Matt having a girlfiend gave me a little hope though, I think he is only a year or so out and it looks like he is returing to normal life. I wish I had gotten to talk with him a little longer because he seemed like he would be open with me, but his transplant buddy came up to him and started talking. I think Matt waited in the hospital for 6 weeks for his transplant, his friend came the last four days and waiting in the hospital at the same time he was there. I wish I had a similar story, a friend to go through this journey with. I had Freddie, but I honestly don't know what is going to happen to him. I pray for an emotional change of heart, so he can get his physical change of heart. I also met Heidi , who was in the ICU with me, but I have not seen her since. Matt was not at the support group this week, I hope he is there next week, becuase it would just be nice to talk to someone about my/their experience. I have only really talked to friend and family about it, but it's different to talk with someone who has actually been through it.
In the support group people just updated each other on what has been going on in their health life. It was interesting. At the end, Flavio called on the people who had no spoken, including me. I introduced myself, then Flavio prompted me for questions like, how was your wait, and I though he meant weight and made a fool of myself, but it was funny. And then The Dr. also asked me a lot of questions. But those questions are a whole other post. Part of the comforting part of the support group was finding how we felt similarly on a lot of things. How the doctors describe the biopsy is just a tiny poke with an IV, but to me it really hurts. Debbie briefly said how she had dreaded it the days before, that was comforting because I no longer felt like a baby. Debbie and Kevin said how they had blogs. When I got home I found them and spent hours reading them. Dr. Kevin is such a cool guy and a good writer, I enjoy reading both of their blogs and hearing about their journeys. They both we so real and had amazing insight. I am about to start my first draft of my donor letter. It is weird to even say, I never thought I would be in this situation.
Wednesday, January 20, 2009-2 month anaversiary and day after 6th cath.It feels like the two months have gone by so fast, Nana said it feels like forever ago. I basically feel fully healed. My chest wound is healed and the bone feels good inside and I got my 2nd PICC line pulled yestereday after my cath. Steve M was getting his first cath (he's not transplanted yet) because he has been having some problems. We talked a lot with his wife Nancy, he might stay in the hospital for awhile. He doesn't want the transplant, but he looks terrible. I always tell him how good I feel, I am hoping to convince him to want the tranplant because right now he is listed as a 2, but doesn't want the transplant. Dr. Parek did the cath and was actually nice. She was and hour and a half late, but talked to me about making a scrapbook of her trip to Africa. The cath went ok, didn't hurt too bad. But I immediately bruised under the bandage, Dr. Parek said something about scar tissue. It felt like she took 15 biopsy samples. I felt like I blead forever, it was in my hair and all over. You can feel it running down your neck and into your hair. If this cath is good, I don't have to get another for a month. And if the next two are good, I can just get the Allopath and then my yearly. The yearly sounds scary. On odd years it is a left and right heart cath and an angiogram. On the even years it is a left and right and a dobutamine stress echo. Its a two day event and I am already dreading it. I feel fine, so I know that it will come back a 0/NER, but on the other hand you are always thinking that it's going to come back bad. I feel like I am always waiting for something to go bad. Like this has been too easy and I have not gone through enough. I just felt blah today, I didn't do anything at all, just lyed around a lot. My mom did the same thing. I still haven't gotten out of my Pj's and its almost dinner time. I had lunch at 3. This is probably the best I have felt after a cath. I am not in pain necessarily, just kind of blah feeling.
The results just came back and I got a 1A/1R. Which is ok. I get to go down to 15 mg daily on my Prednisone and don't go back for a month. I was scared becuase they called at 415 and I missed the call, Charlene left a message just saying call us back, so I was nervous it was bad news. I got really nervous, I thought if it was a 3 again I would have to get another IV, which I really hate, especially since I just got the PICC line out.
Monday, February 1, 2010-Seeing my heart and donor letter
On Tuesday we went and saw my heart at Stanford. I had 10 family members go with me, I think people don't usually do that. I am really glad I went and saw it. I think this might be an emotional experience for some people and it was not emotional for me, but it did "seal the deal" in a way for me. I think up until that day I was not sure that I needed the transplant when I did, this made me realize that I really did need the transplant and my heart was damaged enough. It also gives me something to talk about when people ask how I am doing. Instead of the long awkward pause after someone asks how I am doing and I say fine, now I can say "Wanna see my heart?!?!?!?" I have pictures of it on my digital camera which I carry with me. It was really cool to see a human heart, how many people get to do that? My heart had already been dissected, so I could see many different views of my heart. My heart was pretty gross. I saw where the restrictive part of the heart was (the muscle was discolored) and the ventricles we a third of the size. The heart is truly amazing, the makeup of the valves are so delicate, but yet they can hold back so much.I was glad to learn that they will keep my heart forever, they incinerate the livers and some other organs. I don't know why I really cared what they did with my heart, but I kind of didn't want it to just be thrown away. They also kept my pacemaker, I think that is why I did not get it back even though I asked. A part of one of the wires was still in my heart, the wire was a lot thicker than I though it would be. I think a lot of doctors think because of my age I don't want to know about what they are doing. I wish I had seen the actual pacemaker they had put in because pacemakers are so different. I also wish that I would have gotten to see the heart before they transplanted it for comparison. That reminds me I still need to write my thank you letter to my donor family. It's hard to write it, not emotionally for me, but how to phrase everything and to know what to write, what the family would want to hear.
Wednesday, February 03, 2010-Recovery
I feel physically strong and pretty much recovered, but then I have those setbacks. One of the things is I am having really bad leg cramps. Its somewhat tiring mentally to just constantly have something wrong with you. I feel bad for my family who always has to hear me complain about something, that must get really tiring. In the back of my head I am also worried that I am one of those patients who always has something wrong with them, and the doctors no longer believe their symptoms. Right now I feel good, I just get tired really easily. I still am not sleeping well, but don't take ambien because it doesn't work. It feels like I am always sleeping or laying down. I feel like I have not gotten anything done. I am also a little worried becuase it feels like I am walking slower and it's harder to walk even though I am walking everyday. It is weird to "let" you body feel better and better everyday instead of worse and worse like it has developed my whole life. Because the progression of my illness was over years, in a way I feel like I am just waiting to go down hill again, because that is the only thing my body knows how to do.
Saturday, February 06, 2010-Non-update, update
There is nothing new happening. This Tuesday is the support group, and the following is my 3 month biopsy. I can't believe it has been a whole month since my last biopsy. I am deciding on what symptoms I need to talk to the nurses about. My legs really hurt, and I am having pain in my stomach (which I have had for awhile), I have a sore throat like you get the day before you get a cold, and some other stuff. I don't want to seem like I complain a lot, or that I have too many symptoms to really have something going on, so I need to talk to them about the major ones, which I guess right now would be my leg pain. It is there all of the time, even though my Mg+ and K are good (1.8 and 4.1). I got a few thank you notes done for my time in the hospital and I am beginning to feel like I am accomplishing something. It feels good. When I am done with the thank you cards I will start on my micro. I have also knit a lot and actually finished 3 blankets. It feels good to finish it. Jackie sorted my medicine for the second time. It took her a half hour. It was really nice this week to just be able to reach in and grab the medicine and not have to sort through it. My sternal incision opened back up a little this week, so I called the office and they sent me for a CT scan, they said the outside of the scar might have healed, but the inside might not have. It took 2 people and 3 tries to get the IV in, but they got it in. I was proud of myself for taking getting 3 IV's so well, the only one that really hurt was the last one. It was weird because the days after the CT I was really, really tired and have been sleeping a lot. The night before the CT I could not sleep at all, but I was not nervous. I still have not heard the results of the CT scan, but the opening is healing, so I am thinking everything is ok.