Tuesday, August 31, 2010
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.
Wednesday, August 25, 2010
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"
Tuesday, August 17, 2010
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!