Wednesday, June 30, 2010
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!
Friday, June 25, 2010
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!
Thursday, June 24, 2010
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.
Friday, June 18, 2010
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".
Tuesday, June 15, 2010
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.”
Saturday, June 5, 2010
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.
Friday, June 4, 2010
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.
Wednesday, June 2, 2010
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/