10/19/10 Practicing Life After Transplant

So I am long overdue for an update. Life has been really busy, I have just been really looking forward to getting to Texas-to see my sister, volunteering, being with family, and just the everyday heckticness of life. I am almost exactly one month away from being a year out!!!!
I must start out with a hilarious incident that happened when I was volunteering with the California Transplant Donor Network doing grand rounds with the pediatricians the day before I left for Texas. Right after transplant I used to always wear clothes that covered my scar, but they don't make clothes for women like that, so I scrapped that idea and have just gone back to dressing normally. At the end of the presentation people always come up and talk to me. I was wearing a V-Neck shirt and everyone that talked to me stared directly at my scar! I expect this in the normal public, but not really from doctors who see scars everyday. So later that day I was talking to my sister on the phone and she said that next time that happens to ask the person if they have a question. Well the last person I talked to was the 80 year old Chaplin-I don't think in the 10 minute conversation I had that they looked at my face once! It does not bother me at all, I just think it is too funny!
I feel like I still have so much to write about my transplant life, but yet it is so hard to pinpoint what I want to write about. Earlier today I started to write just a general update, but it just felt so generic that I stopped. Later in the day I was writing an email to a heart/kidney transplant friend (Hi Bob-http://www.txtrib.blogspot.com/) and I finally thought up a good-original blog, its sort of a two-fold subject.
Originally when I went to Texas with my sister in the end of May, we were planning that I would move down here with her and I would come back home every so often to go to doctors appointments. Well I had to get immediately home because I felt sick and had an issue with heart rejection. At that point in my transplant I was about 7 months out.
It feels great to be back here, to see my sister, to get away from the stresses of life. But after I got here and "let loose", I realized this is a practice run. There are so many things after transplant that I had to make into a habit to do, like take medications 3X a day, take my vitals 2X a day, refilling my medications, being in contact with my doctors, etc. Being on vacation and really taking care of yourself is another thing that I have to learn to make a habit of doing.
When I first got here, I thought: "Hey, I am on vacation I am going to sleep when I want, eat when/what I want etc." and because of the time change my medications schedule got off-even though I have NEVER missed a dosage-EVER! But after two days it made me feel not great. It just made me realize that I had to keep in the motion of normal life if I wanted to stay feeling well. There is so much of this transplant life that I still have to learn about and this is just one of the things, that I can't just basically be lazy.
So, the other part of this is that I am beginning to feel like I am in the "free and clear zone." I am not sure of this because I still am waiting until next month to have my annual, but things are getting easier. I have not had major rejection since may-minor since July, I am getting used to the nausea, less migraines, and I am getting used to the back pain. I am working out the foggy head and at the yearly the doctor will decide if I need to see a specialist so I feel more confident about returning to school. Medication is working for anxiety, I honestly don't feel like I am getting anything from the therapist they hooked me up with-she is nice, she just doesn't seem to understand what it is like to have a chronic illness, and I just no longer feel the need to see her, I feel like a long of the people I have met in the transplant world have helped me think through the issues I had with my transplant better than any session I had. Life is just getting into a good rhythm! I am starting to think about making plans, I am seriously considering going back to school in January or if it doesn't work out in the Fall-like a school I have to go to-like physically go to, not online. This trip just made me realize that the original trip I was not quite ready to take, I was just not quite there health wise and I think that the minor rejection sent me back before I did anything too stupid; although this time I drank the tap water for three days before anyone told me that you are only supposed to drink bottled water! Should I make my plane ticket home now, or wait out the three weeks?

The pic is when I took my nana to the hospital, she had an allergic reaction to the flu shot, but I still had to wear the mask-the duck mask (ask all the other patients called me in a wisper "look at that girl in the duck mask").

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!

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".