Saturday, December 25, 2010

T'was the Night of Christmas


12/25/10 T'was the Night of Christmas
Today and last night was PERFECT! I got to spend another year with my family (except my father, who has the flu so he is in quarantine :) and except for my father having the flu, I got all of the presents I want-to just be with my family. I honestly don't mean this to sound cheezy, and I know most people will not understand this because they have not had to really think about the thought about their death, but right after I had the heart transplant last year was the holidays and then my birthday and I did not really want any presents. I just thought that this was because I was too tired to think about that sort of thing, but I feel the same way about it this year. I would much rather have all my health-like have no rejection, have the back pain go away, get my memory back, etc. and be able to be here and with my family (and conscious) than any present that could have been bought.
So here is the run down of Christmas Eve and Day:
I was late for dinner to the Christmas eve party because I was running around and wore out too quick, I fell asleep before I left for the party and was awakened to my cell phone of my grandmother calling me to tell me dinner was being started. By the time I got there all the food was gone! But I had mashed potatoes, which were yummy!
This year instead of presents for Christmas eve my family did white elephant gifts, which was a lot less stressful than getting a gift (or gifts) for someone. And it was so funny watching people opening them. And they were really fun to buy.
Nothing too exciting about Christmas morning. My whole family went to my grandmothers house and had breakfast and then just the cousins did a secret Santa exchange. Then we sat around and talked for a few hours. I have had alot of fun getting to know my cousins girlfriend Anni lately, she is really sweet, and I got to talk to her a lot to day-too bad she is going away to nursing school in Napa for 2 years. Then the cousins and aunts and uncles had to go and just my family stayed and had hours de jour and a family friend came over and my grandmother made veggie soup (from scratch). My mom, sisters, and I opened gifts.
Last year I was too tired to really think about my donors family. But this year, now that I have been in contact with Olga, my donor sister, I just can not imagine being in her situation. From how it has sounded from her letters, she does not have a family and raised Ruben (donor, her brother). So she is alone for the holidays. What even complicates the situation more is that she speaks Spanish and I speak English. I hope she realizes the greatness that she has done with her act and the impact that she has had on my life and that it is because of her that I am getting to spend this Christmas with my family. I am still thinking about the if/how/where/when/etc. of meeting Olga, who wants to meet me-which I know sounds really selfish-I know I should be the person pushing her to meet me (and not the other way around) but I just did not think that it would happen so quick and I do not want her to think that I am a replacement for Ruben. I still do not think that she has gotten over his death.
The last two years my cousins has made me a special ornament for our Christmas tree. I feel like this is a special way of honoring Ruben in our close knit family.
So my family likes to get me funny heart shirts and here is my the ones I got for Christmas:
This one is actually a campaign for Pearl Izumi (a cycling company), my Dad got it for me


After I got the shirt and he told the guy at the check out why he was buying it for me (that I had had a heart transplant) the guy gave me this sticker, I am not sure it really fits my situation.


Jackie got me the following.
Jen (my cousin) drew the tin man in this one, and Jackie designed this, I think I am trying going to try to sell these shirts to raise money for my Team in Training ride.


Tuesday, December 21, 2010

12/21/10 Medical Catch Up


The above picture is me and Heidi and her 3 year old daughter Ashley(who I FINALLY got to meet! (because of the whole no kids in hospitals thing last year because of the flu)-she is sooo cute, now I see why Heidi missed her soo much) Heidi and I got hearts (she got a kidney too!) on the same exact day and shared a room in the North ICU at Stanford (she was a great room mate and has been my one room mate ever at the hospital!) and she was in the room next to mine for a few days at Santa Clara before transplant. She looks so good, I did not recognise her, she is doing so well. I think this will have to be an annual event (taking the pic of us). This was at the heart transplant Christmas party which had 300 people and it was so packed it ran out of food. It was so much fun and so good to see transplant friends and get updates. Time went so fast I did not get to talk to everyone I wanted to or for as long as I wanted to. Again, Dr. Weisshaar made a touching speech that I will try to write about in another post (but I never got to last year!).
So, I still have not finished my post about my Thanksgiving (which I had a life changing story :)! )and just a ton of other events that actually have to do with my transplant (like I spoke in front of about 250-300 people, and I rode 20 miles!) and I have started other posts, but I have just not finished them. So today I am just going to get caught up with what is happening medical-wise because it was somewhat of a change.
So I had my annual check over November 30-December 1 (It is a 2 day process filled with that must be done on a Tuesday and Wednesday because Monday you have to have new blood tests, Tuesday you must get an EKG, Chest X-Ray, Echocardiogram, and a physical (and go over your whole cardiac history with your new heart (it took for just the clinic visit took from about 1-5). It was basically saying goodbye to my old heart, and going over what has gone on with this new one (which is actually alot, when it is supposed to just be a normal heart like everyone elses). So Au revoir my 1st heart-I think we all need one last picture



Don't I have the creepiest look on my face, lol

When I came in to the clinic I also got a letter from my donor's sister (but that is another post) (IS ANYONE GOING TO BE AT THE ROSEBOWEL OR KNOW ANYONE WHO WILL BE THERE-and will see the floats before hand and can put/take a picture of the rose I am going to dedicate to my donor please email me asap) the donors sister really wants to meet, which is surprising because it just seems so soon, like her two letters do not seem like she has not gotten over her brothers death, and usually when you hear of people meeting with their donor family it is after years-but again this is a whole nother post, and I would like to share my letters with everyone because everyone who has read this has been so supportive of me and my recovery and inturn part on meeting the family.
So, we came back the next day (usually for heart transplants caths are done on Tuesdays (which are just biopsies to check for rejection), but because this is an annual (which is a right and left heart cath) and they take soooooo long (like an hour) they do them on Wednesdays. (They take biopsies, check the pressures, and make sure the arteries and veins look good in the transplanted heart) My heart looked pretty good except that it was a little stiff (which at first I thought might mean that I was getting Restrictive Cardiomyopathy (which is kind of like a stiff heart and you get it from a virus, congenitally, or from a heart transplant), which I freaked out for about an hour, but then the doctor came back and I asked her and she thinks that it could be from the rejections I have had, or that I was in an episode of rejection. But my arteries looked great! (which is usually a big problem post transplant and even if you have great cholesterol (which I do!) you still have to take a statin because your blood against the donor arteries and veins causes hyperlipidemia).
The actual process of the left heart cath went ok, much better thank at Lucille Packard Childrens Hospital (LPCH-Stanford Children's Hospital). As soon as I felt the littlest bit of pain Dr. Weisshaar gave me some more Lidocane, so it wasn't too bad. The worst part was she pressed on my bladder for like 30 min with a sonogram to look at my artery and vein (which eventually made me have to pee) and the laying on the table and laying in a gurney after for 4 hours in recovery so that my artery would clot. So, back to my bladder.
So, the biopsy came back 1R/2A and my allomap came back 33 (when the cut off for my doctors is 34 so technically I would have been fine which somewhat scares me and makes me not trues Allomap even more), which means that I have inflammation. If everything had come back ok, I was not going to have to go to the clinic for 4 months!, but since I had this result of inflammation, I had to go back in a month and have a biopsy. I went back on prednison, but just to 5 mg, I did not have to do the whole prednisone taper and I changed my myfortic, which I was taking 720 Mg 2X a day, to Rappamune, which I started off at 1 mg and then had blood work to see my levels and now take 2 mg and will stay there. Even if I was not having the inflammation issues we were thinking about switching to the Rappamune because of my nausea, but now I think I just have a different type of nausea (this may be TMI, but now I am just sort of like throwing up in my mouth), but it has many positive benefits like it is better on your kidneys and it is better for not getting skin cancer. I was really scared to try this because the doctor freaked me out because she said that this could cause permanent lung scaring and (before we knew about the inflammation) I said I was not going to switch because I did not think it was worth the risk, but then it was no longer a choice and so far, so good! So I think I have tried every kind of anti-rejection med but neroral (which is another kind of cyclosporine).
I praise the Lord that I only have to have this left heart cath on the odd years, I hate them! But I have heard that the dobutamone stress echoes are also not that great. For me the whole issue with the left heart cath was the horror I had at LPCH, I think the cardiac surgeon actually cut my femoral artery when he put in the cath because I had a HUGE whole and massive bruise and it was sooooo painful I screamed and they did not use lidiocane or anything to calm me down. After I had this last cath, even though it went so well, I just got so emotional when I saw my mom, I started crying. I think it will take a few times of the left heart cath (and getting used to it going well) before I can get it in my head that it can go well-that surgeon left me with some emotional scaring.
One last story to leave you with. My pain doctor, who I have told I can not take NSAID's prescribed me an NSAID, but I did not know it was an NSAID. Before I took it, I called the transplant clinic to make sure I could take it. The nurse checked with a doctor (which took forever-and of course it was the 1 doctor I can't stand and always screw up) and the doctor gave it the clear to take it. So I take it around 5 pm. Before bed I go through and start reading all those papers that you get with your meds (I always do with my new meds) and I read that it is an NSAID. So I freak out and call my mom to see if I need to call the on call transplant cardiologist, she thought if it had been this long things should be ok, so I waited until the next day. I called the same doctor back and told her it was an NSAID (which I guess she did not realize) and she told me I could not take it. I was origionally told that 1 Advil would shut down my Kidneys from a reaction with my antirejection meds, so I am a little nervous.

After the whole annual me and mom ran down to Carmel and had a very nice day and a nice lunch at the forge in the forrest.





12/21/10 Medical catch up.

Monday, December 6, 2010

One Year Heart Transplant Anniversary!

So on with the saga of what has been going on in life:
The next day on my way to small group I got a text message from Audrey, AJ's sister. AJ is a patient I met a few weeks ago and was just listed for a heart transplant, I went and talked to him about my transplant experience. It was really nice to meet him and connect him because we were so close in age and that is hard to find. He is 25 years old and his sister just graduated from the same nursing school my sister graduated from-one year later. AJ is also looking to go to nursing school, we had very similar stories. Anyways-back to the text message-AJ GOT HIS HEART-exactly 1 year after I got my heart! Isn't that kind of weird? I told his sister we were heart transplant twins. I think he is getting out of the hospital on Monday (today) and is hoping to be at the Christmas party where I hope to see him and get an update.
After small group I back home to CLEAN/organize my room for my party. My family was having a party for my one year anniversary of my heart transplant and all that I have accomplished in one year with everything that has gone on.
The party was so much fun. I got to pick the menu, which was all carbs-cheeze spaghetti, Eileens cheese bread, salad, and strawberries. And for dessert Fentons ice cream. I wasn't expecting any presents because my family had already gotten me my bike:




a few months ago, but I got: a scarf from Beijing and perfume from Paris, cards, a book of quotes (they were funny quotes for days when you need a pick me up) and a bunch a stuff for my bike from my dad and gift certificates to the bike shop that I bought my bike from and that I am thinking about buying another bike from (I am thinking about doing a ride over two days from Seattle to Portland). It was so much fun to spend the night with my family and best friend and I am so thankful that I have them there to support me through this whole experience-without then it would be very difficult.

Sunday, December 5, 2010

Giving Back

So I have had many mile stones and I wanted to write them out so hopefully they will get out over a few small posts. Here is the first one of the day before my one year heart transplant anniversary.
I guess it is good that I have been too busy to write about my one year heart transplant anniversary, but I really want to write about it before I forget about it. On Friday, November 19 I donated blood for the first time. Since I was by myself I don't have a picture, but here is a picture of the sticker I got:




I wanted to donate blood because it was one of the things that I was donated to me that I could finally give back. I was given many, many units of blood during and after my surgery-something like 9 units, so I feel like I need to replenish the supply. One bag of donation can save 3 lives. I took awhile to get through the screening process, but it only took me 4 minutes to fill the bag-because I have such a strong heart!
I thought about writing about what happened this day a year ago, but maybe in a few months.

Monday, November 15, 2010

11/15/10 Survival Mode

11/15/10-Survival Mode
I am not sure if I have written on this topic before, but even so, more thoughts came up about it when I was at a TRIO meeting last Thursday. One person there needs a transplant, but they are nervous of the surgery (which everyone is-who isn't scared of any surgery? but for anyone out there waiting for a transplant, all I can say is it was not as bad as I though it was going to be) and they don't like to take medicine (I will get to this later in the post-but I feel for them here also).
Before I got my heart transplant I steadily took more and more medication starting the January before the transplant (January 2009). From January to July I did not really feel like I HAD to take every dose. Then in July I HAD to take more medications and to function I HAD to take every dose, but I guess because of my age and my rebellious nature, every once in awhile I skipped a dose. When I skipped one of these doses I felt awful, at this point I was taking anti-arrhythmics, diuretics, K+, etc. I think though it was good to get to go through this experimental phase then because now I know how quickly I will feel sick if I miss just one dose. Before the transplant I NEVER took liquid medication, no one told me that I would have to take liquid medication after the transplant for awhile, so it was quite a surprise to me when I was given it in the hospital right after transplant. At first I almost said that I could not take it, but I decided before I made a fuss, I would at least try and take it, and I was able to take the medication. This is when I think my body was in "survival mode", I was able to do things that I would not normally be able to do, like have multiple IV's put in, and other painful things. I think at this point after surgery my body was doing anything it needed to survive and I think this mode lasted for many months after. It was a hard few months after the transplant also, the first few weeks when the tweaked my meds and I had to have a cath every week (my neck was sooooo sore) were really hard. Fore many months the all of the medications made me sick and my back was a mess. But eventually life has gotten much better and in a few days I will be 1 year out and I think I am out of this survival mode and into a more normal life mode. Now it is easy to take all of these medications. Someone was asking me yesterday how many pills I take a day, and I told them it was about 50 total (some are more than one of the same pill) and they were shocked, before transplant I would be shocked, but now I don't think my medication regimen is that bad, I am pretty used to it.
In heart news:
One of the nice things about transplant is that you have gone through all of this pain, so after you can go through nearly any painful thing. One doctor told me that an injection in my back was going to be pretty painful-I honestly did not notice it. I had to get things burned off my skin and the doctor told me to tell her when I could not handle the burning any more-it really never bothered me, I just wanted the stuff off and the procedure done so I just told the doctor to finish it so I did not have to do this again. After she said that usually people tell her to stop as soon as she starts. After getting a heart cath and a heart biopsy I feel like I could withstand just about anything.
I went off Prednisone-for the 2nd (and hopefully last) time (on Saturday Nov 13-a day to be marked in my Tx history)! I am having a biopsy on the 1st to make sure everything is ok, except for being tired (which is expected) I feel fine, no irregular heart beats, so I think all is well and I am done with Prednisone for awhile!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Saturday, November 6, 2010

11/6/10-"I Don't Buy Green Banana's?"

11/6/10-"I Don't Buy Green Banana's?"
I think that the only people that like the songs that make you appreciate your life by talking about the singers impending death are people who are not sick, people who will never be sick, people who are perfectly healthy. People who are sick, people who might not make it until they are 40, or people who have lead "different" lives because of an illness detest them. Do I honestly need to be reminded to live like I was dying, or that I might not get to eat the produce that I just bought?
At lot of this comes because Dr. K, against the wishes of other members of the team (but for very good reasons) decided to lower my prednisone by half-hopefully to get me off of it eventually. Last time I did this I was in Texas, rejected, went to the ED and made and emergency flight home. I know everything will be fine and I have always pulled out of the rejection, even if it does take some IV solumedrol, but I don't like what it does for the long term effects/damage of my heart. Will this episode of rejection not make this heart last as long?
I do not need these songs because I appreciate the life that was given to me and I always will. I know that a lot of transplant patients say that once they get back to their normal life, they forget to live like they had a second chance. I know it is easy to say that that would never happen to me, but I am certain it will not. I have too many reminders everyday of what my life was, taking my medication everyday, going to clinic visits, getting dreaded biopsies, etc. For so long I was too exhausted to do ANYTHING and was just pushing through life, now I am actually getting to enjoy life, and I get to see the difference!

The songs I am refering to are Tim McGraw's-Live Like You Were Dying and some other guy's I Don't Buy Green Banana's

Monday, November 1, 2010

10/31/10 Back to School


10/31/10 Back to School
So I am taking a class for Jackie so she has units, but she doesn't have time to take it. I picked a class that I had taken before, that was easy, that I had gotten a PERFECT score in, and that I thought would be a breeze (International Business-just in case you were wondering). My brain is just starting to get the wheels going, but it is really hard to get the rust off. It feels good to get into the groove of things again, I have never known anything besides being in school-that has been my career for almost 20 years and the thought of being able to go being able to go back to school next semester is really exciting. Even though this class is busy work, I actually started to enjoy it because it was just nice to be back in the educational setting. It was so weird because I have not necessarily forgotten so much, but I lost it from my memory-it somewhat feels like an amnesia that I am rebuilding. Some of this information feels familiar, but some of it I am having to re-learn.
So anyways, here is my little set up, where I saved up all of my (Jackie's) homework for the week (because my textbook did not come until Saturday) and I worked for 4 hours straight, and I did the extra credit (but I don't know if I did it right-but I always attempt extra credit!).

And I have to say I wrote this and spell checked it and it said there were no misspellings-wow, I think that is progress people!

Friday, October 29, 2010

10/30/10 Accomplishments


10/30/10 Accomplishments
I like to think that my (so far short) life has been marked by my accomplishments, that is one of the reasons why this year has been so emotionally hard on me and besides getting up every morning, (which believe me, some mornings was a feat) I did not accomplish very much.
But when I have ran into people I have not seen in awhile and they ask what I have done I love to tell them that I have gotten a heart transplant. It kind of shocks them because it is such a rare thing to get done, and people act like I did something good. I don't get why, I think they are just sort of shocked.
They say: "Oh, I graduated from UC Berkeley and I am going to Stanford for Med school, what are you doing?" And I can say (without batting an eye): "In November I got a heart transplant," and they almost fall over. They think they have "one-upped" me with the whole Berkeley-Stanford thing, and then they hear my story and they did not even know what was coming.
Oh, and I would like to point out that this time last year I was a permanent resident in the hospital until January, and I have not been back since (to live there) and it feels good! But everyday I go through the emotions and the major events of what happened the days of my illness. Jackie, my sister, who has a big, hot shot job, is going to buy me a present for staying out of the hospital for a year :)

The picture is of a giant cupcake that Jen made and I made the icing for (but did not eat).

Wednesday, October 20, 2010

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").

Monday, October 4, 2010

"Professional Volunteer?"


So, I have "moved up in the ranks" of volunteering (I got a REAL badge!) and now I get to run around the hospitals with the paid donor service lesions (the people that work for the organ procurement agencies-the people that meet with the donor families or schedule training event dealing with organ donation for hospitals). We only got through a very small part of Santa Clara's HUGE county hospital and an even smaller part of Santa Clara Regional Hospital, but I learned so much today. It was great to be there today for so many reasons:
Many hospital workers had never met a recipient: Even people that directly deal with donor deaths had never met a recipient, so I think it was nice for them to finally see that they were actually doing something, that the organs and tissue were actually getting somewhere.
I learned more about CTDN and how they acquired the tissue bank and more about tissue banking: CTDN is a very complex network and there is so much going on with it that there is always more to learn. Thankfully Mina was training a new hire, so we were both learning the ropes. This is good for me because I think I would like to work for something like CTDN one day and it gives me experience with it. It is getting me out in the hospitals and familiar with the hospitals, and I already know when to call CTDN, which is more than I can say for some experienced nurses. Did you know CTDN does an audit of hospitals to see if the hospital staff missed possible donors. I also learned more about tissues donation. There is all this hype about organ donation because it saves lives, but tissues donation also saves lives and I just learned more about that side of donation.
Hot Doctors: We all agreed the ED has the best (looking doctors, and friendliest! doctors). Since two out of the three of us not married and would be perfectly fine with marring a doctor, we decided me must visit the ED of every hospital-for an extended stay. Infact, we got invited to the Halloween party of one hospitals.
New Friend/Good Conversations: There was LOTS of driving and LOTS of traffic, so it was good that everyone was so open, friendly, and talkative, sometime those kinds of rides can be sooo awkward! I got to hear Kari's liver transplant story-she was transplanted when she was 9 years old! And I finally got to hear Mina's husbands story. That was such an emotional story. Sometimes hearing a story like that makes you wonder how someone can get through life. Mina has been going to school for counseling, going through what she has gone through she is so in-tune with the transplant world and our talk was better than any and all the therapy sessions I have had combines from all my transplant career.

Tuesday, September 28, 2010

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.

Sunday, September 19, 2010

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!

Saturday, September 18, 2010

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!

Wednesday, September 8, 2010

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.

Tuesday, August 31, 2010

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.

Wednesday, August 25, 2010

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"

Tuesday, August 17, 2010

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!

Monday, July 19, 2010

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.

Sunday, July 11, 2010

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!

Friday, July 9, 2010

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.

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

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!

Thursday, June 24, 2010

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.

Friday, June 18, 2010

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".