Friday, October 29, 2010
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
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
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.