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- 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").


  1. Allie,

    Isn't it amazing the amount of things you learn about every day on this epic journey we are all on? I have learned that my symptom-free kidney rejection is lurking at any time, like before our well-deserved vacation. We did go to Tahoe in my little 2-seater Honda, top down, and it was pretty cool. Until my cell rang Friday and Dr. Lee from kidney tx told me to drop in for a biopsy. Did it early yesterday, and they found mild rejection requiring a 2 1/2-day stay and three IV's of steroids. I will go home tomorrow with some med adjustments.

    Anyway, your latest post is quite awesome, lots of insights. I am sure you will make the right decisions. See you out there in Transplant Universe...

  2. Bob, it is so not fair all that you, Cheryl, and your family are having to go through, but I commend you for always keeping a positive outlook, it always amazes me how you and Cheryl are always so "up", espicially with all that you have gone through.
    See you at TRIO in a few weeks!