Yoga Journal

I took a yoga class this semester and had to keep a journal answering specific questions.  One of the answers stood out to my teacher, it is below.
The question given was: Describe a memorable act of kindness that was shown to you.  Pay it forward.  Describe that experience.
My answer was: "A memorable act of kindness that was shown towards me was when someone decided to donate their loved ones heart/organs so I could live.  I am so appreciative to the family that agreed to the donation and to the donor that gave me their very healthy heart.  A way I “pay it forward” is I volunteer for the California Transplant Donor Network to educated people on organ donation and transplantation.  I hope that more people will understand the subject, through my education, and will be less scared to sign up to one day donate.  I feel like this is helping the over 115,000 people still on the waiting list. "

Categories of Transplants

10/22/12 Categories of Transplants

There are many ways to categorize transplants between people, the organ you are getting, how many organs you are getting, 1^st transplant vs. re-transplant, etc.  The category I am talking about is the age you get your transplant and how being that age affects you. 

I have categorized the ages into 3 groups: infant to 10 years old, 10 to 35ish years old, and lastly 35 years old and over.  I came up with these groups because after meeting so many transplant recipients, I started to notice patterns in how people were affected in relation to when they got their transplant. 

The youngest group was well used to their transplant and living that life, they don’t remember a life before transplant.  But, the majority of these patients seems to get in trouble when they are in their teens (through not taking medications) because they do know the life without their transplant, how sick they were before transplant, how hard it was to get the transplant, how hard the surgery was, and that their medications really do something.

The 10-35 year old group, my age group, I feel like has many adjustment issues.  We have lived a life we have known, have a routine, or a life “plan”/ are making our life “plan”, and then all the sudden it changes in ways we cannot prepare for.  I was in school when I got my heart transplant, it took me about 2.5 years to get back to school, part time, and I had to change my degree to fit my new life.  People in my age range our still trying to figure out our pathway for our lives while trying to take care of our transplant and fit our lives into our transplant life.  We are also facing problems that the medical community does not know how to take care of, specifically for heart and lung transplants; an example is post profusion syndrome (pump head-I hate that term!).  It is a type of memory, concentration, speaking, and writing issues.            

I know the last group might seem like a very broad range, but let me explain.  This group is “adults” and usually they have an established life, family, and career.  People over 65 years old getting transplants are retiring from their jobs.  When asked about things that I have had trouble with post-transplant at a support group, people have just assumed that it was a part of their aging.  This is also a group that is most represented at support groups.    

All three of these groups face different adversities.  I feel that middle age group has been the least supported, so with the support of TRIO, I am helping to develop an online support group for the age range of 18-30 years old.  After losing a close heart transplant friend, Evan in June, I really wanted to reach out to others who are having trouble with their transplant.  If you are interesting in connecting to this group email me (through here) or look up the TRIO website (Transplant Recipients InternationalOrganization), or connect with me on facebook.com/allie.weese.  I hope to hear from many people!

Giants Donor Day, with my sister Katie!

2 ½ years later and I’m finally getting back to a normal life!

05/03/2012  2 ½ years later and I’m finally getting back to a normal life!

I went back to school in January to take two classes, they are very hard (Calculus and Accounting II), but I am actually doing very well!  Originally, I wanted to go back to nursing school to finish my bachelors in nursing, but nursing school is really intense and I don’t think my body could handle being in the hospital with all of the germs (being sick can spark an episode of rejection).  So I just decided to start back to school slowly (I honestly did not think I would even have the brain power to even take these classes) and practice going back to school.  It has been really good not only for my brain, but also just to get back into a normal routine. 

I haven’t had a rejection in eight months and I feel my new-very strong medication is working well to take care of those problems-I think that phase of my life is OVER!!!  I feel like for the most part everything else is starting to normal out and I am beginning to see how my “new normal” is going to be.  Some things, like staying up for longer during the day I think I will just get better at/will be able to build up my stamina. 

Two weeks until I see my donor family!

Closed off/Open

04/6/12

Closed off/open

Before I had my transplant, virtually no one knew I was sick.  I told people I had a pacemaker if it came up, but I never told them the extent of my heart problem.  I think it was disbelief, I did not think I would ever be to the stage of actually needing a heart transplant, so why tell people that I did.  I am also very low key and I thought that it sounded very dramatic when I told people, so I didn’t. 

Now, I am very open about where I am in my health expedition, I will tell anyone anything for many reasons.  I want to show people how dramatically my life has improved, so hopefully in turn, they will see the benefits of organ donation.  Another reason is transplant affects more people than you would ever think.  I also like to show people, family members, close friends who may be facing this themselves that they do not have such a grim future.  It is hard work, but it has definitely been worth it!

I feel like when I was closed off about my condition I did not have support, besides that of my family.  Now that I am open, I have all this support from great friends who I have met through my journey.  I have not turned to a friend for every problem, but it is really nice to have someone that knows what you are going through.  I know so many people with transplants that get the surgery and then never look back, or look for support, I could not imagine going through this without the people I have met, it would feel so lonely.  

Back to School

Back to school: 2/1-20/2012 I finally re-entered school! The night before I went back, I was SO nervous! I have been in school for about 17 years and I have never been so nervous on my first day-and I was just going back to a junior college! Every day since the transplant I have been eager to get back to school, I have tried a few times but I was never ready, I think this time I am ready. It feels really good being back. It feels good to have a routine, be out with people, and have a purpose/plan/to be working towards a goal. I also feel like my understanding of concepts is better and I am “getting it”. This is really making me feel better. It amazes me how life changes. I remember to talking somebody who was a little mentally disabled and how they had to have their text books dictated from text to audio through a machine that did it for them. I (and other people at the time) thought this was so weird, how could they go to college. Now I go to get my DSS forms, (forms for disabled “services”, for me being able to take the test in a separate room where I can get up and leave, to be able to get water and go to the bathroom) they suggest that I go get this machine that dictates for you. I actually think it is a good idea. I know I need to practice reading and stuff, but when I'm tired and just to get more of the information, this would be really good to use Tomorrow will be the end of my second week and I am exhausted, but I am still able to keep up, now if I could just wake up on time and not sleep through class!