Wednesday, April 18, 2012

Heart Transplantation Compelling Advocacy

This weekend I participated in Relay For Life to help fund raise and support cancer. It was an overnight fundraiser and throughout the entire night someone must be walking around to show 'cancer never rests'. The weather was perfect and many of my friends were there. In the end I managed to pull an all nighter and catch bronchitis. Missing three days of school the week three major projects are due, plus homework? I predict my mind going insane!! I was prescribed an inhaler by my pediatrician and I have a Chest X-Ray scheduled tomorrow morning just for precautions...

Thanks immune system. 

Anyways, about a week ago, a girl named Jennifer emailed me. This girl, who co-wink-a-dinkily is the same age, same grade, and has the same heart condition as me, stumbled upon my blog. She will soon be listed for a Heart Transplant due to Cardiomyopathy at UCLA Medical Center, just like me! Not only will she be transplanted at the same facility I received my first Heart Transplant, but her transplant cardiologist used to be mine as well. I'm proud to say I'm officially what you call a, "Transplant Buddy".

My blog showed her; people, particularly teenagers, with heart transplants are not all restricted. Our lives may involve medications, possible rejection, and long hospital visits, but we know how to appreciate and live our lives to the fullest. We go to school, participate in sports, apply for jobs, and go out with friends just like everyone else. By simply documenting my life experiences in a positive way, gave this girl hope in a way. It showed her; a heart transplant isn't a burden, but a gift. And it showed me; continue blogging because you never know who is impacted.

If she asked anyone for advice, besides her cardiologist, I would be the perfect person with heart transplant wisdom. Not to sound presumptuous, but I have gone through the experience... twice.

I've seemed to narrow my heart transplant knowledge to five crucial tips of compelling advocacy:

Positive Thinking: If you have the wrong mental attitude than I believe you'll be waiting longer for the call. After waiting for what seems like forever, it is very likely to become depressed. My twelve year old self was on the verge of becoming depressed because I was tucked away in the Ronald McDonald House all the time. Don't repeat what I did... which steers me to my next recommendation.

Entertain The Mind: This has to be the most important advice I could give to someone waiting for a transplant. It's obvious you will be waiting for some time... Who knows how long you'll be waiting for the call, but you already fathom the three month rejection period will be three months of isolation. Don't make this experience so boring and... dejecting. You will have oodles of downtime so do as much as your cardiologist will let you!

- Take up new hobbies
- Learn an instrument
- Go shopping
- Sports? Depends on your heart health on whether you can or not.
- Volunteer
- Go outside
- Join a gym
- Eat whenever you're bored
- Chillax with friends

Blogging or Vlogging: Starting a blog or begin vlogging on Youtube would be something I wish I did while waiting Pre and Post Transplant. It's a great way to express yourself and it occupies your mind! Gotta admit, looking back at the blog posts or vlog entries would be interesting to relive compared to your life long after transplant.

Anxiety: Anyone would be scared about the actual operation. If you're not scared of cheating death than you're insane! Asking the transplant surgeons about the operation would probably scare you more...

It's not as scary as you think...

The experience is like an unimaginative painter... A colossus of different colors to paint with but still ending with a blank sheet of paper. Every time I try to recap myself about transplant my mind just draws a blank. I literally don't remember anything from meeting my anesthesiologist to three days after the operation. So it's easy to say you will be very comfortable going in and out of the operating room until you regain consciousness. After the operation, from what I can remember, was super uncomfortable!

I didn't want to move around in bed to stretch my diaphragm the slightest bit. Yet, I still managed to walk around the whole ICU the next day.

I had an ivy in my neck which contributed to my raspy voice, which made it hard to inquire water or chapstick. Luckily, I could still write out my demands...

I never had an appetite unless water and saltine crackers were the only things on the menu. Redeeming my appetite probably took the longest, but I got to the point where I was 89lbs and eating a cheeseburger a day.

Attend Camp Del Corazon: If you think you're alone with taking anti-rejection med's, dealing with annual biopsy's, and living with a scar down your chest than you must attend Camp Del Corazon because it shows you otherwise. Camp Del Corazon is an annual summer camp only for kids(age ranging from 7 - 17) with heart defects. Not only is CDC the BEST experience ever but it also gives you the opportunity to meet plenty of other kids, around the same age, with heart problems. After being apart of this amazing community, you realize a heart transplant (CHD in general) is nothing to be ashamed of, nor a burden, but an amazing gift! In fact, I rather have heart problems just so I can attend this camp! If you're not between the ages of 7 - 17 than you could always volunteer as a counselor!

This is just the beginning of my need-to-know list for awaiting heart transplant recipients. I was able to sum up my guidance, but there is still oodles I could talk about! But for now, I wish Jennifer the best along with any other awaiting heart transplant recipients!

Harry Potter marathon tonight...

My personal Cloud Nine!


  1. Hey Shelby,

    If your transplant buddy ever needs someone to talk to, let her know that I am here too. If she'd like another blog to read about living with a heart defect and needing a transplant, she can follow my blog as well!

    And I agree, Camp helps so many young CHD Patients. If she however doesn't live in Arizona or California, I'm sure she can find other heart camps around the US that are closer to her home!


  2. Hey Becca! I actually already gave her a link to your blog:) Your the only other blogger I know with CHD, who goes to camp and has a great attitude!

    And she actually lives in California! So CDC is definitely an option for her. I hope her parents let her go though, they don't realize how much camp can impact her!

    Love, Shelby