Wednesday, July 28, 2010

Joshland Question: The Transplantation Contemplation


This "Joshland Question" was asked anonymously:

Q: Are you on the transplant list?

As of right now, I am not. I'm at a place with my lungs where keeping up on my therapies and staying active will postpone the need to worry about that for a while...I hope. I think my other organs are doing well, but I guess I'll find out when they're not. :-)

Will I ever get a transplant of any kind? I don't really know the answer to that yet. It's a personal decision that my wife and I will make when that time comes. I have a few strong examples from my life that will weigh into our decision:

The Ultimate Sacrifice

My grandfather owned and worked in a sod field for the majority of his life. That meant long summer hours and farmer tans. Rainy days meant welcomed time off and a penny or two saved on the water bill. Best of all, the sounds of lawnmowers and the smell of fresh cut grass were the senses that provided a living for his family. But, the sod field also meant using chemicals to treat the grass. Back then, masks were not a required tool of the trade because no one was aware of the negative effects long-term exposure to chemicals could have on the body. Fast forward almost 4o years and my grandfather's liver went from the size of a football to the size of a fist. During my grandpa's final days, my father told me that he was offered a new liver and a second chance at life. He turned it down. He told them to give it to someone young with the rest of their life ahead of them. Grandpa lived a good life and wanted someone else to have the opportunity to do so too. That day, an organ donor saved the life of someone else and gave my grandpa one last moment of pride and charity which were the cornerstones of who he was.

The Will To Live

One of my greatest role models was my friend, Fr. Greg. He received a double lung and kidney transplant in June of 2003 after living with cystic fibrosis for 47 years. The operation was a success, the recovery was not. His body rejected his new organs and eventually took his life. Despite the outcome, I know from his own words and those of his family and friends that he never regretted his transplant experience. He did it because he had so much more to live for. He dedicated his life to serving others and spreading a message of acceptance and love regardless of people's spiritual beliefs, from missionary trips in third world countries to his own neighborhood which was riddled with violence and crime. In fact, he asked to be transferred to that community where he built up the hope and the faith in a place where there was very little. He eloquently provided the homily my sister's funeral mass. I went to him throughout my life when I was in need of advice or counseling. While we certainly didn't agree on everything, we always had respectful discussions about life. The lessons he taught me about being a good man and giving my time to others will stay with me until the day I die. My love and respect for him is immeasurable.

The Variables

A few years ago, I learned that my parents and Angela were considering placing her on the lung transplant list. There were a few problems with this. For one, it was the early 90's and lung transplants were not as common back then. For another, there were a lot of things going against Angie physically and - in a recent conversation with my mother - I was told that because of the rapid deterioration of her health, they (my parents and the doctors) were not sure her body would have even made it through the physical therapy process, much less the surgical procedure. That didn't stop Angie from trying her hardest just like always. Unfortunately, it was not to be because she fell ill and passed away on December 15, 1993. In my heart, I know that Angie rests peacefully and watches over everyone who needs her. That doesn't bring her back to me, but it sure does make it easier.

The Present Day Triumphs












But now...My oh my, how things have changed! One of the best things about starting my blog has been meeting other people (CF and non-CF) and following their individual stories. Reading the blogs of those who are going through various stages of the transplant process has been very helpful for my soul and my eternal, yet healthy, grieving for my sister. The donation process has improved by leaps and bounds and the sheer precision of matching an organ to a candidate is so reassuring to me and my possible future. It should also lessen any apprehensions that possible donors may have because they know their sacrifice is being handled with the utmost respect and dignity.

Over the past few months, some of my newly acquired friends experienced multiple "dry runs". That's where you receive a call for a possible donor match, only to have it fall through for various (and viable) reasons. Meanwhile, you have been in a hospital bed for hours waiting to go into the ER. You are taking what you hope are you final mental preparations before starting this new phase of your life, only to be disappointed at the last minute. Ugh. I can't imagine the emotional roller coaster. It must be both frustrating and reassuring for the recipient because while they want their new lungs, they also want it them to be as perfect as possible. Yet, here they are for the world to see - successfully transplanted for months or years - as living examples that this process does work and is worth the time to check that box on your driver's license or fill out that organ donor form.

Even Angie (who had other things to worry about) signed up to be an organ donor. She was pretty upset when the doctors told her that her medically abused organs were not donation material. So she gave the one thing she could: her corneas. It makes me curiously happy to know that somewhere on this earth there is a soul that can look at the world through Angela's eyes. Maybe I've looked right at that person and never knew it. Ahhh...what a nice thought.

The Decision

When I look back at what my grandfather did, I'd like to think there is a part of me that would be that strong. It makes me so proud to be his grandson. I'm also grateful for the example Fr. Greg set for me. He showed that if you believe in your heart that you have more to do with your life, then you have to fight for that second chance and do everything you can to make it so. That's what Angie was trying so hard to do. I miss them all so much.

It's because of these instances that I know when the time comes to make this decision, my wife and I will make it in the same way we've made every other one: with love and careful contemplation. I've had so many amazing experiences in my life. I've achieved more than most ever believed I would. I've been in love, gotten married, earned a college degree, worked full time for many years, done a significant amount of traveling, and so much more. Even on the days when I bitch, complain, or get angry, I've felt like every day has been a gift. Unfortunately, I've seen first hand that not everyone is guaranteed 30 plus years. Still...I'm a stubborn young man with lots of reasons to live and I'm not planning on going anywhere anytime soon. I guess there is nothing left to do but live and let the cards fall where they may, just like I always have.

Peaceful and Life Giving Things,

Josh

Joshland Notes:

Here are a few of my transplant related blogging buddies that said I could link to their sites so that my readers can learn more about their story and the transplant process:

Heidi - A double lung transplant recipient who is about as sweet as you can get. When I asked if I could link to her blog, Heidi coincidentally, was in the middle of writing a post about her transplant story. Go check it out at the link below. Hugs to the whole fam, Heidi!


http://heidimattandroxy.blogspot.com/2010/07/why-i-chose-transplant.html

Justine - A new friend who is currently on the transplant waiting list. I've really enjoyed my time chatting with her. She's bright, awesome, and has keen and insightful observations about life. She's also kinda new to the blogging world. Take a peek at her blog and follow her story.
Go Teeny!

http://justinekomin.blogspot.com/

Jess - She's one of the first "transplanty" people I found and she happened to be in middle of of her journey, hence the blog title - Jess's Journey. She just received her new lungs in April of this year and is now on the second half of her journey - post transplantation. Visit her blog that is honest, sweet, funny, and real. Congrats, Jess!


http://jesscfjourney.blogspot.com/


Here are some reputable links provided by my transplant buddies about the myths of organ donation and where you can sign up to be an organ donor:


Organ Donation: Don't Let These Myths Confuse You

AND...


http://www.donatelife.net/

I'm a firm believer in organ donation. Anything that will give people the gift of time and a fully functioning part of their body they've never had before is a noble thing. What if your last act on earth was to extend the life of a complete stranger? You can do just that by becoming an organ donor! Reject the myths, learn the truth, recycle yourself!

This post is dedicated to Jess, Heidi, Christy, Mike, Nina, Leah, Piper, Jason, Justine, the thousands who have received the gift of life, and the thousands more who are patiently waiting while working hard to live.

A special shout out to
"Cystic Gal" who, by the time you read this, is now post-transplant! Hooray, CG!

6 comments:

  1. I will forever consider it a privilege to be chosen as mother to Angie and Josh. My darling daughter and my sweet son, you fill my heart with joy. xoxox

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  2. Great post, Josh!! I've always wondered what your thoughts on transplant were;)

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  3. Wonderful post, Josh! You are so sweet! I appreciate your courage to write about such hard things! You provide inspiration to many and make people stop and think...which is hard to do!

    ReplyDelete
  4. Another great post. When you write about your sister it takes my breath away. Let's hope for new drugs so you never have to worry about a transplant.

    Best to you.

    ReplyDelete
  5. These topics are so emotionally driven, I'm glad you are willing to share with the community. Thank you.

    Colleen

    ReplyDelete

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