Mar
14
2011

Organ Donation – Five Years Ago Today

Become An Organ Donor - Find Your State

It was Spring Break, 2006 – my second Spring Break of college. We laid on the beach in Rocky Point, Mexico all morning and, sometime around noon, made our way back inside for lunch and a quick nap. 

I had strict instructions from my mom not to call or text anyone while I was out of the country and not to answer any calls if someone tried to get ahold of me. So, like a good little college student who is still lucky enough to have a mom who pays their cellphone bill, my phone had been off the entire trip. Before I laid down, for a reason I cannot explain, I decided to turn it back on and keep it by me. 


When it rang I was asleep and I answered it without thinking. 


“Randy got the call. They’ve already done preliminary matching and everything looks good. They are about to take him to surgery.”


For years doctors diagnosed him with everything from depression to COPD. It wasn’t until 2003 that someone finally discovered that the real cause of my Step Dad’s exhaustion, fatigue and cough was an extremely rare form of Primary Pulmonary Hypertension called
Pulmonary Veno-Occlusive Disease. While we were ecstatic to finally have a concrete diagnosis, it was devastating to read things like “no cure” and “survival may be months to a few years in adults.” 

So, standing on the beach in Mexico, trying to hide the fact that I was bawling my eyes out, I tearfully told my Step-Dad to be strong and that I loved him. I hung up the phone and prayed for the donor family, knowing that somewhere not too far from Randy’s pre-op room a family had just had their world rocked by the loss of someone they loved. 

 I would later meet an amazing family and
find out just how massive that loss truly was.


Timeline of Transplant

January 30, 2006: First Call. Match not sufficient – transplant called off.

March 13:
Step-dad takes an Ambien to help him sleep.


March 14, 7:30am:
Step-dad answers the phone, hears “you have lungs waiting on you, be at the hospital in the next hour” and does what any normal person waiting on a life-saving organ transplant would do – HANGS UP THE PHONE AND GOES BACK TO SLEEP. By the Grace of God, my mom was up getting ready for work and was able to ask what the call was about.


March 14:
Match Confirmed. Surgery is a go.
March 14: Step-dad blessed with gift of two new lungs. 

March 15: Very dangerous reperfusion injury discovered. 
April 4: Extubated (off ventilator/life-support) 20 days post-transplant
April 7: Moved to transplant floor after 23 ICU days.
April 11: Liquid diet allowed. First drink in 27 days.
April 14: Some eating allowed. First food in 1 month.
April 20: DISCHARGED! 29 lbs lost since transplant.
May 1: Coughing up blood, short of breath.
May 2: Readmitted. 
May 4: Bronchioplasty.
May 5: Back to the ICU. Mild acute rejection, pneumonia, strictures, low 02 sats.
May 6: Out of ICU. Back to transplant floor. 
May 9: Open lung biopsy. Back to ICU on ventilator.
May 14: Finally off ventilator again. 
May 16: Out of ICU. Back to transplant floor.
May 20: Chest tubes out.
May 21: Pneumonia was from aspiration. Nothing by mouth for 6 more weeks.
May 23: J-Tube Placed
May 26: HOME AGAIN! 49lbs lost since transplant.
June 1: Readmitted, MRSA Pneumonia in right lower lobe.
June 2: Discharged with PICC line.

Sometime in July he got his J-Tube out and was allowed to start eating “real” food again. Note that this was almost 4 months with nothing to eat or drink, there was only about a week long period where he was out of the hospital and able to eat and drink before we discovered he was aspirating. 


There have been ups and downs, including a year of all holidays & birthdays being spent in hospitals and more days being in-patient than not, but he has come so far. The statistics for five year lung transplant survival are mediocre, at best, and he is thriving today.


I wanted to write this blog to express why I am an organ donor and why I think it’s important for everyone to be informed on this issue. 



We were blessed. 

In March of 2007 we had the great honor of meeting the family of our organ donor. He was 20, less than one year older than I was at the time, and his name was Craig. He was taken far too soon from a family who loved him dearly. They made the choice, in their time of horrible tragedy and loss, to see through their pain and help others. Because of Craig and his family – m
y step-dad attended my wedding in 2009, he saw his only biological daughter turn 16 and, God-willing, he will see her graduate high school next May.

Everyone doesn’t get those chances – almost 20 people die every single day waiting on a organ transplants that can’t take place due to the shortage of donations. That person could be your mom, your sister, your husband or, God-forbid, your child. 

You hear it everywhere, “make sure you tell your family,” and I cannot express how true this holds. No mother, in her darkest hour, should have to make the heart-wrenching decision that Craig’s mom so gracefully made. No wife, when she wants nothing more than to turn back the clock just a couple hours, should have to choose to give away a piece of their husband. It’s hard and it’s unnecessary, because we have the choice right now, today, to take that decision into our own hands and spare our loved ones.  

Sign up. Tell your friends and family. Get it on your driver’s license. Carry proof on you at all times. It’s so important…not just because it maintains your final wishes, but because it spares your family that incredibly difficult decision. It’s not just for all those people waiting for organs to save their life, it’s for all the people in your life that you love.

And if you sign up, please tell me – I would love to know. What a tribute it would be to the honor of a precious life lost.  

Become A Donor - Find Your State

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9 Comments + Add Comment

  • Thanks for posting this! I'm glad your step-dad came out of that long struggle healthy and happy.

    I registered to be an organ donor in California a couple years back. I'm also just registered as a bone marrow donor this past weekend!

    I have to admit, being an organ and bone marrow donor was a little scary and I did have my doubts…I did take some time to think about it too, but in the end, I decided that a) I wouldn't need my organs if it ever came to that and b) getting poked with a scary needle to the bone is worth it if it helps someone and provided I trust the medical staff.

  • Danielle, I wish I had something profound to say but I'm at a loss for words. I've been crying since I started reading. What a beautiful thing! I am organ donor – signed up July 21, 1997 at the ripe old age of 15.

    I'm glad you have your stepdad, ad I am so thankful for Craig's generous family.

  • Thank you for sharing this. Very important stuff for all of us to know. My wife and I have made it clear to both our extended families that all our organs must go up for donation the minute we move on to the next big thing. Thanks again.

  • Thank you three for commenting. It always makes me so happy to know that people are organ donors. You know, I don't think I'm actually registered as a bone marrow donor. Thanks for bringing that to my attention, Mingle.

    I've always been a little scared to register for bone marrow donation. I guess most people have more trouble with registering as an organ donor, but since it affected my life so directly it was a no brainer for me.

    You have encouraged me to sign up, Mingle. The way you put that reminded me that it helps people just as much as post-mortem donation and it's silly for me to avoid that out of fear. Someone's life could be changed. I have no idea why I haven't given that more thought in the past, but our school is having a bone marrow drive this week and I'm going to make sure I get by there and sign up. Thank you.

    Nothing profound needs to be said. :) I'm glad you enjoyed our story. I am Facebook friends with Craig's sister. She recently had a baby (well, he's like 4 now I think) and his middle name is Craig. :) They love and miss him very much, but are so proud of his ability to help others. Someday I'll write about meeting their family and the others who received donations from him. Very heart-touching stories.

  • Great post. I've been an organ donor since I was 16- my BFF in high school's step dad has had 2 kidney transplants, one our freshman year of hs and one last summer because he has polycystic kidney disease. Seeing the impact it had on her family made me feel like it's the least I can do- there are so many families whose loved ones die waiting for organs.
    I'm really glad everything worked out for your step dad.

  • Random but I'm in the bone marrow registry too. They only took my blood though. Didn't actually take marrow to register.

  • Absolutely beautiful. Love the timeline too.. what a crazy few months! So happy that he is doing well :)

    I still haven't written my donor family back. So many emotions tied up there. I love the relationship you have with your donor family.. maybe one day I'll be there :)

  • Thanks for writing about this sweetie. Its such a big part of our lives and so hard for people to begin to understand the depth of it all. You did an EXCELLENT job with the timeline…I wish I'd kept up with the journal throughout the entire 1st 2 years. Your tribute to Craig and his family brought tears to my eyes. I think of them so often. I'm so thankful for how well Randy is doing and I know his heart is full of gratitude for the blessings our family received. It blesses me to read what you have written. I love you.
    Mom

  • Wow, what an amazing story. I was excited to get my driver's license just so I could get on the registry list. (And of course freedom!) My sister passed away a few years ago, and she was a donor, but the cops didn't check her registry status so it was too late for her to be a donor. (I think they took her cornea, but it was too damaged) It breaks my heart to know how many people are needing organ transplants, and that people don't get on the list. I'm glad your step-dad received that gift from Craig and his family.

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About The Author

I’m a Medical Student (that means I'm in school to become a doctor). My life story can be viewed here. I started this blog in hopes of landing a role in a Lifetime movie so I could quit school and move to Hollywood, so if you wouldn't take medical advice from Angelina Jolie, you shouldn't take it from me. I may not even be a real person. In fact I'm probably a spambot. Or a 15 yo boy blogging from a dingy basement. If you're really interested you can read more about me here. If you have any questions or want to guest post contact me.

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