My Organ Donor – Telling Our Story
This is my 143rd attempt at writing about my organ donor. Now, I’ve got a second sentence in here. I think it’s going to happen…… because – I’ve received a letter from his aunt. My transplant social worker called to ask if I wanted a letter from my donor’s family. Of course! I was overjoyed – and cried all day. Then I called my family. One phone call at a time, we cried.
That crying thing, along with the joy – it’s something you learn to live with. I’ll go so far as to say that I embrace it. At first, I didn’t want a liver transplant. At the end of my days, someone passed away. After the 3rd round of tumor shrinking, our lives joined. He slipped into heaven and his body saved people from dying. That’s emotional stuff, but I’m a huge fan of feelings.
Emotions are a vital part of living: It’s the heartfelt piece of us.
His aunt was heartfelt in her description of a loving family who lost their sweet teenage boy. This is where it gets hard to keep typing because I’m a mom. IDK if I could read these words if it were my daughter we were talking about. His mom was not ready to write. Ok, I’m going to quit writing now too.
So, a 30 minute break and a bowl of watermelon later, I’m back. It’s strong stuff, loving someone. That’s what this is about, you know. I’m just figuring it out. I’ve known all along how grateful I was for my donor. He’s part of me. I’ve got his DNA. He’s the reason I can walk and talk. His liver – I still think of it as his – is filtering my blood right now. I have him nestled under my heart. I pat him and thank him all the time. All the time.
We’re not aware of our heart beating, our liver and kidney filtering, or our lungs breathing until we hear that diagnosis. When we wake up after a transplant, we’re aware of that organ. We love it, and we love our donor.
So especially when I eat, or go for a walk, or breathe… I think about my organ donor.
I am aware that others’ think of him too. Grandpa proudly tells stories, and the little ones ask about him. Brothers think to tell him this or that…… and then remember. Mom keeps going, but inside she feels a sunken hearted sadness. They’ve mentally rehashed and rehearsed the story about that day, and the days leading up to it. And the blurry days that followed. Each day moved into the next. They got through the firsts: Fourth of July, Halloween, Thanksgiving, Christmas, and Birthday.
I marked every anniversary and holiday with them. I’m freshly familiar with grief since I just lost my sis. Maybe now is the perfect time to put this piece on. I’ve wanted to protect them, and myself, from all of this emotion.
Bless their hearts, they got ME as a recipient! They can see the whole timeline from my perspective. I sincerely hope that makes it easier for them. I want to cushion the world for his little family. Perhaps some of that protectiveness is him, in me, looking out for them. I like to think so. Heaven is closer than you think.
It helps me to tell my story here on the site. This story is one that is shared with another person: My sweet donor. We finally wrote it, Bud.
I like to think he gets a kick out of me. Xo Karen
18 thoughts on “My Organ Donor”
That was beautiful Karen. Brought a tear to my eyes too. I am inspired by your story. And thank you for this site. When I was in treatment for hep C your site was a calm and positive place to share about it.
Bless you for your awesome encouragement. It was pretty hard to write. I’m so so glad that anything I have to say encouraged you. Gosh. Let me know if I can do anything at all.
xo Karen
I think I put the wrong email there I’ll try my other and maybe my picture will come up 🙂 Anyway, yes it was nice to have this site… I was on Sovaldi and interferon starting the first of Jan 2014.
Of course they came out with Harvoni and other things the next year but I didn’t want to wait as the Sovaldi was available at that time and I had level 3 fibrosis.
Well the good news is that very quickly my firosis started improving and in April my fibroscan was at 3.7 which is very low. It had been at 11 when I statrted treatment.
I’ve agreed to be in a study and I’m checked every six months I should be having tests in a few weeks.
Dave
Dave,
This is totally great news. Yeah.. the picture is good. haha. But the real news is that your fibroscan went down. My big regret was that my disease was so advanced. I’ve always read about the fibrosis reversal and have seen a lot of good news regarding healing.
You’re fortunate to have gotten into a study! Please keep me posted. It would be good to have an actual story that I could follow up with on a blog. Hang on those lab and test results for comparison.
You’re awesome,
xo Karen
Karen,
The way you captured the beautiful gift that gave you life again has so much color and is sell well worded that the family itself must be proud to in a way, have you in there family. I know you and I have had some discussions on me writing to my donator’s family and I have already started this process. Once again, I congratulate you just for being who you are as you movitate all that come in contact with you. Your strength, wisdom and ability to connect and motovate others is second to none. You were the Angel I needed to gain strength and go through what I am now going experiencing. Been home today now for 3 days with my first touch base and SOPA meeting tomorrow am. I have named my new liver “mulligan” and even when in insane pain, the smile I put on my face and the tears of joy, thinking of my new Birthday is mind blowing. In the short period of time since receiving my liver, no current pain is worse than that I was dealing with prior to my transplant.
Again, it’s about paths and how they cross. It’s about education that we learn but also pass along. Every rainy day produces a rainbow of vibrant colors. This is another milestone Karen and I congratulate you and the family of your donor. They couldn’t have helped a better person, and I can assure you the smiles on their faces when reading your letters etc. not only bring back great memories but new ones on the horizon.
XOXO – Chip Williams
Aw Chip,
You’re an amazing guy and recovering so quick that it is nothing short of miraculous. But then, we’re all miracles. I like the name Mulligan and know that you’re extremely grateful too. There are really no words to describe how we feel about this 2nd chance at life. It IS mind blowing joy! I think that our lives will be lived with renewed vitality as a result of our journey.
It’s been great to watch your progress. My long time readers know that some of our crew has gotten really really sick, and stayed that way for years. To have gotten such a high MELD and finally transplant is a wonderful thing to watch. I always encourage every single reader to keep up the struggle. You’re doing the same thing right now. We embrace new philosophies and go through a bit of a values shift after a near miss death experience.
I hope hope that my donors family feels the strong love… and that their proud and comforted in great measure.
Please stay in touch. I’m going to the post today and mailing you some protein.
xo Karen
I guess I needed a few tears…. God bless that donor and give his family peace and comfort and know someday they will be reunited. God is good that way.
Joel,
You know I believe that too. His family have a strong faith also and it is helping them through this time. You know I’m a huge advocate of not holding it all in. So – yes – you needed a few tears. It’s healing. Thank you for asking God’s blessing on my donor family. I saw your email and am avoiding my crowded inbox tonight. AHHHH!
Much Love,
Karen
Thankyou for your beautiful writing and your beautiful heart,from one of your many friends in England.xxx
Victoria,
You’re always so generous with your lovely words. And it feels good to hear that your heart connects with mine. Sometimes the story is funny, other times it is intimate, or both! I sense that you always hear my intention and that means so much. I bet we would hit it off quickly. Come across the pond sometime. We drink our tea iced her, but I have a microwave. It would be an awesome retreat.
Hands across the water. xo Karen
Karen Thank you for reaching out to Shelly and the Family. We all needed to hear from you You are now part of our Family. We welcome you with open arms. God Bless You and Your Family. Hope to meet you some day.
Gail,
You can see how far behind I am. It was great of you to reach out on Facebook. So glad to hear a voice that knew my Gavin. It’s hard to explain how close he is in my heart. Your stories are a comfort to his mama now too. Thank God for your sweet heart. I hope to meet you someday!
xoxo Karen
Karen, I love this, it is wonderful, so sad, so uplifting, I am in tears reading this.
Love Dee
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Thank you, Karen. Tears of gratitude. I have been down a similar path. After two liver transplants I am now 7 years out, cured from HepC for nearly 2. I hope someday to hear from my donor’s family, but understand too, if it is too hard. No words can describe this depth of gratitude and love, but you come very close. Much love and continued good health and joy in life to you.
Hi girl!
Yes, gratitude is the major thing we experience isn’t it? I’m so happy to hear you are 2 years out! That is when medicines can be reduced I think. I’m totally happy for you to have beat the virus too. What a miracle life is! We’ve go SO much to be thankful for.
Only a person who has been there can understand the relationship we have with our donor. To say that it is a gift doesn’t even begin to convey the depth of love and gratitude we feel. I have to admit that I’m relieved to know who my donor is. If I had gone without hearing from them, I would have peace. It means so much to me to know about Gavin. I hope to meet his family over the holidays. It may be too soon. Like you, I understand how hard it is for them.
Of course we all love and pray for each other’s donor family. It’s so good to be united with others who totally understand what we’re living.
xoxo Karen
Oh my gosh, your story is fascinating, two transplants? I think telling your story would help others. Only if you feel up to it. Karen could share it here, along with hers. I think it would be very uplifting to others who read. Thank you so much, you are a sweetheart to share! Dee
Wow..as i sat hear and read your story…it so reminded me of my own story..I am 3 years post liver, and my donor was 20 years of age. I have written to his family in 2014 and never heard back but am going to try reaching out to them again before the year ends…I too was at end stage along with the Hep C virus. If it was not for my donor i would not be here..I want to thank my donor’s family. I know how it feels to lose a loved one. I just recently lost my mom on Oct. 209, 2016 and i am devasted.. I thank God each and every day for my donor.
This makes me cry… for you and all of the change you’ve going through. Also because I was buried under a computer glitch and so many comments got ignored.
I pray that your email address is the same and hope to hear back from you.
xo Karen
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