General
The Power and Influence of the Patient's Voice and Sharing Your Story
When my son was 5 months old, we were told he needed a liver and kidney transplant. He would need to have hemodialysis 6 days a week until he was stable and big enough to receive this transplant. We knew there would be challenges with finding a donor to match his specific needs and "waiting" for someone to die to save our child was not something we wanted to do. We decided to use our story and the time we had to go public and document our journey through photos, videos and interviews. Our story got the attention of the local media and some of our stories went global.
Talking about personal medical struggles was not easy, but we wanted people to see the face of organ donation and who recipients were. We wanted to educate people on what organ donation was all about, but most importantly, we wanted to take away the stigma of talking about it. We wanted to honor and celebrate those who were donors and show our gratitude for everyone involved in the process. Sharing our story allowed us to "do something" and kept us focused on things that mattered. It was an incredible feeling when people would say they are now a registered donor because they were moved by our story.
I wanted to start a discussion on this website to share some of my family's personal journey with two of our children, and the adopted family we have and how their stories touched others. I want to invite all of you reading this to share your stories, through comments below or include attachments and show the power in the patient voice and how the media can help spread facts and true stories, connecting people all over the world.
Every story is important. Each voice holds power. I feel it is our wonderful obligation to share the experiences we have been through and help others whenever we can.
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This was the first short video documentary we did to show a day in the life of our family while our son was on hemodialysis waiting for a liver and kidney transplant. It's the video that got the attention of our local media who in turn started following us doing several updates a year.
This is part of the series of stories our local media did. It shows ups and downs of our life. One of the difficult days we had was when we were offered organs and were about to go to the Operating Room when they said it wasn't going to happen and we couldn't get the transplant at that time. I was ugly crying and angry and disappointed, but it was important for people to see the struggles we go through and how hard it is to wait.
This was the second part of the media coverage which covers the part when our son received his transplant. ***There are video clips from the operating room showing part of the surgery***
After receiving a liver and kidney transplant and enduring a very difficult recovery, we were able to go home after 73 days. Shortly after the transplant, Matthew came down with a virus that made breathing difficult. One month after transplant he had to be opened up again for a major surgery. During recovery of that surgery, he suffered a stroke and it temporarily paralyzed his right arm. He overcame so much and was finally able to go home.
This was the day we got to meet our sons donor's mom
Our first Christmas at home.
Our donor's family joined us in making this special video that Donate Life uses to educate people and share in the wonderful story of how families are connected through donation. (Feel free to share it)
(my son needed another kidney and my oldest child went into kidney failure in 2020 and needed a kidney)
while my children were on dialysis, we met a family from Nepal. The couple had just gotten married and the husband went into kidney failure. He was diagnosed with the same rare disease as my children. We connected and talked everyday through social media. When we discovered he couldn’t get care in Nepal, we brought him to live with us. People magazine did this story on us.
the Tamron Hall show did this story a few weeks after we were in People Magazine
just weeks after being on Tamron Hall show our children received their transplants just 24 hours apart from each other Tamron had us back on her show as a follow up
Kouimet Family, your journey is so inspirational to me. I just know your story is going to help so many folks. Thanks for sharing. I am a LTP recipient going on 2.5yrs.💚💚
Transplant Patient
Dear @Kouimet - this is both inspirational and educational - and most of all I am so happy you shared your story with us! It truly shows the power of the patient voice and the need for such. Bravo and good luck in your continued health journey as a family. Hope to connect with you live at some point (karin@lyfebulb.com)
This is a video that DonateLife made that my oldest child (Carswell) was part of. It was filmed the year before Carswell received the transplant.
This was one of the news coverage of our two kids getting the transplants less than 24 hours apart. This footage was shared nationally and was on CNN.
Another news story about the transplant.
This was a video that the American Kidney Fund made last year to share the power of community. They highlighted 4 families that have been touched with kidney failure and how COMMUNITY helps us all on our journey. My family is at the 4:30 mark in the video.
I hope everyone can find their community to help them. TransplantLyfe is a great community!
This was a video we did with American Red Cross. Our family hosts 3-4 blood drives each year. We were asked to participate in a "commercial" where first time blood donors were asked about blood donation. This was filmed in 2019. My son Matthew and I were able to be part of this event where donors were able to meet people who needed blood transfusions.
Transplant Patient
Simply amazing, @Kouimet !
Thank you so much for sharing about this incredible journey that all of you went through (are still in).
The power of sharing a story is truly amazing. You guys did all the right things. Please continue sharing to advocate, inspire, educate and raise awareness.
We're all grateful to know that your children were blessed with their Gifts of life. May they always be blessed with good health and happiness.
Of course, may the amazing Donor Families be blessed too & may they be comforted knowing that their loved ones were able to save lives.
I'm an extremely lucky, eternally grateful & completed blessed heart recipient. I recently celebrated my 8th heartiversary (April 20th). I too share about my miracle any chance and I intend on doing so until my donor's heart stops ticking inside of me. The transplant journey will continue because transplantation is a treatment & not a fix.
I truly believe that:
Organ Donation
+
Transplantation
=
Miracles
💯
Take care & best wishes.
Sdey, That was BEAUTIFULLY said. Thank you.
Happy Happy ❤️❤️versary to you. Stay healthy. Living our best lives yet.😊💙💚