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Rivean’s health issues started as a teenager when his kidneys failed and he required extended hospitalization and dialysis. Although he was told he would be on dialysis for the rest of his life, he was able to make a full recover and live a normal, full life. He worked extensively in conservation for the Bahamas Environmental Research Center and Forfar field station on Andros Island, his home. Eventually he attended Hocking College in Ohio and returned home to work for the Bahamas National Trust and served as a local councilmen in Staniard Creek. His enthusiasm and passion for Andros are known to all, as is his famous smile!
In 2018, Rivean developed swelling, abdominal pain and difficulty breathing. After many hospital trips, he was eventually diagnosed with cardiomyopathy, congestive heart failure, and chronic kidney disease. Since that time his disease has progressed and he has encountered many other health issues along the way. He has had to give up many of the activities that he once enjoyed, most notably, spending time in the outdoors.
Despite this he has remained a dedicated husband and father to our four children: Kayla (18), Alyssa (17), Emma (12) and RJ (10). He shows up to orchestra concerts, football games, cheer events and school award ceremonies. He continued to work full time as a team leader in marine construction, and missed work only for medical appointments.
In July of this year Rivean came under the expert care of the Mayo Clinic in Jacksonville, 2 1/2 hours away from our home. We wanted a second opinion and when the team mentioned transplant, we were floored, but it soon became clear that he was being given another chance at a full life.
Things have progressed a lot quicker than we expected, and as of Tuesday, December 5th he was admitted to the Mayo for advanced heart and kidney failure with an ejection fraction of only 10-15%. He required insertion of the Impella pump, which is a temporary mechanical device that will help his heart until he has a match. On December 8th, he was officially listed on UNOS for heart transplant as a Status 2.
Rivean also requires a kidney, however his team has determined that it is too risky to attempt a dual heart-kidney transplant, so this will happen down the road.
With this campaign in his honor, we are hoping to help cover the expenses to come, including non-insured medical expenses, travel of the family to and from Jacksonville, and eventually housing for 3 months in the area as he will require therapy, close monitoring and weekly biopsies. I (Shannon) am planning to be there with him in the first months, which will exhaust my paid work leave during this time and we will be required to cover insurance premiums out of pocket.
His team has been clear that he might require dialysis following his transplant, and a potential kidney transplant a few months following may extend his time at Mayo.
Rivean has chosen to fundraise for Help Hope Live in part because Help Hope Live assures fiscal accountability of funds raised and tax deductibility for contributors. Contributors can be sure donations will be used to pay or reimburse medical and related expenses. To make a tax-deductible donation to this fundraising campaign, click on the Give button.
For more information, please contact Help Hope Live at 800.642.8399.
Thank you for your support!
-Shannon
Hi everyone, this is going to be a long one.I (Shannon) know its been quite awhile since our last update. February 2nd 2025 marker one year since Rivean's heart transplant, and it has been quite a year (and then some!)In December of 2024 it was discovered through a routine biopsy and testing that there were markers in his blood that indicated some rejection of his graft. Luckily, his team caught things very early, before there had been any significant damage to his donated heart tissue. He spent 2 weeks in the hospital at that time, receiving plasmapheresis and IV medication. Since then, he has been having regular heart biopsies and 2 days of IV treatment every month.We are lucky enough to have connected with Rivean's donor family. Once I get permission, I would love to dedicate a post to him and his incredible mother. Finally, after much debate, Rivean was given to go-ahead to have a kidney transplant. Although he is eligible and at the top of the list for a deceased donor, after much research we discovered that a much better match could be gotten from a living donor (especially due to his numerous antibodies and history of rejection). So, I (Shannon) proceeded with evaluation as a donor. We were very excited that I was approved to donate after a long process! It was determined however, that I was not an ideal match for him, so my donation would go to someone else and give him a voucher for his own kidney match. On April 22nd, I donated my left kidney at Mayo Clinic. We were able to stay at the Gabriel House again and go home after a week. Recovery was a humbling experience but gave me so much more appreciation for all Rivean has gone through.In the middle of all of this, our daughter Alyssa graduated from high school with honors on May 24th. Kayla completed her second year of college. Emma finished middle school, and RJ completed 5th grade. We activated his "voucher" June 6th. Rivean was told that it may take up to 6 months to find a match, due to his complicated case. But, by the end of the day, we had a MATCH! Transplant surgery is now scheduled for July 9th. He will need to remain in Jacksonville for one month, if all goes well. Rivean's sister Wendy is going to come and help out, which is great as I have exhausted all of my leave at work. We welcome lots of positive thoughts and prayers that his body accepts this kidney, and that his donor's surgery goes well.
Just before 3 p.m on Friday 2/2, we were told Rivean had a suitable match.
True to form he was wheeled down the hallway singing along to “Three Little Birds” and smiling , with lots of support from all of the nurses as he was rolled by.
9 pm he was in the operating room, and by 5:00 am on the 3rd, he had his brand new heart!
Rivean was taken of of the ventilator yesterday (2/3) around 5:00 pm. Lots of medication changes throughout the night, but he remained stable and they were able to manage his pain very well.
By this morning he was up into the chair and enjoyed his usual breakfast. Physical therapy came in and he was able to walk in the hallway. He did get somewhat lightheaded but he made 2 small laps which is pretty amazing considering he was just a little over 24 hours post-op.
They have been able to wean him off of the medication that was keeping his blood pressure stable and the pacer that was regulating his heart is now programmed to kick in only when it needs to.
His kidneys have taken a hit, but that was something that was expected- hoping they remain stable.
Lots of staff has come in to congratulate him- they have gotten to know him well over the last couple of months. We are blessed and grateful that he has such an amazing medical team.
Now , the real hard work begins. He will be in the hospital for a few weeks and then, he will be local so that he can continue to receive medical care and therapy, and during that time he must have a caregiver present 24/7. I hope to remain with him for the duration. Currently I am trying to secure lodging and hopefully we will have some good news on that front tomorrow.
We are so grateful to the donor, and keep their family and friends in our prayers.
Thank you all for the continuous outpouring of love and support.
Merry Christmas and Happy Holidays, everyone. We are so grateful for all of the love, prayers and support we have received in the last few weeks.
The kids, myself (Shannon) and my mom Cindy made the trek up to Jacksonville. Although the ICU has a 2 visitor limit the charge nurse allowed us to all visit on both Christmas Eve and Christmas. On Christmas morning Rivean was doing his laps in the hallway while smiling and singing Christmas carols. He opened gifts and we played family games. It was a bittersweet, since this is our first Christmas without my dad, Ed and we knew we’d have to head back.
He is feeling good at the moment and is not fluid overloaded, thanks to his expert team. It is important that he stays like this so he is in tip-top shape for his transplant.
On that note, we learned that there have been two offers for hearts that his team turned down, as they were not suitable. However, the doctors say this means that things are heading in the right direction, and hopefully he will soon get his perfect match.
The road ahead is both exciting and daunting. In the meantime we are grateful for our time together.
Love and light to all,
Shannon
12/17: Rivean is recovering nicely from his Impella insertion. He is off most pain meds and is having just a little bit of soreness in his right shoulder, the area where they inserted the device. He is walking laps around the ICU multiple times a day.
With the Impella, along with the IV medication that helps out with his heart function, he is feeling much better than when he was home. The downside is that he is hooked up to a large machine, so he needs help to get around. His right arm mobility is also limited.
Kayla, who just finished her first semester at college and I visited on Saturday and they enjoyed some much needed father-daughter time.
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You got this Rivean! Keep smiling that beautiful smile.
Janie Brooks
SFM is forever ❤️ Hoping for the best possible outcome for you, Shannon, and Rivean and your lovely family.
Jane O’Leary
Sorry to hear about these health issues. Wishing Rivean a speedy recovery!
Anonymous
Dear Rivean & family,
We're really sorry to hear about this turn of events and wish all y'all the best. Your sculpture looks great on our beach!
Sending our love, Luther & Bonnie Brown
Luther Brown
Rivean, I wish you the best during your treatments and recovery. I have fond memories of all of us on Andros Island. I know you will make it through. Happy Holidays & keep it Andros strong! -Kevin
Kevin Ratkus
Hang in there, Rivean! Your positive outlook is inspiring. All the good energy you have put forth into the world up until now is bound to come back to you, multiplied 1000 times, now that you need it.
Chris Bergh
Sending love to all. You’ve got this, Rivean
Lynne Neylan
My family met your sweet daughter Kayla in Ohio this summer. Sending strength and hope.
Kelly King
Praying for you and your family.
Chizelle Cargill
Our thoughts and prayers are with Rivean, Shannon and the kids. May God continue to give you strength throughout this journey.
The Machado family
Kerry Anne Machado
Make checks payable to:
Help Hope Live
Note in memo:
In honor of Rivean Riley
Mail to:
Help Hope Live
2 Radnor Corporate Center
Suite 100
100 Matsonford Road
Radnor, PA 19087
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