Brian’s Story

Site created on December 1, 2018


December 4, 2018: We have just created a new Caring Bridge site to keep family and friends updated on Brian's most recent medical challenges.  As many of you know, Brian has a long history of overcoming complex, life-threatening circumstances. He has lived through a heart transplant, multiple cancers, a stem cell transplant, and over the past 3 to 4 years has been living with end-stage kidney disease. Having been denied for kidney transplant in the Miami area, he was preparing for dialysis while approaching a late November evaluation for transplant at University of Florida Health System (Shands Hospital in Gainesville, FL) when his heart, lungs, and kidneys could no longer bear the burden of the wait.  In early November, he had to be rushed by EMS overnight to a trauma center where he spent a week in the hospital recovering heart and lung function, while having a tunnel catheter placed and beginning dialysis in hospital.  With a weak heart (in congestive heart failure), he was discharged from the hospital but within a week we were back at another ED due to complications with dialysis.  Two days before Thanksgiving, he then had a major crash during dialysis and was again rushed by EMS and this time had to be intubated and put on a ventilator.  Again his lungs were full of fluid, only worse than two weeks prior, and his heart had fluid around it and was struggling to function. He was diagnosed with acute rejection of his donor heart (after 28 years of a strong, transplanted heart) but his biopsies and all initial tests were ultimately negative for rejection. After a week in CCU and another few days on a telemetry unit, he has been discharged again and is having dialysis in an outpatient setting. His heart is still weak and the medical teams are trying to determine a cause and solution. 
We likely have a long road ahead. Our hope at this time is that the remaining tests related to heart rejection will come back negative and most importantly that his heart will recover function over the next few weeks and months. Should that happen, he could become a candidate for kidney transplant, most likely at UF/Shands, where he has doctors from previous treatments advocating for his care. We are also trying to stay very much on top of the current dialysis treatments so as to minimize any further complications such as those we have experienced this last month. All of this history and summary is much simplified, and there are innumerable complicating factors at every turn. What we need as a family at this time are the following: the wisdom and ability to make difficult medical decisions with a good team of caregivers; mental and physical strength to get through challenging periods and move toward longer term goals; and peace that we are making good decisions and can rest in our faith that God is with us. We appreciate all the helping hands of friends, family, colleagues and neighbors that have been supporting us these last few weeks, and all those who are sending love, prayers, and words of encouragement our way. (To be notified of updates, click on the "follow" button and you will receive automatic e-mail notifications with a link.)

Newest Update

August 29, 2020

Journal entry by Jenny Snead Williams —

Today we celebrated Brian's 30th anniversary of his heart transplant! At 15 years old, after 4 months on an artificial heart and having made history as the first VAD patient in the world to be discharged from the hospital, Brian received the gift of life from an anonymous donor. While someone grieves a loss on this day, we give thanks for the most generous gift of life. 
These 30 years have been full of challenges: multiple cancers, stem cell transplant, kidney failure, and more near-death experiences than one should ever face, including 2 weeks on a ventilator just this spring, but Brian keeps on fighting with incredible spirit, faith, and will. And these years have been filled with joys, miracles, and blessings as well. We are so grateful to all those who have supported and uplifted us along the way. Here's to the next 30 years (hopefully starting with a kidney transplant in the near future)!

Read More of the journal titled "August 29, 2020"
Patients and caregivers love hearing from you; add a comment to show your support.
Help Brian Stay Connected to Family and Friends

A $25 donation to CaringBridge powers a site like Brian's for two weeks. Will you make a gift to help ensure that this site stays online for them and for you?

Leave a comment of support for Brian

Did you know? A quick comment, no matter the situation (positive or negative), can boost morale by 28.2%.

Comments Hide comments

Load more comments
Read More Journal Entries

Show Your Support

See the Ways to Help page to get even more involved.

Personal Fundraiser
Support Links
Helpful Requests
Go to Ways to Help
SVG_Icons_Back_To_Top
Top