Castleman disease: “I gave samples for research”

Hello Gary, you've been living with Castleman disease, can you tell us how the diagnosis has changed your life? 

I had been a healthy, active guy for years, when suddenly Castleman disease knocked me down. Every major organ in my body was starting to fail.

I had been a carpenter for 27 years, and overnight I became a man on a ventilator and feeding tube in intensive care, fighting for his life.  

Thanks to the diagnostic criteria that the CDCN (Castleman Disease Collaborative Network) published the day I was admitted to the hospital, my doctors were able to take my critical state straight from defensive and stablising measures to direct treatment. 

What did you think at the time? How have you found the strength to fight?

The fight I experienced from that hospital room back to the life I live today has been the hardest I've ever known.

As a former marine, I know what it's like to volunteer for something that could kill me, but I'd never volunteered for something that could save my life. Dr. David Fajgenbaum and the CDCN were the first to offer me the opportunity to do that.

Can you tell us more about what the CDCN and Dr. Fajgenbaum have done for you? What was your condition at that stage of the disease?

I was in critical condition, lying in the intensive care unit, just off the ventilator, tied by needles and tapes to a litany of chemicals and machines. I could barely eat solid food again after nearly a month. My mind was frantic at times, wanting so badly to tear it all away and get back to the very most basic blessings of being alive: breathing, walking, eating, hugging without assistance. 

I wanted the nurses and doctors to see that I wasn't this frail, swollen wretch lying helpless in bed. I was a guy who had taken up vigorous vocations and hobbies, who was fit, laughing and downright hard to hurt. I used to say to my physiotherapist, "I AM an AVID CYLCLIST!". 

It was then that David visited me for the first time in my room. I immediately clung to the hope that one day I could get to where he is: vital, alert, and driven.  

That day he asked me if I would be willing to donate samples for research. It was hard to find words. It was so much more than just 'yes'. It was an opportunity for me to fight, not just to survive, but to fight back, to strike a blow against sickness, fear, and being struck by the unluck of the draw. An opportunity to step up from my fight to OUR fight. 

How do you feel today about Castleman disease?  

I've recently passed two years in remission, and during this time, the CDCN has continued to make substantive and impactful advances in the identification, treatment, and increased understanding of Castleman disease. From researchers to patients and their families, the CDCN has helped to connect us all. This gives me great hope for the progress of medical and scientific researchers around the world engaged in the battle. 

If you had one message for others in the Castleman disease community today, what would it be? 

I regularly read the stories of other patients at various stages of Castleman diagnosis and treatment. 

Today I would like to say that if you're able to make a donation to help this research, or if you are a patient who might donate samples and medical data, I hope you will. 

This isn't just the CDCN's fight or my fight. It's Our Fight. 

To learn more about the CDCN and its unique approach to research, feel free to read our article here: “Castleman disease: The CDCN's unique approach to accelerate research”.