CYNTHIA’S PERSONAL STORY

My son Sam was diagnosed with dilated cardiomyopathy in 2016, underwent LVAD placement in November of that year, then had a heart transplant in December. He was 16 years old at the time. Post transplant he vomited every day and was constantly nauseous, and we thought it was a reaction to all the medications. In April 2018 he was finally diagnosed with gastroparesis. From a cardiac standpoint he’s doing great now, but his G.I. Symptoms have been very difficult to manage.
He’s a patient at the gastric motility clinic at Boston Children’s Hospital, and because he’s about to turn 20, I decided to seek an adult G.I. provider and we will be going to Beth Israel Deaconess in October to meet with their gastric motility specialist. He had a G-tube placed last August, which was recently converted to a GJ. He cannot tolerate feeds through his J, so for now he’s just using the G portion. He uses medical marijuana to control the nausea and is very judicious in his use. He’s on every G.I. medication possible that doesn’t interact with his transplant meds, and has had Botox injections into his pylorus twice, with not much benefit. His PCP recently put him on Zoloft and he seems to be doing well with it (his dose was just increased to 50 mg). It absolutely rips my heart out to see him struggling every day, especially given everything he’s been through! I’m just hopeful that research will find a way to treat this awful condition. Thank you for allowing me to share my son’s story

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