September’s support group was dedicated to original HeartBrother Salvador Monti, who passed away in August after living with an LVAD for almost 11 years. His wife Marie also attended the meeting.
HeartBrother Pat Sullivan opened the meeting with kind words about Sal and the inspiration he provided. “[The Montis] have been strong supporters since day one of the HeartBrothers, in many ways. Sal and I met in rehab, in Kindred Rehab. (HBF co-founder) Bob, and I, and Sal were there at the same time. I can’t remember anyone complaining about food at that place more than Sal. He was just a piece of work,” said Pat, as he chuckled. He went on to say, “He was a gentleman, but he seemed gruff on the outside. Many found him gruff on the outside, but he was the kindest, most loving, sincere guy you would ever want to meet. He came to our meetings, [Sal and Marie] donated, they went to see patients even in their own homes. He was a character and I just loved him. Marie, we are just so sorry for your loss.”
Don Mitchell added, “He was always a pleasure, and he was very much a gentleman. It’s not an easy thing to live with a destination LVAD, but he did it with grace.”
Marie Monti responded, “I really appreciate all the sentiments.”
With Marie in attendance, they discussed the critical role caregivers play in families living with heart failure.
“Caregiving is a critical aspect,” said Don.
Participants also discussed the importance of inspiring those who are waiting for heart transplants, living with LVADs, or going through post-transplant.
A support group member and his wife shared how Sal provided inspiration. “If he can do it, I can do it. I will,” said the member. His wife added, “His is a destination therapy as well. So knowing that, and knowing [how] Sal went through things, is an inspiration for him.” Based on age and blood type, her husband doesn’t think he will receive a heart. He has had LVAD surgery, which went well. “I got a new life,” he said of receiving the LVAD.
Another man, who is 16 months post-transplant, addressed the challenge of balancing medications. “I wouldn’t be here if I didn’t have a transplant, I was in critical shape 16 months ago. It was a long journey that first year. It was tough. Everyone’s different. There were some challenges, but we overcame them,” he said. He is cleared for all activities and makes sure he goes for walks.
Several women also joined September’s meeting. One, who is new to the group, received an LVAD three years ago. At the time, her heart was pumping at 15 percent. She has been on the transplant list for about two and half years. Her sister, who is also her caregiver, was with her at the meeting. “We are really happy to be part of this group,” said her sister. “It is a tough road, and you have to have a fantastic support system.”
A woman who is 25-years-old received a transplant a month ago. She shared, “I am home. I am happy. I am anxious, incredibly, but that is okay. If my heart and body are good, that is okay.”
Her heart issues began when she was just 14-years-old. “I want to pay attention to my heart and my body, but I also think paying attention to other parts of me allows me to breathe and allows me to feel more like me, instead of a patient. Sometimes that’s really hard to do,” she said.
Another member provided encouragement about the journey back to health. Eight months after his heart transplant, he received doctor permission to travel. He hasn’t gone anywhere for four years, but now his wife is planning vacations.
Hamid talked about the importance of putting goals out there to stay positive. He will be 11
years post-transplant in November. “I was walking 5-10 miles a day after the transplant. You can do a lot afterwards if you want to and I think that’s really the key to it,” said Don.
Ten years ago, the life expectancy for someone with a heart transplant was 10 or 11 years; now it’s longer.
In addition to its regular programming, the HeartBrothers Foundation is working on putting together a caregiver support group in 2024.
To learn more about our next Patient Support Group, click here.