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Steve’s Story

St. Philip Church is having a benefit for Steve on March 27th. If you would like to purchase tickets, please contact Elizabeth Israni at 401-871-5410 or Vinny Mattera at 401-949-3345.

If you would like to make a donation,

Make checks payable to: DiSumma Strong Trust Fund

TAX ID #  46-7111924

Note in memo section: In honor of Steve DiSumma

Please send to:DiSumma Strong Trust Fund   PO Box 633  Greenville, RI 02828
------------------------------------------- --------------------------------Sharing Steve's Life Story... Written by Jen

Steve was born with TGA (transposition of the great arteries) which basically means his heart is reversed. When he turned 4 years old, he had his first open heart surgery. Back then, doctors didn't know how to correct this type of condition. Steve was limited with physical activity as a child and teenager. With the medical field advancing with technology, they were able to identify a few things to help Steve's heart so he had his 2nd open heart surgery at 21 in 1990. Steve felt great for a very long time. He went to college, worked and had a blast with his friends. We met each other in 1998, got married in 2001 and had our beautiful daughter Gianna in 2003. When 2008 came around, Steve started feeling not right. He was taken out of work for a month in late 2008 and in 2009 suffered congestive heart failure. After that, Steve's health started to decline slowly. It wasn't until November of 2011, he was fighting Rhode Island for the 3rd time for disability and decided to go back to work where he got really sick. He went to Boston for a few tests/procedures and didn't come home. My Dad and I will never forget the look on the doctors face when he told us that while doing the procedure, they almost lost him with his blood pressure dropping so fast. The Dr. looked at us and said Steve is a very sick guy and is in the ICU. The very next day, I called the lawyer and explained what happened and she called me back that very night to congratulate us that the judge approved his disability. Isn't it amazing to think that a man who was born with this heart disease with a history of illness, had to end up in the ICU for a judge to approve his disability? In February 2012, Steve had his 3rd open heart surgery. The doctors thought if they repaired the two leaking valves and put a pace maker in to help his heart from going into an abnormal rhythm, it would keep him well for quite some time, The surgery was a success as we so thought. Steve came home after 2 1/2 weeks and it took him several months to recover and he started feeling better. Life seemed to go back to normal. Come June 2012, it started all over again. I had to call the ambulance because Steve was not feeling well. They took him to Miriam hospital and told him he had fluid so they dried him out and sent him home and advised to see his doctors in Boston. The hospitals in RI do not know how to treat someone with Steve's condition. In July 2012, we took him to Boston for some tests and didn't come home. They found that the two valves they repaired opened up again and were leaking much worse His heart function was less than 20%.. The only remaining success was his pace maker. This was devastating news for us. Doctors started mentioning a heart transplant but thought that they could continue helping him with medicine for a while until it was time. Well, the start of 2013 was the time. I had to call the ambulance the morning of New Years Day. Happy New Year! They took him to Miriam again but like I said, they didn't want to touch him not knowing how to handle his condition so they transported him to Boston. There he stayed for 3 weeks and was told he was being tested to see if he was a candidate for a heart transplant. After several tests, he was told he was NOT a candidate because his lung pressures were too high so a new heart would fail immediately. The doctors were going to converse and come up with a plan. Steve ended up back in the hospital in March and was told on Good Friday that he would have to get an artificial heart as the bridge to heart transplantation but would have to remain in the hospital for approximately a year since that was the average waiting time for a donor. Happy Easter! Steve was hospitalized again at the end of April. The doctors told us that he needs to have this surgery very soon otherwise it will be too late. Steve was upset because he really wanted to be home for Gianna's birthday in July so we had a double birthday party for the both of them since his is May 28. We had 70 guests at our house. We are so grateful to have such supportive family and friends. The outpouring of love and support is so wonderful. Steve and I took a trip to Florida to spend some time together before his surgery. When we returned, Steve was hospitalized for 12 days, released on June 23rd and returned on June 25th. Steve is at the end stage of heart failure. He needs this artificial heart to survive. He is strong...DiSumma Strong as my manager would say. He can make it through this. He is one tough Italian. I think Gianna takes after him. She is excited for Daddy to get a new heart. All she keeps saying is she wants Daddy to get better. It's been an emotional roller coaster and we have a long road ahead of us but we have so much love and support that will get us thru this. I want to personally thank my Mom and Dad for everything they have done for us. WE could not get through this without them. I love you both very much. Steve's surgery is scheduled for July 3rd. He will remain in the hospital for an average of a year...could be 8 months, could be 14 months, could be 6 months...only God knows who the donor will be. If you are not a donor, please consider to be one. You can save a life! The North East has a lower number of donors than the rest of the country. Think about it! I will continue to provide updates the day of Steve's surgery and then daily updates after that. Take a few minutes to view the photos on this page. At this time, the photos are of the immediate family. Thank you all for your love & support. Jen XOXO

Latest Journal Update

Monday July 7th Update on Steve...

The doctors are trying to get the fluid off of Steve. It is slowly coming off. His feet are still the same though. The IV Lasix is much more potent than in pill form but it's still going slowly. He had blood work done today and they adjusted one of his rejection meds. He also had an ultrasound because they are concerned with the area where he had his dry lines from the artificial heart. They are watching it closely and probably will have to drain it. He will be the hospital for another week or so.

Let's keep praying he is home for Gianna's birthday on July 22nd. Sorry I don't know what else to say. It is what it is and we can't do anything about it.

I will keep you posted.

Love you all

1 person hearted this



Betty Capraro
By Betty & Tom Capraro
Still in my prayers
Lisa Tomasetti
By Lisa Tomasetti
Jen, Steve and Gianna, remember, you are never alone. You have an army of supporters; just say the word. I can't fathom the emotions, and toll this is taking. You are all doing great and on your darkest days, let the tears fall and know tomorrow is a brighter day. You remain in our daily prayers. Stay Strong my dear friends, this too will pass. Cyber hugs to all.
Irene Matthews
By Irene Matthews
I don't know what to say either!!!!!!!!!!
It is unbelievable!!!!!
Wish I was strong enough to help you out
with something. I don't go out much at all.
But I can still pray, pray and pray again!!!!!!!!!!!
Love, Irene