Meet Johnny Lemucchi

Johnny Lemucchi on the Putting Greens

Earlier this year, during the hardest time of our lives in the ICU, we met the Lemucchi’s, a beautiful Italian family from Downey, CA. Unfortunately, they were in the same boat as us.  A young father, Johnny Lemucchi, 55, was in desperate need of a heart but an organ was not available fast enough. Johnny received a Total Artificial Heart one day after my dad. 

After spending so much time in the ICU waiting room together and learning of our loved one's fates, we bonded over updates in efforts to support, see how our fathers were healing and fighting to live.

For a month, we would spend full days in the ICU waiting room together. The grandparents patiently knitted and read the paper, the young kids would visit after school or work, Johnny’s sister and brother-in-law were always present and Caroline, Johnny’s wife would sleep over every single night in the freezing waiting room, just in case something happened.

Going through the Total Artificial Heart journey together and supporting one another has created a lasting bond between our families. We are each other’s #1 cheerleaders. 

On August 20th, the same day the Lemucchi’s answered the interview questions below, Johnny received the CALL. A matching heart was available. He has since received a successful heart transplant and is currently recovering at Cedars-Sinai. We wish him a speedy recovery.

1. How did you end up with a TAH? What were your symptoms?
Caroline Lemucchi (Johnny’s Wife): He is a soccer referee and on Labor Day weekend 2015, after refereeing many games over 3 days, he felt very dehydrated and weak but still continued to work, coach soccer and referee games. After about a month of not feeling well, I made an appointment for him to get a physical. On November 6th 2015, he was given an EGG (Electrogastrogram) test and the doctor ran in and said, “You are having a heart attack!”

The paramedics rushed him to Whittier Presbyterian Intercommunity Hospital (PIH), where he was diagnosed with CHF (Congestive Heart Failure). He was told his first heart attack was sometime in September 2015 and that he needed a defibrillator installed at Cedars-Sinai.

After going into going into cardiac arrest in December 2015, Cedars Sinai inserted the device. Johnny was sent home and celebrated the holidays with family. He was feeling better then he had in months, and especially grateful to spend time with his new granddaughter. Suddenly, five weeks later, with no sign and not even feeling it, his defibrillator went off.  

Cedars Sinai instructed us to take him to the nearest hospital. Feeling great after a few days in the hospital, Johnny went into cardiac arrest the night before he was scheduled for discharge. 

Johnny was put on a breathing machine and placed into critical care. I was told nothing could be done his heart was badly damaged.  I told them that I wanted him transferred to Cedars-Sinai, and with the help of Dr. Beckham from Whittier PIH, it was done. He was transferred the next day and after a series of tests, Johnny was on the heart transplant list. We were listed 1A Status for 3 days but no heart was available. Our last chance at life was the Total Artificial Heart.

2. What was the hardest part of your time in the hospital? What was the best part of being in the hospital?
Johnny Lemucchi: The hardest part of being in the hospital was being away from family and home. The best of being in hospital was I knew that I was in good hands, and have a lot of trust in the doctors and nurses at Cedars-Sinai.

3. During your stay at the hospital, what did your family/staff do that made a difference in making you feel more comfortable?
JL: Having my family with me and supporting me made it easier.  The staff treated me with respect but during the recovery process my family’s support helped me get stronger and easier for my recovery.
CL: For me, the staff kept me informed on everything that was going on and tried to make my stay easier.

4. What do you wish your family did to help make your experience better?
Just having support of family and friends made it easier on both of us.

5. Do you have any tricks that will help someone new to the TAH?
Try to continue doing what you enjoy doing and don't give up on life. You might have to make a few adjustments, but make those adjustments and then go on with life. Don't let your machine keep you indoors or tied down. If people ask questions, be proud and tell them about your success with the machine.

6. Do you remember your time in the ICU? How long were you there for?
JL: I don't remember much about the ICU. I was in there for about two weeks, but I know everyone was very helpful to my family and me.

7. What is your outlook on having a TAH until a donor organ becomes available?  
My outlook on having TAH until I get donor heart is that I am here, being able to enjoy life and family.

8. What do you look forward to this year?
I was able to attend my youngest son’s graduation from high school, middle son’s graduation from college and watch my granddaughter grow up.  I am looking forward to her first birthday in October and spending the holidays with family.

9. What are your top three tips for people on the TAH journey? 
JL: Take care of your TAH equipment, take your medications and make sure you change your dressing every day.

10. Any additional advice or tips for your fellow TAH friend? Last words?
JL: Don't let it keep u down. Live life to its fullest. Keep a positive attitude. That donor heart will come. Once I get my heart would like to thank donor family and meet them if possible.  Once I get my heart, I want to coach and referee, travel and spend time with family.

See Johnny’s local story from The Downey Patriot here.