Darrell Paris

Darrell had a journey to a heart transplant and any and all donations will be for his medical journey that has proven to be challenging and truly driven by prayer and God.

This is his journey and story:

On May 13, 2022, Darrell went to the ER as he was having significant shortness of breath, chest pain and pressure this had been going on for a little over 3 weeks and became unbearable. He was diagnosed in the ER with heart failure and had so much fluid built up around his heart at that time it was said if he would have waited any longer he would have drowned on the fluid.

That was the beginning of a journey we were not prepared for as he had just recently turned 39 years old. He was hospitalized for a little over a week and was required to follow up with cardiology closely for his new diagnosis. It was found after genetic testing that he had a mutation known as TTN gene. Which lead to dilated cardiomyopathy which lead to Stage 4 heart failure all of which were never know of as he didn’t exhibit any issues of health problems until the weeks that lead up to his hospitalization.

He then began following cardiology and taking medications, it was determined that his ejection fraction was only 17%, while normal ejection fraction is typically 60%. We began watching fluid intake, salt intake and all the required things to keep him as healthy as possible in addition to the heart failure medicines, however we were hit hard again with more issues.

August 21, 2022 we went back to the ER for significant swelling and increased shortness of breath he was admitted yet again for heart failure issues and needed to have fluid removed safely. After 3 days in the CVICU in Greenville he was discharged. He only got worse after his discharge, so on August 28, 2022 we went back to the ER. Again he was still full of fluid, and again had to have the fluid removed safely. Back to the CVICU he went. This time he was given a PICC line directly to his heart to give him a continuous IV of Milnirone that was to assist with his heart failure on September 5, 2022 they began attempts to set up home health and work on discharge. This went into the next day on September 6, 2022, the day started off well at first. We met a Dr Bono who we will always say saved him as the next events were critical. Darrell made a comment that something wasn’t right and moments later he decompensated quickly. He went into cardiogenic shock, and intervention was needed immediately to save his life all of which Dr. Bono made happen. The days before this I had been researching as it seemed strange that Darrell was only getting worse and not better and I had requested days before for a referral to MUSC in Charleston, but was initially brushed off by the attending cardiologist in prior days. Darrell was taken to the cath lab and had a balloon pumped placed to save his life. Dr. Bono pulled me aside and said he needs more care than we can provide in Greenville, do you have somewhere in mind, I immediately said MUSC, and his response was it might be hard considering he doesn’t have health insurance but I did my residency and training there let me see what I can do. Within 24 hours he was moved to MUSC which would prove to be life changing and 3.5 hours away from home.

Transported to MUSC on September 6, 2022 he began to get the care and more advanced specialist he needed to save his life but again the journey would prove to be scary. Balloon pump in place that was the only thing helping his heart. It was determined that he needed a heart surgery to have an LVAD placed as his heart was too weak to stand alone with just medication. Knowing that a scary open the chest open surgery was happen he demanded his children be present and that he got to see them as it had been weeks since seeing them in person and hugging them. The doctors advised the balloon pump to not be removed but understood his request and considering how well he was doing they allowed this.

On September 14, 2022 the balloon pump was removed and on September 15, 2022 our children came to see their Daddy for the first time since August 28, 2022. He spent only a few days of time with his children as on September 17, 2022 after visiting with the children he made a comment that something was wrong again and he felt bad. Sure enough he developed a fever and they couldn’t control it, it was determined he had serotonin syndrome, and then just progressed into cardiogenic shock again for the second time when his LVAD surgery was scheduled for Sept 19,2022. This then made his heart not even strong enough for surgery. A balloon pump was replaced to help his heart. This would prove to not even be enough help to keep him going and he stabilized but then went into cardiogenic shock again for the third time and intervention was demanded immediately for an Impella. He was watched closely and the Impella was not enough as the hours would go on he continued to get worse and not better. He then went on ECMO and and Impella CR to give his heart all the rest it needed to make is strong enough for LVAD surgery which would save his life.
ECMO, is truly a machine pumping all the blood in your body for you, it is your heart on the outside of your body circulating all the blood and requires a TEAM of people to watch you closely. After 3 days on ECMO and an Impella CR all of his cardiology team determined that his heart had rested enough for his LVAD placement which again open heart surgery had its risks.

September 21, 2022 was the day his LVAD was placed and after 8 hours he was recovering but there was damage to his right side and we had to wait to see how he would recovery and he recovered well. On October 5, 2022 he was discharged from the hospital with his LVAD placement and heart recovering and he was going to live a new normal until we can get a heart transplant. Because end goal is a new heart which he will need as his LVAD is a bridge to transplant.

One thing about hospitalizations it takes a toll on your body and immune system all of which we found as his new normal consisted of catching every illness that came his way and depression as the new normal was a huge change. All of which landed him another week in the hospital in November. Then he caught the flu which is believed to have caused an abscess pocket at his driveline from all the coughing, this lead to another week hospitalization and surgery in January.

He had a surgery in January 2023, to remove the infection and came home with a wound vac and PICC line in which he had to use for Vancomycin infusions twice daily. After 8 weeks of IV therapy the line was removed and his wound was healed, so now his new normal really began while adjusting to the LVAD, his limitations and lifestyle to await a transplant.

Around 12:30 am on May 31, 2023 ( just turned 5/31) he was coming to bed and stated something is wrong and not right to which his LVAD alarmed a low flow to call the hospital and he screamed in severe abdominal pain. A call to MUSC emergency pager was placed and then a call to 9-1-1. Upon his arrival to the ER via ambulance in Greenville they determined he had fluid in his abdomen and they were in contact with all his LVAD team in Charleston, and he went for a CT and was preparing to stabilize to get him Medvac’d to MUSC for further treatment it was then they determined that his spleen had spontaneously ruptured and then next events would prove to be life changing and scary yet again.

He was bleeding out and received over 25 bags of blood to keep him alive, and emergency splenectomy that had no LVAD team members present. All in which he survived. He was medvac’d within an hour to MUSC after the surgery. Several days on sedation, ventilator and pain medication they began to wake him up. He woke up but as his wife I immediately noticed something was off his eyes were swollen and the left eye was bulging and drooping and his personality was flat, emotionless and he had right sided weakness with the inability to raise his right arm. I pushed the nurses with my concerns who then had the doctor come in and they sent him for a CT of his brain. They found he had an eye stroke with a severe hemorrhage behind his eye, they also determined he had multiple mini-strokes throughout his entire brain.

Several days passed he was moved from the CVICU at MUSC to the floor room and then moved to an acute rehab facility to assist with his recovery.
We are still continuing to recover as of June 25, 2023 and will continue to recovery and awaiting a heart transplant.

Our family and friends are raising money for the nonprofit Help Hope Live in honor of Darrell Paris to fund uninsured medical expenses associated with transplantation.

We chose to fundraise for Help Hope Live in part because Help Hope Live assures fiscal accountability of funds raised and tax deductibility for contributors. Contributors can be sure donations will be used to pay or reimburse medical and related expenses. To make a tax-deductible donation to this fundraising campaign, click on the Give button. Please share Darrell’s page on your social media platforms.

All and any donations are welcome. We are grateful for any assistance.

For more information, please contact Help Hope Live at 800.642.8399.

Thank you for your support!