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The Courageous Journey of Dave Sullivan

With each new year, comes hopes and aspirations for the future. For 2018, many Mississippians are awaiting the gift of renewed health and life through a lifesaving transplant. At present, approximately 1,500 Mississippians and over 122,000 Americans are in need of a lifesaving transplant. A new patient is added to the national transplant waiting list every 10 minutes.

As Dave Sullivan and his family embark upon 2018, their hope is this new year will bring forth a renewed sense of normalcy and healing as Dave awaits a lifesaving heart transplant. As a loving husband, father of two precious girls and devoted follower of Christ, Dave hopes to offer others awaiting a transplant a sense of encouragement in the face of unexpected hardship.

The resiliency and bravery of Dave and his wife Michelle have been because of their steady, unwavering peace found in their faith in God even in the midst of financial hardship from medical care, expensive procedures and the difficult, upcoming transplant operation. Even with grueling daily tasks and fears of the unknown, Dave and Michelle know that if they can trust God with their eternity, then they can trust God with their tomorrow and the journey ahead as Dave awaits a healthy heart.

Dave can you tell our readers about yourself - where did you grow up and about your family and what has been your favorite hobby,?

I was born in Louisiana, but have lived in Brookhaven, Mississippi, since I was 13. My dad passed away in 2008, but I'm thankful to still have my mom; she's our next door neighbor. Michelle and I married in 2001, and we have two girls, Sarah and Rachel, 14 and 10 respectively.

I've always had a passion for cars...especially older cars...antiques, hot rods, old trucks. Unfortunately I've had to stop pursuing that and other hobbies because of my health.

Recalling those fateful days, what was the turning point that led to your diagnosis?

Since 2012 I've had regular echocardiograms, and since 2015 they have shown degraded heart function; it was getting weaker with each year that passed. We knew that if the trend continued for the 2017 test, life as we knew it would change. Unfortunately the heart function was down, so then came the dreaded "we need to discuss options" with my Advanced Heart Failure Specialist at UMMC. Those days between learning the test results and meeting with the doctor were excruciating.

What is the most heart-wrenching part of awaiting a heart transplant?

So far the fear of uncertainty has been the worst. Will a suitable organ be found in time? Even though I'm stable now, will my heart start to deteriorate again? When a suitable heart is found, will the surgery go well, and will there be complications? Those are all things we think of on a daily basis. Certainly for me though, the most dreaded is the thought of going through another extensive surgery.

With your diagnosis, you both have shown resiliency and unwavering hope. How have you adjusted in daily life as you await a transplant?

I try to live as normal a life as I can, and the Heartware LVAD that I have makes that possible. I walk for exercise, get around as much as my body allows, and just try to be as independent as I can.

There are daily bandage changes and other things that Michelle has to do for me that we have to make time for. The LVAD system requires two batteries on me at all times, so those have to be maintained and charged. The driveline site and controller need to be kept safe and secure at all times. Also, leaving home is not as simple as it once was. I have a carry bag with two fully charged spare batteries and a spare controller, so that has to be maintained and carried wherever I go. When a new heart becomes available all of this will be removed.

You and Dave are both proud parents of two daughters. Can you tell us about your girls?

First there's Sarah. She recently turned 14 years old and CAN'T WAIT to get her drivers permit. She's beautiful, sweet, and loves to learn. She has already decided she'd like to have a career in medicine, and is currently practicing to take the ACT Exam.

Her goal is a score of at least 30. She is also applying to the Mississippi School of Mathematics and Science in Columbus. Rachel is our 10 year old, and loves taking care of people. She has a heart for helping, and is always thinking of what she can give to others. She very much likes to care for smaller children, and they simply adore her and her caring personality. Both Rachel and Sarah are homeschooled, and are Beta Club members with our local homeschool group.

Along with Dave, your daughter Sarah received a devastating diagnosis that led to necessary surgeries. Can you share with us about Sarah’s diagnosis and progress.

In 2013 Sarah was diagnosed with Chiari Malformation, a condition in which brain tissue extends into the spinal canal. It occurs when part of the skull is abnormally small or misshapen, pressing on the brain and forcing it downward. The surgery was urgent, and took many hours, but was successful. Then in 2014, she had spinal fusion surgery to try to correct a severe spinal curvature that was related to the Chiari diagnosis the previous year. It also was successful.

Sure, she still has some issues, but had it been left untreated, would have possibly left her paralyzed before she was a teenager, and Sarah now lives a relatively normal life. She still has regular check ups, and most likely will for the rest of her life. We still don't know the long term affects of the procedures but we pray for the best for her, and God's will for her life.

It’s hard to imagine the strength you both had to take hold of in order to see your daughter Sarah having a medical battle of her own. What helped you as parents?

We have wonderful and supportive friends and family that were always by our side. Whether it was an encouraging card, extra money to pay an unexpected bill, bringing food when we were hungry, or simply a visit and a hug, they were there when we needed them. These same people were also lifting us up in prayer, and without that all the money and cards in the world wouldn't have made a bit of difference. Because of them, God gave us strength to endure as parents.

Michelle, as a caregiver what has been the most difficult part of your daily routine?

I guess the most difficult part of my daily routine is making sure Dave has everything he needs and does everything he needs to do in order to maintain his health. There are so many things, from bandage changes, to making sure we have the supplies in stock, and keeping batteries charged. You name it I worry about it! Plus, just being concerned about what "could" happen, plus thinking about the future. It's overwhelming at times, especially when the normal "mom" duties are all added in there too.

Of course, my source of strength is knowing God has got it all under control. I have placed my faith in Him and He's provided every step of the way. I also have wonderful friends and family that keep me encouraged and help me on the good days as well the not so good.

Dave, do you have any advice that you would like to share with other families who will unexpectedly find themselves awaiting a heart transplant?

Many feel like life is over the moment they learn they have heart failure. Although it comes in many different forms, and there are many treatments, it's usually not the death sentence most think it is. Yes, it will be a BIG life change. Yes, it makes you reevaluate many elements of your life. Yes, it's scary. BUT, knowing and have a close relationship with Jesus makes all the difference. That relationship is what will carry you through, whether you're the patient, caregiver, or friend and family member.

Many times friends and family members would like to offer encouragement and don’t know what to say that will offer a source of comfort. Can you share what meant the most to you and your family and any tangible ways that you could let others know how to reach out to your family or others awaiting a transplant?

Since my LVAD surgery this year was in the height of lawn care season, we had three neighbors that decided to take turns cutting our grass. Not only did they take care of ours, but my mom's as well. As mundane as it seems, it makes a big difference to us. Not having to worry about getting the yard cut was a huge relief. Basically, they saw a need and met it. It can be lawn maintenance, washing a car, preparing a meal, or performing handyman work around the house. Just look and you'll see something that needs to be done for a family with a sick loved one. That's what makes a big impact for those with hospital stays....taking care of the daily things so they can focus on care and recovery.

What has been your source of strength and comfort through Dave and your daughter Sarah’s diagnosis and daily life?

Through all that we've been through the last nearly six years, my faith has grown tremendously. God has used all of this to build my faith by proving Himself over and over again. Yes, we've been through so much, and yes, it's been tough, BUT seeing our faith grow and becoming closer to Jesus has taught us that besides Christ, nothing else matters. We strive to focus on Him.

What is the greatest piece of advice that you would like to offer other families on the transplant waiting list?

Realize you're not the only one going through this. God has blessed me by placing in my life many patients just like me so that we can minister to each other. Look for those like you, pray for God to place you with others like you, and get to know and build each other up. There's no need to go through this alone.

I have a wonderful care team at UMMC. They've been there with us every step of the way and we couldn't have done this without them. Sarah has also had all of her surgeries at UMMC, so we're a UMMC family I guess you could say. We're very thankful for the Advanced Heart Failure/Transplant Team at the hospital, and for the doctors and care we've gotten for Sarah at Blair Batson.

Michelle, when you think of your family what are your hopes and dreams? Looking back over the difficult journey, what do you want others to know about the man you love as a husband and father to your children and about your precious girls?

Simply put, I want Dave to live to see our girls grow in to young women and have lives of their own. I know it sounds selfish, but they are very close to him, and he loves his girls as much as any daddy can. The most special thing about Dave is that despite all he's been through, is that he's always focused on others. He stays strong for me, he helps me, and he leads his family in a Godly way. He's the kind of husband I pray that our girls will have one day.

 

To find out about options for giving the gift of life, visit Donate Life Mississippi.

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