The VAD Life – One ACHDer Shares Her Experience with a Ventricular Assist Device

After an extended hospital stay, Carol was still waiting for a heart. Her care team had a plan to get her home while she waited with the help of a ventricular assist device. Learn more about the device and Carol’s journey on the bridge to transplant.

A Ventricular Assist Device, more commonly known as a “VAD”, is a device that helps to pump blood from the lower chambers of the heart to the rest of the body. It can be used on the right or left ventricle, and in some cases, both at the same time. A VAD is used in patients of all ages with heart failure and is implanted via open heart surgery. It is often used while a patient waits for a transplant, or, in some cases when a transplant is not an option, will be used permanently. The VAD consists of several parts. The main part is the pump, which is inserted into the ventricle. A long cord, called a drive line, is inserted through the skin in the abdomen and connects the pump to an external control unit and battery pack. This device allows patients, who previously would have been confined to a hospital due to their heart failure, to be at home. 

My experience with a VAD began in 2020. Living with congenitally corrected transposition of the great arteries, referred to as CCTGA, or L-TGA, I have had 4 open heart surgeries, multiple pacemaker and defibrillator surgeries, and many ups and downs in between. A decline in my heart function and worsening of heart failure symptoms led me to be listed for a heart transplant in December of 2018. I was admitted to the hospital in April of 2019 to wait for a new heart in the CCU, with a balloon pump keeping me stable. After 10 months in the hospital, a match had still not been found due to high antibodies in my blood. As other organs were being impacted, my heart failure team decided that my best option was to have a VAD implanted, before more damage could be done. In February of 2020, I underwent my 5th open heart surgery for VAD placement. 

LIfe with a VAD took some time to adjust to. There are two batteries that attach to the external control unit. Each battery lasts me about 6 hours. Once one is starting to get low, I have to switch it out with a charged one. I have four batteries plugged into a charging station, so in total, I have six. When I go out, I always bring an extra battery with me, as well as a backup control unit, in the rare case that there is a malfunction. At bedtime, I actually have a power cord I plug into the wall, much like a cellular phone charger! Similarly, I have a car charger for my VAD as well. It was rather strange the first time I used it. I asked my husband to take his phone charger out so that I could charge my heart! We still laugh about how funny that sounds! 

My husband also plays a big role in my VAD care. There is a dressing that covers the insertion site of the driveline on my abdomen to prevent infection. My husband was trained on how to change that dressing, using a sterile technique. The dressing is changed several times a week, usually after I shower. Showering requires some getting used to with a VAD as well. One of the hardest things to accept about having a VAD was knowing I wouldn’t be able to submerge in water. No pools, oceans, or soaking in a bathtub. It is not that I do any of those a lot, but knowing you CAN’T, makes you want to do them even more! I can shower, thank goodness, but it does take some preparation. I have to put a larger, clear dressing over the whole area on my abdomen that has the regular daily dressing on it. Then, I have a special bag for my control unit and battery pack, (I carry both together in a fannie pack around my waist usually) which has several different ways to seal it to prevent water from getting in. Once I have everything secured, I can put the bag across my chest with a shoulder strap and get in to wash up! Afterward, once I am dry, I take the unit back out and my husband changes the whole dressing. It definitely took some time to get used to this process, but I am grateful to be able to shower! 

The benefit of going through all this every day Is the amount of energy I have with the VAD! Once I recovered from the surgery, I was amazed that I didn’t need to nap several times a day. I would sit down and get ready to nap, as I had done all the time prior to the VAD, but as I would lay there, I would realize I wasn’t that tired and could get up and do other things.  I was able to go to cardiac rehab and ride a stationary bike for 20 minutes at a time. It’s amazing what you can do when you have blood being pumped to your body more efficiently!

There have been a few setbacks that have affected this newly found energy, unfortunately. First of all, I developed an infection of the drive line about 6 months after surgery. This was a known risk, but it can be treated. I started IV antibiotics, and have continued to do so on a daily basis since that time. As the infection can be embedded anywhere along the drive line, to prevent it from reaching the heart, I need to remain on IV antibiotics indefinitely. The absolute cure is removing the VAD, which can not be done till I have a new heart. The IV takes about 2 hours to go in every day. It’s really just become part of my normal routine.

The other issue that arose about a year after I had the VAD placed was the worsening of my right-sided valve. Previously that valve had been repaired during my 4th open heart surgery. Since then, there had been mild leakage. With the increased pressure of blood flow that my VAD provides, the same thing that gave me more energy, has caused that valve repair to fail and leak severely.  This has worsened my heart failure symptoms.  While my energy isn’t as poor as it used to be, it has definitely declined, making everyday tasks difficult again. I have had to significantly increase my heart medications to keep extra fluid off as well. My heart failure team is actively looking for a way to replace the valve, without requiring open heart surgery again. 

Despite these setbacks, at the end of the day, I am still thankful that I have my VAD. It does require changes to my everyday life, but without it, I may not be here to enjoy each day. I always try to keep a positive attitude. I feel blessed to be home with my husband and daughter, as well as the rest of my family and friends, all because of this amazing medical technology!

Carol Raimondi is an adult CHD patient and nurse, living with Congenitally Corrected Transposition of the Great Arteries.  She has had 5 open heart surgeries in her 46 years, as well as a pacemaker since the age of 6. She is in need of a heart transplant and has had a VAD since 2020.

Due to worsening medical issues, Carol had to give up the profession she loved, but that didn’t stop her from being a patient advocate. She joined her local hospital’s Patient Family Advisory Council, which she co-chairs. Carol expanded her work in the CHD community by starting an adult and teen CHD group in Illinois, which became part of what is now Conquering CHD’s Illinois Chapter. Carol has also served on the Conquering CHD-IL board as president and is currently Conquering CHD’s Adult and Teen Lead Volunteer.  Her proudest moments are when she is advocating and raising awareness for the CHD community, both on Capitol Hill in D.C. and locally.

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