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Living with an LVAD - My Father's Journey

Lori Bowser

Manreet Kanwar, MD Allegheny General Hospital
Pittsburgh, PA, USA

In September of 2010, at age 70, my father was diagnosed with lymphoma. But before I introduce him as a patient, let me tell you about him as a person. My parents have now been married for 55 years and my dad was born in the house he still lives in. He had always been very healthy, strong, hard-working and robust - he could fix anything and he only missed work on extremely rare occasions. My dad loves to garden, hunt, and spend most of his day outside, no matter what the weather. His doctors have a nickname for him - Superman!

After the initial shock of learning about his diagnosis, we got down to business and dad went through chemotherapy treatment with good results. He insisted that the port be placed in his left arm so he could still shoot his bow. But then we got more bad news. As a result of the chemotherapy, his heart was damaged and he developed congestive heart failure. We were referred to the Heart Failure Clinic at Allegheny General Hospital in Pittsburgh. He was treated with medications first, but his condition deteriorated and he was started on a 24/7 infusion of Milrinone. This didn't slow him down. He still hunted that whole season with the IV bag attached. We understood that this was a temporary fix and were introduced to the idea of placement of a Left Ventricular Assist Device (LVAD). We had never even heard of such a thing! But we researched and discussed it amongst ourselves and dad made up his mind to go for it. The LVAD was placed January 30, 2014 - a scary day for us! That day, we were all there - my Mom, Grandma (Dad's mother who was 93 at the time), my two brothers, my sister and sister-in-law. The surgery went well and dad was discharged home.

I have to admit that learning to live with an LVAD was a huge adjustment. We had to switch my parents' bedroom because he needed to be closer to the bathroom so at night he could get there when he was off battery and attached to the base. Dealing with the LVAD was a major change for everyone, but especially Dad. He wasn't crazy about the bag used to carry the controller and batteries. We tried different vests, but what worked best was a fishing vest mom ordered. She removed a flap from the back and used it to sew pockets inside the front to hold the batteries. This makes it easier for Dad getting on and off the tractors and four-wheeler. One day shortly after Dad got home, I walked over to visit (I only live about 2 ½ miles away) and couldn't find him. I assumed he and mom went somewhere, so decided I'd walk back home through the woods. That's where I found Dad! They told him to walk, so he was walking! The LVAD had definitely changed Dad's life. He was never one to be held back by anything, and this was a burden in the beginning. Now, it's second nature and he has adapted very well. It certainly hasn't slowed him down.

In May of 2014, Dad had his first stroke. He recovered pretty well, but a second stroke in July left him with left arm weakness and speech deficits. He knows what he wants to say, but struggles to find the right words. Although he got better with time, he hardly ever said my name again. Little things that you take for granted and don't even think about are things you miss the most. There came a point he thought about giving up - he wanted the doctors to take the pump out. But by September, he decided he was going to find his love for life again. And he never looked back! His days were filled with mowing, gardening and hunting and he became a Superman all over again!

I feel the LVAD has made the quality of life better for my Dad. I give so much credit to my mother. She's had to learn so many new things! At 74, she's drawing his INR every week, adjusting his diet accordingly, keeps all of his appointments straight, takes him for chemo treatments and keeps smiling. It takes a "team" to deal with such drastic changes in life and they've been an amazing team for 55 years. I also give so much credit to all of Dad's doctors and the LVAD Coordinators. We've bombarded them with questions and phone calls and they are absolutely fabulous. There are times his doctor texts me out of the blue just to ask how Dad's doing. Just knowing that she's thinking of him means the world to me. I know he's not "just a medical record number"; he's a person they care about. They truly are wonderful people.

Would I recommend the LVAD? I guess that would depend on the circumstances. Bridge to transplant - absolutely. Destination therapy (Dad's case) - that depends on the person. It is definitely a life style change. It's high tech, it's a pain to lug around and it's scary. If you realize up front that it will be challenging and face it head on with all the resources that you have, it's a great thing. For my Dad, I feel it has allowed him to continue to be active. He would never want to be bed ridden, or even be confined to being inside. That's just not who he is or how he would want to spend his life.

He has taught us so much through all of this. Through the cancer, the heart issues and strokes, he rarely voices a complaint. His faith has never wavered and I am so proud of him and so blessed to be his daughter. He is my dad - and he is Superman!

Robert is finishing his third year on the VAD. Over the months, he has bought us countless vegetables and flowers from his farm that he has grown. Even though I have told him I am a vegetarian, he sends me pictures from his deer hunts! His family has probably educated an entire farming county about the VAD by now. He has met with other patients contemplating a VAD and told them about his experiences honestly. But his lymphoma has metastasized now and he is enrolled in hospice. Probably the only hospice patient we know who still hunts! He is Superman, after all.

Disclosure Statement: The authors have no conflicts of interest to disclose.

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