Profile picture for user James_Pressley
James P. Caregiver

For Caregivers - My story of losing my grandmother.

This is my first time ever writing on this website. In fact this is the first time I have ever even been to this site... and boy do I wish I would have found it a long time ago. I, like many of you, who are caring for your family member with an LVAD get so overwhelmed sometimes that it would just help to talk to someone. I wish that I had found this site before my grandmother's passing so that I too could have a community of people who I could talk to and relate with. Since it didn't work out that way I would like to tell you a little about myself and the story of the past 5 years.

My Nanny (grandmother) was a energetic, carefree person throughout my childhood. She had raised me from the time I was six years old. She was always feisty and full of life but she also had heart problems,mainly due to her consumption of diet pills over the years. She had always struggled with her self-image and so she did just about anything she could to find a quick fix for her weight. Unfortunately all of the years of doing this took a serious toll on her heart. In 2003 she had a triple bi-pass surgery which we assumed would be the end of the heart troubles. It wasn't. In 2006 she started getting really sick again with her heart and was in an out of the hospital for most of the year. At one point we were told to prepare ourselves because she wouldn't live much longer. We live in Chattanooga, TN and the biggest hospital in the area is Erlanger, and while it's a great hospital it's not a leading research hospital. When we had finally accepted that Nanny would die soon we were approached by a cardiologist who said that Vanderbilt had turned her down but University of Alabama at Birmingham would take her as a patient. So now we thought we would go there and get a heart transplant (yes we were that naive about these things). For the sake of getting to the good stuff I'm going to skip a little now...

On December 8, 2006 Nanny got her first LVAD, a Heartmate 1... To all of us it was like something from the future. We never had heard of anything like this, I mean really a machine that basically runs a person's heart off of batteries (yes I realize that it's more complicated than that but just to simplify things I have said it this way). She had a lot of trouble and after 5 months of being in the hospital she got to come back home, in fact it was February 8, 2007 (my birthday), I remember because it had snowed the night before and we didn't have school the next morning which was my birthday! It was the best gift I ever received.

The Heartmate 1 lasted for approximately a year and a half until it finally quit working. Fortunately out doctor had admitted her to the hospital one day earlier because of blood work and an infection. in the summer of 2008 she got the Heartmate II which she would have until she died.

After she got the second VAD she came home and basically lived a very sedentary life. Her daily routine would consist of getting up after sleeping 10-17 hours and sitting in the living room watching tv for a couple of hours and going back to bed. She wasn't the same person that I had always known. Even with the first VAD she had never been this "lazy" (for a lack of a better word).

In 2011 she got a driveline infection but it was cleared up in no time but what we didn't know what that the infection had gotten into the pump and had started to get in her blood stream. In January 2011 she was started on IV antibiotics from home that I had to administer at certain times throughout the day.

The antibiotics seemed to be working but they were really taking a toll on her. She ended up getting C-Dif (Which if you have ever had it or know someone who has you know how bad it really is) and she would constantly spike fevers of 103 or sometimes 104.

If the heart problems and VAD weren't enough we learned that she had a menengioma (frontal brain tumor) in the late summer of 2011. She had began falling and becoming unstable and what we had thought was depression seemed to get worse.

In September after coming home from my afternoon classes I found her lying face down on the floor in the bedroom. She had fallen out of bed and didn't even have the strength to pull herself up out of the floor. Three weeks before that she would have had no problem picking herself up if she had falling. This is when we knew that whatever was wrong was getting worse and it was taking her over... FAST! I took her to UAB in Birmingham the next day and they admitted her. Of course this was standard for us and it really wasn't a big deal. We had been in for much worse than this before and so we obviously assumed that she would get better. In fact she was scheduled to have 5 weeks of radiation on her brain tumor a week later. We hoped that things would improve once the tumor was shrunk or gone.

Sadly she got worse and worse over the next couple of weeks and before we knew it palliative care was telling us that she would only have a couple of more months left. Of course you know how it is with doctors... one day it's one thing and the next is a complete different story. A couple days later we were told she only had a few weeks... then a few days.. and then before we knew it she only had a few hours left (THIS IS ALL WITHIN A WEEK).

On October 21, 2011 at approximately 5 PM (Central time) Nanny passed away. It was probably the worst thing I have ever went through in my life. I had spend every waking minute for almost 6 years taking care of her and learning about the VAD and preparing for any complications that may arise only to find out that it didn't matter. In my own mind I had imagined the VAD keeping her alive forever, even though I knew it wouldn't. Everything just happened so suddenly that I didn't know how to function at all for a while.

Now it's been almost 3 months since she passed and what I regret most is that I spent more time worrying about her and taking care of her than I did showing her how much I loved her. I know she knew I loved her and I knew she loved me but I spent so much time telling her what she could and couldn't do that I forgot to just let her be who she wanted to be again. I used to feel like if I didn't have to take care of her school and life would be so much easier but if I had to do it all over again I would in a minute. I loved my Nanny more than anything! She was the only person there for me when I needed someone and I was there for her when she needed someone.

The only advice I have for all of you who are caring for the person you love, don't ever take them for granted or complain about how much trouble it is to take care of them. And don't EVER start to treat them like a child who can't do anything for themselves. It may seem like you are helping them but in the long run it isn't doing either of you any good. If anyone ever wants to talk or need advice feel free to email me at my personal email address: I'll be more than happy to talk to you. I'm a nursing student now so sometimes it takes me few hours to respond but I check my email regularly. Thanks for taking the time to read this.