Paranoid about flows and watts after VAD thrombus! Heartware

Hi David,

You have every reason to feel anxious. You have been through more than your share of health issues resulting in implantation of an LVAD and now you have first hand experience with one of the complications, albeit uncommon, related to the device that is supporting you.

Thrombus formation in the current generation of LVADs is something that does not occur frequently, and once it has been treated, is even less likely to re-occur. We cannot tell you that it is impossible for a thrombus to re-occur, but the chances are very low.

The anxiety that you are having is another beast in and of itself. Not contacting your implant center is not an option. No matter how you feel you are treated your implant center needs to know what is going on with you and your device. Also, if they truly think that you are "panicky patient", which we hope is not the case, does it really matter? This is your life and your device, and it is the job of the staff at your implant center to listen to your concerns and help you to find answers that don't leave you feeling anxious.

We are not able to give you specific medical advice, that is the job of your implanting center, but we can give you some questions to ask that might help you communicate with them more clearly. Those questions include: 1. What are the chances that this can happen again? 2. Are intermittent changes in flow or power a reason to cause concern? 3. Are changes in flow or power that happen gradually a cause for concern? 4. Can you give me guidelines as to when I should worry and when I should not? 5. What can I do when I am really concerned about an issue with my device? 6. What can I do when I don't feel that my questions are being answered to my satisfaction?

Our advice to you would be to go to your implanting center staff and tell them exactly what worries you, ask them these questions and let them know how you feel when you talk to them. Most likely they are caught up in their busy day, and don't even realize that they make you feel that way. Please let us know if we can help in any other way.

Thanks for the reply, Ive since being readmited for 3 days to the Freeman hospital , where all of the questions you toldme to ask have been answered, I still feel some aniety but Im recieving help for tha aswell! Thank you for all your help Ive only had the the device 6mths so I suppose its going to take a little getting used to.

Hi Dawn, thank you for your support for David which I have only now become aware of. David had a very difficult journey with the lvad, the picture that was painted of the medical outcome was not at all what he/we experienced. I was thankful that his ordeal was over and he was finally at peace not much time after this post. David died on the 25th October 2012. I believe the body is a vehicle for the soul and the soul is eternal, it makes no sense to me to prolong life when that life is one of extreme suffering. David was a 'panicky patient' because he understood full well what was happening, he would question the medical staff, read up on everything he was told. There were some amazing staff at the Freeman hospital where we practically lived for the last year of his life, we were shown a lot of kindness. We met lots of amazing people, brave souls willing to endure incredible things to live. I have great respect for those people. I have great respect for him. I would rather no one had to walk the path he walked.