We have learned a lot in 2 years…

May 17, 2018

Den and I have learned so much in the last 2 years that is seems staggering to anyone that has not lived this oddesy with us. I have listed below just the high points that we learned very quickly in the first few months when Den finally came home. Some are just no brainers, others we had to learn the hard way.

Here goes…

  • Make a group email for your care team. It makes it easier to communicate on a non emergency basis. Our team hears from me at lease once a week, if not more often…like right now we are on daily updates to adjust his diuretic as needed. Our team also knows that if they get a call from me, we are most likely going to be headed to the ER.
  • Don’t let anyone do the dressing changes if you can help it. Always have someone in your personal care team do the changes. I always ask to do Den’s even when he is in the hospital. That way I know how it was done and it is done the same way all the time. We didn’t even let our home health care group do his changes when Den first came home. Our LVAD team and I decided that it would add possible risk of infection to have someone who was unfamiliar with the procedure to do any of his dressing changes.
  • Watch out for ANY changes in the drive line exit site. This could be anything from a simple irritation to the cleaning solution (which we have dealt with already) to a possible infection. Drive line infections are the largest reason for readmission after surgery within the first 3-6 months. I have been very diligent with Den and his changes. We have thus far dodged the drive line infections demon….and for that I am very happy. You should call your team immediately if you see any sign of infection, including….redness, drainage, foul odor, pain, fever or the area being hot to the touch. These are major red flags and should not be dismissed.
  • Diet is very important. Den is on a heart healthy, low sodium diet. He lovingly refers to me at his “Salt Nazi”. I am always on his case about tasting his food BEFORE he puts any salt on it….sometimes he actually listens.  Your diet my be different and you can discuss it with your team. Den is also on blood thinners and at first he thought that meant he could no longer eat his greens…broccoli, brussel sprouts, spinach, etc. We talked to our team and they told us that they could adjust his blood thinners to compensate. The only catch is that you have to consistently eat greens or not eat greens. This way your levels remain steady and you don’t run the risk of clots or bleeding from eating too much or too little.
  • Den had been on a fluid restricted diet before his surgery. When he came out those restrictions were lifted…we have started limiting his fluids a little again, but that may change as time goes on. The biggest thing to remember is you have to increase your fluid intake when the temperature starts to go up or you are outside more. This way as you perspire or evaporate the fluids are replaced and you don’t have pump fluctuations due to dehydration.
  • Keep up on your daily log book! This is very important in the beginning! Until you know what your “normal” is, you have to keep track in your log. Our team wants to see Den’s log book whenever we are in for an appointment. If there have been no problems, they usually don’t look at it. But if we have been having any kind of issues, the log book is one of the first places that they start look for patterns.
  • Den and I live about an hour from our LVAD team. Don’t worry if you are not really close to the hospital where you team is located. If there is a life threatening problem, call 911, then call your team. If the problem is very serious, the nearest hospital will do what they can to get you/your loved one stable and then transport them to where your team is located.
  • Don’t be afraid to ask any questions you have…the stupidest question is the one left unasked! Your team is there to help you navigate your new lifestyle successfully. They will do whatever they can to help you have a positive outcome! They are just as invested in you regaining your health and activity levels as you are!
  • Finally…..be patient with yourself. This is a very steep learning curve and you will most likely slip and fall once in a while. Don’t beat yourself up over the small things. Just learn from your shortcomings and do better each time.


I know there is more, but I can’t think of it right now. Have a great day and don’t forget to follow us on WordPress, leave us a comment or suggestion about something you might want to know. We are always open for suggestions!

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