Living with an LVAD

Some facts:

  • In 2004 the LVAD was approved as a Bridge to Transplant until then the HeartMate XVE, a pulsating LVAD, was used.
  • In 2006, the HeartMate II (Thoratec) is definitively approved and applied in the Netherlands
  • In 2010, the HVAD (HeartWare) is the second LVAD on the market in the Netherlands
  • On November 9, 2010, an HVAD was implanted for the first time in a patient who had not was eligible for a heart transplant, as a destination therapy. The LUMC paid for this treatment itself.
  • In mid-2012, more than 12,000 were implanted worldwide
  • The HeartMate 3 will be taken into use in 2014. An LVAD similar to the HVAD with 'learned' from the previous pumps
  • In 2015, the LVAD was included in the basic insurance package in the Netherlands. From this date, the LVAD can be used as a treatment for end-stage heart failure (even if there is no possibility for transplantation).
  • At the end of 2018, 24,354 LVADs were implanted worldwide.
  • In total, the HeartMate II implanted more than 26,600 times
  • At the end of 2020, approximately 900 people in the Netherlands will have received an LVAD, of which 470 in UMC-Utrecht, 155 in Erasmus MC and 107 in UMC Groningen. Most of these people have now been successfully transplanted.

How do you deal with an LVAD mentally?

The moment an LVAD is implanted, a new phase in life begins. For some it will feel like a relief because after a long time there is finally enough energy again to at least pick up normal life. For the other it is a shock because only a short time before the implantation there were no clear signs of 'being sick'.

How do you physically deal with an LVAD?

An important part of this 'living with' is finding the right way to carry the controller and batteries on a daily basis. The hospital provides various solutions for this, but these are not always pleasant for everyone. In addition, several methods have been devised and developed, often by people who have been walking with an LVAD for quite some time. click here  for a belt developed for the HeartMate II and 3 and with a small adjustment also suitable for the HVAD.

How do you get through this period as safely as possible?

In addition to functioning in daily life, there are also a number of disciplines that have to be dealt with in a good way. The topics discussed below are cited because it is important to know what is and what is not possible and, if so, how this can be done as well and safely as possible. With a few adjustments, life with an LVAD is doable.

Batteries and all.

First of all, it is very important to always bring enough (spare) batteries and the spare controller with you when you leave home. Without electricity, the pump will no longer work. With the HVAD from Heartware it is possible to connect the controller to the battery of the car in addition to a battery, so it is also useful to always take this part with you.

Wound care at the driveline.

The LVAD consists of the pump implanted in the body and the controls and power supply located outside the body. The wire that supplies the pump with electricity, the driveline, leaves the body through the abdominal wall. This means that there is a permanent opening in the abdominal wall that must be cleaned regularly. During the first period, this wound care must take place every day. Once this output has healed properly, this can be reduced to 2 or 3 times a week.

PAY ATTENTION this should always be done in consultation with the LVAD nurses. They can tell if the wound has healed well enough.

The image on the right is an example of how the wound care can be done, this varies per hospital.

The LVAD and water!

It is important to be careful with water. After all, electricity and water don't get along very well! Swimming or bathing is not possible. Besides the fact that in both cases it is difficult to pack the batteries completely waterproof, it is also not good for the output of the driveline if it fills with water and the risk of infection is high.

Showering with an LVAD.

Showering is possible when the wound in the abdominal wall has healed in such a way that the risk of infection has largely disappeared. A special bag will be made available from the hospital in which the controller and the batteries can be packed in a safe, watertight manner. It also explains how the wound should be treated while showering.

PAY ATTENTION start showering only after consultation with the LVAD nurses.

Bad weather conditions.

In case of (the expectation of) bad weather such as storm, rain and thunderstorms, it is wise to stay at home. If you are on the road and there is a thunderstorm, it is safe in a car. If you are outside, try to hide somewhere, preferably in a house or something similar never under a tree! Especially thunderstorms in combination with an electrical device are not recommended. In the event of a heavy thunderstorm at night, you can also consider going to sleep on the batteries instead of on a machine that is connected to the mains. The risk is much lower in built-up areas than outside, but a violent lightning strike can always cause damage to electrical equipment.

With an LVAD on vacation.

Going on vacation, even if it is for a few days, requires preparation. Make sure you bring enough spare batteries and the spare controller. In addition, the battery charger and the night station. Also the shower bag and enough plasters for wound care. It is very important around the INR for the blood thinning keep a close eye. During a holiday period people usually eat differently than at home. This can disrupt the blood thinning. Remember to bring enough (fragmin, etc.) syringes with you in addition to the lancing device.

On vacation if you are on the waiting list for a transplant.

When you are on the waiting list for a transplant, it is only possible to stay in the Netherlands. This is to ensure that you are in the hospital on time if a donor heart is available. If you still want to go abroad, please discuss this with the transplant nurse, then you can be temporarily removed from the list.

PAY ATTENTION always give it to the heart transplant nurse if you are more than 30 km. away from your place of residence. The time you need to get to the hospital must be known so that you can be called up in time.

Vacation on the water.

Holidays on the water are strongly discouraged. After all, if you somehow hit the water, you have a big problem! During a trip, for example on the IJsselmeer, a beautiful sunny day can change from one moment to the next into storms, storms and thunderstorms. In addition to the danger of falling into the water, there is also the time it takes to get out of the way when a malfunction or other complications arise.

Holidays abroad.

Vacation abroad with the LVAD is possible.

PAY ATTENTION Always discuss this with your LVAD nurses, they can advise where to report if you need help. In addition, they are informed if they receive a call from abroad when you have registered there.

PAY ATTENTION If you are on the waiting list, a stay abroad is only allowed after permission from your heart transplant nurse. You can then be temporarily removed from the waiting list so that no unnecessary calls are made.