Profile picture for user ciro.lvad
Ciro T. Prospective Patient

LVAD Hearttransplant

Hello all,

I'm Ciro. 31 years old and from the Netherlands. In 2019 I was on a city trip to Berlin and had acute heart failure. After a long visit with complications and an artificial coma I left the Berlin Heart Center with an LVAD. After the rehabilitation program, I can now say I can live a good life with this device and gained back to 45% EF. They even checked if I could explant the pump but when they turn it off, I'm a little under the necessary results.

My Cardiologist in the Netherlands tells me to go on the heart transplantation list and in our country I'll have one in +- 5 years. He also says after transplantation I'll live approximately +- 15 years with the new heart. Because I'm young and fit with the pump, I'd say to wait for getting on the list so I can live longer as people walk around for many years with this LVAD (Heartmate III). Isn't it a little bit weird to put a foreign heart in my body as I'm now good with 45% EF and walking 15 km a day on a citytrip. (With the breaks on terraces for a glass of soda.)

I'm also worries about his opinion because in the Netherlands people get LVAD's as last option, but in Germany they do it sooner, they also have more knowledge about it but they left me with the idea that I have to wait until complications and then get an urgent heart. But they forgot that in the Netherlands things are different. U need to go on the list and you will get a heart in 5 years if you're the right candidate.

What do you all think about this situation? And are there people here with the same situation or different thoughts? I'd say to live as long as possible with the LVAD and then get an heart transplantation if that is possible. I know this sounds a bit spoiled in comparison with other peoples situations but I wanted to write this message as clear as possible due the language barrier

Wish you all the best!

Kind regards,

Profile picture for user Kuskit
Ricardo M.

My suggestion is to get on the list.

You never know what can happened.  Also while using the LVAD you can develop blood clots, issues with the pump, etc.