During the conference on November 8, 2013, many issues were discussed that you as a patient and professional encounter, many questions were answered and, of course, received more questions in return![h2] Hospitals [/ h2]
In the Netherlands there are the 3 transplant centers that implant the LVAD, UMC Utrecht, Erasmus MC in Rotterdam and UMCG Groningen. In addition, LUMC Leiden implants the LVAD as a destination therapy. There was a representative from almost every hospital who explained the policy regarding the application of the LVAD.
A lot of work was done with statistics that showed survival or recovery chances of different treatments in relation to each other, how to deal with this in the future and to what extent policy can be adjusted accordingly. Although each hospital has its own approach to LVAD treatment, there are many similarities. An over-all point of view is that in the first instance it should be examined as closely as possible to what extent a patient has actually been 'finished'. Have all the options with medication, ICD pacemaker, nutrition and lifestyle really been used optimally? Is the patient really in a phase where no other solution is available?
On the other hand, the suggestion was also made to apply the LVAD at a much earlier stage than, as is currently the case, as a last resort. After all, if a patient is still reasonably good conditionally, the chance of success is many times greater. The worse the heart function gets, the greater the risk of, for example, the failure of other organs. To make this easier to discuss, it has been proposed, among other things, to no longer place the discussion about the application of the LVAD in boxes such as 'Bridge to' or 'Destination Therapy', but to regard it as a treatment in itself. That is to say, someone enters a stage of heart failure where the chance of recovery by the appropriate methods is very small and in which case it can be examined whether this person can continue with a supportive heart. If the patient still has further problems, there can always be a screening to see if there is a possibility for a heart transplant. Perhaps the heart will recover during this time and that is a reason to take the LVAD. In that case we could speak of an 'LVAD therapy'.[h1] LVAD team UMC Utrecht [/ h1]
The LVAD team of the UMC Utrecht was represented by Drs. F. Ramjankhan, the thoracic surgeon who implanted the LVAD in many patients present in the room. As a close associate of Prof. J. Lahpor, who performed the first successful implantation of the HeartMate supporting heart in Europe on March 16, 1993, he belongs to the team that has the most experience with LVAD in the Netherlands.
Nelienke Hulstein and Anne-Marie Oppelaar, VAD coordinator and RN nurses, gave a presentation on patient counseling regarding both wound care and the psychosocial aspects that patients and their families have to deal with. Ben Rodermans has been the VAD Coordinator / Medical Engineer since 1993. In this capacity, he has followed, mastered and explained all the different techniques, from the various support hearts that have been there, to the technical developments and passed them on to the patients and their relatives.
[h1] Erasmus MC Rotterdam [/ h1]
Drs. L. Maat spoke from Erasmus MC, the cardio-thoracic surgeon who implements the LVAD in Rotterdam, among other things. He gave a colorful overview of the aspects that the doctors encounter with complications and methods of handling that can be seen in the wearers of an LVAD (inflammations at the exit of the drive-line, a drive-line that was curled up in such a way that it was almost no longer recognizable as such…). In addition, the different experiences and insights within the ErasmusMC.
Dr. M. Dalinghaus, pediatric cardiologist at Erasmus MC, gave a presentation on all aspects of the application of support hearts in children. This, too, was supported with photos of children connected to an external LVAD, RVAD or BiVAD where it became clear that these treatments, while life-saving, cannot be compared to the implantable LVAD.
[h1] LUMC Leiden [/ h1]
LUMC Leiden is the first hospital to apply destination therapy in the Netherlands at its own expense. Dr. H. Verwey knows how to be fascinating about this to tell. The patients who get an LVAD in Leiden are generally rejected for transplantation. On the one hand, this makes this group more vulnerable, but on the other hand it could be considered to implant the LVAD at an earlier stage. In all cases, before doing so, it is very important to see whether there is really no more profit to be made with other treatment methods.
Prof. R. Klautz is head of thoracic surgery at the LUMC. He is specialized in the surgical treatment of heart failure, including LVAD. In addition, he is, together with Prof. A. Voors of the UMC Groningen, chairman of the 'LVAD working group'. In that capacity he told about the studies that have been done on the application of the support heart in the Netherlands and worldwide. The aim is to be able to give advice from this working group to, for example, government and health insurers.
[h2] The LVAD manufacturers [/ h2]
Thoratec's Heartmate II is most commonly implanted in the Netherlands. In addition, there is also a lot of work with the LVAD of Heartware. There is often a preference for each hospital. In Leiden only the Heartware is used, at the other hospitals Thoratec is the most used LVAD.
Martin Muller, Senior Clinical Manager of Thoratec in the Netherlands, will show during this conference how this company went to work to ultimately arrive at this form of heart support. Naturally, their development continues and the latest generation of LVAD is almost ready for use. From the moment the device to be used is ready to be used in humans, it often takes years before actual approval is given from, for example, the FDA in America.[h2] Heart Foundation [/ h2]
In the Support Heart or Stem Cell Therapy project, the Heart Foundation - in collaboration with De Hart & Vaatgroep and UMC Utrecht - spoke extensively with 18 people with heart failure and 14 of their loved ones about existing and new treatments for heart failure. The central question was what patients think of the various treatment options and which improvement opportunities they see. Participants shared their experiences of the treatments they underwent and gave us insight into their questions, concerns and ideas about improvement opportunities. In this presentation, Rebecca Abma-Schouten will elaborate on what patients and their loved ones have to say about the supporting heart as a temporary or as a final treatment and she makes the link with the other treatments that have been discussed, such as treatment with drugs, stem cell therapy and a heart transplant.
[h2] The LVAD carriers [/ h2]
Like everything else, the people living with an LVAD are very different from each other. Where one person tries to take on all the challenges to see what is still possible, the other is so careful that this is experienced as a hindrance. One person wants to live with the LVAD for as long as possible, the other cannot wait until he is transplanted. This has to do with all kinds of personal circumstances, what someone is like and what he expects from life, but also to what extent there are complications.
Angelique Schoeber is 40 years old. She and her husband Marc have 3 children: Mike (9 years old), Tybo (7 years old) and Kyra (3 years old). For her work, Angelique and her husband were sent to Vietnam, where they lived and worked with great pleasure for 9 years. In May 2010 Angelique and Marc were in Singapore for the birth of their 3rd child. One week after giving birth, Angelique suffered a massive heart attack due to a spontaneous coronary artery dissection. As a result, the left ventricle stopped working and the HeartMate II was implanted. After a long period of approximately 1 year of rehabilitation, Angelique is now doing very well again. She can take care of her children again and has brought her condition back up a notch. Her motto is 'Enjoy life!'
Bert Vierbergen feels quite good with the LVAD, but would prefer to live on without the baggage that comes with a support heart. He runs into limitations of things he would like to do and would not dare to do. He is actively on the waiting list, but this day also pay close attention to whether there are arguments to postpone the transplant for a while.
My name is Bouke van der Snee, 62 years old. I have a wife and 2 adult children (who are always by my side). In 1998 I was registered with the heart transplant clinic. April 2011 I was placed on the transplant list and in May 2011 I received a support heart. The first year went very well, but the second year I developed severe arrhythmias that were resolved with external shocks. The medication has been adjusted and it is now more stable. The support heart is still doing its job, but I hope to get a donor heart anyway.
Marion Verbraak has had the LVAD for 4.5 years now and experiences it as an excellent solution. For the time being she does not want to be actively on the waiting list and hopes to keep it up for a long time to come. She mainly works with the LVAD in a different way than usual, because she is the creator of this website 😉, co-organizer of this conference and developer of the Safe Comfort Belt.