“Patients should be happy.”

Parenteral treatments are easy to control, are titratable (= can be measured drop by drop) without a dosage limit, and they have few interactions with other medications, which must be taken into consideration for oral treatments. Prostacyclins can also be combined with all other pulmonary hypertension medications. Experience shows that we have to use a combination of several active principles, which includes parenteral prostacyclin plus-minus three months.  

Pump treatment is the only feasible option for parenteral treatments, which – from a clinical perspective – have a higher degree of efficiency. The 24-hour application offers the chance for remodelling in the long term.

... and challenges

The biggest challenge is the parenteral application, which must take place via a subcutaneous (= under the skin) catheter line. Side effects can occur, for instance prostacyclin causes skin redness.  

And there is a general misunderstanding in pulmonary hypertension treatment: Many patients believe that parenteral treatment involves taking on a burden that is not actually necessary. After all, there are also tablets. However, the illness is usually so serious that people need both tablets and parenteral treatment. The tablets are not intended as a replacement.

Pump therapy is teamwork

The first important aspect of pump treatment is: “Are my patients happy with their treatment?” Patients who are not happy turn the pump off. We usually then have to find another solution and these patients generally have poorer chances of survival. However, patients should be happy, that’s the first thing.

The second important aspect is regular control and self-management. Patients need to be able to operate and understand the pump. They must maintain high hygiene standards, know their dosage, order their medications, and know about their reservoirs. A management function is necessary for this. Patients have to experience a certain medical learning curve here. They need to understand what it means when they’re short of breath, go red in the face, or go pale.  

This sometimes isn’t possible for older patients. They are in need of a nurse or carer. And this person then also has to be there, care is everything. It involves joining a community of parenteral therapists and patients. It is a profession of faith: I would like to take control of my life with my pump treatment, with my caregivers, with my technologies, and with my medications. Some people do that completely independently, order their things themselves and manage everything. Others need institutionalised, confidence-inspiring, stable support. Nothing is worse for this group than when their support caregivers change. This is a catastrophe that often leads to treatment being discontinued.

The third aspect is contact with the centre. The centre is not always synonymous with what’s known as the “pump treatment profession of faith”. The centre is superordinate to that, controls, and offers access to the latest treatments. Something will also always change here because we are constantly searching for new things.

For whom is pump treatment not suitable?

• Patients with drug-induced PAH within the scope of drug abuse
  After all, the basic prerequisite for such a complete treatment is a well-established social structure. Sometimes it’s not possible to install this kind of treatment. This is the biggest challenge for me because this kind of treatment is often not an option at all for very young patients.  
• Parenteral treatment is also difficult for very old patients, although they are disciplined and easy to guide by a caregiver.