Welcome to this “PEP talk” of the Alliance for Pulmonary Hypertension. The letters “PEP” stand for “Patients Empowering Patients”. I hope I can empower you a little bit today!
My name is Louise Bouman. I am 48 years old, married, and a mother of two, with a dog completing our family. I live in the Netherlands. In 2008, shortly after giving birth to my second child, I was diagnosed with pulmonary arterial hypertension. For the past seven years, I have been the president of the Dutch Pulmonary Hypertension Association and recently became a board member of the Alliance for Pulmonary Hypertension. Today, I want to share my experience of living with intravenous (IV) pump therapy with prostacyclins.
My situation at the time of diagnosis
Functional class IV Every movement caused breathlessness Only option: IV prostacyclin First weeks incredibly tough
After Diagnosis
When I was diagnosed with pulmonary arterial hypertension, I was in functional class IV. I couldn’t move at all without becoming completely breathless. I had just given birth to my youngest son naturally in a peripheral hospital, before I even had a formal diagnosis. At that time, my oxygen saturation was dangerously low, requiring me to be on 15 liters of oxygen per minute. After delivery, I was completely exhausted.
At the expert center, the pulmonologist told me that my only option was IV prostacyclin therapy. They started the treatment immediately, but at first, I felt even worse than before. The initial weeks were incredibly tough—it felt like having the flu on top of my disease. With each dose increase, I experienced extreme fatigue, flushing, palpitations, and just general discomfort. But as I neared my target dose, things slowly improved. I felt less tired, less breathless, and a bit stronger.
After a few weeks, I was sent home with a mobile pump. Before that, I had received extensive training, and I had to convince my nurse that I was capable of managing the pump and handling emergency situations.
Living with an intravenous pump
Managing an intravenous pump while caring for two young children and a dog was a real challenge. Being connected to the pump 24/7 made everyday activities—showering, getting dressed, bathing my children, lifting them, and even sleeping—much more complicated.
Living with an IV pump is a challenge.
Sleeping, getting dressed, taking a shower becomes difficult Constantly vigilant: What if the pump crashes? What do I need to take with me if I leave the house? Accepted the new situation
On top of that, I had to be constantly vigilant. Would the alarm go off? Were my batteries running low? Did I have enough medication cassettes stocked? Whenever I left the house, I had to double-check: Did I pack a spare pump, extra lines, gauze, batteries? Did I have a medication cassette with me, and would it stay cool? Was my medical passport with emergency numbers in my handbag?
Despite all these challenges, I gradually adapted to my “new normal” and accepted it, because the improvement in my health was undeniable. I no longer needed extra oxygen, my resting saturation was normal again, and I could take my kids to the playground without immediately running out of breath. I could even manage some household chores and had enough energy to see my friends again. At the same time, my family and I had to accept that life would never go back to how it was. I could no longer achieve the goals I once had or chase the dreams I had envisioned. So, I had to start over—setting new goals and redefining my dreams. The pump became both my best friend and my worst enemy.
Overcoming Pump Challenges
Taking a shower
Taking a shower became much easier after my husband installed extra hooks in convenient spots around the bathroom. This allowed me to hang the pump in a dry and clean place. I also made sure to keep the insertion site protected at all times by covering it with sterile wound film (24/7) and never directing the shower jet directly at it. Additionally, just before showering, I secured the connection between the lines with waterproof tape for extra protection.
Preventing my kids or my dog from pulling the line out
Preventing my kids or my dog from accidentally pulling on the line was another challenge. Over time, I became a true expert in using silk tape. A few tips I learned along the way: the adhesive works better when warm, so after applying the tape, rub it gently to improve its grip. Make sure your skin isn’t too cold when applying it. Never apply the tape under tension—it can cause painful blisters. Instead, I always created “tunnels” by forming a loop of tape around the line. This allowed the line to move slightly without pulling on my skin. Use your bra for extra support—wearing it over the infusion line helps keep it secure.
I also made sure that no loose lines were visible. Any excess length was wrapped around the pump and stored neatly in the pump bag. This greatly reduced the risk of any accidents.
I became an expert in using silk tape Use your bra for extra support—wearing it over the infusion line helps keep it secure Any excess length was wrapped around the pump and stored neatly in the pump bag
Ready at all times
Staying vigilant was another challenge, but I found ways to make it easier. I kept one dedicated bag with all my essentials—spare pump, batteries, gauzes, extra infusion lines, my medical passport, and more. After each use, I immediately replaced any items to ensure the bag was always ready to go. To avoid forgetting my medication cassette, I set calendar reminders on my phone. I also stored all emergency information on my phone, so it was always at hand.
Prefilled medication cassettes are available from the pharmacy Prepare cassettes myself Independent Travel beyond Dutch borders again
In the Netherlands, prefilled medication cassettes are available from the pharmacy. In the beginning, this meant I received deliveries every two days. However, after a while, I wanted the flexibility to prepare the cassettes myself. This gave me more freedom—I didn’t have to stay home waiting for deliveries, and I could travel beyond the Dutch borders again. It also provided more security in case of emergencies since I could prepare extra medication myself instead of relying on urgent pharmacy deliveries.
A nurse from the company that supplied my pump and medical materials came to my house for five consecutive days to teach me how to prepare the medication safely and hygienically. I practiced under his supervision until I was confident in handling everything on my own. Being less dependent on others was such a relief! Traveling beyond the Netherlands became possible again. I mostly traveled by car since I had to carry so much medication and supplies. Flying was an option, but going through customs with all my medical equipment was stressful.
Switching to an implanted pump in 2022
At the end of 2021, treprostinil via an implanted pump was officially approved as a treatment option in the Netherlands. As soon as I heard about it, I researched all the details and created a pros and cons list. I sent it to my pulmonologist and asked if this could be an option for me. He was hesitant—his motto is always, “Never change a winning team.” But since I was well-prepared and fully informed about the potential downsides, he agreed to support my decision.
Switch from IV to SubQ
The transition from epoprostenol to treprostinil was done in the hospital. Since there’s no exact dosage conversion, the switch required careful fine-tuning before the pump could be implanted. Fortunately, the transition went smoothly, and I didn’t notice any significant differences. A few days later, I underwent surgery, and the implanted pump was activated immediately. The Hickman catheter was removed during the procedure, and just two days after surgery, I was allowed to go home. It took me about two weeks to fully recover and get used to having the pump in my abdomen.
Advantages of implanted pump
No longer continuously vigilant Easy to travel – even by plane! No more preparing cassettes. I have never regretted my choice—it has had an enormous positive impact on my quality of life! Now, I only need to visit the expert center every 28 days for a refill, and aside from that… I don’t have to do anything! No more carrying around supplies, no more constant vigilance, no more preparing cassettes, and no more worrying about empty batteries. Leaving the house is much easier now, spontaneous trips are possible again, and even flying is stress-free.
Disadvantages of implanted pump
Of course, you may be wondering, What are the downsides? The pump requires surgery under anaesthesia, which is not ideal for pulmonary arterial hypertension patients and not possible for everyone. Refills must be done at the expert center every four weeks. If the pump malfunctions, emergency surgery is required, and in the meantime, I would have to go back on the external IV pump. Over time, the pump starts to infuse medication faster, reducing the refill interval to every three weeks, then every two weeks. Once refills are needed every two weeks, the pump must be replaced. The pump is not available in all European countries, which could be a problem if it fails while I’m on vacation. Since I have little belly fat, the pump is visible under my skin (though I can cover it with clothing). On the other hand, for people with more belly fat, refilling the pump can be more difficult.
Summary
Yes, living with an IV pump is challenging, especially in the beginning. But over time, you adapt, and with a bit of creativity, you can still do a lot of the things you love—I even managed to go to a climbing park! For me, switching to the implanted pump was a huge improvement in my quality of life. I’m an active person, and this treatment suits my lifestyle much better. I love being as independent as possible and having the freedom to travel and take part in all kinds of activities. However, I know that this option isn’t available in every country and isn’t suitable for every patient.
Take home message
Strength is not the absence of struggle, but the ability to keep moving forward despite it.
Thank you for watching and have a nice day!