How I transitioned from an IV therapy pump to oral meds

Note: This column describes the author’s own experiences with intravenous therapy. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy.

When I was diagnosed with pulmonary hypertension (PH), my doctors recommended intravenous (IV) therapy rather than oral medications. They explained that, for severe cases of PH, IV therapy offers the best chance of stabilizing the condition and improving quality of life. I was told that I would likely need to use a pump for the rest of my life.

The thought of having a tube in my chest, attached to a pump I would need to carry with me every day, was surreal. At that point, I was so ill I could hardly sit up. The decision to start IV therapy didn’t feel much like a choice — it felt necessary for survival.

I sat in the hospital as bad news seemed to pile up each day. The frustration of a late diagnosis weighed heavily on me. Despite frequent ER visits and consultations with multiple specialists, my symptoms had been dismissed for far too long. Now, suddenly, I was confronted with the reality of IV therapy and the prospect of a lifelong pump. It was overwhelming to process.

When the PH specialist first explained my treatment options, I felt overwhelmed and zoned out. The look on my face must have been familiar to her, because she paused to let me process the news. Once I refocused, she explained with patience and clarity how the medication worked and answered my questions about the pump and the dressing. By the time she left the room, I had come to terms with the decision and was ready to begin treatment.

The next morning, she returned with a team of eight or more doctors. I braced myself for more difficult news. Instead, she simply asked if I had considered IV therapy. I told her I had, and that I was ready to proceed. A moment of silence passed between us, heavy with the weight of the decision.

“We’ve just never had anyone come around this fast,” she said. To me, it didn’t feel like an option so much as the only path forward.

Time reveals all

After my heart had time to recover, however, I began to feel that the medication was too strong. It seemed to have corrected the initial problem, but now it was overdilating my blood vessels, making me more prone to shortness of breath and passing out.

At the time, I didn’t know anyone who had been able to stop using the pump, nor had I heard of anyone who wasn’t told it would be a lifelong necessity. Still, I decided to ask about the possibility of coming off it. My specialist told me I was only the second patient she had ever transitioned off IV therapy and the pump.

Looking back, I’m amazed I managed to maintain the medication mixes, keep the site dry, and keep the dressing clean and sterile, especially while I was so ill. But I’m deeply grateful that I did.

The pump saved my life, but I’m grateful to have transitioned off it. I’ve now been on triple oral therapy for about a decade and am doing well.

Over the years, I’ve met people who have transitioned off the pump, some who wish to try, and others who prefer to remain on it because they are stable and worry their bodies might not respond to oral therapies. These decisions are difficult, and for many, they may be permanent.

My heart goes out to those who wish to transition off the pump but cannot at this time. If you’ve been told you’ll never get off the pump, concentrate first on your health and well-being. When you focus on getting stronger, the how-tos become less overwhelming.

Still, remember that we can surprise ourselves and our doctors. Our bodies may respond in unexpected ways to PH medications, and medical breakthroughs can happen at any time.

If there’s one thing I know for certain, it’s that only time will tell what the future holds.

To read more about my journey and PH awareness, follow me at: BreathtakingAwareness.

Note: Pulmonary Hypertension News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Hypertension News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to pulmonary hypertension.