In conversation...
n o e f i l My n o i t a c i d e m V | Making the decision to start IV medication is complex, and as a working mother-of-two, Rinku Puri knows this more than most. She spoke to PHA UK Chair Iain Armstrong about life on a line, and what she considered before making the move.
I R
At what point was IV medication mentioned to you? How did you reach that point with your condition? I was diagnosed with PH in 2011 and for years I was stable on bosentan and ambrisentan. When my liver started being affected, I moved onto the epoprostenol inhaler, but the pressures were still not coming down enough, and my consultant thought that my heart was struggling at that point.
I R
Did you feel that worsening too, or was it just the measurements showing the deterioration? It was more my measurements; I didn’t feel it myself. I didn’t feel unwell enough to be going onto IV and I was resistant to it at first. After a bike stress test, my husband and I were shown all the evidence of the stress my heart was under - every graph and chart - and that really informed our decision.
AUTUMN 2021 emphasis 26
I
I know from listening to lots of people over the years with PH, that because advanced treatments like IV are more demanding, some people need to feel more unwell to accept them. It’s interesting that you made a joint decision with your husband when you were working this through. Yes, we both asked questions and my husband read a lot around it. He helped me make an informed decision. He is very technical, so he was looking at the evidence base that was out there for this drug. He was looking at the analytical literature that I didn’t think about, as I’m more emotional and so looked at it at face value. He helped me work through the pros and cons, including the impact on life expectancy, so it felt like an informed decision that we made. He really helped me grasp that if I went onto this, it would be a
R
challenge - but that we could work through it together. I also spent time talking to people who were already on IV (who the hospital put me in touch with) and that really helped.
Rinku was diagnosed with pulmonary arterial hypertension ten years ago. She is married to husband Sunil and the couple have two adopted children. Rinku works as an Occupational Therapist at her local hospital in Coventry.
