My life on IV medication

My life on|V medication

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.

IAt what point was IV medication mentioned to you? How did you reach that point with your condition?

RI 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.

IDid you feel that worsening too, or was it just the measurements showing the deterioration?

RIt 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. 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.

RYes, 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 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.

Rinku and her husband Sunil "...I can go anywhere now. I just look at the environment. Last year we went on holiday to Canada..."

IWhat were the main worries or fears that were causing barriers? What did you need to understand more about?

RIt was the basic things in life. How do you shower with this? How do you carry the pump around with you all day, every day? How do you sleep with it? How do you travel with it? It was those anxieties for me. I’m completely independent and I work full time on a busy hospital ward - how would it impact my life? It was scary but doing all the research and talking to people really helped with that. And now, after four years with it myself, I can tell others about it too.

IIt’s really important to hear other real experiences. As a nurse consultant, I can tell patients what it is like, but there is nothing quite like hearing from someone who has lived with it themselves. What were the main questions you asked your specialist team when coming to a decision about IV? R The main ones were: How is this going to change my pressures? How is this going to change my condition, and what impact will that have on my life expectancy? We needed to hear how the medication was going to prolong my life or give me energy. I also had questions about other options in the future (because of the research that’s always going on) and how the dosage might change.

IAnd when you made the decision, and then the transition, what was it like going home after getting used to administering the drug in a hospital setting?

RI was allowed to come out for four days (on ‘weekend leave’) but I had the number for the nurses. Every night I had an issue with my pump so that was quite scary. There was a lot of problem-solving, but I was very organised and my husband had been trained up on it all too. IWhat have been your main challenges with the pump?

RI had to work out how I was going to wear the pump and what would be comfortable. Some people like to have it over their shoulder. I like to wear mine in a pump bag, and I just have it around me so it’s tucked away, out of the way, and I can get on with things. When going out and about, I have an extra ‘emergency’ bag. I leave it in the car with everything set up, so I don’t have to worry about it each time. You also have to work out what’s best for you in terms of showering and sleeping. Some people put the pump in the bed with them, but I put it on the side table. When I’m showering, I put it on the hook and shower quickly. It’s just a case of working out those things. You need to have a look at your environment, how things are set up at home, and work out the best way for you.

"Some people like to have the pump over their shoulder. I like to wear mine in a pump bag, and I just have it around me so it’s tucked away, out of the way, and I can get on with things."

The family can still enjoy seaside holidays

IIt sounds like planning has helped you, and I presume it then becomes much more of a reassurance and a routine?

RYes, I can go anywhere now. I just look at the environment. Last year we went on holiday to Canada, and I thought about where I was going to make my medication (so it was a clean and sterile environment), where I was going to shower, and how I would make sure no one touches the pump or pulls the line.

IWhat’s it like with the children? How did they get used to the pump and the line?

RMy boy was very little when I went onto the pump, and he has been used to it from the start. He calls it Bubbles, and my nieces and nephews now do the same. He knows I’ve got this ‘poorly’ on me, and he’s not allowed to touch it. He’s also aware that sometimes mummy needs extra time, or that she can’t run around and do things. I was naughty and gave him some syringes to play with, so he was familiar with all the technical bits. He never touches anything or does anything with the pump. He has tugged on my line by accident when I’ve been playing with him, but he knows that he can’t step on it or touch it. With both of my children, we’ve always been very open and encouraged them to have a feel and a play with the pump.

ISo, thinking about everything we have discussed, what have been the biggest benefits for you in terms of going onto IV therapy?

RThe fact that I haven’t deteriorated, and I’ve got a lot of energy. I’ve got two kids, and I work full time, so that’s important. It’s given me the confidence to go out and do things more, and not worry about being too breathless. Even though I probably don’t feel it, I know it’s helping my heart and lungs. All my walk tests have improved and I’m able to do a lot more. If I hadn’t gone onto the pump, I think I would have struggled. I’m here, four years down the line, and it could have been a very different story.

IIt is good to hear such a positive response to treatment. People have different responses – and not everyone can work full time with children. But it sounds like being on IV therapy is reassuring for you. What advice do you have for others in the process of making a decision?

RSpeak to your PH centre. They are the experts - so ask any questions and mention any fears. Make an informed decision, but at the end of the day, you’ve got to remember you’ve only got one life. I’ve done everything I wanted to do and probably would have done even if I didn’t have the IV - but with it, I’ve been able to do more. .