8 minute read
Words of wisdom
from Emphasis Winter 2021
by phauk
WORDS
OF WISDOM
experts by experience FROM THE Medical professionals play a vital role in helping us managing our health conditions, but advice from those with lived experiences can make a big difference too. We asked seven PHA UK members what they would say to someone newly diagnosed with PH. Julie Royle, diagnosed with PH in 2012 “Have an open dialogue with your specialist centre and your specialist nurses. The best thing you can do is talk about it. I didn’t, and when I look back, I realise I would overthink things but sometimes I wouldn’t talk about them. Half of the time it was because I didn’t want to accept what could be happening and what the future could be. I was trying to deny what was going to be the rest of my life. But talk to your family, and don’t hide anything.”
Kevin Rowland, Julie’s partner
“My advice for a partner or loved one is to learn as much as you can about what PH is, and not just what appears on Wikipedia. Learn from the professionals and know exactly what you are talking about. Then just take each day as it comes - and keep a sense of humour.” Tess Jewson, diagnosed with PH at the age of 17
“There is help and support out there. Live life to the full. Pulmonary hypertension will change your life, but as I always say, PH lives with me - not the other way around. If I could speak to myself 13 years ago, before I was about to receive my diagnosis, the message I would give myself is that it’s going to be okay.”
Lynsey Childs, diagnosed with PH in 2015
“Don’t Google it! That’s the biggest mistake anyone can make. Read Emphasis, and anything that comes through from the PHA UK. Anything you can get your hands on that’s not fabricated, and anything to help. Ask your hospital if they know anyone around you [who has PH]. To begin with I didn’t know anybody with PH. I’m quite lucky that I’ve now met a few people, not too far from where I live, and they are like family. I can probably talk to them a lot more easily, and more openly, than I can to my own family - because they understand.”
Andrew Sweeney, diagnosed with PH in 2014 “Join the PHA UK private Facebook group. It’s a lonely illness - I haven’t met anyone in my area with it - and it’s very scary to be told these things [when you are first diagnosed]. If you go into that group, there are people [with PH] there to help you, day or night. So, if you can’t sleep, there is always someone there who will answer any question. And I find it reassuring that there are people on there who were diagnosed 20 years ago, and they are still alive, and still living with their own heart and lungs, and on oral medication - like I am. That is such an uplifting thing to read and listen to.”
Find details of our Facebook groups on page 35.
What advice would YOU give to someone newly diagnosed with PH? Send an email to media@phauk.org with ‘My Advice’ in the subject line, and we’ll include as many as we can in the next issue of this magazine. Pam Fenton, diagnosed with PH in 2018
“Listen to your doctors and do what they say. Know your limitations, and don’t let anyone tell you what you can or can’t do. Put yourself first; you’ve got to be selfish. If you get up in the morning, pat yourself on the back - and if you go and make yourself a cup of tea, give yourself another one. Embrace what you can do, and don’t worry about what you can’t.”
Lou Chadburn, diagnosed with CTEPH in 2012
“Take each day at a time and take in all of the information that is given to you. Yes, it is scary, but don’t let your fears overcome you. There are things that people can do for you. Communication is a big thing. Talk to someone you love. I used to bottle things up and start to cry for no reason, but my husband encouraged me to talk, and I started to get things off my chest. The experience has changed both of us, as we now speak our minds more.”
Meet DrQuyam
Dr Sadia Quyam is now eight months into her role as Consultant in Paediatric Cardiology and Pulmonary Hypertension at Great Ormond Street Children’s Hospital (GOSH). We caught up with her to find out more about her motivations, inspirations, and what the future might look like for the treatment of PH in children.
Welcome back to the world of PH, Sadia! Could you tell us what brought you to your current role at GOSH? "I trained in London; at GOSH and the Royal Brompton Hospital, with a year as a Magnetic Resonance Imaging (MRI) research fellow at the University College London Institute of Cardiovascular Imaging.
I also spent a short time in San Francisco with the PH team there, and my previous role was as a Peadiatric Cardiologist at the Evelina London Children’s Hospital.
My sub-speciality training was in peadiatric PH here at GOSH, so it’s really nice to be back doing what I enjoy the most and seeing some familiar faces.
I first became interested in PH really because of Dr Shahin Moledina, who is the lead for the peadiatric service here at GOSH. I was quite a junior doctor at GOSH, early in my training, when he took the time to explain some of the basic principles of PH to me. This definitely sparked my interest and made me want to learn more!
Once I had the opportunity to work in the service I was so impressed by the whole team, it very quickly became something I wanted to be a part of. I believe strongly in what the service is for and what we have the potential to achieve, so it’s my dream job really.
What does a typical day (if there is such a thing!) look like in your job? "I start and finish my day generally in the same way; by cycling over the river on Waterloo bridge. The view is amazing at both times of the day and really puts me in the right frame of mind.
After that (and most doctors probably say this) one of the great things about my job is the variety. My work is mostly direct clinical care, sometimes with in-patients, in clinics, or seeing patients and families who come to see us for a full day assessment.
I also have a role in education and training with the junior doctors and when I can, I also try to spend time working to develop the service and keeping myself up-to-date."
What are you enjoying most about it all so far? "I am enjoying pretty much everything about being back! We are a small team and I feel very lucky to work with such inspiring, hardworking, and kind people. At the same time, I am enjoying
seeing some of the patients I met very early in their journey and hearing their stories.
For me, there is something about this role that feels like coming home, and I am very much enjoying that feeling"
What do you think the next 5-10 years might look like in terms of the management of PH in children? "Things have definitely changed in the time I’ve been away from the PH service. I think looking forward, our understanding of genetic causes will move us towards personalising medicine.
If we can better understand the differences in the types and causes of PH, then our approach will change from titrating medication to current measures of severity, towards a more complex approach that looks at a certain type of PH, in a certain age of patient with a certain genotype etc.
At the same time, we will find more targets for drugs so this new understanding will inform our approach to their use. I think this will also be informed by better design of the systems we have for the approval of these medications, particularly for children. Then my hope is that we will see improved access to high quality care, particularly in middle and low-income countries. "
Who, or what, inspires you in your career? "I probably wouldn’t say a single person, but as you go through your career you meet many inspiring people.
Often, I will see the way someone approaches a problem or communicates something difficult, and it inspires me to develop those skills in myself.
When I trained there were not many women in peadiatric cardiology. Dr Helen Spencer [Respiratory Paediatrician and Clinical Lead for the Lung Transplant service at GOSH] was definitely someone I looked up to and saw as a role model [at that time], and I still do.
I think it would embarrass him very much if he read this, but Dr Shahin Moledina has certainly had a huge (positive!) impact on the kind of doctor I am as well.
The PH team in San Francisco are also very inspiring in the way they work as a team and their dedication to their patients. But really, the inspiration to be better is everywhere; from friends and family, and colleagues in other specialties and in research, to the patients and families we treat."
Finally, how do you like to relax away from work? "I take a weekly yoga class and am also part of a local running club. I won’t pretend to excel at either but it’s fair to say I’m better at stretching than at running.
I grew up in Yorkshire and I miss having so much natural beauty on my doorstep, so I try to get back up there as much as I can - which I hope is also preserving my accent."
