On Friday 3 November it was PH Day UK. Together, with the PHA UK and other PH patients, parents and carers we put Pulmonary Hypertension in the spotlight and started our awareness campaign.
Here are my posts from the day...
Because oxygen isn’t getting around the body properly lots of people with PH suffer with severe breathlessness. Other symptoms include; chest pain, feeling tired of dizzy, swelling in the ankles, arms or stomach area and fainting.
PH affects people’s abilities to carry out basic activities, such as climbing stairs or doing a supermarket shop, but often the symptoms aren’t too obvious to others.
 |
Some of the challenges of PH can't be seen on the surfaces... relationship problems, anxiety and fear, worry, depression and loneliness. PH affects people both mentally and physically.
You can’t just look at a person and know they have PH. Many PH symptoms are invisible meaning that people with PH often look "well" - Remember that not all disabilities are visible!
There are eight specialist pulmonary hypertension (PH) centres in the UK and Ireland which look after people with PH.
I am very lucky to have such an amazing PH team supporting me on my PH journey. So a big special shout out to the PH team at the Royal Brompton Hospital. Thank you is not enough for all you have done and for being there for me every step of the way of my PH journey.
You may only visit your specialist PH centre once or twice a year, although sometimes you may need to visit it every 3 or 4 months. So it’s important you make the most of your visit. Of course, your PH specialist team will be available to answer any questions or concerns you have in-between appointments too.
Remember to always ask your specialist PH.
Many patients with PH have carers, but most carers are not always qualified and regularly paid. A lot of carers are partners, parents or family members.
Being a carer for a loved one is very difficult, but they do what they can for the person in need as they want the best for them. It can be strenuous and can cause tensions within a relationship, especially when, like many PH patients, PH is diagnosed mid-relationship. Life as what they once knew is suddenly turned upside down, affecting them mentally, physically and financially. Many couples have had full time jobs, cut to just one working or even neither.
The hospital trips, doctors apts, caring at home - sorting meds, etc… Being a carer to a PH patient can be a full time job, and most are UNPAID! But they do it out of love, as the marriage vows say, “in sickness and in health.”
Many patients feel guilty and feel like a burden, but with love and support, they do get through the good and bad times together. Yes it can be difficult, but it can also make them stronger.
Being a carer for a loved one isn’t always doom and gloom and many still have a wonderful life together, despite PH being a part of it. As Terry said in his carers blog, “Together, we can do this.”
We raise awareness for those who are fighting and living with PH right now, but for also those who have sadly had their lives cut short due to this cruel condition. When diagnosed with PH, the life prognosis is very hard to accept and for many each birthday is a major milestone.
The PH community is like one big family and many of us have formed close friendships because we understand what we are each going through. Sadly over the years of living with PH many of us have lost PHriends (friends with PH). Each time it hits our community very hard and we all feel a great sense of loss. We may have never met our PHriend, but still the connection is there as we all talk on our PH group and we support each other through the good and bad times of living with PH.
It never gets easier when we lose a PHriend, because we all know how hard that person has fought against PH and the battles they’ve had to endure every day of their lives. Everyone with PH is an inspiration to their friends, their medics and their loved ones.
We call ourselves PHighters, because despite everything we go through we fight every day to try and live a normal life. Sadly not everyone’s fight is won and so today, I ask that when you get a moment, please raise a glass or light a candle to remember our dear PHriends.
Today and many other events for those with PH across the UK happen because of the wonderful people who work for our amazing charity, the PHA UK.
The PHA UK are the only charity in the UK dedicated to supporting people affected by the rare disease pulmonary hypertension (PH).
Also something that definitely needs a mention and that’s their fabulous and award winning (and that’s gold awards) PH magazine, emPHAsis.
Here are some of the things the PHA UK do…
* Support people affected by PH to enjoy a better quality of life
* We raise awareness of PH to encourage understanding and earlier diagnosis
* Provide research grants to academic and healthcare professionals to improve the way PH is treated and managed
* Carry out our own research to understand the needs of people affected by PH
* Oganise our own training for healthcare professionals to obtain the specialist skills required to treat people with PH
* Provide a platform for the patient voice to be heard loud and clear
Thank You, Pulmonary Hypertension Association UK for all that you do and for all the hard work you put in for those with Pulmonary Hypertension! YOU ARE THE BEST!!
Living with PH has it challenges, and PH affects all PH patients in many ways.
I obviously haven’t covered everything about Pulmonary Hypertension; but here’s a last few and important words for you to take with you.
