PH DAY UK

Dear Readers,

On Friday 4th November 2022, it was PH Day UK. For this day, I of course got fully involved and decided to make a post about Pulmonary Hypertension every 2 hours from 8am-8pm. IT was good fun to be a part of a very special day for those with PH and I am sure we raised a lot of awareness and reached many people that day. I saw many posts shared from my PH friends and it was admirable seeing those who had taken part in "going the extra mile" as well as organised fundraising events. We're so lucky to have such a wonderful PH community. A huge thanks to the PHA UK for organising PH Day UK, I sure think it was a success! If you missed any of my posts, or you want to have a read (you never know you may learn something new!) then please continue reading.... 

It’s PH Day UK and I am excited to dedicate my posts to raising awareness for all those who suffer and have suffered with Pulmonary Hypertension. Raising awareness for PH is so important because it is still an unknown condition and needs to be accepted into today’s society. I am going to inundate everyone with tonnes of information about PH every 2 hours! I am super lucky and thankful to still be here living life to the full, despite having PH, as well as very grateful to all those who continue to support me throughout my ups and downs of living with PH. PH is an incurable and progressive heart and lung condition and many of us will need a double lung and/or heart transplant to be cured. PH is a crippling condition which fortunately for many can be invisible, making it even more difficult for PH’ers to live with. Please share any of my posts and let’s use this day to reach as many people as we can! Thank you for all of your support!

So what is Pulmonary Hypertension? The question that continually gets asked and I am always happy to explain. Pulmonary Hypertension is a rare and serious condition affecting the heart and lungs. It is NOT high blood pressure. Just 7000 in the UK are diagnosed with Pulmonary Hypertension (PH for short). It can affect anyone, regardless of age or ethnic background. Although, it is more common in women. PH causes the walls of the pulmonary arteries to become stiff and thickened, or blocked by blood clots making it harder for the right side of the heart to pump blood into the lungs to pick up oxygen. It’s a bit like squeezing a hosepipe. By narrowing the pipe water comes out at a higher pressure and spurts further. This extra workload placed on the right side of the heart can put it under strain leading it to become enlarged and then not working properly. 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 or dizzy, swelling in the ankles, arms or stomach area, 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. Many patients feel their condition is a frustratingly INVISIBLE illness. It can also have a significant impact on emotional and mental wellbeing.

Those with PH are very fortunate in the way that there are many medications to help to keep us stable. There are different forms of medications from tablets to intravenous to surgery. There is also oxygen therapy too - Some patients are on this all day every day, whilst others have it when needed. Medication can be taken as a single, double, triple, etc therapy and many of us have to take it throughout the day. These medicines are not a cure, but they keep us going every day. They help to keep our PH stable and when a certain type of medicine stops working as well as it should, we usually have to change to the next step. This being a higher dose, a new medicine, the IV line and lastly a heart and/or double lung transplant. We are very thankful for these medicines and yes sometimes we have to battle through some dreadful side effects, but we persevere as we know that they are helping our PH. Sometimes we can’t handle the side effects, so we have to change medicines altogether. It is thanks to our charity, the PHA UK and NHS professionals in PH that we have the medicine we do now. They fight for us to get the medication free on the NHS and approved around the UK. They are our voices and they do so much to make sure we are getting the best treatment we can to try and live a normal life. Since I was diagnosed 14 years ago medication has advanced so, so much, and I am sure that it will continue to advance and can only get better as years moves on!

There are nine 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. The doctors and nurses at your specialist centre will help decide the best treatment for you. They will talk you through your treatment and how to take it, and answer any questions you might have. 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 team if you have any questions about your PH treatments.

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.
 
                                                             

And finally I want to give a huge shout out to our wonderful PH charity Thank you so much to all those who work for the PHA UK and for all your hard work that you do each and every day. We, in the UK are very fortunate to have such an amazing charity supporting all those with Pulmonary Hypertension. The PHA UK go above and beyond, they work with healthcare professionals, fight for new medication, give grants to advance research, release free publications, organise media awareness and member events and generally be a support to all of us. This is charity is all run on the donations they receive from those who fundraise for them, meaning that membership is also FREE. They have done so much for me, I can’t thank them enough for being so wonderful. The PH community is like no other – a unique group of people committed to supporting each other and raising awareness of this serious condition in the hope of one day, finding a cure. They also have a fantastic double gold award winning magazine called Emphasis, for those who are members. If we need help with any forms, they are there, you want advice, they are there. So please support the PHA UK and help them to help us to raise awareness for PH. They also have a range of merchandise and a sister website - go and check it out!

Wow what a #PHDAYUK that was!! I just wanted to say one last thing and wrap up with this poster. It's perfect for me as I've spoken so much and so passionately to help those who have invisible disabilities, just like some of us PH'ers. I could talk forever and forever about Pulmonary Hypertension, but I think I inundated you with enough posts and information yesterday! A big thank you to all those who joined in by commenting, liking and sharing my posts... I hope we reached many people and someone has learnt something new about PH. Huge congrats to all those who participated in "going the extra mile" and continue to fundraise - well done! Sending a big squeeze to our loved ones who support our PH journeys. Forever raising awareness for PH and PHighting to live each day to the full. As I always say, there’s no cure, always hope. Here’s to all the PHighters, we’ve got this! And finally, thank you SO much to all my followers and supporters, your support doesn't go unnoticed.

Thank you for reading!