This week 2-8 November 2020 is PH Week 2020. I am looking forward to sharing lots of information on Pulmonary Hypertension to raise awareness for those with PH. I hope you learn something new about PH. Even if it’s only one person that learns something new about this deteriorating and incurable condition, then I’ll be happy.
Day 1 - What Is Pulmonary Hypertension?
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.
There is NO cure for PH.
But it does respond to a range of highly advanced treatments. Sometimes, lung and/or heart transplants are required.
Day 2 - Our PH Specialists
There are nine specialist pulmonary hypertension (PH) centres in the UK and Ireland which look after people with PH.
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. That is what they are there for. (words extracted from the PHA UK website)
Day 3 - Remembering Our PHriends
Today I want to dedicate my post to our PHriends who have tragically lost their fight against PH.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.
Day 4 - The PHA UK - Our PH Charity
Today I want to give a huge shout out to our wonderful PH charity Pulmonary Hypertension Association UK. 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.
Set up in 2000, PHA UK has grown to a membership of over 4,500. 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.
The PHA UK have also partnered up with Anxiety UK, meaning those with PH can quickly get the help they need when living with PH becomes too much, affecting their mental health.
Also, did I mention, they have a fantastic double gold award winning magazine called Emphasis, for those who are members, which is sent our quarterly throughout the year.. the issues get bigger and better each season!
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 you can buy to help spread awareness. You can get involved with them on social media via Facebook, Twitter and Instagram and you can learn more on how to get involved via their website... https://www.phauk.org/get-involved-with-the-pha-uk/
Day 5 - PH Medication
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 12 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!
Day 6 - PH Symptoms
There are many symptoms with Pulmonary Hypertension and a lot of symptoms can often be mistaken for Asthma. Sometimes many patients are misdiagnosed with Asthma, before getting their PH diagnosis. Some of these symptoms mean that people with PH often look "well" because their symptoms are invisible. Remember that not all disabilities are visible!
Here are some of the symptoms that patients with PH suffer with:
Breathlessness - patients suffer with shortness of breath, especially when doing any physical activity. Household chores become very difficult, even getting dressed can be exhausting. Patients are unlikely able to climb stairs or any inclines. To help them get around they can use oxygen and/or a mobility scooter. Some even have a blue badge.
Fatigue & Dizziness - patients suffer with fatigue and dizziness. A lot of people with PH get tired very quickly. Some people may have to stop doing tasks and have a break, before returning to what they we doing. Rests and naps are needed during for the day for many patients.
Chronic Pain - patients suffer with severe pain through out their body. Pain can be in the chest, the arms, the legs, anywhere. These pains can be helped with the use of painkillers, such as Tramadol. Pain can be so bad it causes upset and frustration.
Fainting - patients suffer with fainting and this can be caused by any other symptoms. Some patients know when they feel to dizzy and may faint, so they have to sit down as soon as they feel faint, to hopefully stop them from fully collapsing.
Swelling in Ankles - patients can suffer with fluid in the body and this can lead to swelling in the body. Ankles, wrists and stomach can become very swollen and painful. Again there is treatment to help this symptom.
All symptoms are very difficult to live with and can impact not just our physical health, but our mental health too. A lot of these symptoms are invisible, which makes it hard for people to know we have a disability. Some symptoms causes patients to not be able to do anything for a whole day. Plans are sometimes cancelled last minute as symptoms can flare up at anytime. Please be patient with those with PH, as it is very difficult to live with every day. We know people who don't have PH don't understand the daily struggles, but please try and make time to understand what we have to go through every day.
So today is the final day of PH Awareness Week 2020
Having a condition like Pulmonary Hypertension makes life very difficult for many reasons, but here are 4 important points to take with you...
1. Rare - Just 7000 people in the UK are diagnosed with Pulmonary Hypertension.
2. Serious - It is a serious condition which affects the heart and lungs. A condition that is deteriorating and incurable, which leave many patients needing a heart and/or lungs transplant.
3. Invisible - PH can be invisible. 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!
4. Misunderstood - PH is often misunderstood as hypertension (high blood pressure). 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. 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.