Twitter Curator

Dear Readers,

I am very excited to announce I'm going to be the NHS Curator on Twitter for a week from Monday 6th August.

This means I will be in charge of the NHS Twitter account and tweeting about Pulmonary Hypertension. I'll be getting it onto their platform and raising awareness for this condition every day for a whole week! I will be reaching over 35K followers!

The Pulmonary Hypertension Association UK are involved and have helped me to do a plan for each day, so this week is not wasted!

If any PH'ers has anything they want me to cover in this week, then please drop me a message!

So join me from Monday 6th over on Twitter @maritess_mt and @NHS and help me to spread the word on Pulmonary Hypertension!!!

#BreathlessNotVoiceless #pulmonaryhypertension #NoCureAlwaysHope

Positive Hospital Appointment

Dear Readers,

Yesterday was my quarterly visit to the Royal Brompton hospital in South Kensington. This time I went with my Mum as Terry had to work, but it went well and as always, we had a lovely day together after my consultation. I was dreading it a bit as I woke up with terrible leg pain and could hardly walk!!

I have had a really difficult few months with my health and I have struggled a lot with symptoms of PH; severe breathlessness, chronic pains, chronic migraines and daily nose bleeds which all led to me feeling pretty unwell!

I have sadly given up my work due to my health and to protect my heart. This was due to the stress of the long drive then having to work and then a long drive back had taken it's toll on my heart and I was finally advised by my consultant that I had to stop otherwise I would suffer even more and wouldn't be able to get back to where I am now. It's been very difficult to give up a job that I love, but I know I have new adventures ahead of me. 

So back to my hospital appointment. I had my 45 minute ECHO scan as soon as I arrived, they're not bad at all, just. a bit of gel on your chest to look at how my heart is pumping and working. I then went to my appointment and saw a PH consultant, who I don't usually see, but he knows me very well as he was at my diagnosis 10 years ago! I had a good chat with him and he brought up my ECHO scan results and my previous results and showed me that nothing had changed and my heart muscles is still strong and pumping well. There was nothing untoward in the results and after looking back to other previous results, he was very pleased it had remained basically the same since 10 years ago too! 

I am on dual therapy which means I take 2 different meds for my PH. I am on Sildenafil 3x a day and Macitentan once a day. Whilst in clinic, the consultant took my saturations in my hands and feet and was shocked to find out that the were 91% in my feet... they're usually on 75%! He was so shocked he took the reading 3 times to make sure the machine wasn't faulty... haha! He said it's definitely the new tablet, Macitentan, doing it's job properly! 

Overall all tests results were looking stable and after he listened to my heart and lung (yes lung, I only have one) he was pleased to hear that I sounded well. The 6MWT was so good last time, 3 months ago, I didn't need to do another that day! I was pretty relieved seen as my legs were so painful all day! He knows I have had a very difficult few months of health and we spoke about that, but he said that where I am at the moment he is very happy and told me that I don't need to return for another 6 months!!! Wahoo!

However, he did say, at the moment you are at a good point with your PH, but remember you will have bad days, difficult days and you will struggle. PH is a progressive condition, but remember who you are and that you will eventually bounce back! 

The consultant was also very pleased with all my PH awareness campaigns I was doing with my videos and my upcoming conference talk in Rome. So yeah, a thumbs up for today! 

Just before I leave, I want to say a huge thank you to everyone who has subscribed to my YouTube channel and for all the lovely comments and support I have received doing my weekly blogs! I really appreciate it and it's nice to know that I am making a difference and helping people with PH with these videos!

Keep up to date with my Youtube, Twitter, Facebook and Instagram by clicking the links here and hitting follow/subscribe!

Thanks for reading!

Me & Hubby

Thumbs up!

Me and my Mum

NO to Selexipag

Dear Readers,

Yesterday was a wonderful day for our superb England players reaching the Semi-finals, but for us PH'ers it was a VERY bad day!!

It has been announced that NHS England has again REJECTED a new drug that helps to improve quality of life to those with Pulmonary Hypertension. 

Extracts from Ferguson Mary. 07.07.2018. Press Release, exceptionally unjust and grossly unfair. PHocus2021 [online] 

“The Pulmonary Hypertension Association (PHA UK) has been campaigning hard for Selexipag to be available in England, following positive decisions in Scotland and Wales. Today, 7th July, NHS England announced that an earlier decision not to approve the drug would be upheld.”

“Iain Armstrong, chair of the PHA UK, said: “As a patient organisation we know the rejection of this drug is exceptionally unjust and grossly unfair. The symptom burden of pulmonary hypertension is substantial, so access to any drug that may improve outcomes for these patients is vitally important for their health and wellbeing. An urgent review is needed on decisions regarding new therapies available for PH currently blocked or deferred by national funders. As a PH community we want the same equality and access to treatment as other disease areas like cancer. We are extremely disappointed by this decision and as a dynamic patient organisation we will continue to fight for equality and equity of access to service provision in the UK.”

I also contributed to this press release by saying, 

“Living with PH is difficult enough without having drugs being rejected. My message to NHS England commissioners is this: How do you think it makes us feel knowing there are drugs out there that can keep us stable and you’re keeping them from us?”

“Every day we struggle to live a ‘normal’ life with PH. Think about what we have to go through – the chronic pain and fatigue, the severe breathlessness, the tears, the frustration and anger and maybe you would understand why I, as a PH patient, am distraught at this decision. You can’t put a price on a life – but you’re making us pay with ours.”

“Selexipag, also known as Uptravi, helps to relax and widen the pulmonary arteries, relieving symptoms of pulmonary hypertension and slowing down progression of the disease. It is taken as a tablet, providing an alternative for the first time to drugs usually only available intravenously or by inhalation.”

To read the full press release, click here

It is going to be reviewed again in November but as always, we thankfully have the PHA UK fighting for us and they will continue fighting until this drug is approved! Let's hope November will be the month of celebrating my birthday and the approval of Selexipag! #NoCureAlwaysHope

Thank you for reading.