Saturday, 21 July 2018

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!

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Thanks for reading!


Me & Hubby
Thumbs up!




Me and my Mum

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