Saturday, 25 May 2019

PH Clinic Time

Dear Readers,

On Friday 24th I returned to the Royal Brompton Hospital for my PH clinic. Terry and I got up bright and early and made our way to Westfields, Stratford. We are signed up to theSmart Parking meaning we only pay £6 to park there for the whole day and going so early we can get a space near the shop entrance without using my blue badge. I like taking it into London with me should I need it for proof of disability for any reason - we like to explore and do things in London after my appointment.

Armed with my oxygen we grabbed some breakfast and then took the underground to South Kensington. Due to the amount of stairs and walking on the Underground, we choose the most accessible route. We arrived at the Brompton early, for once, haha, and I went in and had my ECHO. To those who have an ECHO, I don’t know about you, but I nearly fall asleep in there! I’m usually being scanned for 45 minutes-hour and with it being so dark, and stuffy, it makes me want to nod off! I swear I’ve slept through many scans! Haha!

After my ECHO, we walked over to my PH clinic, where I saw Carl and Stuart, our PH nurse specialists, sitting in the waiting area. I “ran” up to them and said hello, then waited patiently for my appointment. Today I saw Dr McCabe and overall it was a positive consultation. My ECHO showed that there wasn’t any change or deterioration with my heart! Yay! My medication is keeping me stable and he was happy with how I was looking and doing generally. So a great appointment!

After my consultation, I did the dreaded blood tests... it worked first time, phew! I may have to have them every month, but still hate them, haha! Afterwards, I did the 6 minute walk test... this is to see how far I can walk in 6 minutes. And yes I have BEATEN my personal best distance again!!! I know I haven’t been exercising for too long, but it definitely helped. Ever since the conference and being told that exercise is good for us, I now go jogging with Izzy every morning. I don't go that far due to breathlessness and I have to make sure I rest, as I don’t want to exert myself, but I hope as I get stronger, I can slowly increase my time and distance.

Overall, it was a very positive appointment and I am very pleased that each time I have visited the Brompton, not only am I improving my 6MWT, but I am staying stable and haven’t had any deterioration. Yes I will still have my good days and bad days, but I am making sure that I will fulfil my dreams and live life to the full. I will return to the Brompton for my next appointment in 5 months time... I'll be nearing another birthday milestone of 29 years old! Wow! Who would've thought I would be as stable as I am at this age! Until then I will keep living life to the best of my ability and know that when I have bad days, I will bounce back and good days will outweigh the bad.

After my appointment, I was feeling well, so Terry and I decided to make the most of our time in London whilst the sun was shining and we went to Hyde Park. We had a lovely picnic and then went on a pedalo on the lake - Terry did the majority of the pedalling!! 😂


Thank you for reading!


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