Dear Readers,
I thought I'd write an update, as I last posted when I caught covid! To those who have had covid at least once, know how awful it is, but I'm thankful I got over it without any medical help. My husband, Terry, recently caught covid, but he's doing well. Funnily enough we both caught covid at different times, but never gave it to one another! Now Winter is on its way, we've both been flu vaccinated and I've had my 5th covid vaccination.
First of all, I have to mention this Friday 4th November 2022 is PH Day UK 2022. The PHA UK have decided to give a full day of raising awareness for Pulmonary Hypertension. Please do get involved by clicking here. Whether it's putting up posters, sharing people's social media posts, etc, it all helps. PH is still a rare and incurable heart and lung condition, so raising awareness is vital. Keep an eye out on my social media (PHighter Tess) for my contributions.
We had a great Summer and made the most of it by going to various concerts, holidayed to Ibiza and caught with our friends. Despite our jam-packed summer, I still managed to take it easy after a busy day or time away and rested as much as possible.
I also had my annual Royal Brompton appointment. It was the first time, in a long while that I've had every test, due to covid. Unfortunately, my PH symptoms have worsened as I get older and they have become more visible, this is because PH is a progressive condition. However, I can stay on the same medications for now. I just have to continue with my home oxygen therapy and which I use everyday, whether I'm at home or out and about. I'm always so grateful for the wonderful PH team at the Brompton for their continuous support with my PH, definitely don't know what I'd do without them, especially their lead PH nurse specialist, Carl.
I've recently added a new hospital to my list of hospitals, haha! Terry and I attended my ophthalmology apt at St Thomas’ as I’ve notice an increased decline of vision. Unfortunately Sildenafil & Tadalafil can affect eye sight, & I’ve been on these meds since diagnosis (over 14 years!) Also contributing is PH. Due to the lack of blood/oxygen to my extremities, legs, feet arms, hands etc, I get chronic pain, & it’s the same for my eyes. I don’t get pain, but a slow decline in eyesight. However it’s not just that for me, as we’ve discovered I have a hereditary eye-sight condition, which also doesn’t help! Anyway, after an hour of tests & scans, the ophthalmologist is pleased that there isn’t anything worrying with my eyes & they will continue to monitor me every 6 months.
As a migraine sufferer, I am always up for any tips and advice on how to deal with them. When I have a migraine attack, I am dreadful, I get the aura (no sight & flashing lights) sickness and thumping headache and this lasts the whole day and then feeling groggy the next. However a new tip I was given from my ophthalmologist consultant was having some liquorice and sucking on it as soon as a migraine comes on. I hate liquorice, but if it works, I make myself like it. I am yet to try this, but please let me know if this has worked for you!
I'm also an attendee of the PVRI Patient Engagement and Empowerment meetings every 3 months. It's amazing to be a member of this group and hear about the futures of PH from across the globe. PH is definitely in very safe hands with the wonderful PH consultants, nurse specialists and researchers from around the world.
We've got lots to look forward to; get-togethers with friends, events and also my birthday on 13th Nov. As a PH'er each birthday is another milestone reached.. it'll be my 14th year on since diagnosis! Wow! I'm also returning to the Brompton for further PH tests - there's so many, they just can't be all done in one day! However, we don't complain, as we know I'm getting first class care, and we do love a trip to London! As always, I will do what I can, balance it all out and make sure my health comes first, but still make sure I'm enjoying life. Here's to enjoying the last few months of 2022, gosh where is the time going?!
Keep safe and well. Thanks for reading!