Self-Isolation

Dear Readers,

I have been in self-isolation for the past week. I am a high risk and vulnerable patient, so I have to keep out of public places as much as possible. I know self-isolating for so many weeks is going to be pretty difficult, but my health does come first.

Us PH'ers have had huge support from our charity, PHA UK. They have released many videos and posts advising us how to cope with Coronavirus.

I have printed off this poster and stuck it on the front door. These are fantastic and there are many versions of this poster which can be found here!

                      

I've managed to continue my music business, Music TNT, by transitioning my music lessons to online via video call. One of my biggest worries was my music business and I know I don’t work many hours because of my health, but working helps me both financially and mentally. They have all been a success and I’m really pleased that even though some of my students aren’t able to do this, they are waiting for me to return to face-to-face teaching. So I haven’t lost any students due to this Coronavirus, yay! I’ve just got to keep myself well during this time and even if we go into lockdown we can keep playing music! So if you're at a loss and bored in isolation, give me a call or email and we can make music together online!! My music business is now on Facebook, so please like and support my new page here!

I will definitely keep you updated with how I'm getting on in self-isolation, so keep an eye out on new blog posts, Facebook posts and YouTube channel! 

Thanks for reading!

COVID 19 Pandemic

Dear Readers,

Please watch my video on my feelings of the COVID 19 - Coronavirus pandemic.

Like many of you I’m regularly following the news regarding the Coronavirus. A lot of people think this is a big hype, but when you have a chronic illness, it is still very worrying. Before this pandemic, I worried about getting the flu or pneumonia. All viruses are killers to me. 

Having PH makes me a high risk patient and it is scary to know that if I caught Coronavirus I could potentially die. 

My heart and lungs are already working at their full capacity, so with the coronavirus on top it would be too much for my organs to handle. 

I am going to self-isolate and social distance myself from others. It isn’t going to be nice and I’m not looking forward to it. 

I have been very worried about my music teaching business, but after speaking to other teachers in my situation, I haven’t closed altogether. I have transitioned to online lessons for those who want to continue during this time. I may not be doing many hours due to my PH, but every little helps.

We are very lucky that Terry has a strong and stable job to help us to get through this financially. 

This is a very worrying time for me and it will put a strain on me mentally. But I’m sure we will get through this and I’m very lucky to have Terry by my side, as well as my Mum. I will try to keep as strong as possible. 

I will return to my PH YouTube videos and more blog writing to keep me sane during isolation. Thank goodness I have my piano to play whenever I like too. Also the cuddles of Izzy. 

I hope everyone keeps as well as possible during this time. 

To my lovely my friends, thank you for your support and we’ll keep in touch through WhatsApp, etc. 

Another 10 Years

Dear Readers,

On 31st January I attended another appointment at the Royal Brompton Hospital for the Pulmonary Hypertension clinic. It's taken me a while to write my post-appointment post, because I've been slightly overwhelmed.

This year I turn 30 and that number has been in my head since the day I was diagnosed. I was told at that time, people with my type of PH, which is PH with Eisenmenger's have a life span to 30 years old. I didn't enter 2020 thinking oh God, this is my final year on the planet, but it makes your mind go rather crazy. I think how have I gotten this far and lived such a wonderful life so far, but on the other hand, I think, I'm reaching 30, how much more life is in me? Yes it sucks having to think this, but when you live with a deteriorating illness, you are given statistics and facts about living with that illness and it wouldn't be human if I had these thoughts boggling around in my mind.

I know there are a few PHighters (people who fight PH!) that are doing very well with their PH and Eisenmenger's and are living life to the full and are over 50.. so I know since I was diagnosed the life span has increased and I am very hopeful that I will be one of those people.

So back to my PH appointment, we discussed how I was getting on at the moment. PH test wise, I have improved and I am stronger, but right now I'm feeling rather crappy. We've put it down to the cold weather as this really affects my breathing and I'm back to struggling to walk any distances without getting very breathless. It also means I've been on the O2 a lot more than usual to get through these cold days and nights. I say, bring on the Summer!! Also I'm low on iron again, which also makes my symptoms worsen, so I'm booked for another iron infusion this month.

We discussed future medication and found that there a few medications which aren't suitable for my type of PH, so that's less options for me in the future. However my consultant told us they're working in the backgrounds to bring out more meds that should suit me and they're hoping they'll be ready within the next 10 years.

I am currently on Sildenfil, which I've been on for the past 12 years, and most recently I moved to dual therapy and went on to Macitentan last year. Fortunately, I have taken to this therapy very well, which is why PH test results have improved. 

My consultant told me that when my body stops taking to this therapy, my only medication option is Epoprostenol through a Hickman Line, which is a long, flexible plastic tube that is inserted underneath the chest wall skin and into the large vein draining into the heart. This also means I will be put onto the transplant list at the same time, to hopefully receive a double lung transplant.

Extract from PHA UK - Epoprostenol is given intravenously (injected directly into a vein) via a permanent catheter (a thin, flexible tube that is inserted into a vein). This catheter is called a Hickman line or a Groshong line. Prostanoids are continuously pumped into the body by a portable pump. It must be given this way because the medicine only lasts for a few minutes in the bloodstream. The pump attaches to the Hickman line via a thin plastic tube. The pump is worn attached to a belt around the waist or carried in a small shoulder pack. Smaller children usually use a secure backpack.

But the good news is that my consultant believes that I will be on my current dual therapy for around 10 years, yay! So another 10 years has been added onto my lifespan!! All in all, it was very good to talk about my future plans, yes it's scary having to have these talks, but it's good to know that a plan is in place, even if life doesn't always follow them! Howevever, I am ever so grateful that I've got such a fantastic PH team at the Royal Brompton, who are looking after me and making sure I am able to live the best quality life I can. So cheers to another 10 years of keeping positive and keeping up the PHight! Also with the love and support from my biggest supporters, I know they will make sure I continue to live life to the full.

Thanks for reading!