Saturday, 12 October 2019

There Is Always Hope

Dear Readers,

Sorry I haven't posted a blog lately, but I've not been feeling well for quite a while now. It's been really difficult as I had been doing so well, especially with exercise, but all of a sudden I hit a drastic decline. I've been suffering from severe breathlessness, fatigue and chronic pain. Walking from the lounge to the bedroom, has been so difficult, I've been gasping for breath. 

Even though I am staying in a lot more as I don't feel up to doing much, I am still going out and getting on with my life as much as possible. Luckily I have Izzy which means she needs to go for walks, so I get some fresh air that way and sit on a park bench and throw the ball for her! Plus I've still able to continue my music teaching as it's from home and I do enjoy working and keeping as active as possible.



I put my symptoms down to lack or iron, as this always causes my symptoms to worsen. I went and got a blood test from my GP and yes they were urgently low and so on the 4th October I went and had my iron infusion. I know that it will take a couple of weeks to kick in and get fully into my system, but I'm hoping for a big change very soon. 


Yesterday Terry and I were up bright and early for my usual PH clinic appointment at the Royal Brompton Hospital. I had the usual tests, my ECHO, bloods and 6 minute walk test. Below is a picture of me having my ECHO done, yes I had fallen asleep! Haha! It's so dark and warm in there and I was so tired, it was actually quite nice to rest, and he could still get on with scanning! Result!


After the ECHO, I saw my consultant. I explained to her that I wasn't doing very well and we discussed my medication and what may be causing this, not that we really know. She believes I should already been feeling the affects of my iron infusion already, as it's been a week since it's been done. I believe it usually takes 2/3 weeks, so we've decided to see how I am in 3 weeks time. 

In the meantime, they are going to have an MDT meeting to discuss the next step for my PH journey. I didn't do very well on my 6MWT, in fact I couldn't even walk half of what I could usually do. I'm usually very competitive and try and make a personal best each time, but there was no way I was up to even walking fast yesterday. It was very demoralising!

I am hoping that I will be able to call up my nurse specialist in 3 weeks and say the iron has definitely kicked in now, I am doing much better and it'll be the simple fact of us all being patient and that I will get back to my full potential on my own. If not, I know that I am in the best hands being under the Royal Brompton Hospital and I know they will get me back on my feet and living life to the full as quickly as they can. I am returning for my next PH clinic apt in 4 months time, unless I need to go in earlier.


I am so fortunate to have such a wonderful husband, who pushed my around London in my wheelchair all day yesterday and the support I have from him and my mum is just incredible. I know I will get better soon and I know I have to be patient. The one thing I find hard about living with a chronic illness is the sudden downfalls and they will always surprise me and get to me each time. I'm also very lucky to have my Izzy, in my life to snuggle up to when times get rough.


Thank you for your support and kindness too. I am a PHighter and I will get through this!



Thank you for reading!