Monday, 25 July 2016

You are your own maker

Dear world,

Last week I was notified by Facebook that it was my one year anniversary for the writing of my first blog. I’m still in shock at how time has flown and what a journey of a year I’ve had. I remember a wise owl telling me when I reached 30 that time would just flash before me, they weren’t wrong!
This time last year I was really starting to decline quite rapidly. My hospital admissions were becoming ever so frequent and for the first time since diagnosis I was starting to take considerable time off work. I was exhausted all the time from waking up to going back to bed, literally no energy whatsoever. I spent a ridiculous amount of time in bed and I was using my wheelchair for normal day to day living. I genuinely thought this was it, the start of the decline. It was August last year when the doctors braced the subject of going down the double lung transplant route. We were starting to think about trying me on new medication including the dreaded IV medicine which would have meant having a needle 24/7 constantly into my heart to keep it working. Needless to say I was not in a good way. So to look at me now and how I am feeling is nothing short of a miracle.
As some of you will have seen on my FB post back in June, I received the best news from my doctors since being diagnosed. My heart size has reduced significantly, therefore meaning the heart isn’t having to pump as hard as before and also no longer classed as being in heart failure mode; my pressures in my pulmonary artery had reduced from a staggering 69 to an almost “normal” 29!!! (Just for context, a “normal” persons’ pressure on average is anything from 6 to 12). I managed to walk 690m on an incremental shuttle walking test (the year before I managed 250m); I am now stage 1 (best level for someone with PH) at diagnosis was classed as stage 4 (worst level); going from every 3 month review to yearly and best news of all, they are taking me off the assessment programme for double lung transplant. Yay!! No words will describe how I was feeling when they gave me my results, but all I can say is then and now 6 weeks on I feel extremely lucky that for the time being I am being given what I feel is a second chance at life.
I used the word miracle in my earlier paragraph. The definition of a miracle is “an extraordinary and welcome event that is not explicable by natural or scientific laws and is therefore attributed to a divine agency”. I’m not religious enough to think there is a being that is looking over me, although through the dark times I have felt that fate has taken me on various paths to get me here today. I am putting my “miracle” down to a number of different things.
Firstly, the medication. If it weren’t for the medication I wouldn’t be here today. That is a proven fact with PH that without treatment it is fatal. I just think my body has taken quite a while to adjust to the medication regime, as whilst it is only oral tablets they are still very invasive and dangerous tablets to take. One of my tablets can cause my liver to become damaged therefore I have regular blood tests to ensure that my liver isn’t in too much danger. In my first year of diagnosis I was taking 20 tablets a day, of which 5 of them were PH related. The other 15 were to try and reduce the side effects of these medications! It’s worrying that taking one tablet can affect other organs and therefore has a knock on effect; you then have to combat it. It’s a balancing and scientific act! In the last 3 months I have been able to reduce the amount of tablets I take to 10. The 5 are still the same for PH but I have managed to reduce the side effects by 66%! Pretty impressive I must say.
Secondly I am putting my “miracle” down to the fitness that I have been doing. Since coming back from Australia I have really been working hard most days on completing nearly an hour of fitness a day. It’s hard going and I feel absolutely wiped out after it but I just feel so much healthier. I rarely get chest pain these days and my increased cardio output means I can do so much more than I did before. My aim for when I next go to the doctors is to improve on my 690m walk. The reason why I had to stop last time wasn’t because I was too breathless or I got chest pain. It was because my legs just went dead. They became really heavy like lead. The reason for that was there wasn’t enough oxygenated blood being pumped around my body quickly enough. So my focus is to over time increase the amount of cardio I can do by increasing small amounts of cardio each week. Hopefully then I will be able to smash my 690m walk test.
Finally and I feel the strongest reason as to why I have managed to turn things around is my mental health. A lot of my friends and family said throughout 2014 and 2015 how positive I was. I thought I was too. I thought if you said you are positive enough times to yourself and not to let PH defy you that it would happen. I don’t think I was naïve to think this, I just think it was my coping mechanism at the time. So what changed? Hindsight is a wonderful thing as you can look back at the past and see what was blatantly staring you in the face, but at the time you couldn’t see it all. Looking back I didn’t realise how unhappy I had been. Obviously I had good reason to be, as living with PH is challenging, but it was the other areas of my life that I was not happy with. I used to really enjoy work and I felt I was good at it, but since returning to work after diagnosis I had changed, I realised I wasn’t as cut throat or aggressive as I needed to be in the world of recruitment.
I have also come to the realisation that I need to surround myself with people who provide me with a positive mind-set, as in the past I have found that some people can have a negative influence on my outlook.  I’m sure the best of intentions were there, however when someone regularly stops you doing “normal” things as “you shouldn’t overdo it” you then start to believe you can’t do things and you become very reliant on that person to do everything for you. It all became too much. When I made it to Australia I felt like I had been given my old wings back, and I could be the independent, happy person I used to be. It was at this point I realised situations had stopped my health from improving, not the disease itself. Once I removed myself from the world of negativity that I had been living with for the past two years, I began to see a massive improvement with my health and just general well-being. I’m sure Juzzy will take full credit for this! But on a serious note my first blog was all about fate and me falling ill at the time meant I couldn’t go to Australia. Now I have made it to Australia and hopefully as long as my health permits it I can enjoy many more trips to Australia and travel more around the world. I strongly believe everything happens for a reason and this year proves that. I wasn’t meant to go to Australia in 2013, it was all meant to be now. I am so excited for my future ahead and I dare to dream that I will be one of the lucky ones to see the cure for PH and that I can live a very happy, exciting and long life.


Gem xx


  1. Got it! Difficult for me,with Facebook right now. Great blog Gem, your story echoes mine, even down to the dead legs,stopping,walk test,and heart returning to,almost near normal. Hope all goes,well for,you, you truly deserve it Gem mending warm love. Xx