PHighter Friday: Maho

I guess my story starts in 2013. About May, I start noticing that I struggle going up stairs and hills. This gets progressively worse as time goes on. That year, I was doing my Masters degree, and had a place to do a PhD in microbiology once I finished it.

It all goes well in terms of getting started with the PhD, although I do notice that I’m struggling to keep up with people going up. However, I just put this down to a lack of fitness, which in hindsight was rather stupid - especially when a friend had said something’s not right!

In Nov., I finally go to my GP, who arranges an echo - 6^th Dec. There, I am told that the pressure in my lungs are high. I’m asked “Are you feeling ok?”, to which I reply “Yes”. This is another stupid moments in hindsight, as I knew something wasn’t right but I was not worse that day than I was around that time.

10^th Dec., I’m due at my Masters graduation. However, that morning, while getting ready, I lose control of my breathing. Call and ambulance, get taken to A&E. Having the information from the echo, they quickly realise that I probably have PH, and call the specialist down - I am really fortunate that the Royal Free has a satellite clinic with specialist doctors, nurses and a psychologist at my local hospital. Diagnosis and admission into intensive care followed, and I was started on epoprostenol and sildenafil. Two weeks later (Christmas eve!), I am transferred to the Royal Free to have a central line fitted so that I can continue the IV therapy at home.

With the teams and my mother’s support, I managed to slowly return to my PhD; I am lucky to have a supervisor who is very supportive. By Apr., I managed to return full-time, and I do think that if my supervisor hadn’t been as supportive as she is, I may not have been able to continue. Due to the line, I had to learn to use computer programmes to continue my research from another angle. In Nov. We completed a risk assessment so I have managed to go back to doing lab work, which is what I love. I’ve continued to improve, from being told that I should start the process for transplant assessment to being able to do most things. My mother is a therapist working with movements etc., called "eurythmy", and I believe this has helped me recover enourmously!

I still do have days where I feel frustrated with the whole thing, particularly the IV! I have had moments where I feel so stupid for not seeking help sooner. But I realise that I’m responding well to the treatment, and that even if I had sought help I may still be in the same position today; I have had excellent support from the psychologist, who has helped me realise that, helped me to organise all my emotions and so much more. I also recently fainted due to pushing myself too much around that time, which was a huge knock to my confidence as I felt that I was back to normal. Reality is that I’m ill, even if I don’t feel it sometimes.

One thing that will stay with me forever; the day I was discharged from the Royal Free, the nurse looking after me said “Be bold; if you want something to happen, ask God, because he decides what happens, not us.”. This stills means a lot for me to this day, and gives me hope that one day I will get well enough to not need the IV anymore.