Things Happen in a Whirl and Blur!

Monday morning came and I was unable to eat or even put water in my mouth without being sick and I was even being sick on nothing. The ward doctor came to see me and after she had finished attending to my needs, she sat down and gently told me that my friend had died on Saturday night, I had become worried about her and begun to fear the worst, but it was a massive shock. They had decided to tell me as they knew I was a bit worried about her and we had been through a lot together. The ward staff that morning were all sombre and upset by what had happened, it had been totally unexpected, they were extremely kind and kept coming to sit with me to make sure I was all right, I felt like I was hanging on by a thread and if I let myself even begin to cry I wouldn't stop.

I was reeling from shock, being sick and really struggling with the Epoprostenol, there was also the selfish thought in the back of my head, if this can happen to someone in the same position as me, then it may well happen to me, especially as I am twenty years older. My main concern, however, was thinking of my friend's family and the loss they had suffered this weekend. Things felt very low at this point and very bleak. I didn't think they could get any worse and had to believe I would adjust to the drug increase sooner, rather than later, I had to summon up the strength to stay positive.

By mid morning, things declined again. The consultant came to see me and explained that they would slow the increase down and give me a day off to try and recover from the sickness and eat something. That suited me in the circumstances of the day. She also explained they were going to give me a second specialised medication to help, Sildenafil, once they had increased the Epoprostenol to the target dose. No going home for me on Tuesday then, in for another long stay! My mind was quickly registering as I was being told all this, that I was lucky at least they were still able to do something and I was here trying my best to get through it, determined I would. I was being given a second chance, unlike my friend, and must stay positive.

The consultant then went on to give me another 'bolt of the blue', she was referring me to the transplant team to assess if I was ready for a lung transplant, as the PH team felt it was time to explore this avenue before things deteriorated. I was reeling in shock again and wondering how much more I was going to be able to take.  But positive thoughts, better to get another door open if that was what was needed and another option in what was now becoming a journey to keep alive.

A lot to take in in the first few hours on a Monday morning, especially when you are feeling horrendously sick, with a splitting head and searing jaw pain, so bad it felt like my head was just a circle of pain. A Monday morning I will not forget! As usual I had managed to keep myself one step ahead of myself all along, and when I had been feeling better in January, I had took upon it myself to read all about lung transplantation and assessment. Lung transplantation had been mentioned briefly to me in December as treatment that might be available to me in the future, I had rather hoped that that might be twenty years in the future and as usual I had been over optimistic! But I find it better to be over optimistic as this keeps me motivated and full of hope! For my family too.

Lung transplantation is really a last resort option when drugs begin to fail to do their job, it is a route that may offer a better quality of life, but not a route to be taken lightly as after transplantation there are no more alternatives, it is final and comes with many risks. For some patients there is a chance of better quality of life and a chance to live longer than the prognosis offered by drug treatment, and this is the main aim. Contrary to popular belief, patients do not go riding off into the sunset completely cured, but for a tiny minority this may happen and longevity of life is restored. For the average patient one set of problems is usually swapped for another, but a better quality of life is achieved.  

So I have lost a friend, I am struggling with drugs, my PH is not stable, there is more drug increases and drug adjustments to be made imminently and now the very daunting prospect of having a lung transplant looming much more closely than I ever anticipated. This is the point where one small step at a time needs to be put in action.

First and foremost, I have to get these drugs increased for my own safety and deal with the side effects.