It often feels like the higher powers above are battling for my life, someone wants me here on Earth the other is saying it's time to go home.
I'm not on deaths door, that's not what this blog is saying, my health is more stable I haven't had any big drops in lung function, just the trickle of a percent or two, I'm still getting temperature and often feverish at night, my breathing is incredibly uncomfortable but still what ever part of my precious lungs are working are working well enough to keep my sats up. What this blog is saying is I feel like the last 6 month attack on my health feels somewhat deliberate. Every few years I'm battling for my right to life. Iv been so incredibly lucky to recieve both transplants and have a extremely good stint of health inbetween. Some people have not been that lucky at all and had complications from the start. But it still feels so incredibly unfair, I often hear people say why me and I have to remember . why not? What would make me so special to not have any health problems, it just doesn't work like that health and disease are not biased.
But still here I am feeling the uncertainty in my future. Wondering how much strength I have left in me? It makes sense that one person can only do so much, can only carry on fighting so long. What sort of life will this one be from now on if I do stabilise? I'm not saying I'm ready to give up, I'm really not, but I wonder if at some point my strength will waiver?
Right now it seems that maybe this isn't a infection after all, that all the changes on my CT, ground glass, consolidations, are actually another form of Chronic Rejection. A type called R.A.S I was always lead to believe that when I first had rejection in my first transplant it was B.O.S. Until recently when I signed the forms for my case to be discussed as part of a study, it turns out retrospectively they believe I had R.A.S or in fact maybe biopsies of the lungs showed it to be. I don't know if this means I have B.O.S and R.A.S or if Iv just had R.A.S all along. What I do know is R.A.S is more fatale and harder to treat.
So I sit here and I wait, I wait till they bronch me and tell me the results. Hopefully I do t have R.A.S and this really is just a tough infection. Mean while I carry on trying not to worry about my future but take one step at a time. Sometimes it's the only way to survive. Think about the seconds, minutes and hours but nothing more nothing further because I don't know what they bring and the fear of them can stop me enjoying the here and now.