It's been a bit of a puzzling month with a load of appointments, some were booked ages ago when July was there in the distance somewhere, others were a bit of a last minute thing. The appointment I was stressing over was the appointment at Heartlands Hospital. When I last went in to the Alex, I was told that in no uncertain terms that basically I was going to die. This really messed with my head and I went through a lot of emotions and in effect I had been grieving for the life I could have had. To have that debunked and told that although there has been scarring in my lungs for a while, this was probably more bronchial changes rather than IPF so that definitely took a lot of pressure off both myself and my family (including my friends). The Alex will have a lot to stand up against when I am finished with them because of the physical harm they caused (not to mention the mental strain this put on me over the last 6 months or so).
To be honest, once I got over the initial shock, I was so happy again, everything was bright everyone was happier. Unless you have carried such a thing around with you, you have no idea how difficult it is to have a death sentence hanging over your head or only ever feeling crappy at best. I want to rebuild my life again and its the best thing knowing that there is a future for me. I have a future.
The main thing I have had to take away from this all is that I have had yet more assurance that what I am dealing with IS asthma, it is brittle and is probably going to have some effect over my life for as long as that is. I'm not ready to give up and I think my conviction and genuine wanting to set things right and get things back on track was obvious to anyone who could see. Maybe I expected too much from the initial consultation. Maybe I just want to get better so much that sometimes I wonder if that longing is only setting me up for a fall. A pred detox could be fantastic move because it would mean that we could move on to treating the worst of my symptoms (and what causes them). Its suspected that the worst of my problems stems from the spasm of my airways. Parts of my airway are damaged and I colonised Pseudomonas last winter which really didn't help me at all. If we can get those to stop or at least slow down a bit, I may have a chance of more of a quality of life. I may never be pred free or completely off o2 but as the nurse and doctor assured both me and my mum, if anyone is going to get me halfway back up that mountain, it is Dr Mansur and (as understandably hard as it is) I have to trust him and let him help me and I need to help myself as well.
Unlike previous attempts to do steroid detox, we are backing this one up with objective evidence, close watch of my peak flows and lung function and putting something else there instead. Something less likely to have horrific side effects (my weight is the one I am most worried about, but hey, I'm a woman after all) and I am willing to try anything at this point to be able to not be in pain or gasp for breath all the time. It's a shame we can't fix my back or my joints or I would be even as bold to try and get out of the chair. Maybe one day we will get there but for now, I need to focus myself on things I can actually achieve and work towards them.
What I want to achieve is a more comfortable way of living, it'd be lovely to sleep through the night and not wake up to chest tightness, wheezing and chest infections. I want to make a future with the man I love. I'm starting to believe in that being possible. And the people who know me know that I won't settle for what I can't believe in. The next month or so is probably going to be testing and hard work with appointments to do with my teeth mainly. Basically my wisdom teeth need to get gone and I need the tooth I broke headbutting an oxygen cylinder in the night (not one of my brightest ideas but I was asleep!), not to mention finding a week where I can go and sit and do nothing in Heartlands (a week away from home in a strange hospital in a strange town, I have my reservations but I am going to fight through them and get this over with. At least then it's done, dusted and doesn't have to be done again and again (she says) and hopefully, unlike the last few times I have been in hospital, I will come out having achieved something rather than being left to withdraw and nothing done with it (which the Alex seem to take great pleasure in doing to save a little bit of cash)).
I guess my head will be buzzing over with questions and chomping at the bit to get past it all and hopefully embrace a brigher, less wheezy future. Oh and if I could shift this chest infection I have had now for some time, that would be brilliant as well. I don't know what I feel about the whole thing and some days I am wondering if it really is just me losing my marbles (although I often wonder if I had them to begin with!) or is there even going to be a way we can work around this. If we can work around it, it them poses the serious questions as to why this was never done in the first place and what kind of long term effect has this had on my body and what will put that right? If it even can be put right. I am hoping for some answers to the huge questions and concerns in my mind and I guess maybe I am also trying to have low expectations because that way I can't be too disappointed again.
It's a heck of a leap of faith isn't it?
2 years ago