Thursday, 13 October 2016
Sunday last week, my friend Amy traveled up to see me all the way from Devon, we chatter for a bit but then I had a little doze as I usually do because my body is working so hard. Then I started to get fever I get several times a day, this was particularly hot one and I had a few members of the team in and out to check vitals, then blood gases several times and turn the 02 up. They asked me if I was tired or couldn't stay awake anymore and to be honest I just couldn't stay away. My breathing rate was really high and while this was efficient to keep my C02 just acceptable they said I probably needed to be down on Rowan ward HDU which didn't really suprise me. I think the shock came when they came back and said I was really high risk now and would actually be moved to itu. I expected to be more panicked but all I thought is well I won't have to worry about doing my medications when I'm to tired, someone else can take care of that for me for now.
My mum, Amy and my sister packed my stuff which mostly couldn't go with me. I had a settled night on ITU apart from one blip where I woke up in tears saying I couldn't breathe anymore and needed bipap luckily the meds they gave me relaxed me and I managed the night off bipap.
I spent 2 nights in itu and to be honest somewhere that's been so scary for me before seemed to be a place of comfort. I was reasonably aware, some of the nurses knew me and all were extremely soft, compassionate and just what you need when your struggling. A lot of meds were regigged in itu, some to help fight my current pneumonia and others to help fight the symptoms so I can get things like eatting, Physio and rehabilitation done. All important things but when extreme sickness, vomiting, pain and lack of oxygen kick in all very impossible.
The phycologist came round to see me and I was very open to anything she could do to get me in the right place I needed to be. Which for me in my own words 'if my symptoms carry on like this I don't know how I will have the strength to fight much longer' and credit where credit is due I'm feeling so much stronger there were times when I just didn't know how to keep fighting. How do you carry on breathing when every breath feels like it's crushing you, panicking you, it's not enough but you can't get any more.
My fear when I die is it will be like that, I don't want to suffocate slowly I would much rather the pain be over very quickly.
Anyway I'm now on Rowan part of HDU. On humidified 02 as I have rotten sinusitus. My meds are getting on point and as my CRP has gone from 400 to 50 I haven't had any more temperatures, the symptom meds are all being finley tuned so that I can be as comfortable as I can and do my REHAB to start building some very weak muscle back and believe me I'm working so hard. The hard thing about this is when rehabing before my lungs got strong quickly as it was after my transplants these one well I don't know if they will actually get any better, the pneumonia might be treated but my lung function is not likely to get back to a point where I will ever be able to pole again. To be honest for me to get back to what I love I need a miricale and for someone who has received so many, I'm not sure I can ask for any more. For me my main goal is getting strength back as much as I can for what ever else comes my way and in the hope that I can make it home where I belong with my family.
I'm not ready to die yet that's one think that this pneumonia has affirmed to me. Even in moments of doubt I knew I could get through it if I had the right tools. Something Harefield have really come through with.
Wednesday, 5 October 2016
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.
Saturday, 1 October 2016
I write this blog from hospital. I have been in and out since my last blog. I celebrated my 27th birthday inbetween and reached my goal of 3k for Harefield hospital which I'm so grateful to everyone For helping me do so. My birthday was lovely despite being pretty ill. My husband organised a lovely meal with friends and family and I got to see my brother and friend Amy in the day along with doing a hour of shopping in a wheelchair from shop mobility.
With every birthday I cannot help think how lucky I am to still be here thanks to my donors. No matter how ill I am right now, without them there would not have been any more days, any more beautiful moments, all the things Iv achieved in these 5 amazing years! I'm so incredibly grateful for that.
Currently my lungs are really struggling. My lung function has been going down and today it was a mere 0.94 litres this is just 24% I have been treated for a possible infection due to some changes on my X-ray, as you may recall I had changes on my CT before now I have these shadowy changes on the X-ray to. I don't know if there the same thing. Iv had over a week of ivs now and things have just gone from bad to really bad. I have had temperature pretty constantly for 4-5 days although they seem to have come down with the help of IV paracetamol being given very regularly. The only problem is... My chest is completely clear so the idea of a infection just doesn't seem right. I have also developed a blood clot in my mid line.
This rate of decline has really scared me and I said to my CF consultant today as I'm currently in Exeter hospital, that I don't know where this is going but having lost another 11% of lung function over night although my sats are holding there own, if I lose another 11% over night I may wake up barely breathing and that scares me. If this is a acute fixable episode then I need to know that I'm in the right place with the right people who can get me through this. Exeter are the most amazing hospital ever but as they know they are a CF centre not a transplant hospital. I'm worried about the possibilities of ending up in ITU but at the same time I need to know that I have that option if it came to it. I don't really have many options left so if there are any that are available to me to get me through this I need to know I'm in the right place to use them. So tomorrow I am being transfered by ambulance to Harefield. I hope all the medications can start to work very soon and before this escalates anymore.
People will tell me to stay positive and I am, I'm positive in that I'm surround by the people I love who are ready to help me fight, if I get weak and tired they will help me stay strong. Remember just because I feel fear does not mean I am not brave, I still feel the fear and face it head on, just because I can see the negative doesn't mean I'm not positive, i still chose to see the positive when surrounded by all the negative. Some days though it's just a little harder to find that one tiny glimmer. But I will.