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.
I follow you in blogspot since the documentary film and I follow you in facebook since a months ago. Your strong give me always motivation for enjoy every moment to the maximum. I wish you the best in this night and I hope the doctor found the best medication for make you feel better. Hugs from Ecuador.
ReplyDeleteI am praying the Lord will heal you and give you relief. I have never gone through your experience, so I will not pretend to understand what you are feeling or thinking, but as a fellow CFer, I stand beside you. It can be overwhelming, and bravery looks different every single day. My thoughts and prayers are with you, Kirstie.
ReplyDeleteI have followed since the documentary on you and your husband , your strong . And I hope the dr will find the best medication for you.
ReplyDeleteWishing you all the best Kirstie. I've followed your story for quite a while now, and have been amazed and inspired by your attitude to life and your ability to overcome whatever is thrown at you. I'm also in awe of your pole skills! Keep up that brave fight and I look forward to reading about what you are able to achieve next x
ReplyDeleteKirstie I cannot find the words to express my feelings reading this. You are such a strong positive person but that can't stop you being scared. I pray that you will rally and start climbing the ladder again. I was diagnosed with pancreatic cancer a couple of years ago. It's being controlled but is terminal so I have some idea of what that fear is like. Stay strong and keep fighting. Love and hugs xx
ReplyDeleteKirstie, I am so sorry you are having to deal with this again so soon. I have everything crossed that your lovely doctors can either fix you or find you another set of lungs pretty quick. If it comes to it you know you can do this again. You just have to consider whether you can break your days getting home after a transplant record. Sending you much luck and love. Jill x
ReplyDeleteHoly crap. I stopped following everyone after another upset year. Just seen this and honestly I am wishing the very best for you kirstie. Your strength and perseverance to always keep going has always been so admirable since your first transplant I have never seen someone fight so hard. I can only begin to imagine how scared you must be and you're right it is ok to be scared. I hope they figure out what's happening and soon. You have come so far these last few years. Keep fighting with all your spirit and hopefully this will keep you going until they find a way to fix things for you. Best wishes hun. Gem x
ReplyDeleteWe are fighting for you Kirstie. ❤❤❤
ReplyDeleteThis is the second attempt to post on the blog page. I know that you are not particularly religious Kirstie but I will pray for you as well as keeping everything crossed for your recovery as soon as possible. I have the greatest esteem for your courage and thinking of you brought me through my own nightmares, being hospitalised 12 to 14 weeks each year and even when out of hospital huge medications and quite extreme physio to my present ( very good ) situation. Wishing you the very best, I will be thinking of you constantly. xxx
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