So i have been staring at this screen for the past 20 minutes wondering how to put the past weeks recent events into this blog.
I am going to start with the bad as i want to end this on a happy note. It pains me to say that this week 2 of my CF friends unfortunately lost their fight, the news devestated me, especially because they were on the ward at the same time as me. I am strong person emotinally but i will admit this tested me and i did loose it at one point. I get told over and over again by people who love me the most its okay to cry and to let it all out but i worry if i do that I won't stop. I really felt that something was clamping down hard on my chest making it all the more harder to breathe not a nice feeling. I never want to experience that again however being part of the CF world i know that losing people can happen at any moment something i know all to well for my liking. i will cherish all the good memories I have gained over the years and I gain comfort in knowing these 2 amazing guys can finally breathe easy something a lot of people take for granted.
My health was also a bit of a concern this week, you see when i come in for my 2 weeks (or longer) for stronger IVs they usually work but it was nearly the end and i was still spiking temps although my CRP (infection levels) were down to 74. So my doc decided to phone newcastle to use one of my drugs they have choosen to use after transplant. There is 2 problems with using these drugs 1) i would need to come off the list whilst on the drug 2) my lungs could become resistant to the drug meaning it would not be as effective post transplant. Luckily for me I didn't have to come off the list as my doc chose to use the second batch of what newcastle like to call your "cocktail list" personally I like it !
It has been an exhausting week both emotinally and physically what with the high temps, sad news and the IVs just taking it toll making me really tierd. I know I need to be strong though and somehow I stay very positive as I HATE negativity but like I said this hospital stay although hasn't been my longest has been one of the hardest.
I am happy to write that I am hopefully getting to go home on thursday, I will stop the back-up IVs and go back onto my regular IVs ones that my mum and sister can do at home for me. I can't wait to go home and be with the people I love the most, to enjoy my mums meals and chill on the couch watching criminal minds and also sleep in my own bed. I know i will be back here soon normally get 2 weeks at home and this time i have only been in for a little over 2 weeks but this time I can't wait to put this admission behind me for many reasons.
I am going to start with the bad as i want to end this on a happy note. It pains me to say that this week 2 of my CF friends unfortunately lost their fight, the news devestated me, especially because they were on the ward at the same time as me. I am strong person emotinally but i will admit this tested me and i did loose it at one point. I get told over and over again by people who love me the most its okay to cry and to let it all out but i worry if i do that I won't stop. I really felt that something was clamping down hard on my chest making it all the more harder to breathe not a nice feeling. I never want to experience that again however being part of the CF world i know that losing people can happen at any moment something i know all to well for my liking. i will cherish all the good memories I have gained over the years and I gain comfort in knowing these 2 amazing guys can finally breathe easy something a lot of people take for granted.
My health was also a bit of a concern this week, you see when i come in for my 2 weeks (or longer) for stronger IVs they usually work but it was nearly the end and i was still spiking temps although my CRP (infection levels) were down to 74. So my doc decided to phone newcastle to use one of my drugs they have choosen to use after transplant. There is 2 problems with using these drugs 1) i would need to come off the list whilst on the drug 2) my lungs could become resistant to the drug meaning it would not be as effective post transplant. Luckily for me I didn't have to come off the list as my doc chose to use the second batch of what newcastle like to call your "cocktail list" personally I like it !
It has been an exhausting week both emotinally and physically what with the high temps, sad news and the IVs just taking it toll making me really tierd. I know I need to be strong though and somehow I stay very positive as I HATE negativity but like I said this hospital stay although hasn't been my longest has been one of the hardest.
I am happy to write that I am hopefully getting to go home on thursday, I will stop the back-up IVs and go back onto my regular IVs ones that my mum and sister can do at home for me. I can't wait to go home and be with the people I love the most, to enjoy my mums meals and chill on the couch watching criminal minds and also sleep in my own bed. I know i will be back here soon normally get 2 weeks at home and this time i have only been in for a little over 2 weeks but this time I can't wait to put this admission behind me for many reasons.
So i will end this blog by saying R.I.P Stuart and Christopher, i hope you are in a much better place and having fun up there. I will continue fighting and waiting for this all important call :)
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