29.1.16

Ticking along....


Hello my lovely, lovely lot. 

I know it's been nearly 2 weeks since I blogged! :-O I guess I haven't had much to blog about really. Last Thursday I had my first clinic of 2016. I was super prepared for it I had like a list of questions and everything. I did express my hair worries but as I knew and always thought they basically can't do anything about it and said as I knew they would "You have loads of hair" which isn't what I wanted to hear and the fact I have loads of hair really isn't the point. They did say it should ease up though so I just have to put up with it for now which I can do and I just hope to doesn't get any worse. 

They started me back on a drug called Myfenex which was one of the first anti rejection medications that they put me on when I had my transplant but they had to take me off of it in October because it seriously affected my white blood cell levels. They do however like people to be on 2 anti rejections so they wanted to start me back on it on a much smaller dose. The problem with Myfenex and me is that I don't react that well to it. I know when I was in hospital Myfenex is the reason I was Barrier nursed for so long and my body just didn't want to adjust to it much and it took a good month before it really did. Anyway so this week I have really not been that well with it, so I rang Papworth and they told me just to stop it and hopefully I will feel better in a few days and then I can have a blood test and just made sure that everything is okay and then hopefully at my next clinic we can find something else. I don't know I think I'd feel safer on two anti rejections but then I honestly don't want to feel like I currently do all the time, there was a day when I may as well have stayed on the bathroom floor all day, I felt horrific.

I really think having a transplant has made me into a bit of a pansy though. What do I mean? Well since my transplant just things that normally wouldn't have been much of an issue are just much more painful and seem to have more of an impact on me which is ridiculous to me considering how much I used to have to put up with. I keep having to tell myself to get a grip lol. 

We also discussed my PH studies and thankfully they listened to me and I told them I would have preferred to have them done at Papworth just because of my anxiety and so that will happen at some point. There's a bit of a wait for them but I'd rather wait a bit and try and just do what I can to reduce my acid reflux than have a procedure done at a hospital that I don't trust again. I kind of feel like there's quite a few hospital appointments at the moment, as I have one on Saturday for my wisdom teeth which will be scary :-/ and then another appointment next week which will definitely have a blogpost all of it's own for you lucky lot LOL! I guess the beginning of the year will always be a hospital appointment type of time :)

I suppose that's just my little life update for the moment, I promise there will be another blog sooner that 11 days :-)  

As always, thank-you for reading and chat soon. 
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