25.1.17

Those who care...


So in my lifetime experience of being ill, it's not the ill part that's the hard part or at least not for me. I can do the whole being ill thing, I believe that's what I was put here to do with my life, it sounds odd but I genuinely believe I was given my lot in life because I could do this I could persevere through this when someone else might have decided to give up when they were told they would die at various points in their lives. I never have, I've never believed it when I've been told I've got such and such time date stamped on my forehead and after being told at least 3 times in your life you've only got a few years left you just don't quite believe it because I know me and I know what I can do. Give me a situation and I will prove you wrong I might not get through it with a smile plastered across my face but I will do it because I do not bow down in the face of death! I do not idly sit by if told there's nothing more because there is always something and I will always fight for my life! 

So now we've established that what I actually find the hard part is that although I can be ill I can't do it all by myself. My 3 year wait taught me a lot, I remember feeling like it was a task I had to do by myself it was job I should not burden people with it because why should they have to deal with this awful situation as well? So I really did try I always had my parents and my sisters but they were already a part of it they couldn't be "un a part" of it, they were already invested! But I could control that immediate circle, no boyfriends because that was a mess I didn't want to deal with and only a few close friends because that's as much as I could handle and my close friends were people already invested or people who completely understood the situation so weren't going to be blindsided by it if I did die. 

This time I'm much worse and I have absolutely no choice in having help, I can be as stubborn as mule but even I know I don't have a choice this time. I consider myself so lucky because my mum and dad are still here still willing to do everything they possibly can for me. I so desperately wanted my parents to have a break from me and everything that comes with me. It was a big adjustment initially post transplant because i had gotten to a point where I felt like I needed to be independent and give them time where they didn't have to be at hospital with me and that was hard for them because they were so used to coming to most things with me. But we were getting there and I was becoming a normal 25 year old. Then BAM I'm ill again. I have felt so guilty because I so wanted them to be able to not have to worry about me so much and now it's just all tits up again. I have them at my appointments because I need the support and I've always been a great believer in having more people in the consultant room because more ears is good especially in these situations when things start getting complicated, you know at least one person is bound to absorb something. I'm so incredibly lucky because my mum is one of my best friends, we gossip like old ladies we enjoy shitty Christmas movies even in summer, I'm not at all embarrassed to have my mum wash my hair and help me out of the bath or help me get changed or anything. I just feel awful that she is having to do it and I know I will probably never be able to repay her for it, she will always say "she's my mum it's what she's here for" my mum's priority in her life is her children and always has been there has never been any doubt about that, she may have a job to earn money but her JOB is to look after us and she is simply amazing at it!!! She and my dad are the reason I'm still here, my mum refused to believe one moronic doctor and thank god she did because if she hadn't I would have died. 

My dad obviously doesn't help so much with the changing and stuff but he does so much that contributes to helping me. He works insanely long hours so that I can live here without the worries of paying rent or anything, my dad went to all my appointments and operations as a child whilst mum had to look after Candice and Megan and honestly some of those hospital stays are some of my most treasured memories! My dad is one of those people who would drop everything if he can if I needed him. He would tell whoever was trying to stop him to fuck off and just leave. He continues to come to my appointments even with as little as a few hours notice and I'm not sure what me and mum would do without him. 

Since my transplant I have attained a unexpected someone. My boyfriend. Now I won't go in to details on here about him because I don't like that but he has become so important to me and my life and I always thought I couldn't be ill and have a boyfriend because I just feel so guilty about putting this incredibly hard thing on someone else. I thought I had time I never thought this would happen this soon so Mark has now be Shanghaied into this situation and I understand that he "gets" it more than the average person but I just feel this weight of guilt that I've put all of my problems on someone else who should not have to go through all of this.  I love him though and that overcomes all of that and he is quite simply amazing! He is my favourite person in all of the world and makes me happy just by being in my life. He has been looking after me so incredibly and just wants to make everything we do fun even if it's only a lunch or a walk somewhere (or push now) he does absolutely everything he can do to make my life happy and fulfilling. I consider myself just the luckiest person ever. 

The thing though I can't repay them. I can't repay my parents for their lifetime of care, I can't repay Mark for bringing such a spark to my life and being so caring and amazing. That's the problem how do you say thank you to people that you love more than anything? Who you care for more than anything? and who care for you too. I can't and that upsets me because they deserve so much more than I give them. 

As always, thank-you for reading and chat soon
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22.1.17

Turbulant times...

 
This has taken days to write, not because it's hard to write... well maybe it is, I don't know but it's just like the words won't come or my brain just can't be bothered to go over it again but hey ho hopefully I can get through it all at least and we'll see how we go.

So last we left off I had just had a clinic appointment and we had lots of plans for the Friday and would leave Hospital on that Saturday. That did not go to plan.

At the clinic on the Wednesday they had discovered a shadow on my x-ray that they just weren't sure what it was it could have been a rib or it could have been a cavity or it could have been nothing. On the Thursday they had gotten previous x-rays together and seen the gradual build up of this shadow which ultimately determined that it was a cavity and my Dr was sure with all the other evidence it was a cavity full of an infection called Aspergillis. Now essentially the infection itself isn't a problem if it had just been that we would have been fine, what the problem is, is where the cavity is located in my lung, that is the problem. It's located just under my collar bone near my throat, so essentially very close to the surface and apparently somewhere that is routinely torn during surgery. The consultants are reaching the point where they think it's one risk too many.

So after that little bombshell I was told that I had to be suspended on the list whilst we attempt to get rid of this cavity. We've started me on some antifungals and some antibiotic nebulisers and I'm now officially up to 21 different meds a day LOL. In a way it's great that they found this cavity before I got my transplant because it would have been awful to have gotten a call and then be put under and for it to be discovered in that situation. The problem we now have is that some surgeons potential may not like the idea of doing the surgery at all because the Doctors tell me that Aspergillis doesn't ever just go it leaves like an "imprint" and the way me and Sarah imagined that was like a mouldy bathroom ceiling the mould is gone but you can still see it. So that is making a few people just a bit iffy about the whole situation.

So whilst I was in hospital and we were trying to sort out a bunch of my blood levels and just adjust to my new medications they had they transplant meeting which they always have on a Wednesday and discussed me and my situation. Ultimately the result came back that the surgeons said they were confident that they could perform and do the operation, which is super reassuring and great news, however a few consultants are kind of on the fence, they're worried transplant might just be a bad move and think I could potentially get more out of life if I can stay stable and therefore would prefer not to do the transplant whether I can get rid of the Aspergillus or not. This is all fine I need as many opinions as I can get both the positive and the negative. Personally I still want the transplant, I trust the surgeons at Papworth so I believe if they say they can do it, they can! If they had said a outright no I would have fought back but luckily they all agreed to wait and see if I can decrease the size of it or get rid of it completely. So in 5 weeks now I will have another CT to see whether it's going away or decreasing.

Ultimately I believe this should be my decision as they've already agreed to doing a operation with unquantifiable risks this infection doesn't make it any more unquantifiable. It's not going from 90% chance you live to 40% it's literally "we don't know if you'll die" "we don't know if you'll die even more." I'm lucky I still have decisions though even if they are crap decisions but ultimately the way I'd prefer to die anyway would be during an operation where I'm completely unaware not slowly and painful fully aware of what's going on and being unable to do anything about it.

I'm home now thankfully and only had to stay at Papworth for a week but I now have a long regime or nebulisers and physio that I have to do now because I really have to shift this stuff in my chest but I think it's going now so I'm excited to get on and doing stuff, I refuse to let this little setback stop me from doing things. I just have to really pay attention to myself and look after myself. I'm determined that I will survive and luckily I've not been proved wrong yet :)

As always, thank-you for reading and chat soon
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11.1.17

Cold Turkey...


So the past few weeks have been HARD, just really difficult. I was on my IV's until Friday and they just make me feel crappy, in all honesty I was a bit fed up doing them this time and just didn't have the patience to be mixing up, drawing and administering antibiotics three times a day. I got through the two weeks though thankfully unfortunately I just started to feel really off and weird and super anxious like all the time. I didn't feel like myself at all. I started to get anxious about doing anything:- moving, getting changed, brushing my teeth, being by myself, going for the loo... so on and so forth. I was talking about a few weeks ahead of time and I just started to panic for no reason. Then it would reach bedtime and going to sleep and on the either Saturday or Sunday I had a crying fit and we thought maybe it had something to do with me coming off of the high doses Codeine I had been taking while I had been having some pleurisy. Monday evening however I was just hysterical, I wasn't me at all I was crying and just saying "I can't do this anymore" "I can't be this person" "I just want to be able to switch my brain of" "Why won't this go away?!" You know everything you can think of I was probably saying and it just wasn't me I'm not like that at all so we knew it had to be something more. Ironically the day before I had said something about taking my anti-anxiety medication. I decided to check my pre-made up drugs for the week and tah dar there you'll have it there were non of my anti anxiety meds there which ultimately meant I hadn't been taking them since last Wednesday. I looked up the side affects of coming off of the drug 'cold turkey' and what they said was the patient would likely be in a state of "Mental disarray and Chaos" and too bloody right! That is the most accurate description of a side affect I have ever read absolute mental disarray is what I have been experiencing for the past few days. I have been a utter crazy person. I'm just so pleased we figured out why I was feeling the way I was because there is no way I could have carried on the way I was because it was just so incredibly awful. My advice is to NEVER go cold turkey off of a antidepressant/anti-anxiety medication it will send you insane lol!    
 
I feel so awful for anyone who's had to be around me, at least in the last week, I've been so unlike myself. Saying all that though I had a lovely second Christmas with my Boyfriend which we celebrated on New Years Eve, the past few weeks have been quite quiet though because my IV's have restricted when I can go out and then me feeling just generally awful has meant going out hasn't been much of a option.
 
I had a clinic appointment today though which I had no expectations for the appointment luckily everything is nice and stable lung function is sitting at 24%. There is some worry about my pseudomonas and that is keeps coming back so that's what we're currently trying to sort of tackle that so I have to go back Friday where they are going to start me on a antibiotic nebuliser which hopefully will start to keep it at bay. Recently I've been finding it harder to shift the gunk that's in my lungs so we're going to do some intense physio when I'm there so we can try and shift some of it. I've also been having problems with sleeping at the moment, like basically I may as well not be sleeping as I'm not really resting whilst I'm asleep my body is working so hard all the time, so we're going to do a sleep study as well to really get a good look at what's going on whilst I'm asleep to see if it's oxygen related, fluid related, secretions all that type of thing.
 
Everything seems to be still positive which is great and I'm finally starting to feel like myself again after the accidental missed medication lol
 
As always, thank-you for reading and chat soon
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