31.1.16

Driving along...


It's been a while since I started driving now. I'm definitely taking the slow and steady approach to it though, I was never going to be one of those people who do any sort of intensive course because firstly that would massively stress me out but secondly I don't think I would have coped well having that much car information shoved on me in that space of time. So any way I thought I'd update you all on my driving progress thus far. 

First and foremost, I passed my Theory test. I wasn't sure it would happen quite frankly,  I was getting so stressed out about the Hazard perception part of the test that I honestly thought no matter how much I practised or did it I would fail that part of it. The computer, in my mind, had it completely against me! I kept seeing the sodding hazards before the computer wanted me to be seeing them so then I tried a new tactic and thought hey if I'm seeing them to early just click a bit after but nooooo.... clicking a bit later ended up being too late. At a certain point I just gave up and was like "if I keep doing this I'm just going to stress myself out too much and turn into a wreck, just go in there and see what happens." So that's what I did. I knew I would pass the question part of the theory  because that was easy it was literally just the hazard bit and I really do think that if I hadn't passed that part of it I may have given up the whole driving thing altogether and as dramatic as that sounds I really think I would have, just because I don't want to do things that stress me out it's just not worth it, for me anyway. But put that aside I passed and that's all that matters :-). 

Driving however does stress me out a bit but not in the bad 'I want to pull my hair out' kind of stress more in the 'I'm not naturally good at this and that's annoying' kind of stress which is the kind of stress I expected and that's not a surprise to me. Driving a Automatic is much, much better for me though because it takes all the pressure off as in driving a manual was so, so stressful for me personally and this just doesn't have that pressure to it. Today (29th Jan) I think was the first time that I actually felt kind of comfortable at the wheel, like I was controlling the car and it wasn't controlling me like it always seems to be. I don't think my driving instructor has that much patience with me though which is slightly frustrating for me because I really am trying but I just think he gets a bit impatient with me at times, he also seems to take great offence when I say I can't do a lesson a certain day if I happen to have a appointment or am at my boyfriends which I find very odd. Hey ho it might just be case of him having to get used to me more. Although saying that I feel like I should get impatient with him, he never seems to be able to decide what speed I should be going at he's always going "A bit faster please." Then the second I am "Oh no a bit slower please." and it's like that constantly for 2 hours :-/ I mean seriously make up your mind! 

I do find I get distracted quiet easily when I'm in the car as well so when I eventually can drive I'm going to be one of those horrible people who say "don't talk to me while I'm driving" I'll be fine if people are talking to each other in the car it's just if a question is directed at me that I'm like "Who? What? Where? Why?" and the next thing I'll know I will have hit a curb or a bush or a car or a person or a anything really lol.  

So I guess to sum up my driving so far, it's coming along it's just going to be a while before I can actually drive because that's unfortunately the type of person I am when it comes to these types of practical situations. In an ideal world I would be a millionaire and I would be able to afford a chauffeur and therefore wouldn't have to put myself throguh the stress of learning how to drive LOL.  
 
As always, thank-you for reading and chat soon. 
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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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18.1.16

Hair worries...

If you know me then you know I have a rather fond attachment to my hair. I'm a very insecure person who really doesn't particularly like that much about her body; I constantly feel the need to lose weight, to wear make-up (when around people) and finding someway to hide my scars. My hair plays a pivotal role in hiding my scars as a lot are located on my chest and just having my hair down does the job easily. My hair though is something that I actually like, I look after it more than anything else and it is the one thing I actually like about myself. 

I think is starting to thin or fall out or you know generally is doing something. Pre transplant my hair was a massive worry for me, I know so many people who have hair problems post transplant with thinning, losing a lot of hair and generally finding it hard to keep their hair in the same condition it was pre transplant. I'm very lucky in that I have very, very thick hair but recently a lot more hair has started coming out. I've never really experienced hair loss in any way, I've never been one of those people that has found a tonne of hair comes out in the shower or when brushing it through. Lately though I can just be randomly twiddling with my hair and find 10 hairs will come out, in the shower I couldn't even count how much comes out and then brushing as well it's hard to really say. 

Now it's not something I'm going to worry about too much just yet because as I said I do have very thick hair and it will be a while and a lot of hair loss for any-one besides me to notice but it is something I'm starting to worry about a little bit. There were a few things pre-transplant that I was really quite worried about; my face being one and my hair being another. Now I know there's normal hair loss and we all lose some hair but this very much feels abnormal to me and my usual amount of hair loss so it's weighing on my mind a bit. I just hope it never gets to a point where other people will notice it. I have Papworth on Thursday so I'm going to ask them what they think or if there's anything they can do about it, but unfortunately I have the feeling that they'll say what a lot of people do "You have enough hair to lose, don't worry" and whilst, yes, this is very much the case I don't actually want to lose any of my hair. I like my hair the way it is and would rather it wasn't thinner and as we've previously established my hair is one of the few things I like about myself and would like to keep it that way :-/ 

As always, thank-you for reading and chat soon. 
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13.1.16

The Bad night...


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I'm having a bad night. It's 00:47am and I'm sat wide awake checking my temperature, pulse and failing to check my lung function for fear of waking my parents. These don't happen very often anymore. I don't actually really remember the last time this did happen to be honest it must have been back in August I would think but anyway that's here nor there, I'm having a bad night. Nowadays being awake past midnight is a rarity and honestly there's nothing wrong with me really. 

Ever since my transplant my heartbeat has been something I've barely noticed now this might seem strange especially when you think of all the post transplant stories you hear about how strong their new hearts are and all they can do is feel it's new strong beat. Well for me pre-transplant my heart was something I felt ALL the time it never felt weak because it was working so damn hard to keep me alive it was always very present to me, working away in there sometimes I did have moments where my heartbeat would dip into the 40's and 50's and honestly I thought that maybe I was about to  die but mostly I was kept awake with a 120 sometimes up to 150 heartbeat that was just pumping away doing the very best it could whilst also simultaneously scaring the crap out of me. Now though? Well my heartbeat is fairly normal around 90 on an average which is far below what I was feeling before so I barely even notice it nowadays. Tonight however it seems that no matter what position I take in my bed, it is all I'm feeling. That kind of freaks me out, I've checked my heart rate though and it's fine, 95, so a little high but that's probably because I'm anxious about the fact I'm feeling it. 

I think though it's because before I tried to get to sleep though I was thinking about some of the things I had to do after my transplant, you know procedures that type of thing, so my mind is just you know on the topic a bit and therefore I'm just noticing it and also my right lung is kindly reminding me that it's there this evening like it likes to do sometimes and that's likely not helping matters either. 

The thing though? I sometimes think that those of us who've had transplants kind of forget the enormity of what we've done or had done or been through. Before our transplants we are so focused on just surviving making sure we just make it through that we don't care what's on the other side as long as we make it, if we keep going it will be okay. Then we get it and then we keep going, we don't stop! We carry on. We don't rest because we can't, we now have to put all this hard effort into making sure we can keep the life we've been given. I don't think I ever really got the chance to think about what happened or what I did. So I think sometimes the enormity of it just creeps up on you when you're in a quiet moment like I was when I was trying to sleep and just reflecting on some things and then bam there it is in the forefront of your mind. I know that I'm extremely lucky to have had such a smooth ride through all of this but sometimes you just look at it and think "Woah! That was actually a very big thing, how did I even do that?!" I can't answer that question but I just think sometimes I need to remember to just take a minute and just remember that what I did, what I went through was huge and it will creep up on me sometimes and that's okay. 
As always, thank-you for reading and chat soon. 
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12.1.16

Walking in the rain...


 So if you've read my bucket list, one of the things I wanted to do after my transplant was to 'walk in the rain' and luckily I've done this many times since I had my transplant but this past week especially I've been able to walk in all sorts of rain. My favourite is really heavy rain that isn't accompanied by wind and I've managed to experience that. I love it so much! I got a FitBit before Christmas so I have been trying to do at least 10,000 steps a day so no matter what the weather I have been getting out and walking and going to the gym as well. It's just the best feeling to be able to walk in the rain, I've never seen it as miserable and horrible but more exhilarating than anything and to not have the cold wet weather affect me or my chest just makes it that much more amazing! 

I did make my dad walk in the rain the other night and lets just say I'm not sure he appreciates walking in the rain as much as I do, we got caught in a rather heavy burst of rain that was accompanied by a lot of very powerful wind which meant a umbrella was not really an option. I thoroughly enjoyed it, the swear words that followed from my dad suggest he really didn't lol! 

My steps are going to take a serious hit this week though because I'm having to make sure I rest throughly from this chest infection but I'm also "revising" for my Driving theory test, I'm not holding out a lot of hope for it but we will see and if I don't pass it isn't the end of the world is it?

As always, thank-you for reading and chat soon. 
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8.1.16

New Year... New infection....


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After you have a transplant the general consensus with everyone around you is that your life had miraculously changed. It did. However not in all the ways that people think. People seem to be under the impression that you don't go to the hospital or the GP as much or you see less doctors and less specialists than you used to. They think that your medication becomes less and that you are just miraculously like a normal person again. 

Transplant was a swap. Transplant gives those of us who do it a much better quality of life 'hopefully.' It certainly has with me, I can walk more than I've ever walked and I'm not asleep all the time and I focus again and I've been able to do things that I certainly wouldn't have been able to pre-transplant.  The medication is still there though, admittedly it got rid of the one medication I wanted gone more than anything else in this world and that alone was worth the whole transplant thing; the wait, the operation, the recovery, all of it. Getting rid of that one medication was worth the entire thing! I do still have lots of medications though that changes all the time and does also have it's side affects but as long as you don't mind popping a few pills through the day they really don't have that much impact on your life and I've been popping pills through the day since I was eleven years old so really that was something that I could handle but my life isn't different in that aspect I still take medications I'm just very fortunate that I don't have to be on a IV infusion 24/7 anymore and that's the difference! 

The thing is it doesn't get rid of the doctors, I probably have the same if not more doctors as I did pre transplant and because of complications to do with transplant I will be seeing more of them. I've probably been to my GP more since my transplant than I have ever been to my GP before and that's because we have to be so, so careful and we're having to get used to a whole new condition essentially. So for instance, right now I have this lung infection and I've had it for a few weeks now and I've been on antibiotics for a few weeks for it but it's just not shifting it, now I ring Papworth to keep them up to date and we liaise with my GP also but it's hard for me to know if it's a bad infection or if it's nothing for me to worry about because it's not affecting my temperature or heart rate (Lung function to be determined as I've lost my lung function machine, whoops!) but before transplant I would have known if something was bad, I would have known what to do for it. Now though I don't have a clue so I'm having to go with my doctors and do as they say which I find very hard because I've always been very much in control of me and my condition and it worries me when I'm having to rely on people that don't necessarily have the experience to deal with some-one in my situation. I guess it's something that will take time and the longer I am post transplant the more confident I'll become in being able to tell if something is "normal" for me. 

The good thing however is that my body seems to be able to deal with infections better and I'm not completely bedridden like I once would have been and I'm still managing to get out and walk (although not today it would seem as I am feeling rougher than usual.) It's nice though that I can still do that although whether that's good for me and I should just be resting is yet to be decided as I haven't really got a clue anymore lol. 

Papworth have said if the antibiotics don't start doing something by Tuesday then they'll want to bring me in sooner than my clinic date which is the 21st, just so they can give me a looking over and check out my bloods and x-ray and stuff rather than me going to a&e which I'm more than happy to do because to be fairly honest I wouldn't want to go to a&e again not after the palaver in October LOL.

It's nice though that a lung infection is my biggest worry at the moment, I have others that will pop along soon enough but for now I'm happy that the only thing I'm worried about is my lung infection and that I possibly may not get my 10,000 steps in today lol. 

As always, thank-you for reading and chat soon. 
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1.1.16

The Year I never thought I'd see...


I've just looked at the past two years worth of New Years blogposts and I can tell simply by reading those post alone that I wasn't expecting to make it out to this year if my Transplant didn't happen. I made absolutely no plan for this year, I had given up planning anything in advance and quite honestly my hope had dwindled down to barely anything this time last year. Trying to remember how I was feeling is a bit like looking through fog, I can remember it but trying to recall that feeling is hazy and I can't remember it to the full intensity it was, I guess the only time I'll be able to truly recall that feeling will be if I ever find myself in that position again. 

This year is so different, although I don't feel like I can plan years in advance I do feel like I can maybe plan for this year and the next and I won't make resolutions for myself but I will have aims of things I want to achieve and do. 

First and foremost - Get my Passport sent off in January - I managed to get all the paperwork and that filled in and countersigned etc. at the end of December but I figured it would be safer to send it off in January because of you know the postal service in December can tend to be hit and miss and we all know the type of luck that I have and i would most certainly have gotten lost if I had sent it in December. Just watch it get lost when I send it off now I've said that LOL. 

Go Abroad - Go on my first holiday abroad. I've never been abroad unless you count Gibraltar when I was a baby and that's where we lived at the time (I don't as I can't even remember it.) I want to go abroad for the first time and even if that's just for a day or two I don't care I just want to have that experience and even if it's the last time I'm ever able to do it I can say that I did and it will be a life experience that I won;t have missed out on :). 

Pass my Driving test - We all know I'm learning how to drive and therefore this was obviously going to be on my list of things I want to get done this year. I have my Theory test this month (eeekkk) and hopefully I will pass that but the ultimate goal is to be able to drive, I think if I manage this I may feel more like a actual adult, I'm 25 and still don;t really feel like one, when's that going to happen hey? 

Find something - Find something I want to do and that most importantly makes me happy! I want to find something that I can enjoy but also provides a income, I don't want to end up in a job that I don't enjoy and that I'm only doing because I have to. That's a big one for this year. 

Plan my One Year - I plan to do something for my One Year and there are currently a few ideas floating around but we need to fully plan it so that needs to happen. 

I think that's enough for me to be getting up to this and for me to aim for this year don't you think? But I'm excited to do it all :-) 

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