26.9.15

Looking Back...

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In all honestly I haven't been massively looking forward to today and yesterday. On the 25th of September 2014 I had my third false alarm and quite frankly it was one of the worst days of my life. I can look back on it now and see it as a life experience and one I needed to get me where I am today, I can look at it with the hindsight I now have and know that those organs clearly were not "meant to be" as I then received my gift 8 months later but the thing is a PH friend lost her life that following morning after receiving those lungs and it made a bad experience even worse. There was a whole community of people in mourning and although it would have been sad that one of us didn't get our transplants the fact that one did would have lifted peoples spirits a little but the reality is sometimes transplant doesn't always work and unfortunately this was one of those times. So this time last year I was devastated about the fact that my transplant had yet again not happened and then feeling the loss of a member of our community at the same time. It was a awful time. It's easy to look back with hindsight because ultimately I can say the following 8 months of waiting was worth it but at the time all I remember is everything just being very, very hard! It's not just a sad few days for me but for Hazel and her family and the donors family. At least for me I got my happy ending but it's a hard few days for me to look back on and remember. 
I have maybe done a bit of retail therapy to cheer myself up and the past few days has seen me quite a few hundred pounds worse off but it's been worth it. I spent a small fortune on getting my blog redesigned which will be happening very soon guys and I cannot wait for it. This was going to happen soon but I was mopey Stacie yesterday and thought "Well I may as well do it now :D" and so I paid my invoice and bobs your uncle, there you have it, you'll be seeing a lovely new and fresh "life is Worth the Fight" very soon :-D. I had the stressful experience of picking out some new glasses today as well and for the first time in 24 years I will have prescription sunglasses! I cannot wait. I actually look quite good in sunglasses I've just never really been able to justify buying them but today I took the plunge whilst also buying two other normal pairs of glasses. Now £175 is a lot of money to spend on glasses admittedly but considering I'm literally blind without them and wear them 24/7 it's a worthwhile investment for me. I literally had to whittle down my choices though I was there piled high with glasses unable to choose for about a hour, in the end I luckily had a very honest opticians/sales lady help me decide and she kindly told me what she thought look rubbish on me. I'll do a blog on them once I get them back on the 14th, Eeeee most excited. I also got my new phone which isn't really that new as it's just the iPhone 6s and I had the 5s but it makes me happy. 
And yes my friends Christmas is in full swing! I'm actually far  more behind Christmas shopping than I should be but we're getting there and I hope to have it all done by the end of November. 

As always, thank-you for reading guys and chat soon
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16.9.15

I DID IT...

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So it would seem that the year 2015 has been a year of achievements for me, firstly I got my Transplant which is and has been a ultimate life goal or where I had been heading to for 13ish years and it finally happened after my very long wait of 3 years but there was also something else I was working towards too. Since February 4th 2011 I have been working towards a Bachelor Honours History Degree.   

It wasn't long after I started my degree that I started to get worse and in May that year is when the whole transplant stuff started happening and even though it was a scary process and I probably could have stopped doing my degree then before it even really had a chance to start I decided "No, I have to have something to keep me busy!" I refused to let the whole needing a transplant thing completely take over my whole life and by doing my degree it kind of gave me something to aim for that in my eyes was more achievable than getting a transplant which we all know may never have happened. Admittedly I could have died before I finished my degree and I nearly did but it was kind of a light at the end of the tunnel that I could aim for. You can get so stuck waiting for your transplant to happen that you forget other things and just generally stop living. My degree provided me with some kind of hope that I could have a life after my transplant I wouldn't just be the girl who just waited for her transplant to happen. 

Having my degree gave me something else to focus on and it wasn't all just transplant, transplant, transplant. Admittedly there were points that I thought "Do i really need to be doing this? I mean I'm probably just going to die anyway." Then there was just after I had, had my bout of septicaemia, my PH was getting worse and I was still trying to recover from the infection (it took a long time) and this meant I couldn't stay on the track I was previous to this doing 120 credits a year so the aim was to get my degree done in 3 years but physically and I suppose mentally as well I just couldn't keep on top of the workload so around Christmas 2013 I had to swallow my pride and drop one of my modules which therefore meant it was going to take an extra year to finish my degree. It was a blow to me because by Christmas 2013 finishing my degree by June 2014 seemed doable I felt like I could make  June 2014 but how the hell was I going to make June 2015? I carried on though and the module I dropped was the one I had been most looking forward to so I felt like that would keep me going enough because I would be enjoying it rather than it being the complete chore that it could have felt like. I'm lucky I finished some essays through this degree, sometimes I was just to ill to get out of bed and stay awake long enough to do them but I did. I think through the entire thing I missed ONE!  

Then guys that fateful day in May I had just spent a lovely evening until 4:30am revising as my exam was coming up on the following Wednesday so only a few days away and Low and behold I finally get my transplant. One of my first thoughts was "crap my exam is on Wednesday" and then following thoughts of "If this is a false alarm I'm missing a entire days worth of revision for no reason" (I obviously couldn't concentrate enough to take any revision with me that and the fact I had had 30 minutes sleep lol) and finally "crap I'm going to have to do it in September" I kind of wanted to just get the exam over and done with but obviously I was more than ecstatic about my transplant and would much rather have been doing that than a exam although I do remember contemplating asking if they'd let me do it in the hospital as I was awake and fairly copes mentus at the time lol I might have been able to pass it... maybe ;-) . For the past 2 weeks though I have just been thinking "Oh for God sake this should have been over by now!" just because I hate revising it's the most mundane thing in the world.     

So today on Wednesday 16th September 2015 I have officially finished my degree!!! I DID IT!!! 

I'm honestly not the smartest person in the world and whatever I have achieved in my life be that personally, academically, medically I have always had to work very hard for it. I have had to dig very deep at times for motivation and determination to do them. Exams have never come easy to me either I find I have to be very interested in the topic that I'm learning about otherwise I have to force myself to concentrate which I had to do a lot through this degree. I think whatever I get I'm just proud of myself for doing it because there were many times in the past 4 years where I simply could have just said "You know what? Fuck it! Why do I need this?" but I think part of me just knew that at the end of it I would appreciate it and I've officially managed to get a degree without all the student debt associated with it which I'm so chuffed with because I'm sure that would have stressed me out immensely. 

So Guys massive achievement No.2 of 2015 is that I have officially FINISHED my history degree. 
The Second biggest WHOOP I have ever done in my life :) 

Now to figure out what next... possibly driving :D 

As always, thank-you for reading guys and chat soon
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11.9.15

Contemplating...

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I am a world class procrastinator. Today I have been doing work and by work I mean uni revision as my last uni exam is on Wednesday Honestly I just can't wait for it to be over and for me to be able to move onto the next chapter of my life. It's a little annoying for me because I just think how this should have been finished last year and for some reason that affects my motivation a little bit but it's very exciting that by 13:30 on Wednesday I will have finished my uni segment of my life I honestly can't tell you how excited I am for it, I feel like it's kind of the bit I'm waiting to be over before I can start to do things although I know that isn't entirely true because I have to wait till the end of November before I'm properly allowed to you know use public transport again. 

Because I can't drive I do feel slightly restricted by the fact I can't use public transport yet although after my exam is done I plan on learning how to drive. I'm going to take the easy way out though because I really don't think I would be able to learn to drive a manual so I'm going to try automatic. I have to wait till the end of September though because then it will have been 4 months since the old transplant which is how long you have to wait. Does anyone else feel like it's been absolutely forever?! 

Hopefully though I can do lots of exciting things. I've got my PHA conference at the end of October which is exciting and scary at the same time. I'm talking at it, hopefully not for that long, but about blogging, about why I do it, the increase in people with illnesses taking up blogging, whether it helps and social media within PH and transplant and the effect of it. It's really exciting for me because I've been a part of the PH community for 14 years now and for me it's just kind of coming round full circle for me. I used to go to their family weekends when I was a teenager and they were awesome and I've been going to their conferences for several years now and it feels nice that I can kind of give back a bit I suppose just for doing something I love doing and not just newspapers, news and magazines. It's quite amazing how many people have taken up blogging now though, I know when I started I kind of felt a bit odd because I only knew a few transplant people who were blogging at the time and then a few PH people started doing it too but that was it so it was a bit strange to be pouring a lot of yourself into a blog and letting people read it but it always seemed to help. Now though there are a lot of PH people who are blogging and it makes me happy because there are so many different sides to PH, more than any one person can cover so it's nice that people have different peoples experiences to read through as I'm sure someone out there with PH will have also have experienced it at some point.

I'm still not sure what I want to do after my exam and after I've had a bit of fun but I do know that I want to do something that helps people. I like the idea of doing something to do with transplant and PH because I would like to give back, they've given me so much over the years. It's just hard to know what really. I suppose we'll see just need to get Wednesday over and done with and then I can contemplate my life, it's really nice that I now have that luxury :) I know that I will be redesigning my blog very soon so I've got that to look forward to yay. I need a new look for my new life and fresh start :-D  


As always, thank-you for reading guys and chat soon
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6.9.15

Scars and Modesty...

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You know as a a heart patient, a PH patient and now a transplant patient and just a regular visitor to hospital you lose all modesty it is something that generally gets left at the door the second you walk in a hospital or a GP or any sort of medical surrounding. Growing up in hospital you learn that you don't have the time to be shy and in fact life is a million times easier if your aren't, so saying that I've never really been afraid to whip my top off when asked (by the right people that is.) I'm not afraid to be topless in front of 10 to 20 doctors which has actually happened, when a nervous student doctor asks you to take off your top and bra and if that's okay and you just laugh because it's hilarious that they're even nervous about it. Transplant brought a whole new not caring about all that stuff to me. Firstly there was the catheter, the grimmest thing ever and was in fact one the things I was least looking forward too and then there was being bathed by nurses and there's absolutely no way to protect any sort of modesty you have in that scenario. After a transplant you are basically a child again but the nurses definitely made me feel better because they were saying to me how they literally don't even think about it, it's what they are there for and they aren't judging you they just want to make you feel better and get you clean so that kind of made any awkwardness I had go away. People will tell you that I really have none at all because I literally take my bra off in hallways before x-rays just to save time.

Why am I saying all this? Well the thing is, it's my scars. Or more specifically my main scar. It's not that I'm shy about people seeing it or reserved about it I just don't like it. It's one of the things I knew I was going to have to get used to and the thing is the majority of my clothing is low cut and you will obviously see the scar. I don't like it and I don't like how much people immediately know about me because of it. I mean they may not know initially that I had a transplant but they can at least guess that I had a major operation probably heart related and can probably guess that I'm ill or was ill. I really don't like the idea that someone I've never met can know that much about me just from a glance at me. It's one of the things I hated about my IV line in my chest and wearing oxygen out in public because they were just massive neon signs that said "ILL GIRL." 

The problem is people aren't "allowed" to mention that they don't like their scars. I've seen people ask how they can reduce the redness of their scars and be bombarded by people saying "Why would you want to hide it?" "It shows that you're a fighter" "You should be proud of your scar" etc. etc. etc. I'm not proud of my scar at all, my scar didn't do anything, I did! I'm proud of me. Honestly if you say anything remotely bad about your transplant scar it's like you've said the most heinous thing on the planet. It's a self confidence thing as well we go through so much and even before transplant we are littered with scars from various things and for me at least they're reminders and sometimes I just don't want a permanent reminder on me, you know? Or a big bold sign saying "This girl went through something!" The thing is it's not that I want to get rid of all of it but sometimes I just want to be able to erase the top of it, the bit that people see because I really don't care about my drain scars because very few people see them and then my scars from all my IV lines you really have to be paying attention to see but I think even when my main scar fades it'll still be visible so ideally I'd just like to erase the first 2 inches of it. 

As always, thank-you for reading guys and chat soon
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5.9.15

Progress...

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Hello my lovely lot, 

I'm sorry it's been a while but you know life and all that. A little bit of a catch-up though. On Tuesday I had my 12 week biopsy which was actually more like my 13 week biopsy but so long as everything was okay with it this was potentially my last biopsy for a while. The day actually went really fast but then I had friends there to keep me occupied which is always lovely and I don't get too anxious beforehand. This is the first time I've properly woken up and been totally lucid during the actual biopsy which I can't say was a totally fun experience but I didn't panic which you know points to me, I did start coughing and my consultant did decide to show me the inside of my lungs which I wasn't all that appreciative of as they were trying to stop it bleeding but I suppose if they hadn't been down in my lungs at the time I maybe would have found it interesting lol.

It's just a lot of waiting after that really I had to stay overnight just in case you know something happens after the biopsy. On Wednesday I got to find a bit about my donor only the age and sex as that's all Papworth are allowed to say now due to a change in there rules or something. I'm not going to be saying what I found out because for some reason I kind of feel like that's not really my information to tell I've obviously told my nearest and dearest but it's not something I'm going to be announcing to everybody. I do feel a bit weird about it because it's not exactly what I was expecting to hear but it's nice to be able to apply that little bit of knowledge to my heart and lungs now. My donor isn't maybe a man or maybe a woman they aren't some unidentifiable age. I'm never going to be one of those people that needs to know everything about their donor because the idea of it makes me feel a bit odd I think if I knew they had children and a family it's a bit harder for me to process, at the moment anyway it might change further down the line I don't know.

I found out Wednesday afternoon that I have no rejection again which is awesome which also meant I could come off one of my drugs called Itraconazole but that does mean that I have to have more regular blood tests now because coming off of it means one of my blood levels is going to go a bit wonky but that's fine. It means I'm down to 9 different drugs now probably soon to be 8 and then that probably won't change. It's the first time I feel like I've made some proper progress for a while. I feel like I've just sort of been coasting for a while but now it feels like I'm moving forward again. It's taking me a bit longer to recover from the biopsy that usual which isn't great but I'm sure by next week I will be tip top again.

I then got to spend a few days with the Bernice at her new house which was lots of fun and we had lots of good bestie time. I love that I can just go away now and not really have to worry too much and all I really have to remember is my pills which has been ingrained in me since I was 11 years old anyway so it's not like it's a new thing and then because I'm with Bernice we have to do drugs at the same time, so we can't exactly forget to take them lol. We went to the cutest little tea shop as well I would gladly go to somewhere like that everyday just a nice pot of tea, a toastie and slice of cake all in a antique setting. I need to find somewhere like it in Swindon. Highly unlikely though I know LOL.

Hope you are well  

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