17.4.17

The Fight Continues...


Well maybe the blog is a little bit later than I promised but don't be mad it's a hard one to write or to organise in my brain to coherently explain really, I'm not even sure I can write it now but I'm going to try and attempt to. 

Right so on March 29th Papworth had their meeting about me whereby they discussed my entire case everything that's happened and where we are or were or had gotten to at that point, this involved surgeons retired and current, consultants, transplant co-ordinators the whole lot. In that meeting they came to their final decision about whether I should be allowed to have a second transplant or whether it was even possible to do anymore, whether the Aspergillus had gotten to a point where it wouldn't be a danger to me all that lovely stuff. They came to their decision. Now whether rightly or wrongly we had agreed to have a phone-call on the Thursday. One of my original Transplant Co-ordinators rang me, I was in a lovely beer garden in one of my favourite places in Norwich, my co-ordinator really did try and convince me to come in and talk about the results but we know me I just wanted to know the answer. You could totally tell that it was not news he wanted to be telling me. I can't remember exactly what was said although Mark very sensibly recorded it so I can refer back to it should I ever need to or feel the need to depress myself. Ultimately and at the end of the day I was told they had come to the decision that I couldn't be re-listed for transplant. 

I am okay with this. I understand the decision entirely:-

- The cavity has gotten bigger which means it is closer to the walls of my lung.
- The aspergillus although better is still there. 
- There is NO way to test the aspergillus and see if it is dead or alive.
- There is still the blood flow issues of doing a Double Lung transplant on top of a already transplanted heart. 
- There is still the join issues in the lungs whereby they may just collapse.
- The sack around my lungs is stuck to my lungs in reaction to the Aspergillus which is a good thing as of right now as that's what is keeping an aspergillus from getting into me but if they were to transplant they wouldn't be able to take out the lungs without peeling it off and there's a 99% guarantee it would release something into my chest cavity. 
- Ultimately they came to the conclusion that if I had a second transplant I would with great certainty die. 

All my doctors, surgeons and co-ordnators know me very well and they know the kind of risks I'm willing to take and I'm willing to take some risks let me tell you. I was willing to have the transplant before the whole Aspergillus thing occurred and even then it was a risky thing, I was still willing to do it when the fungi appeared but when they basically say to you "You will die Stacie." it would basically have been suicide. It was by no means a majority decision I had people fighting my corner and who still thought I could do it but at the end of the day a lot of people are influenced by their familiarity of me, they don't want me to die as much as I don't want to and by taking transplant away from me that takes away the potential for me to live a long life. So looking at my case without knowing me at all everyone would say no, they phoned hospitals all over the country and asked fellow consultants and surgeons who all basically said they would not touch me with a barge poll. Using a set of perfectly good lungs on me would be a waste they do need to go to some-one who can give them a chance and unfortunately I just cannot do that. It's sad but that is just the way that it is and I knew that it could go that way. 

I think people thought that if this was the way that it was going to go that meant 'this is it, Stacie's going to die' and it does mean I will die but it does not mean I'm going to die NOW. I'm now essentially living with a chronic illness a bit like when I had PH but different. I am stable for now, although I wish we had stabilised me at a better point so I had a little bit of wiggle room the point is I am stable, which means I just have to adapt my life to my new way of living. I feel like the past 9 months has been me waiting for confirmation of how I'm going to live the rest of my life and now I have that confirmation. I haven't asked for any life spans or anything because I just do not need that I don't need a number applied to my life and ultimately they can't give me one anyway it would just be an educated guess that would then rule my life. I know if they said to me "If you can stay stable maybe you'll get a year or 2" I would then hit 2 years and just expect to die and probably start declining and I don't need that. 

So this week I have a fair few things to do and get hold of people to see what we can get in my life to make things easier so stair lift potentially, shower options, potentially care options all that type of thing. I guess the idea now is just for me to get out there and live, my life isn't over it still has so much potential and I didn't name my blog frivolously there is a reason because I genuinely believe Life is worth the fight and it still continues to be I'm still fighting for my life, I won't let myself just fizzle out and die. 

I will have bad days and there may be more of them but I know I have wonderful people in my life who make them better and make my good days just the most wonderful days. This was never going to be a death sentence for me because I have been chronically ill my entire life transplant just gave me a year off from that and you know what? I am thankful for every second of that year, it may have been like dangling a carrot in front of me but at least I got the experience and I get to appreciate and remember it. 

I'm not sure how well this all flows guys but I hope it helps and answers some questions you've been having. 

As always, thank-you for reading and chat soon
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10.4.17

Happy Days...

Disclaimer:- I do plan on writing a blog about the whole health situation and the result that I got in the end, I promise, but firstly it has been a lot to process and I also have an appointment on Wednesday where we plan on having a massive talk, to talk through what happens now and what I do going forward so I promise there will be an explantation as to all the goings on with me health wise and all that jazzy stuff just when I actually have ALL the information too. 

Firstly though let's tell what I've been getting up to, to keep myself occupied and busy and I'm so sorry it's been so long since my last blogpost but I haven't been stagnant or just lying on my death bed I have actually been doing things. After York I really didn't get much better my ribs have taken an absolute age to heal and the problem is I have to keep coughing otherwise I don't get any gunk up and then I get worse so it's a bit of a fight to keep the balance right so for a good month they were in pain and have only just started to feel a little better this week but that did not stop me from enjoying myself. Mark and I threw a March Christmas (!) for us and 6 of our friends. The idea was that I love Christmas especially the prep bit for it and ultimately no matter what Papworth's answer was going to be, whether a yes or a no, we definitely know I'm not getting 60-70 years worth of Christmases into my life so why not hold a Christmas and get to spend it with people who you don't normally get to spend it with?! So we asked our guests to just bring a £1 gift each and that was it, and themselves obviously, and we would do the rest. I was basically chief present organiser LOL, I was told by Mark to just do £1 gifts but I couldn't I gave myself a £5 limit and brought 8 gifts all kind of unisex gifts that anyone might want. Mark added what I would call "duff" gifts like a bottle of non alcoholic beer, unwanted shower gels, you get the gist... anyway so the game was basically a pick and steal kind of game and it was really fun and I think people enjoyed themselves even if the presents weren't exactly premium gifts I think that's what made it a little more fun! I also provided a kind of Christmas party box for everyone that had a few bits in that are classic Christmas;- so socks, chocolate coins  and such and then they could also fill the box up as the afternoon went on. I also put together a "table present" which is a family tradition in my house, after dinner we always get a little present which either has Jewellery, perfume or scratch cards in, so I did my own cheaper version of that. I put glowy, ravey rings and bracelets in there a tester perfume and a £1 scratch card. I think the little boxes were a hit. 

The day as a whole was so lovely! I know it seems silly but it's little things like that, that make me happy, it doesn't have to be some expensive holiday or fancy meal somewhere just a bunch of friends together having lunch was lovely. It wouldn't even have to be Christmas we just wanted to have a Christmas and that didn't even cost very much to do at all. I mean obviously it's not something you're going to be doing everyday but if you can I think it's so totally worth it! 

After Christmas I probably did overdo it a bit so I have had to do a fair bit of resting but it's all good really, I've been really getting into my colouring and I know it seems completely sad and lame for me to be excited about colouring but really guys it is just so relaxing. I haven't been having a bad time with my anxiety but sometimes it lingers there in the background, people who suffer with it will know what I mean, but when I colour it's a focus on something else and takes my mind off of it. I really want to get back into reading but since transplant my concentration levels when reading are just not there at all, I think it's the prednisilone, so I may have to work my up with that one. 


The next big activity was HARRY POTTER STUDIOS!!! Now long time devoted readers will know how much I LOVE Harry Potter the franchise and how ingrained into my life it is and will also know I have actually been 4 times previously. It has however been a few years since I've been and they've added a few new bits to it since the last time I was there and I've been wanting to go see them especially as they had literally just opened the forbidden forest exhibition bit and I was desperate to see the train as well. This time my lovely bestie Bernice and her Husband Scott came along and just omg we had so much fun. I didn't get on a broom this time but then I already have a tonne of photos of me on a broom so there's no need for any more really and Bernice wanted a train picture instead buuuutttt we did manage to persuade the boys who have never been on brooms to go on them and I can honestly say it was the funniest thing I have witnessed in my life. For two men who were adamant they weren't getting on them, they got pretty into it! We were proud of them! 

Right so the reason it's quite a big thing for Mark to have gone to this with me is because he's NEVER read a book of Harry Potter and had never seen one movie either until I forced him to a few days before to watch the first one. Don't worry though guys I think he enjoyed it as much as someone who hasn't grown up with a franchise can I guess, there's a lot that he's able to appreciate in how it's made and all that type of stuff so it wasn't completely wasted on him and I am making him watch all the movies, it just may take some time, we will get there though!!! 


So those were a few of the things I've been getting up to for the past few weeks, we did actually attend a ball as well which was just lovely even though finding dresses has become very hard work because I can't try anything on, so annoying!!! We've been having fun though Marks VW camper van is out of hibernation and he managed to get her going which has been lovely because it has meant we've, managed to get out to the coast and we'll be able to do that more as the weather gets nicer as well. 

Obviously this blog is a little bit vaguer than I ideally would like but I don't want to go posting a blogpost with half the information if that makes sense so I'm sharing the nice stuff and then once I have all the details with absolutely everything like plans, moving forward, treatment, travelling all that type of stuff I can give a much clearer view of everything so you can understand it better yourselves because I know when I shared the information last Thursday a lot of people were quite shocked and probably weren't quite sure how it had gotten to that point. So if I can give as much information as I am able to give then you guys can process it in a much better way. So I promise to blog Wednesdays appointment and I'm going to warn you now it's not likely to be pleasant and very blunt so positivity may be lacking in it as it will be very much just "this is the situation, this is what's happening" 


As always, thank-you for reading and chat soon
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4.3.17

A York Tale...

Once upon a time a girl named Stacie and her Boyfriend decided to pay visit to the historical cobbled streets of the City of York. York was a fine City with much to behold however Stacie's lungs were being total utter poo-bags from the moment they left the lovely land of Norwich and continue to torment her still. This did not stop the pair from having a most joyous time though and Stacie also discovered on her journey that she is pretty sure she's invented Car Narcolepsy.... The End. 

Okay so not really "The End" but that is basically my York Tale in a very basic non informative way :-D. We did go to the lovely city of York though, honestly it really is a beautiful city with history just seeming to ooze from everywhere I felt quite at home there, it felt very much like Norwich to me and feel very much at home here, well obviously as I basically live here half of my time. The journey up there was much longer than I had expected I guessed it would take about 2 hours but nope it was around 4 hours so boy was I wrong. Pre-warning to anyone who ever has to do a road trip with me, I cannot stay awake in cars! Like at all. I've been saying it for days but I'm pretty sure I have some from of Car Narcolepsy if that's even a thing (which it totally is I reckon), no matter what I do I just cannot keep my eyes open in a moving car, mid conversations I'll just be nodding off with my eyes slowly closing and my head doing the whole head bob thing. It's a problem, well not for me just for the person unfortunate enough to be in the car with me :-/ 


I think we really did manage to pack quite a lot in, in the short time we were there. First off we went to the the York Minster, I now know that Minster just basically means Cathedral. I love going round places like that, I'm not religious as most of you know but religion is part of our history and is something that is still interesting to me. During my degree I never got on with the architectural history of things but I can appreciate the beauty and skill it must have taken to build and make a building like that, it truly was amazing to be inside of it. We decided to light a few candles whilst we were there as well, it's not something I've ever done before as I'm never quite sure what lighting a candle is meant to "do" but it seemed like a lovely gesture that would be of some meaning especially in that venue. So I lit a few for lost friends and my donor and it felt special for them.


We then made our way to "Betty's Tearooms," everyone and their dog told me to go to Betty's and you know, who am I to say no to a afternoon tea?! I enjoyed it in there and it was lovely, one waitress kind of ruined the experience for me as she just seemed quite rude and I understand she may have been having a bad day or something but it just kind of put my back up from first interaction I'm sure any other day and she would have been lovely. The tea was lovely though and the sandwiches were actually sandwiches that I could eat, non of this flouncey crap added to it! and obviously my scone was super yummy. It's always hit and miss when it comes to the desserts on afternoon teas but I got kind of 2 out of 3 the chocolate truffle thing was amazing, but their Macaroon was odd it wasn't bad but it was Apple and caramel both of which I couldn't taste at all but it was still OK. Then there was a tart that was just eww but that's because I really don't do pastry so no-ones fault there. 


We stayed in a lovely hotel called the Hotel Indigo so if you're ever there I would completely recommend it, it was really close to everything and made life really easy especially with the wheelchair. Our next day was just as busy, we went to the Train museum which I know doesn't exactly scream excitement or anything but I find that the kind of stuff really interesting and they had some of the Royal trains there!!! They were really cool to see and is it not just really cool to see how we as people have evolved over time in regards to the way we travel?! How at some point in time going a meer 70mph on a train was seen as some kind of death defying stunt and now we're annoyed if it's not hitting it's target of like 190mph. We did some walking around gardens and the river and stopped for lunch as well, it was lovely to just sort of meander and we went down the Shambles as well, certainly can't say that was the best street for a wheelchair LOL. Our evening was dedicated Ricky Gervais, I didn't really know what to expect when seeing him as I don't really have a opinion on him but he was funny, there were a few moments were I was a bit like "Oh that's probably not OK..." but I think with any comedian you go to see you'll get that so sometimes you just have to expect you'll hear some jokes that push the line.


On our last day we just sort of took it easy until we had to check out of the hotel, or I say "we" took it easy, I took it easy whilst Mark ran around crazily packing and making sure we had everything. Honestly I understand why disabled people just don't make the effort to go places sometimes because it really is such hard work for whoever is looking after that person and Mark does so, so much. The plan though was kind of on our way home we would visit a few of the outlying villages of York. The weather was not great but still okay enough that we could enjoy it and my "Car Narcolepsy" seemed to be kept at bay :-D 


As lovely as our trip was, it was tinged by my lungs being utterly awful to me. It's hard to figure out sometimes because it could just be a muscle, it could just be phlegm sticking in there, it could be pleurisy or just a mixture of all of them or you know it could be something altogether different that I have yet to experience and have a name to put to. Whatever the case I was dosed up and still am, I'm paying for the days away at the moment and I wouldn't have it any other way but I do wish my body could just be nice to me sometimes. Why do I have to "pay?" Why does me and my body have to physically pay for a nice few days away with my boyfriend? And not just me really because he in extension pays too because he then has to look after me more not just physically but mentally as well because I start to get down about the fact I'm paying for having a nice time and why can't my body just do as it's told? Charge me £20, £50, £100 I'd pay that! I would just budget it in. Annoying as it is it's the way it goes and just part of my life now, I just need to grumble about it every now and then. At least I got to go away and have a lovely time with my wonderful human and make more lovely memories with him :-)


As always, thank-you for reading and chat soon
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