16.4.16

Found...

This time last year I went to a psychologist, you can read about how that went down here, it was a frustrating experience to say the least. Admittedly this wasn't the womans fault because she hadn't dealt with a transplant patient before and certainly not someone in my situation where I was dying and was approaching 3 years on the transplant list. So she ultimately told me I needed to find some hope now this might be good advice but I certainly didn't consider it good advice for me (still don't)and certainly not good advice for someone in my kind of situation. I was hopeful at the time, I was still hopeful that my transplant would happen but I was also extremely realistic about my situation. I could feel myself getting worse and worse and my one glimmer of hope was just seemingly getting further and further out of my reach, I challenge anyone in that situation to find hope. I think the only other bit of hope I had at the time was that if I was going to die it was going to be quick and hopefully not as painful as I was currently finding things. I'm not sure that's the kind of hope this woman wanted me to find though. My grandfather died a few days ago and his death was the kind of death I was trying to avoid desperately it was long, drawn out and painful and in his situation no-one would have dared told him to find some hope because that would have been incredibly insensitive and inappropriate.

I'll give you a run down of my timehop for the past few years....



We have this time 4 years ago I went to Papworth where I got told they'd accept me on the list and I signed my forms and I was the most excited person ever! I was quite literally on cloud 9. If that psychologist had met this Stacie she wouldn't have told her she needed hope because I was full to the absolute brim with it. I remember leaving that day and just being so happy and nothing in the world was going to stop me from getting the thing that I needed.



Then we have 3 years ago, you're probably wondering why there's a picture of my then laptop. I was in hospital at the time in Hammersmith I was watching Schindler's List (because I'm cool like that) and this was the night before I was going to have my Groshong line put in. I had deteriorated to a point where I now needed 24 hours a day medication infused into my body directly into my heart. This might seem like a difficult situation and it was because I certainly wasn't enjoying the prospect of having a tube in me  and being attached to a pump for the rest of my life or until I got my transplant. Even with that though I was still hopeful because this medication was going to keep me going until my transplant happened and I knew it was what was best for me at the time and I was going to do anything to stay alive :).     

Now we have a year ago. I had just been told to find "hope" I was hitting 3 years on the list, I'd been attached to my machine for 2 years  and in that time it had nearly killed me with several infections and I was on my 3rd line because of the constant skin infections having a line permanently attached to your chest seems to cause. I was running very low on hope I wasn't allowed to try any of the new PH meds that were coming out because they potentially could of made me worse I was maxed out on everything I could possibly have been on and there was just nothing to do but wait. Waiting for something that may never happen and having no other options left open to you was the most demoralising experience I have ever been through no wonder I was seriously lacking hope. I always say I would have my transplant again in a heartbeat but the waiting part that was the difficult bit and that's what takes all your strength, mentally and physically. 

I have the hope I need now but then my transplant happened, I'm alive now, I'm living my life and that's amazing! I'm not some walking zombie just trying to get to the next day. I have things to look forward to now and with that comes everything you need to carry on. It's amazing the difference a year makes if I could tell the Stacie of a year ago where I am now she wouldn't have needed to find hope she would have had everything she needed knowing what lay ahead. I wish I could tell her that we make it and there was no need for her to be as sad as she was it happens and everything gets better. The pain goes! We have a infection but we're fine. There are just so many things that she didn't know she had to look forward to and I'm sad for the me I was a year ago.

Although I'm sad for year ago Stacie it's nice that i can look back and know how sad I was and how hard I was finding everything and I know I made it, I pushed through all of it I defied doctors expectations, I pushed through the black cloud that was constantly surrounding me threatening to take me out always and I made it like only I know I can. 

As always, thank-you for reading and chat soon
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14.4.16

Love... hate...

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I have a love hate relationship with A&E. I think you can generally only get this love hate relationship  when you've had to go to it and experience it quite a lot. I love A&E for what it's done for me in the past they were amazing when I had Sepsis and I can't fault anything they did for me that day absolutely the most splendid job ever! However the past few times haven't been amazing but I continue to be thankful for absolutely everything they have done and continue to do for me.

Yesterday I woke up with a low lung function it normally sits at 2.53 and I was blowing between 2.19 and 2.24 and it just wasn't going any higher and my temperature was 37.8 as well. We generally have to keep an eye on these things and if our lung function goes 10% below our regular and accompanied with a high temp we have to ring our hospitals and let them know. I felt really crap yesterday achey and shakey and just generally awful. I went to the GP and she was absolutely lovely and although my chest sounds okay she put me on some antibiotics as I'm coughing up a little bit of phlegm but she was concerned about my high heart rate and my low blood pressure. 

I got home and had got into bed and then my GP decided to ring me and say that she was really concerned about my high heart rate and low blood pressure and that she wouldn't be able to live with herself if something happened so she said she would rather that I went to A&E. I did as I was told because I guess it's better to be safe than sorry and luckily she had rung ahead of time so they were expecting me so there wasn't too much waiting around which was great because nowadays I enter a hospital or more specifically A&E and I get anxious thinking about all the germs I'm sitting around. They were great when I got there and I got a side room so no germs for me, whoop! They did all there lovely tests and everything was what they considered borderline not bad but not great either. I had a lovely doctor who was really wonderful she did absolutely everything she possibly could for me she gave me fluids to try and get my BP up, didn't really work but i'm kind of renowned for having a low BP anyway. 

Now my only issue I have with A&E is this 4 hour limit they have. I reached my 4 hour limit so they wanted to send me up to a ward where they were just going to start all over again and they just wanted to send me up to a ward to be "observed" by this point I was feeling much better than I had in the morning and I had redone my lung function several times and it was starting to creep up a little bit so I was feeling reassured within myself. Papworth had even said it was okay but I think hospitals especially with transplant patients don't want to be responsible if something had happened if I had left and they had said it was okay for me to leave. So I had the head nurse come and see me and say they wanted to take me upstairs just to observe me whereby I proceeded to tell them that I would just be taking up a bed unnecessarily and I'd rather not have to start the whole process all over again. She asked why I was so against going upstairs and I told her about my last experience where I had to wait 9 hours up there for  a pre arranged injection and that was something they knew about let alone going upstairs just to be observed for a unknown something. I also said if Papworth are okay with me leaving then so am I. I certainly would rather feel ill at home than in a hospital where I'm going to get no sleep and have my Ob's done every hour. 

So it's definitely a love hate relationship with them because I feel like A&E do an absolutely superb job but because they have this 4 hour time constraint that they are limited too they have to ship you off a little too soon and then that means people are in hospital longer than they really need to be because they're having to go up to a ward where things are just started all over which is just absurd to me. I know that's by no means their fault and I do feel guilty because I have unfortunately been in A&E longer than the 4 hours I'm supposed to be in there and that has resulted in them being fined. I remember being told by one of the nurses there was a massive meeting on me and why I had been in there longer than I should have been. LOL. 

So I'm ill, I have a infection but hopefully the antibiotics are kicking it into shape and I'll be right as rain soon as my doctor was lovely and gave me the higher dose so feeling sick for a week will be worth it if it means I'm better quicker :-D 

As always, thank-you for reading and chat soon
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11.4.16

The novice...

Over the past month I have been attempting to buy swimwear of any variety really. I'm going on holiday at the beginning of June and therefore this is probably an essential thing I will need. The problem I've been having is I'm a complete and utter swimwear novice. Up until this point in my life I've never really needed swimwear that much I remember something emblazoned with Mickey mouse on when I was about 2/3, I remember having a sparkly multicoloured crop top bikini set when I was about 7-10 and then the last bikini I owned was turquoise polka dot and that's as much as I remember when it comes to my swimwear. I've never really needed it. I can't swim and I've never been on holiday so it's not something I've ever really had to have or had any sort of need to want to buy if I'm honest. 

However now that I'm off on holiday it is something I now need and also want especially as it's going to be hot. Now as the title suggests I'm a complete novice when it comes to this stuff so I have been looking at everything. I've been finding it's utterly impossible to buy a bikini set together or at least it is for a normal person who isn't the same size all over. Why do they even sell bikinis as a set who's a size 10 all over? I know I certainly am not. Unfortunately I'm two sizes bigger on the bottom half of my body compared to my nice size 10 top half. This then also makes buying full on bathing suits quite hard as well because if I buy one to fit my top half I will basically have love handles where there really shouldn't be love handles on a body, but then if I were to buy a suit to fit my bottom half it would be showing all kinds of boob and I'm sure the lovely people of Portugal don't need to see my boobs in that unsightly way. Ultimately I have ruled out full bathing suits. 

This has therefore left me to bikini only and trust me when I say I am not the most confidant person when it comes to my body. Firstly there's the horrible ugly scars and secondly there's the gross body fat but I have found 3 bikinis that I really, really love and have brought. I was looking for maybe a tankini type of thing but I just couldn't find one that I really liked as that would have been nice to cover my less than ideal stomach (toning is definitely needed lol.) The three I've brought though are really lovely and I feel comfortable in them as well which I think is definitely the main thing and I won't be worrying about boob malfunctions in front of a bunch of strangers on a beach or at the poolside. 



Now clearly I am never going to look the women in these ^^^ pictures but I thought I'd show the bikinis I have brought, all you have to do is just imagine a larger probably more lumpy body in them that certainly won't be photoshopped lol. 

So the first one is my Top Shop [link] one which is actually my favourite even though it's the more daring one and shows off my scar the most but honestly it's so comfortable and I feel really safe in it as well even with all that cleavage going on. I did buy the matching bikini bottoms to go with it but I'm not a massive fan as they have single string sides and they'll always cut in and I'm just not fond of them at all so I went and brought some black bottoms to go with it from ASOS [link] and they go really well when they are together.   

My second one is from very.co.uk [link] and is probably one for when I'm not in the mood for having my scar on show. It's's all tie dye which I love and it kind of reminds me of the good old days and I actually loved the matching bottoms as well as they had the strappy side which made them look a bit different (to me anyway lol) and I kind of love that they aren't completely matching. Definitely a good one in my opinion anyway if you want to know for sure that your boobs won't fall out, unless of course someone decides to undo the straps at the back :-/ . 

Finally I have the one that I would consider the girliest and is also from very.co.uk [link]. This would be the most "bra like" so i guess is my safest option boob wise if that makes sense but certainly not my favourite out of all three of them as it definitely shows off all of my scars whereas the crop top hides my scars and because of how vibrant it is also kind of distracts from my drain scars as well. I do still love it though and that certainly won't be stopping me from wearing it, also the bottoms on these are actually my favourite as they are the ones that don't cut in at all and there's no excess flab going on so that certainly is worth it for me. 

I did find as I was looking around at the many, many places I looked at that they do seem to make some really beautiful bikinis for those who are very well endowed in the boob area. I found I was loving a lot more of those bikinis than I was the ones made for people like myself. I have what I consider very average boobs of a very average size, not massive but not small either so I couldn't get any of the pretty big boobed bras but it was fun looking at them. 

If any of you have any suggestions for nice places to get nice swimwear, let me know as the next task is cover ups, so we'll see how that one goes :) 

As always, thank-you for reading and chat soon
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