16.5.16

A Blip...

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I'm going through a bit of a blip. A lung blip. You know the other day I said about my lung function being down? Well it's still down. 

I went to the GP on Thursday and he listened to my chest and he said it actually sounds okay to him there was nothing that he could really hear that would suggest any reason for my lung function to be dropping the way that it is. The only thing that suggested a infection was the fact that I'm coughing up some phlegm so because of that he prescribed me some antibiotics and sent me on my way. I rang Papworth to just keep them in the loop and the nurse that I spoke to sounded more worried than before and decided that because it's my second lot of antibiotics in 4 weeks, my lung function being low and my GP not really hearing anything on my chest that it was best I come in on Wednesday. She thinks I'll need a Bronchoscopy to find out what's going on in there but if I'm lucky I could just get away with  chest x-ray (Somehow I don't think so lol.)

I'm quite relieved if I'm honest because I've been a anxious wreck for the past few days and I'd rather go in now and them figure out what is going on and then I can go to Portugal free from worry. In my mind there are 3 possible outcomes:

1. It's a infection. Just a infection that maybe I'm just not on the right antibiotics for and once they do some samples they'll figure out exactly what it is and bish bash bosh it's sorted. 
2. It's my acid reflux being a total arse. 
3. Rejection. Which I absolutely hope it isn't. 

I think people will probably think I'm overreacting but I don't know many transplant people that don't automatically think if something isn't quite right that it's rejection. As I've said before I've had a extremely smooth year and this is the first time I think I've genuinely been worried. When it was my neutrophils that didn't really worry me too much because I knew that could be fixed and we knew what was wrong. Right now I haven't got a clue what's going on, it's always the fear of not knowing that gets to me.   

So I'm sure I will let you all know what happens and hopefully I'll just be letting you know I've been a massive worry wart for no reason :) 
 
As always, thank-you for reading and chat soon
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11.5.16

Catching up...

Hello my lovely lot. Long time no speak I guess... 

So in classic Stacie fashion this is more of a life update not that there's too much to update you on but there you have it, you know I can ramble lol.

The past few weeks haven't been that eventful as they go, the past week I have been massively enjoying the weather we've been having and was lucky enough to escape to some beautiful coastal places up in Norfolk. I had to get used to putting sun cream on again, I honestly hate the stuff though it's so greasy and just makes you feel gross. I've been told I now have some colour on my face but I'm not burnt so at least I did it right and it was good practise for when I jet off to Portugal next month so at least I know I can deal with sun without getting burnt and coming back looking like a tomato. 

I'm having a bit of a lung function issue at the moment which isn't great. When I had my lung infection my lung function dropped which is okay that happens and isn't unusual but It's been nearly 4 weeks since that the initial lung function drop and my lung function hasn't really come back up. I'm a bit worried about it because drop in lung function and persistent drop screams to me rejection and that's all that is going through my head at the moment. That being said I'm trying to be proactive about it Papworth have moved my clinic forward to May 31st so that gives me a few weeks to try and get it back up a bit. Also I'm still coughing a lot and have phlegm coming up so I'll be booking an appointment with my GP to see if she can hear anything on my chest because it could just be that the infection never completely cleared in which case we just need to hopefully have another whack with the antibiotics. The good thing though is whatever it is Papworth can have a look at me on the 31st and just make sure I'm okay to head off to Portugal on the 3rd. 

I think once I've seen my GP I'll be more calm about the whole situation because I do personally think the infection just never properly cleared. I'm trying to get back into being really good with my exercise as well. I feel Like I definitely have become complacent with it because my weight is at a nice stable place so I don't really have a need to be doing tonnes of exercise to shift some pounds but then it's not great for the little organs. I just need to find the motivation again to keep at the exercise. I think the fact that I'm more easily out of breathe at the moment doesn't really help with that because my whole life being out of breathe is bad, you stop what you're doing and get your breathe back and then you carry on. It's hard for me to get past that kind of mentality that I've had for so long and even though I'm 11 and half month post transplant now it's definitely still there for me.      

It's all good though and I'll get my lung function back up where it needs to be and Papworth don't seem overly concerned enough that they want me there as soon as possible so that puts my mind at ease also.

It's all very exciting though at the moment because in 19 days it will be 1 year since my transplant and that is mind blowing and a massive milestone that I wanted to reach and then in 23 days I'm off to Portugal which is just as exciting because it will be my first ever holiday. My first ever plane ride (Proper plane ride we don't count when I was a baby or when I was 5 on a RAF plane lol). I'm being so annoying about it, I'm constantly asking a billion questions about fluid limits, weight limits, my drugs, what's out there etc. etc. literally I'm just asking about everything. It's the way I get through things I like to know everything so I can be prepared for any and all eventualities. I know it's annoying though but it worked for my transplant so I figure it'll work for all the other aspects of my life too. It will be very interesting to see how I am on a plane though I'm not sure how it'll go especially with how anxious I get but I'm still excited about it, even the plane bit, it's something I've always wanted to do and now I'm finally getting to do it :-D    

As always, thank-you for reading and chat soon
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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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