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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