Friday, 4 July 2014

Lots of Thoughts

I had a Papworth appointment last week that went so smoothly and so quickly that I completely forgot to make a post about it. The traffic was pretty bad that day so we were in the car for about eight hours all in all and to be honest I think it was a bit much for me. I was really exhausted and we decided next time we'll probably have to stay overnight. I'm currently getting Employment and Support Allowance, which is really helpful for stuff like that because petrol and hotels and meals add up to quite a lot.

The appointment only took about an hour. I had a blood test to check that there's no changes in my blood that could affect the transplant and only waited half an hour to see the doctor. He was really happy with how I'm doing, so much so that I don't have to go up to see them again for three months instead of the six-weekly appointments we were having before. They said I should go and enjoy my summer and they can always see me early if there are any changes. They're still a bit concerned about my weight but I told them that I'd started to put some pounds on and am eating much better so I think they were satisfied. My doctor was really positive about my line. It seems he really wanted me to have it and thinks I'll really benefit from it. So fingers crossed! 

I've been feeling a lot calmer about the transplant recently. I feel like I can think about it more without feeling scared. I have these moments of blind panic where it's like I suddenly realise how huge this all is. It's like my life is a book that you'd read thinking, there's no way this would all happen to one person. I mean, I have heart failure and my lungs are under pressures of over 100, that's big! I'm on the transplant list. And eventually I'm going to be that person who had a heart and lung transplant. That scares me a bit. It just doesn't seem real. It's too scary to think about. I probably think more about things I can do after my transplant than I worry about the thing itself. I think that's probably good for me. Watching Glastonbury made me think about how that might be something fun to do after my transplant. Looking back at my freshers photos at uni made me excited to be able to go out and have fun again. If I can get uni to let me do freshers again, even though I'll be restarting as a second year, that would be brilliant. I won't be able to drink but I catch energy from other people so if everyone else is bouncing around that'll get me pumped up for a good party! I'm getting excited now just thinking about it. I stop myself sometimes because I don't want to get too excited incase it doesn't work out as well as I'm hoping. I think it's important to be positive but I don't want to be delusional because if things don't go right it'll make it that much harder to deal with. I think I'm doing okay mentally but I do have an appointment with some kind of mental health person at palliative care soon, which might turn out to be helpful. To be honest as long as I'm not feeling any anxiety and I'm sleeping well I'm happy but it'll probably be useful to have someone on hand if I do start freaking out. 

I've got plenty to enjoy at the moment though. I'm doing really well. I feel really tired but I feel good in myself at the same time, if that makes sense. I'm more keen to go out and do things but I don't have any more energy to do said things. I still like to do them because I sleep better if I'm more worn out. Otherwise I end up waking up at 3.00am and not getting back to sleep for hours. As long as I have one thing a week that I can look forward to, I'm happy. Even if it's just a nice pub meal out, a shopping trip or a visit to my Grans, or even something little like a parcel delivery and a trip to Sainsbury's. This weekend we're going to have a Fourth of July BBQ with my grandparents so that's what I'm looking forward to that now. My boyfriend was here this week, which was really nice. We went to the cinema to watch 22 Jump Street, which was really funny and had a nice meal at Zizzi's as well as some good chill out time. He'll be down again soon too so that's another thing to look forward to. I've actually done a lot more this week than usual. I did pay for it with a really tired out day but it's refreshing to be tired out for a good reason rather than after weeks of constant rest! 

I hope you all have a lovely weekend and I'll be back for a hopefully less deep chat soon! 

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