10.02.2018
I am now officially listed on the heart transplant list! I am listed on the 'routine' or 'active' list, which means that hearts first go to people on the urgent and critical list but if no one is suitable the heart will come down the list to me! Although I will have a long wait on this list, I am so grateful that I am able to wait at home and I am not in the hospital. If my health declined and I needed a heart more urgently I would be bumped up to the urgent list but once on that list I would have to remain an inpatient at Wythenshawe hospital, as much as I like the team there, I don't fancy living there! Once on the urgent list the wait is a lot shorter, but 5 weeks in the hospital would still feel like forever! Where as 6 months or even a year at home means I can at least live my life still.
I do struggle, I barely go out anymore, I probably spend 5 days out of the week where I don't leave the house at all. When I do go out I enjoy going for dinner, seeing family, things where I can just chill out but it's still exhausting and if I went out one day I would be very tired the next couple of days. But I do what I can, I would happily sit in the house and never get dressed but I force myself to do things still. In a couple of weekends my dad is running the Brighton half marathon as a rehearsal for the London Marathon in April! And I'm worried about the walking on the day, it would be much easier to stay at home but I will still enjoy it and I can't just sit around for months waiting to get my life back. I think this is why people don't realise how ill I am because when you see me I'll be dressed, makeup done, but you don't know that that's the first day I've been out that week and the rest of the week I'll be sat on the sofa in my PJs!
There are ways to help me, I have nearly everything delivered to my house now. Ciaran does the food shopping on his way home from work and every now and then we do a big shop. I needed hay and food for the rabbits recently and that's a shop that I've always dreaded because the stuff is heavy and I've always struggled, so this time I had it all delivered. I ordered double the amount I'd normally get so I don't have to go for a while and it was worth the money to have it delivered to the house! I still enjoy going to Superdrug to get toiletries because I can browse through what they have but I will probably start having that delivered soon because it is really painful going round the shops sometimes.
So I don't feel any differently about being on the list, I'm incredibly relieved that it is sorted and I don't have to do anything else but I'm just plodding along still, and I've not really thought about it much. I am trying to get two more uni essays done and then I'm finished! Until the summer at least, I have two essays that I had deferred until August so I'll probably make a start on them once I'm finished. I've asked to have my exams deferred to August so we'll see what happens, I was going to take a leave of absence in May but I've had two 2:1s so far this year so I have a bit of motivation to keep plodding on and I'd be over the moon to graduate this year instead of having to go back to uni to finish the year after my op!
I am now officially listed on the heart transplant list! I am listed on the 'routine' or 'active' list, which means that hearts first go to people on the urgent and critical list but if no one is suitable the heart will come down the list to me! Although I will have a long wait on this list, I am so grateful that I am able to wait at home and I am not in the hospital. If my health declined and I needed a heart more urgently I would be bumped up to the urgent list but once on that list I would have to remain an inpatient at Wythenshawe hospital, as much as I like the team there, I don't fancy living there! Once on the urgent list the wait is a lot shorter, but 5 weeks in the hospital would still feel like forever! Where as 6 months or even a year at home means I can at least live my life still.
I do struggle, I barely go out anymore, I probably spend 5 days out of the week where I don't leave the house at all. When I do go out I enjoy going for dinner, seeing family, things where I can just chill out but it's still exhausting and if I went out one day I would be very tired the next couple of days. But I do what I can, I would happily sit in the house and never get dressed but I force myself to do things still. In a couple of weekends my dad is running the Brighton half marathon as a rehearsal for the London Marathon in April! And I'm worried about the walking on the day, it would be much easier to stay at home but I will still enjoy it and I can't just sit around for months waiting to get my life back. I think this is why people don't realise how ill I am because when you see me I'll be dressed, makeup done, but you don't know that that's the first day I've been out that week and the rest of the week I'll be sat on the sofa in my PJs!
There are ways to help me, I have nearly everything delivered to my house now. Ciaran does the food shopping on his way home from work and every now and then we do a big shop. I needed hay and food for the rabbits recently and that's a shop that I've always dreaded because the stuff is heavy and I've always struggled, so this time I had it all delivered. I ordered double the amount I'd normally get so I don't have to go for a while and it was worth the money to have it delivered to the house! I still enjoy going to Superdrug to get toiletries because I can browse through what they have but I will probably start having that delivered soon because it is really painful going round the shops sometimes.
So I don't feel any differently about being on the list, I'm incredibly relieved that it is sorted and I don't have to do anything else but I'm just plodding along still, and I've not really thought about it much. I am trying to get two more uni essays done and then I'm finished! Until the summer at least, I have two essays that I had deferred until August so I'll probably make a start on them once I'm finished. I've asked to have my exams deferred to August so we'll see what happens, I was going to take a leave of absence in May but I've had two 2:1s so far this year so I have a bit of motivation to keep plodding on and I'd be over the moon to graduate this year instead of having to go back to uni to finish the year after my op!
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