Just a quick hello because I haven't posted in a while!
I hope everyone had a wonderful Christmas, I was out with my Dad's girlfriend on 23rd and at my Dad's house for dinner Christmas eve which was wonderful. I was very tired after my night out on 23rd but that's to be expected! I did surprisingly well while I was out, I was able to dance a bit and walk to the car. It does cause me chest pain but it's not so much that I can't dance, I power through! (Beyoncé spurs me on) I got my second parking ticket coming out of the bar, for parking on double yellows (which in UK you are allowed to do with a disabled badge) but apparently I was parked in a no loading zone so there's another appeal form I need to fill in! Thankfully it's a different council to my last one so hopefully they let me off!
I had a really swollen stomach on Christmas day before I'd even eaten anything, probably because I hadn't had chance to rest after my night out, although I was just in my dad's house I was busy socialising so I didn't want to nap! But I managed to eat my Christmas dinner which I was really happy with! My appetite is really strange, some days I can't eat at all and others I'm fine so thankfully it was a good day! Then we went to Ciaran's mum's in the evening and I was exhausted by that point but I couldn't sleep so I just lay down and shut my eyes for a bit.
I was going to ring the hospital after Christmas because my chest has been really tight and I've been struggling to catch my breath when I'm just sat watching TV but I now have a cold so I think that's why I've been feeling worse. Whenever I get ill it goes to my chest first before I get the sniffles!
I've got two essays due in 9th Jan for uni so I'm trying to get them done but Ciaran's been off work so I've been enjoying the time just watching TV together! They'll no doubt get done in a mad hurry near the deadline! University aren't very helpful to be honest, they say that they care and want to help but I don't really get much support. It's all on paper, so I had to go to a meeting and be assessed and they put a learning plan in place but I've not actually received any more support as a result. There are seminars for the assessments and I didn't go to them because I hadn't even started my essays at the time due to my extensions, so I've since emailed lecturers asking if I can have any further help and they always just reply with 'all the information is online'. I don't really know what they could do to help me but I feel very isolated from university because I don't go in, I feel like I could be missing things and wouldn't even know! But once I hand in 4 essays in January I have completed 50% of 4 of my modules, so I'll only have my dissertation left and exams which makes me feel a bit better!
Any hoo, I updated on Facebook but not on my blog that I had a phone conversation with Ruth (one of the transplant coordinators) on Friday 22nd after the MDT meeting and she said that they definitely want to list me. Woohoo! It might be strange that I'm excited about that but it means that all my tests on my kidneys, liver, lungs etc were all fine and I'm healthy enough to have the transplant surgery. So she said I have to just see my dentist and once I get the all clear from him then I can go on the list! She also said she'd spoken to the dietician and found out for me that the IV nutrients while I'm in ICU aren't vegan and also some of my medication after transplant is animal lipids, others are synthetic but some are definitely not vegan. So that sucks, but I thought it was really sweet that she found out for me as one of my questions was going to be what do they feed you while you're in ICU. However, the IV food doesn't have lactose in at least which is what I was worried about because I don't want it to make me ill!
So I went to the dentist this morning (28/12/17) and I have to go back tomorrow, I had a tooth root filled a couple of years ago and he just wants to check up on the filling and he wants to fill another tooth and I'm also going to have my teeth cleaned. He took further X-rays and I'm hoping to get a letter tomorrow from them to confirm that my teeth are all okay, then I'll be able to contact the transplant team :) People say that it's horrible waiting on the list but I think this part is worse! At this point I am just waiting for formalities, at least once I'm on the waiting list I might get the call! Also once I'm listed I'll be able to call my social worker at the hospital and get a letter for my PIP (which I still don't get) so hopefully I can get some more financial support! Because currently if I were to have to leave uni I would lose my main source of income, so it'd be nice to feel a bit more secure.
Over the last few weeks I've been discussing plans for when I'm in the hospital with my loved ones, organising who will look after the buns, how Ciaran will come and see me etc. When I wake up in ICU there are certain things that I want Ciaran to tell me (because I don't like not knowing what's going on and I won't be able to speak) so I want to know what day it is, how long I've been unconscious, what meds I'm on etc. It also suggests in the transplant guide that I write a will, but I literally have nothing to leave anyone so I guess all I need to decide is who do I hate the most to leave my student debt to!
I hope you all had a wonderful Christmas and I can't wait to update you to say that I'm officially on the waiting list!
I hope everyone had a wonderful Christmas, I was out with my Dad's girlfriend on 23rd and at my Dad's house for dinner Christmas eve which was wonderful. I was very tired after my night out on 23rd but that's to be expected! I did surprisingly well while I was out, I was able to dance a bit and walk to the car. It does cause me chest pain but it's not so much that I can't dance, I power through! (Beyoncé spurs me on) I got my second parking ticket coming out of the bar, for parking on double yellows (which in UK you are allowed to do with a disabled badge) but apparently I was parked in a no loading zone so there's another appeal form I need to fill in! Thankfully it's a different council to my last one so hopefully they let me off!
I had a really swollen stomach on Christmas day before I'd even eaten anything, probably because I hadn't had chance to rest after my night out, although I was just in my dad's house I was busy socialising so I didn't want to nap! But I managed to eat my Christmas dinner which I was really happy with! My appetite is really strange, some days I can't eat at all and others I'm fine so thankfully it was a good day! Then we went to Ciaran's mum's in the evening and I was exhausted by that point but I couldn't sleep so I just lay down and shut my eyes for a bit.
I was going to ring the hospital after Christmas because my chest has been really tight and I've been struggling to catch my breath when I'm just sat watching TV but I now have a cold so I think that's why I've been feeling worse. Whenever I get ill it goes to my chest first before I get the sniffles!
I've got two essays due in 9th Jan for uni so I'm trying to get them done but Ciaran's been off work so I've been enjoying the time just watching TV together! They'll no doubt get done in a mad hurry near the deadline! University aren't very helpful to be honest, they say that they care and want to help but I don't really get much support. It's all on paper, so I had to go to a meeting and be assessed and they put a learning plan in place but I've not actually received any more support as a result. There are seminars for the assessments and I didn't go to them because I hadn't even started my essays at the time due to my extensions, so I've since emailed lecturers asking if I can have any further help and they always just reply with 'all the information is online'. I don't really know what they could do to help me but I feel very isolated from university because I don't go in, I feel like I could be missing things and wouldn't even know! But once I hand in 4 essays in January I have completed 50% of 4 of my modules, so I'll only have my dissertation left and exams which makes me feel a bit better!
Any hoo, I updated on Facebook but not on my blog that I had a phone conversation with Ruth (one of the transplant coordinators) on Friday 22nd after the MDT meeting and she said that they definitely want to list me. Woohoo! It might be strange that I'm excited about that but it means that all my tests on my kidneys, liver, lungs etc were all fine and I'm healthy enough to have the transplant surgery. So she said I have to just see my dentist and once I get the all clear from him then I can go on the list! She also said she'd spoken to the dietician and found out for me that the IV nutrients while I'm in ICU aren't vegan and also some of my medication after transplant is animal lipids, others are synthetic but some are definitely not vegan. So that sucks, but I thought it was really sweet that she found out for me as one of my questions was going to be what do they feed you while you're in ICU. However, the IV food doesn't have lactose in at least which is what I was worried about because I don't want it to make me ill!
So I went to the dentist this morning (28/12/17) and I have to go back tomorrow, I had a tooth root filled a couple of years ago and he just wants to check up on the filling and he wants to fill another tooth and I'm also going to have my teeth cleaned. He took further X-rays and I'm hoping to get a letter tomorrow from them to confirm that my teeth are all okay, then I'll be able to contact the transplant team :) People say that it's horrible waiting on the list but I think this part is worse! At this point I am just waiting for formalities, at least once I'm on the waiting list I might get the call! Also once I'm listed I'll be able to call my social worker at the hospital and get a letter for my PIP (which I still don't get) so hopefully I can get some more financial support! Because currently if I were to have to leave uni I would lose my main source of income, so it'd be nice to feel a bit more secure.
Over the last few weeks I've been discussing plans for when I'm in the hospital with my loved ones, organising who will look after the buns, how Ciaran will come and see me etc. When I wake up in ICU there are certain things that I want Ciaran to tell me (because I don't like not knowing what's going on and I won't be able to speak) so I want to know what day it is, how long I've been unconscious, what meds I'm on etc. It also suggests in the transplant guide that I write a will, but I literally have nothing to leave anyone so I guess all I need to decide is who do I hate the most to leave my student debt to!
I hope you all had a wonderful Christmas and I can't wait to update you to say that I'm officially on the waiting list!
Hope I don't inherit the student debt Charlotte 😂😂😂
ReplyDeleteFingers crossed the dentist gives you the all clear tomorrow and you have all you need to fight for PIP.
Lots of love ❤️