Wedding

In the run up to the wedding I'm finding myself increasingly bizy, there is always little things to do and you soon run out of time, being a not so healthy bride, doing all the little things is really hard. I'm worried It will get to the day and Ill have forgotten something, let alone the worry that I will be really sick. Not only am I attempting to walk down the aisle but I have to come down the stairs of the balcony next to my room and then make it to the aisle. Its a fair distance. If I can't make it Iv decided my dad might just have to literally give me away by carrying me up the aisle first. Lol a sight to see. Iv been told all brides virtually run down the aisle and its far to fast and not in time with the music, at least I won't have that problem. I am going to pace pace pace and before I attempt all this I will be resting on my bi pap for all of the morning.

Also in the run up to the wedding ITV and Documentary team are filming me, ITV west country are keeping updated with my story as they have followed me from the beginning when I went to Harefield for my assessment and hopefully after when I get my transplant. Also the Documentary team are really keen to film all wedding related stuff. Needless to say this is very hectic and I do wonder how I'm coping in doing it all. But It gives me purpose and drive and I feel that's so important at the moment. I just hope it all pays off and people sign the organ donor register.

No wedding related stuff, my peg looks like it will be going ahead, no weight gain at 50.6kg and I just can't keep food down between all coughing. I'm really finding the thought of food most of the time almost repulsive as the feeling of anything in my stomach leaves me bloated and struggling to breath as it pushes my lungs up and squashes them, which also leads to me vomiting. I sometimes get a hunger on and when I do its really nice especially if i manage to not feel sick and bloated. A rare thing. Also in clinic my resting heart rate was 150, i felt very shaky and I get this alot. I hate feeling shaky. Otherwise all conversation was on wedding related things and how to keep me as rested as possible as there worried I'm going to run off adrenaline and burn out in the days after, something I'm pretty sure will happen. Oh and benefits, well that has got no where, more forms and frustration.

Care Plan

Well, today I had my care package put in place, my carer came round this morning at 10am and we chatted about CF and my life and waiting for new lungs and what that means. She met Kia, obviously an important thing for anyone coming into my home. I think she is firmly a Kia fan, most people are.

She ran me a bath, made my bed, dried my hair and made me breakfast and as of Wednesday next week they will be trained to do my physio. It was pretty successful. I felt really comfortable with her and I'm actually feeling really happy about this whole step, yes it means I'm iller, but its making my life easier so I can reserve energy for the good stuff. :-D She came back in the afternoon to make me lunch, which was great it was good to know I didn't have to stress about having to get up and make it myself and not feeling up to it. Most of the time id just go hungry.

She said she'd been online and looked at my news pieces as I had told her about them, she said she was glad she saw them after she met me otherwise she would have felt to upset to come, It makes me feel bad when people get so upset by my story, but its emotion is the only way to get people to understand about CF and how important organ donation is.

I thought about another thing she said, about how most of the people they give care to are old people, it must be weird treating me, 21 and so ill. I also said this was one of my better days, she's glad it was, I think its best to ease her into how i can be, I don't want to scare her, even today was pretty bad and I sensed that she thought so to. It looks like ill have about 3-4 people coming in and out but hopefully they will try to keep it down so I can build a bit of repore with these people, I felt I could really do that with the women today.

For those of you who missed my ITV piece update here's the link LINK. I'm also working away on a few other media things to spread the organ donation message., so watch this space.

Home and housing

As I lay there in my hospital bed, the pain starts to shoot through my left lung, Its building slowly, my breathing is getting harder. In a matter of minutes the pain has gone from a dull ache, to overwhelming agony, not today, please not today, I'm suppose to be going home. I press the buzzer, '8 out of 10 pain, I need pain meds' I can't even move now, moving only makes the pain shoot through my lungs and halt my breathing, It hurts to breath in, it hurts to breath out. My sats are low on 02, my heart rate through the roof and my temp is up. Oramorph, Mst (long lasting pain med) they don't touch it, we work our way on to IV morphine, the pain starts to ease enough for me to breath.

This way yesterday, the day I was set to go home, but once the pain had eased enough for me to move, no-one could really persuade me to stay, I had a xray to check there wasn't collapse or any wholes in my lung and there wasn't. Off home I went. We had the task of setting up my spare room as my treatment room, moving my fridge for my IVs, my chest of draws with all my medical stuff in, another small fridge I had left at my mums (for food) and my oxygen concentrator. Were basically trying to make it as easy for me to be at home as possible, by having as much stuff upstairs, I should be able to spend the best part of the day up stairs and not have to go up and down them which I found out, I really can't do unless I really have to. Which is slowly, taking a step at a time, resting every couple of steps and collapsing on the bed.

I'm getting use to all the tubing for oxygen, I find it overwhelming how much has changed and I am fully dependant on others.

This morning, I found out what the mystery pain was in my chest, that I'm having to keep on top of with the pain meds otherwise I can't move or breath. I woke up to blood, blood in my mouth. I spat it out and I continued to have a bleed, It wasn't a awful bleed, but defently the source of the pain. This and the fact of how dependant I am on people has made me question whether the sidmouth property is the right thing. We went and viewed the one next to it today. Its finished and has people living in it. Its lovely, really big, nice home and I want it I really do. But If anything were to happen to be and my mum couldn't be with me within 5 minutes, like the bleed, then id be on my own, completely. Also I really can't do anything with out anyone and i know I'm going to have a care system in place but there are times when I want to go out socialize I can't just have my mum nip and pick me up and bring me round to her, Its a lot of petrol and time running back and forth. Basically I want to stay where i am, I really like my little house and so I'm going to try try try to get a stair lift fitted. I hope my landlord will agree, as the only other options are go to sidmouth, move back to my mums with Stu and kia, or wait and wait till a possibly suitable property came up.

To be honest, I have been wondering how long Iv got left and topic I'm very honest with my self over, but find really hard to tell others, I don't think Iv got years to wait for these lungs, in fact, Id be surprised If i survived a year with these lungs. Some people may think I'm being pessimistic, I don't, I just know, that if I don't get these lungs soon I will die. There seems to be very few people who understand that and I can't blame them for not, there in denial, they don't want to think of me dying, unfortunately Its the reality I wake up with every day. So being at home and settled is my priority, I want to just be able to relax and not have to worry about this stuff anymore.

P.s catch me on ITV westcountry tonight

Hospital, daybreak and giving up work

Well 6 days off IVs and out of hospital and I am back in Exeter rd&e, my lungs well and truly got the better of me. Struggling to breath, I was unable to stand this morning when my delivery of IVs came and had to sit on the floor while the deliver man sorted through everything. I simply was so breathless I couldn't stand. Iv decided the stairs in my house are now my enemy and I am unsure what to do about it.

By the time I had got back to bed after the delivery I was in a complete state. I was shaking with breathlessness. Unable to even sort my tubing out for my oxygen as I fumbled around panicking. kia curled up next to me and after 20minutes I decided I would ring my mum. she made her way round straight away, there before 9am, telling me enough was enough, it was time to go back to hospital, it was no good that I was so scared to even be on my own and I needed to be in hospital. I eventually agreed after tears streamed down my face as I said kia wouldn't know who her mummy was, she would think my Nan was her mum as she stays there when I’m in here. My mum said that’s not true, I was he mummy and she knew that.
I’m on tobramycin and cipro IV. Were going to try a few new nebs while I’m in, just to see if they make a difference, meropenem neb was mentioned. My doc just wants to keep me at a reasonable level where I feel safe and comfy to be at home.

I really have to say I’m get scared of all this constant infection.

It became quit obvious to me last admission that I was not earning enough money to survive, with barely managing to teach any lessons and the ones I was teaching I feel I am sometimes seriously putting my health at danger as I’m pushing my body so hard, when I physically don't feel well enough. So I have officially closed my accounts and I’m trying to claim esa, if I do teach any lessons it will be with what I’m allowed to earn whilst on esa, but I don't think I will be teaching that much if at all, at the moment, I don’t feel I can.
I’m really sad about this, but I’m trying to think of it as a positive thing, a chance to rest, enjoy time with friends and family. I don't want to just sit around all day, so I may look into studying, or things I can do post transplant. I also really want to concentrate on raising awareness for organ donation.

Also this week I’m meeting with express and echo as I’m now the face of there organ donation campaign inspired by me and doing a follow up interview with ITV west country about going on the active transplant list on the 28th (as long as the surgeons give the a ok Thursday) For those of you who missed daybreak here’s the link daybreak Interview.

I can't wait till Thursday when ill know a 100% that I am going to be on the list Monday.