Saturday 28 May 2011

Documentary, Feeling good and post transplant recovery

Yesterday me and Stu had a day off together, It was a bit of a rest day, We had the BBC documentary being filmed from 2pm till about 8pm. We took Kia for a walk and filmed us chatting and suggested topics for us to chat about. It was nice in a sense as it allowed me to hear some of Stu's thought and feelings that he perhaps wouldn't have said otherwise. I'm really looking forward to this documentary now, there seems to be alot of focus on my story and I really hope it can get people to sign the organ donor register. Its such a good opportunity for me to raise awareness and I think the guys filming it are really on board with the idea and want to help raise awareness to. :-) Yay

Health wise, well Iv come to the conclusion meropenium is good, I always seem to have a slightly better patch on it. I'm able to potter around the house at the moment and do a few things for my self, with the aid of oxygen obviously, I still feel the need to wear it 24/7 in able to do these things. The bi-pap at night is still a big plus and I feel so much more rested with it, so I think that's also helping the good patch. I also know that as soon as I finish the mero Wednesday I can expect a decline again, but hey ho that's the way it goes.

Chantelle is doing very well, she had to have a bronchoscopy and a clear out yesterday but otherwise doing well and told to move about more. The recovery period for transplant now is so intense, but it has to be, to stop infection and complications kicking in and to get the lungs up to full working capacity as soon as possible so that you  don't loose any function. I know when it comes along to my turn I am going to have to push myself so hard, I want alot out of this transplant and therefore I am going to have to work for it, I can't expect to just have a transplant and be well. I want to run marathons, pole dance, be super fit and me and my doc even said about doing a sponsored cycle ride together post TX, If i want all that I will have to work hard in the first few week the most. It scares me, I have so much anxiety over breathlessness that I don't want that to follow me over with me new lungs and hinder any recovery I do.

At the moment I don't understand the concept of not being breathless, Iv always had some degree of breathlessness, so not being breathless Is something I just don't understand. God It will be good.

Wednesday 25 May 2011

Bizy Bizy Bizy

OK so again I have been bizy bizy bizy, I am completely knackered to say the least I have been to Devon county show with Stu, Filming for the documentary I'm going to be in, cinema, longleat and finally today hospital.

Me and Stu have started our list of fun things to do on days off and generally just making the most of life, It has been great. To make it all a bit cheaper I have found out about a sneaky little thing that attractions and cinemas try to hide from you, Carers discount. If you are disabled and have someone with you who would be responsible for pushing you about, administering medication and general other carer like things out and about, it means that person can get a discount at most places and that discount is usually half price or free!!! These places don't advertise because they don't want you to really know about these things, but just ask, 'do you do a carers discount' they will be happy to give it to you then!!

Longleat was amazing and I really enjoyed it, we got home and by 6:30 pm I was in bed and then rapidly asleep, I didn't wake till 8:30am today when i had to get up for hospital. I was so tried it was unbelievable. Literally felt like i was unconscious rather than asleep.

Today me and mum ventured to the hospital, change of IVs same as ever Wednesday. I saw my doc and we discussed pegs again as I'm still stupidly skinny and under weight, 50.8KG you may think that sounds alot but I'm 5ft 8" so it really isn't for me. Some how I agreed to have a peg fitted in 5weeks time if I hadn't put on any weight. I guess I finally got to the point where I'm struggling so much with so much I can't be struggling to force myself to eat as well. I struggle to eat now because the shere breathlessness is just to much ot handle. Also as my weight gets lower I actually feel fatter, not fatter really but my tummy starts to stick out more, partly because I am really bloated at the moment as the bi-pap has a tendency to inflate my stomach leading to awesome burps and farts, but that's ok as my farts smell like roses. Partly because my arms and legs get so skinny my cf stomach becomes more sticky outy. So I have given in to the peg, if i can't get my weight up.

We then ventured off to have a little shop and I brought a few bits :-) but my 02 ran out as its been playing up and now I'm back home knackered again and ready for a sleep. Its nice getting out and doing things, but i have literally not had a days rest and now I'm well over due for one. I'm going out for lunch tomorrow and Im having the film crew over Friday to film with me and Stu but the weekend i am litrally going to rest with a few good DVD's!!

My friend Chantelle got her call the other day, I received a text at around 5am and the lung were a good match so it all went ahead at about lunch time. Everything seems to be going well, which I'm so happy about, fingers crossed it Carry's on a smooth ride for her. Me and Chantelle had our tx assessments all around about the same time and she went on the list a week after me, It was great to chat through and compare experiences and I hope I can soon chat through and compare transplant experiences with her soon, providing my call comes. I feels so happy for her, Chantelle has a little boy and therefore I feel it was so important for her to get her call as quickly as she did, so she can start to run around with her little boy!

On a nother transplanty note, here is the last article of the bombardment of articles the express and echo have done on organ donation, It has been a brilliant campaign, where they have included all points of view for organ donation and transplant. The last article is about me again as i am the face of there campaign Finale article also if you search the site for organ donation all the previous articles come up.

That's all I have to say for now, so I'm going to have some snack and a nap as I am exhausted.

Thursday 19 May 2011

Brilliant last two days

Ok so this is a bit of a sneaky blog, I'm suppose to be upstairs napping, instead i thought id write a quick update. I have been taking the napping every day quite seriously and it has helped the shere exhaustion of feeling like your running a marathon every day. So between 3-5 everyday I stick my bi-pap on and have a lush nap with my kia, shes out at the moment tho with Stuie having a walk.

I got home Monday as planned although feeling worse then when I went in I felt there wasn't much to be achieved from staying in, its been said countless times there isn't anything treatment wise they can do for me, so it just trying to get use to the regular dips and re adjust. easier said then done.

I have had to give up bathing everyday, I'm so breathless now that when ever I get out I have to rest for about 30minutes before Iv caught my breath again. So I'm trying to get conserving energy by sacrificing things like a bath everyday. I still Wash obviously, I'm not a complete minger and like iv said beforedry shampoo is a god send.

Any way on to the title of the post, Yesterday my big brother picked me up and his fiance Caz looked after Kia and me and my bro went out for the day, It was really really nice. We went to sidmouth beach and shared a bag of chips, us to skinnys don't quite crack through the food, so a bag was plenty for us both. We walked and talked and laughed. We also had an ice cream, I had an ice lolly as i am currently addicted to them. Chris decided he was going to run up the massive hill whilst pushing me in Maud, it was very funny, nice to see someone more breathless then me for once, but then the hill was massive. Some old bloke joked that my bro could come back and pick him up after, or that he could sit on my lap, I said he'd squash me so he'd have to walk. Anyway it was really nice and I can't wait to do it again.

Then today Stuie is off!! yay and we had wedding stuff to sort, It is getting rather close tot he day now 16th June!!! wedding preparations are all coming together. Today we had our final meeting with the venue and the final meeting with the register. I only really have flowers to finish,which I'm waiting on a late delivery, it is freaking me out mildly, I'm worried the company has gone bust and taken my money, tho it wasn't a lot, but still left me with little time to sort more flowers out. Then I just need to do a  few small things and were there. It was so nice finally sorting out the last two big things today and then we went and had a nice meal. Which leads me to now, I'm suppose to be napping so will dash and get a bit of sleep in before I'm found out. Shit I think im found out. lol

Sunday 15 May 2011

I just want to go home

I feel no need to stay here anymore, there is nothing more the hospital can do for me. They want me to stay, but I see no point. I'm just another person clogging up the Nhs. They agree with me that there is nothing more treatment wise they can do in the hospital, I'm already receiving everything I can at home, I have all the care I need, all the drugs. So I might as well be in the comfort of my own home until other treatment options open there selves up to me.

My breathlessness is far worse then ever, I feel like my hearts going to explode under the strain. Every time I need the loo, I take my 02 off and rush to the loo and come back ready to collapse. Its just easier that way, I'm to weak to carry the 02 cylinder and to desperate for a wee to mess about. At least in my home i have 02 all around the house.

The bi-pap, It is a god send when your simply so breathless you've forgotten how to breath, Its hard to put on when your in a mess like that but when you do, the rest is so nice. When I take it off I feel like iv suddenly forgotten how to breath, then I realise that's how I always breath and its just really poor now. It allows me to sleep alot better, but I feel Iv deteriorated since being in here and could do with the pressures raising already.

Its strange when you see the concern in your doctors face, I simply try to replace it with my chipper Wit and I can usually see it disappear to the back ground but it never goes. I wonder whether the same concern lingers in my face, but clouded by my positive attitude.

It was mentioned to me the other day 'I know your in a bad place at the moment and your angry' this shocked me you know, yea I have moments of anger and why me but I would never describe myself as being in a bad place, in fact the opposite, I feel positive and at peace with everything. Yes this is shit, but I'm going to get through it and I will be so much stronger for it and that is why it is me, because I can cope with this.

A bit more media work, I was on the front page of my local Tuesday, fronting the organ donation campaign Article 1, then Wednesday Article 2 and finally Saturday Article 3. So as you can see a solid campaign in the southwest. I'm also going to be in a documentary for BBC3 on transplant and organ donation if all goes to plan. There has been some solid campaigning from all my facebook friends over the last week and live life and give life have put some great campaigns out which Sarah brown (Gordon Browns wife) re tweeted.

I'm also wedding central at the moment, planning and double checking as the big day is a month away!!

So Ill leave it there for now, hopefully i will be home when I write my next blog.

Wednesday 11 May 2011

A whole week with out a blog!!

Well firstly I want to start with the lovely Maud!! She is Pimped. My brother Chris did an amazing job, i knew he would but when you she her in the real she is something else.
the photos don't really do her justice

Pink \butterflys dotter all over her!
So as you can see I have a very talented Brother.

I'm currently in hospital, starting my Bi-pap at night and getting some rest and have been since Monday, I'm going to be in till next Monday now as I just need to rest and leave a little less shattered, I'm not expecting miracles while I'm in here.

A topic that has come up while in  here was life expectancy, It wasn't really a deliberate conversation, I never asked because I guess its something I think I maybe already knew, but it has been mentioned that if I carry on the rate of decline I'm likely to live only another 6months. For me I know this is only based on a educated guess, you can never know when someones going to die and especially with CF, I could catch a nasty infection tomorrow and that could be the end of me or I could stabilize and carry on to live a maybe even a couple of years. So for me when they took this educated guess, with there statistics, I think they forgot to factor in my determination. That on its own stands for alot.

Hearing that 6months has done a number of things, made me for determined then ever to stop the lack of organ donors, I need to make sure this doesn't happen to someone else in the future, this uncertainty and the fear that that transplant wont come in time. Its also made me want to enjoy every last minute with my family.

So Ill leave this post, short and sweet, straight to the point, sign the organ donor register and get everyone you know to. 

Wednesday 4 May 2011

What A Difference A Day Makes

That's right, here I was praying for something to change and it has. I had the biggest shock yesterday and It has literally flipped everything around.

So Ill set the scene, me and my friends Neil and Charmaine (who are in a relationship together and both have CF) were chilling out, they'd come over for a general chit chat and catch up and it was nice to see them both, although slightly sickening as there in that loved up kissy kissy stage, lol, only joking its lovely, well sort of. HA. I knew a friend was suppose to be popping over while they were there, she had offered to do my wedding make up and said she needed to bring something over to do with that. Well she arrived, with another lady who I'd never met, but just assumed was a friend and to be honest didn't think much about it. Until we were all sat down and they started to explain that actually they were there under false pretenses and that really Caz the other lady was there from the snooky trust charity and that the charity would like to help me and the way they would like to do that was to pay £2500 towards my rent. Which approximates at 4months and bits rent!!!!! I was completely stunned and cried, I remained shell shocked for the rest of the night and I'm still in totally awe of how kind people can be and my faith in human nature has been restored.

So my financial burden has been eased a great deal and I feel less stressed. :-)

So voom forward to todays weekly clinic. I have been pretty ill today, temps, stupid high heart rate ect. So after much discussion where I basically told them I wasn't coming in, Iv decided to go in for 2 days starting next Wednesday to start bi-pap at night. Click here to find out about bi pap It feels like a big step but at the same time as when I started 02 I felt I needed It and looked at it as a step to help me have a better quality of life and It has and now the bi-pap will be the same. Although It does serve as a reminder to how bad my little lungies are now.

Tuesday 3 May 2011

Smiling because thats what I do

How am I feeling? I don't really know what to say, I wish I could say everything was alot better and that I felt alot happier and less stressed, that I'm not struggling financially, but I am. Every time I think I'm getting somewhere, I feel another set back.

I feel pretty ill, I'm struggling more and more each day and the pain is becoming an issue again. My MST (long lasting morphine) isn't cutting it. I have this paralyzed feeling in my right lung and deep throbbing ache, which is new and unpleasant. My nurse asked me on the phone if I wanted to come back in, I haven't quite hit rock bottom yet, but also see no reason to go back in. All the treatment I have in hospital I am now receiving at home and unless I want to start using my bi-pap at night then there is no other reason to go in.

Financially, I'm very broke and I did think things were sorting there selves out. But now it just seems to be getting worse and worse, I won't bore you with the logistics of it, but its pretty bad and its leaving me feeling pretty stressed.

I wish I could wave a magic wand and everything would be sorted, but I know the world doesn't work like that. I hate the fact that I have no good news and everything seems so doom and gloom, but I guess that's because being on the transplant waiting list and being really ill isn't easy its the hardest thing I think I will ever face but I just hope that I will get these new lungs and a sense of perspective on what is important in life and how important it is to live life to the fullest each and every second. Well I suppose Iv already got that, I just hope I get a chance to put it into practice. I also hope out of all this the face of the organ donor register is changed so no one has to wait in uncertainty, I guess that's kind of sounds big headed as if I alone will do that, but I mean out of all the people in my position out there doing the same thing and trying to get people to sign the organ donor register.

Is there anyone who read my blog and still hasn't signed the register? If so why? I would love to know your reasoning, so perhaps I can give you more information and fill in those missing steps to help you make the decision.

Also I'm looking for a free hobby, something that won't cost me a penny but I can fill my time with, I know theres probably not such a thing, but any ideas? I already do card making, but getting a little bored of that one.

I know these posts sound so down at the moment and yes I am, but I'm still smiling, because that's what I do.