Saturday, 24 December 2011

IV's for Christmas! And Cute Puppy Photos

I had to go to Papworth on Wednesday, I had been feeling very unwell and had hoped to not have to start IV's until after Xmas. It started about 2-3 weeks ago, I had a bit of a cold, then it progressed to a bad cold and finally the cold went to my chest causing a bad chest infection. So I have been struggling for quite a few days now and to be honest my clinic appointment couldn't come any quicker. I've never been on IV's for Christmas but unless I wanted to spend Christmas curled up on the sofa, feeling sorry for myself, I had to have them this year.
I started Wednesday and the side effects have hit me pretty hard as usual, I've been suffering with sickness, headaches, ear pain, temperature, tiredness and itchyness :/ not fun.
I also don't feel any better yet, the IV's have made my chest tight and wheezy, so I'm actually feeling worse than before I started lol. I have tomorrow (Xmas eve) to pick up, or I'm going to be ill on Christmas day, boohooooooo!!

Anyway, enough of that. I want to wish all my blog readers a fantastic Christmas and a happy new year! I hope your day is filled with happiness, love and laughter :) not forgetting mountains of food ;)

Oh I also have the date of my transplant assessment, the 2-3 day one. It is the 2nd of April, quite a long time to wait but I am top of their list for cancellations, so hopefully it might not be that long, but if it is at least I have plenty of time to get in tip-top weight condition.

I just want to leave you with a few photos to hopefully put a smile on everyone's face :) it certainly does with me. My little Christmas babies (ignore me in my pjs...)

Merry Christmas! xxx

Wednesday, 14 December 2011

Transplant Assessment

Today I had the final part of my transplant assessment which was meeting with the Doctor. I was very nervous and felt sick all day because there were 3 possible outcomes, the first was a flat out no to transplant for one reason or another, the second was to wait a while, which could be because say my weight was still not good enough, or my blood sugars, the final outcome was I'd go back in the new year for a 2/3 day assessment, which is even more tests and an overnight stay, more important chats and information.

Thankfully, I got the third option. So I'll be going back to Harefield in the next few months, or it could be earlier if they have any cancellations.

The chat was a mixture of emotions, I was told I am ill enough to need a transplant and as there isn't any other treatments they can offer me, transplant is my only option. I was expecting them to tell me I was too well especially because I'm not yet on 24 hour oxygen, but the fact I have a very poor quality of life, I do use oxygen and my wheelchair and also the fact I have spent about 18 weeks of this year on IV's made them think I am bad enough to be listed. They actually seemed like it was quite urgent, when I left the doctor said 'We will get you in for your next assessment sooner rather than later and hopefully if you are well enough, get you on that list as soon as possible!'

The bad bit of news was that I am blood group O which is the most common so the waiting time is longer, but also for some weird reason there are less O blood group organ donors that are short, a very strange statistic but an important one. He said this could mean I'll have a longer waiting time for new lungs because finding a suitable match could be more difficult, but it might not and I could get lungs quickly, I guess I will just have to wait and see :)

The other bit of not so good news, is that I do have liver disease but I don't believe it is too bad as I only have yearly ultrasound scans so if my CF team aren't too concerned about it, hopefully Harefield won't either. But if they think my liver is bad, I might not be able to have a transplant.

They didn't seem too concerned about my weight, he said obviously it would be ideal if I was a little bigger and it's the perfect time to gain weight (lots of Xmas food!) and also my average blood sugar was the best it's been in a very long time, so they were quite happy with that.

So to sum it up, I hope my liver isn't too bad. I'm a little worried about my blood group but I'm happy that they aren't saying I'm too well and I should get on the list :)

Thanks for reading.

Sunday, 4 December 2011

Puppies and & 'Outstanding Bravery' Award

Its been a week since we got two new puppies, we were going to get a new puppy before we sadly lost our baby Foxxy, so we decided to go ahead and not let the puppies seller down. They sent us a photo of the girls and we found it very difficult to decide which to have, I liked one and Josh liked the other and had we still had Fox we would've had two dogs anyway, so we decided to get both of the girls.
They are Pomeranians, Foxxy was a Pomeranian x chihuahua, so they would be similar to her traits but look a bit different.
Their names are Tinkerbell (the white stripe one) and Milly-Mia.

On Friday I attended an award ceremony, the Stars of Suffolk awards. I was nominated for outstanding bravery, I was up against two amazing, inspirational people and didn't think I stood a chance of winning. I wasn't feeling well at all but I got myself dolled up and managed to go, Josh, Mum, Dad, my Stepdad, Nanny and Grandad all came too.
The evening was very glamorous and emotional, so many amazing stories of equally amazing people.
To my complete shock, I won the award. I got a standing ovation, a beautiful award and a certificate. Each winner also got a special prize and mine was an iPad2!!! It will be amazing when I go into hospital and will definitely help with boredom.
I'm so thankful and grateful to the people who nominated me, my family didn't realise you could nominate people so all my nominations were from people who don't even know me, that makes me feel so good. I am also thankful to the judging panel who chose me to win.
It was an amazing night and I'm so glad I was able to be part of it, I was truly honoured to be in the same room as so many inspirational people :)

Health wise, I'm not great. Struggling a lot with my breathing and coughing more than normal, I still have the awful headaches and keep having temperatures which isn't fun! Hopefully I pick up a bit and can be well enough to have a great Christmas!

Thanks for reading.