Transplant Clinic

I had my transplant clinic Friday morning, was a little nervous as my weight is down ALOT and thought they might take me off the list until it improves. So my Dad came with me, my appointment was at 11:30 we got there in time, but as i had to walk up hill to the waiting room, i got very very breathless! had to use my oxygen and have a sit down on a bench outside (in the pouring rain!!!) once i was okay i walked to the clinic, and checked in, met my online friends, Kath & Rob, who i started talking too as we were both on ITV news being interviewed. Kath is waiting for her transplant too, but has been waiting much much longer than me (over 500 days). Such a lovely couple, and i hope her call comes soon!!

Me and my dad saw a new consultant, so was nice to meet her she was lovely, but i cant remember her name! lol She seemed happy with me and said that i seem to be handling things well, ie my ivs and not having alot of time off them. This is the first time my dad had been to the transplant clinic so she went through everything with him and answered all of his questions, which i had forgotten some things so i was a little shocked again. The main thing that i didnt like was she told us that the lungs they would be coming from because of my size would be a child. I didnt like the sound of that. I felt so bad. That a child has to die for me to live. I know i shouldnt think of it that way, but i cant help it. She looked at my X-ray and i have some scaring on my top right lung, which she said could be hard to get out. That also scared me a little, but i have faith in all the surgeons there!

Later that day i had my step- sisters wedding to go to, which i was a bit nervous for as i had to drive there in the pouring rain. It was in Braintee, and id never driven there before either. So i would of had to follow a sat nav, which again iv never done before. So as i was really an nervous wreck my dad offered to take me! And also drive home from the hospital for me too, so i rang up my insurance company and got him insured on my Audi, was easy peasy!

I had such a lovely night at the wedding, cried a lot too, and my stepbrother proposed to his girlfriend too! Was an emotional day lol here are some pics

                                                                   Me and my step sister jas

                                                              me & my brother and sister

                                                                        me and rheannon

                                                             ethan in our premier inn room

                                                    i was vey excited to stay in a premier inn! haha

                                                           jasmin and my step dad

                                                          my step dad, jas & my mumma

me and ethan

my wedding outfit! 

Had such a lovely day! 

Iv been feeling a little rough since coming home, coughing alot more and feeling very breathless too! So i have clinic tomorrow and il start ivs, hopefully i wont stay in as its my birthday Thursday! YAY!! 

Will let you know how clinic goes! 

5,335 hours on the transplant list !

Last time i wrote about my friend Clare, saying she was very poorly and needed her call for transplant soon as possible. Im sad to say that she passed away last Monday. She was a very strong brave lady, her call didnt come in time and this makes me so upset. We talked about what we do when we both have our new lungs.. we was going to go shopping for hours with out coughing and eat loads and loads of sushi. Her funeral is on the 3rd of May but i wont be going as other people with CF will be going and i don't want to infect others with my stupid bugs, so iv decided im going to plant a flower in my garden for her. Im going to get some 'forget me nots' lovely and blue for her.

Me and my family went away this weekend to my Nan & Gramps caravan in Great Yarmouth, was so nice to get away and just forget things for a while.

Today i had clinic and im now off IVs, Yay! Im having a week break then going back on them next Monday...Nice to have a break as im very busy this week too! I cant remember if i wrote in my last blog that i spoke to someone about how im feeling, and we have both said that i have been very low recently, im now on some tablets to help and i think they have made such a difference. I do feel MUCH better in myself now. Making lots of plans for weeks ahead, which i wouldn't normally do. This Friday i have my step sisters wedding so im looking forward to that, then me and my brother have an exciting day planned for Saturday! Cant wait! Then next week is my birthday and my godchild is being born!! Sooooo excited!!!

I have my Transplant Clinic this Friday, as iv now been on the list 7 months, so il post how that goes after, thank you for reading again!

5,192 Hours on the Transplant list

Well iv been in hospital a week and a day now, its gone so slow too!

The nurses have been quite worried about me, they keep asking if iv given up cos of my mood. But i most defiantly haven't ! Iv just had a few rough weeks but im starting to feel alot better... They sent me to see a some one to talk to about my feeling ect (cant remember what there called lol) Speaking to her has helped and she has advised me to go on some tablets to help me. I dont want to be on the full time but maybe just to get me out of this rut. So iv been on them about 5 days now.


Earlier this week i had a reaction to a new anti sickness med. I was feeling so sick from all the IVs iv been having, and due to this i wasnt eating or doing my feed. so my normal anti sickness wasn't working so they gave me a new one and it effected me so quickly before the nurse had even finish pushing it all in me i went all light headed and couldn't talk, my mouth felt like it was so stiff and i just couldn't open my jaw, then my arms went heavy and dead and i couldn't move them... Luckily the dr was doing his ward rounds at this time and came in when all this happened so they stopped it straight away and changed all my IVs. So now i feel loads better, not feeling sick and now i can eat again!! I celebrated with a domino's last night! Hehe

One of my very good friends Clare is in Papworth at the moment and Shes not very well at all. Shes now been in here 12 weeks, she had the Flu and its knocked her back quite abit, could you all keep her in your thoughts and pray that her new lungs come up asap!! Shes only 3 doors down from me and i cant even go see her.. makes me sad i want to give her a big hug!




4,995 Hours on the transplant list

Iv been feeling a little bit low recently, with the brake up to me being back in hospital and having this horrible cold, i just feel fed up.

Iv never felt pain like this before, the heart brake of someone not feeling the same as you and wanting different things after all this time together is so hard to handle. I feel angry as well cos he left when i needed him most. I needed him to be here for me and tell me everything is going to be okay. I thought we were in this together. He has truly hurt me.

On top of that i have this horrible cold, iv lost my voice completely! Some see it as a blessing though lol. I cant stop coughing either, im having a hugh coughing fit every 5-10 mins, hurts my back and giving me really bad head aches! Iv also been waking up with head aches and think my oxygen overnight needs to be turned up to 3 litres..Iv got to have blood gases in the morning to check before they do change anything.

No calls from transplant yet either! :(

4,834 hours on the transplant list

Hope you all had a lovely Easter Weekend!

I was dreading the Easter weekend to be honest, as it was my first long weekend while not being with Ben. But i ended up having one of the best weekends id had in a long time!

On the Thursday just before the weekend i got paid early, and thought id go to town by myself to have a look around, but town is just useless! I wanted to get a nice outfit to wear as i was going out with friends..but no such luck. So i thought the only way im going to be able to get a new outfit is if i order online and get next day delivery...but i knew it wouldn't get here cos it was a bank holiday. So i sat in my car dreaming of being in Topshop and getting more depressed that i couldn't just go. But then i thought no, im not just going to sit here and let it win, i checked i had my oxygen in the car with me, i did, then i drove to Cambridge, i had my music on loud and was singing along feeling good!

When i got to Cambridge i parked in the disabled bay so it was only a short walk to Topshop & i had my oxygen in my bag ( i didnt have it on, just brought it with me in case i needed it). I was only there an hour but it felt so good to be doing it on my own! Walking around, felt a little breathless but not so much that i needed to put my oxygen on. I brought lots of pretty clothes, shoes and a bag! I got home had a bit of a cough but i still felt good! the only thing that was wrong was my back from carrying my oxygen. its so heavy!

On the Friday i went to my mums as her friends were coming down, there the nicest couple you can meet. We all went out for lunch then back to my mum and step dads for the rest of the night... On the Saturday i went shopping again with mum, my sister Rheannon and my mums friend. I went in my wheelchair this time as i knew it was going to be a long day, and we still had a good time! Me and Rheannon went off on our own and had a nice lunch and brought more pretty clothes! :) Then i was out that night with Stacey! We had a good laugh and a good catch up :)

The next day i went round my dads as he had family round for dinner, was lovely! Then i went out again that Sunday night with my cousin Emma and a few of her friends....While i was out i walked to the bar 3 times and walked up the dreaded stairs to the toilet twice! Very proud of myself for this weekend, as i am i on IVs too and still managed to have a good time :) But now i feel a little poorly, i have a cold :( I have Clinic tomorrow so il see what they say although i think they might want me to come in to go on my 24/7 drip for a while...but we shall see!!

Thank you for reading again :)

4,733 Hours on the transplant list