Monday, 20 June 2011

What a washout....literally

Ive been pretty busy actaully since Harefield so this post may be a longish one!!

The day finally came that i had been looking forward to since xmas. I had brought my daddy tickets for me and him to go to the MotoGP to watch the motorbike racing. He loves motorbikes and i've never been, and after the start to the year that we have both had, (me going through the transplant journey and him having radiotherapy treatment) it was time for us to have fun. To sum it up, it was SHIT. It rained hard the whole day. Its making me upset just thinking about it as i felt soooo disappointed.

It was at Silverstone course which took us 2 hours to get too. We got there and everything was outdoor apart from a few shops and stalls so we went under them for shelter and I brought a t-shirt and drink. The main race started at 1pm so we walked about to find a space to stand to watch it and we actually found quite a good place. The race started and we watched it and i loved it!! The bikes were so loud and exciting!! We left after the race and had the 2 hour drive back and were home at 4pm. We were both soaked, cold and tired. It was supposed to be a lovely day event that finished at 5, that had lots of entertainment, things to see and do, look at all the bikes and different races, and the weather just completely messed it up. It was one of the worst 'weather' days this year (typical) and although its no-ones fault and there is nothing that could have been done, it still doesnt mean I cant be really angry and let down by it.

I cried in the car on the way home and most of that night to be honest. My dad was fine about it and it brings a slight smile when we think of how we both must of looked on the day, but it still hurts and i want to re-do the day all over again. Apparently there is racing in august at Brands Hatch which is much nearer to us, so i think we will try that one.

My portable oxygen is great and much easier than my concentrator as its lighter, less obvious and lasts longer. Other than my lungs being in a permanant state of crapness, im feeling fine. I think the constant oxygen is helping as I have more energy, have more colour in my face and am not always worrying about what my breathing is doing and whether I need to go on the oxygen. I just have to accept its part of my life now. Although I dont think i will make it to transplant if these bloody wires have anything to do with it. The amount of times i have wrapped the oxygen tubing around my legs or got it stuck under a door and walked and practically ripped my damn head off. Im a danger to myself!!

I had my pelvic scan on Friday. That was fun - not! Appointment was for 9am which put me in a mood straight away, as I dont do mornings. There are 2 ways to do the scan but I thought I had to have it the 1st way so I didnt say anything. I had to have an empty bladder but whilst doing the scan, it wasnt able to get clear enough results so therefore, the 2nd way would have to be done. I didnt mind until I found out you had to have a full bladder for this to be done. FOR GOD SAKE!! It then took me until 12 to drink enough water and juice in order for the scan to take place. A mixture of my overnight feed and the fact that I was sick in the night for no apparent reason added to the problems as both these things make you dehydrated, so the amount of water i was drinking wasnt going into my bladder, it was being absorbed by my body. Anyway I finally got home at 1pm and slept. The results will hopefully be through this week and then I can be put on the transplant list!!

Lets finish this post off with some good news. I won my court battle!! I was due in court on saturday at 11am. They rang at 10.15am, just as we were getting ready, to say that the judge had thrown my case out and that we had won. I didnt need to attend and that they would send written proof this week. Of course, i was happy as now i shouldnt have to worry about not getting the benefits and they will leave me alone, however, i was really angry that they have left it until last minute as i was all ready to go. Lance, my nurse, had even got on the train and was waiting for it to leave the station when we rang him and told him, he had to jump off!! So at least this week I can concentrate on other things, rather than look for a job ;) haha!!

x Lots of love x

Saturday, 18 June 2011

Harefield 2 day assesment

My appointment for my 2 day assesment for going on the transplant list was for Monday morning so we went up on the sunday night again and stayed in the onsite housing. As soon as i got to my room on the ward on Monday morning, I was given lots of forms and pots to put different things in haha!! I was wheeled down to lung function, had tests on my heart and had a heart monitor attached to me which I had to keep on for 24 hours. I had shit loads of blood taken from me, had to give a sputum sample, a urine sample and then collect all my wee wee for 24 hours.

It was then lunchtime and I got to actually have a bit of a rest for a while until it was time for physio test. I had to walk for 6 minutes between 2 cones and score how tired I was after every minute. I did really well and felt ok. At 3pm, I fell asleep and then woke up a few hours later and all tests were done for that day, so me and mum just watched tv and talked until I went to bed.

Day 2 started bright and early with a bloodtest at 9am..after 2 attempts at blood they finally got it from my hand. I had to fast from midnight for the bloods and a scan of my liver and kidneys, which i was then wheeled down for at 10am. Whilst down there, they also fitted me in for chest x-ray and a CT scan of my chest. By the time I got up to the room it was lunchtime and I hadnt eaten so I was left to eat lunch. Then it was the big talk - the in's and out's of transplant. The co-ordinator came in and discussed everything about transplants and answered all of our questions. This lasted for 4 hours!! We finally got to make our way home at 6pm and got home later that night - both absolutly shattered!!

A few days after the stay, I got a phonecall from the main Dr - Dr Carby. He said everything on my tests were fine except for one thing. Whilst doing my liver and kidney scan, a little mass was picked up in my pelvis. I need to have another scan at my hospital to check out what it is. I have been told not to worry and that they arent worried at all. They believe its just a little cyst or polyp in my pelvis and that many girls have them, but because they have found it, they have to find out for definate what it is. I did a pregnancy test for them to rule that out and that was fine - thank god!! So that scan is being booked in and until then, im on the inactive list.

It was ALOT to take in and a very busy and tiring few days. It felt like it was happening to someone else and that they were talking about someone else. I just need to talk through plans with my family and pack a transplant bag before I go on the list, so that if/when I get the call, I dont have to waste time packing a bag, i just pick it up and go!!

x Lots of love x

Wednesday, 8 June 2011

24 hour oxygen and acting posh

So I have been doing lots of little odd jobs...putting stuff up on ebay, going bank, seeing friends for lunch, posting off the stuff i sold blah blah blah. Got stuck in many different queue's in lots of these places and then realised it was half term!! I had a few days of doing not much as I was really tired. I dont know what it was down to really but I need to think about getting some salt tablets for the hot weather, as this can cause CF patients to feel extremely tired as we lose alot of salt when we sweat. Lovely!! I went shopping with mummy one night to Lakeside to make a start on birthday shopping for my brother. Again i was pushed in a wheelchair. The less said about that, the better.

The weekend was great. Friday night, me and Scott went to see X-men and we had pre-booked the tickets. When we got there, the tickets were not registering and it turned out the screen was overheated and that the screening had been cancelled. We were offered a refund (which we got) and then they took us into the earlier showing which had started 4 minutes ago. Scott moaned that he missed the trailers but that was a good thing for me!!

Saturday was a VERY tiring but brilliant day. We got all 'poshed' up and spent the day at Epsom Derby horse racing!!! I won absolutly nothing and scott won the first 2 races...that was only because he put £1 on every horse running!! Haha! I decided I was going to take my portable oxygen concentrator so I didnt have to struggle during the day as we were going on a minibus so I wouldnt have been able to leave. Mum plugged it in to charge overnight and in the morning when I went to leave, it hadnt charged.

I still went. Without oxygen. I left home at 9am and got home at 7.30pm. Call me stupid or whatever comes to mind and I would prob agree. But I am stubborn, I had been looking forward to the day for ages, I was all ready to go and found the oxygen wasnt charged at the last minute, and CF has stopped me from doing so much already that I didnt want it to stop this day out. It was a 15 minute walk from the coach to the races which was just about manageable before and after the event. Once we were sat at the races, all the betting places and food and drink stands were steps away so that was fine. Scott was, as he always is, truely amazing and I didnt have to walk anywhere at all as he did it all.

I paid for it that night and spend all of Sunday indoors (after mcdonalds breakfast of course) resting but it was worth it. I was so tired and my little lungs felt really heavy and that is why I have come to a decision. I have spoken to Lance and requested to have portable oxygen sorted out rather than the portable concentrator. The concentrator doesnt last too long, is quite heavy to pull along and more 'obvious' to everyone. For people that havent seen it, its similar to a suitcase on wheels but not as big as a whole suitcase lol. If I have portable oxygen, I have a main base at home and fill the little cylinders up from that. I can then carry them in my bag or something and they last 8 hours. Bit more discrete and manageable. Having to have oxygen on when im not indoors is horrible as I hate people seeing me with it on, however, if it means i can do more and breath better, its worth it.

x Lots of love x