Well to say my trip to Harefield was a success is an understatement :).
We decided we would find a hotel nearby and stay over the night before because my appointment was 9am and trying to get into London for that time of the morning would've meant traffic galore and a VERY early start. Harefield have accomodation for visitors/family/friends etc, so we decided to stay there because all the hotels around the area were rather expensive, so we paid £50 to stay in the accomodation but because of our benefits (esa and carers allowance) we got it for £24.50 so that was fine, it wasn't the nicest room, the beds were very hard and it was like being in a sauna, despite having the fan on and window open! I was absolutely exhausted and crashed out quite quickly, but I did keep waking up all night restless, sweating and unwell so I didn't get the best night sleep, I also was extremely nervous about the appointment so that didn't help! We'd also been to TGI Fridays in Watford for dinner beforehand where I had chicken strips for starters and a full rack of Jack Daniels ribs and chips for main, then a yummy pina colada style fruit smoothie for dessert, alongisde unlimited coke I was, to put it bluntly, stuffed :D It's easily my favourite restaurant just very disappointing that the closest one to Ipswich is 1 hour away :(
Anyway, the next morning I very reluctantly woke up at 8.30, I just couldn't be bothered and I don't function well in the morning lol, so after my half-hearted attempt at putting make up on I dragged myself (wheeled) to the hospital. It was very sunny and hot which meant I got to wear my lovely playsuit, so I was happy I got the chance to show it off, considering I don't get out much and particularly always seem to go out when it's raining and cold, so it was nice to finally wear it :)
Here is a photo of us in the car, just about to begin our journey, I decided not to have my o2 on in this photo because I thought I needed a new updated photo on here!
The appointment started with the general, weight (42kgs) blood pressure, temperature etc. My heart rate was rather high, 154 resting and my temperature was 37.8 so that was a bit high and she asked me to take some paracetamol but I had some co-codamol instead because I was in a lot of pain anyway, so that seemed to work although I was sweating like mad all day, yuck. My weight was 44kgs last time I was at Harefield but I explained to them I did have a bad sickness bug which knocked me and my weight for six, my appetite didn't recover immedietly and it wasn't until I started my most recent course of IV's that I started eating a lot again, thankfully it's on the up (it had gone down to 40kgs!!! eek.) So at least it was going back in the right direction and they were quite happy with that. I had what seemed like bottle after bottle of blood taken from one tiny little vein and then had to do a urine and sputum sample, all the basic 'check up' stuff.
I then had to meet with their dietician and she seemed happy with what I was doing and encouraged me to continue with the Megace as it was clearly helping my appetite, she was also happy with the 'Pro-Cal powder' we were adding to my meals and said we could probably up that if we could fit it in anywhere else, currently Josh makes me a large saucepan full of bolognaise and he puts around 5 powders in which adds an extra 500 calories to the meal, I then eat that over the course of the day, or the following day so we can add more into various other foods. She also said when I'm unwell and don't have an appetite, if I can tolerate it, I should do Calogen, which is 60mls of basically pure fat but strawberry flavour, it tastes horrific but I can put it down my feeding tube, I had been doing it before but it made me feel extremely bloated and put me off food so I stopped doing it as often, but she said it would be beneficial when I don't have an appetite to take the pressure off needing to eat and using that. We also decided they would order in soya feed ready for after transplant, obviously you can't eat straight after transplant due to ventilator tubing etc, so you have to be tube fed and with my milk allergy I can only have soya, so they've ordered that in ready for me.
I then had lunch, a couple of cheese and ham toasties and some lucozade to give me energy because I was practically asleep, lol. I then had an x-ray and an ECG. This was all quick and easy then I just had to wait for my turn to see Dr Carby, the transplant doctor. I kept myself occupied playing games on my iPad but in my head, I was going crazy, nerves, fear, every thought I could possibly think came into my head, how would I cope if they said no, could I take another 'wait and see' I just had no idea what I would do.
Finally the waiting was over and I was called in, Dr Carby is a lovely, welcoming man and put me at ease straight away. He basically said he was very happy with the diabetic care I'd received since the 2-day assessment, he has asked Papworth to see me more often because we needed to keep it under control, I explained that I had took my foot off the pedal because I was working so hard trying to gain weight I hadn't always remembered the importance of insulin, he seemed very happy with the improvements and he understood the weight situation. He then said "well we can see you are clearly very unwell and transplant is your only option really now so it's upto you, we can put you on the list today if you want, or you can go away and think about it, or let us know when you'd like to go on" I almost burst into tears and if I wasn't so ill and stuck in my wheelchair I would've jumped up and hugged him, I said now!!! Unfortunately, my appointment was late and the co-ordinator said they didn't have time to do it then and she is on holiday until Monday, so I have to wait but I will be listed on Monday :D:D they will do all the paperwork then give me a call and it will be go go go. Just waiting for that important call for new lungs!!!
I'm so proud of myself for getting this far, even if I don't get the call in time I'm still happy that I at least made it to the list. When transplant was first mentioned to me in October 2010, I weighed 32kgs with a BMI of 13.3, my average blood sugar was 16% and I was absolutely miles away from being listed. I got my weight to 44kgs which was a BMI of 18.1, my average blood sugar was 10% and I'd come a very long way. Yes, I was a damn lot iller, 3 lung collapses, 24 hour oxygen, permemant IV's, and more hospital stays in that time than I'd had in my entire life... But I did it.
I'm pretty sure my CF team didn't think it would happen, there were times when a few of my CF consultants asked if I wanted to basically give up because the battle to get on the list would be hard and I remember the exact words they said to me - 'it's not impossible, but we think it's very unlikely'... Never tell me I can't do something, because I will do it and I will prove you wrong :D I'm very stubborn and I would have never in a million years given up, what would be the point?!
So I'm so glad I continued to pursue my dream of getting on the list and now it's here, I've done and I'm now one step away from new lungs, just got to wait patiently for that important call and my new life can begin :)
In the mean time, we still have a wedding to plan! Which is extremely exciting, but wouldn't it be great to get lungs really quicky and have the perfect wedding day, new lungs, new life.
I want to say a huge thank you to everyone who has supported me so far along this journey, I've had so many amazing comments of support from so many people. I admit there were times when I felt like it wasn't worth carrying on, but I had the motivation from everyone urging me on and keeping me positive, giving up was never an option. Thank you to the 'Evening Star' for their continued support and constant articles in the newspaper raising awareness for CF and organ donation, they encouraged me to share my story 1 year ago and I'm go glad I did, so thanks to them for everything they've done and continue to do :)!
Most importantly, Josh has been so vital in getting me on the list, he's been my shoulder to cry on many times and I'm so thankful, he always kept me focussed and has done his bit in my weight gain and sugar control by making me extra fatty meals and always makes sure I do my insulin, just in case I forget, so it's a massive thanks to him because he's just as big a part of me getting on the list as I am... Also my Mum and other close relatives, without them I probably wouldn't be where I am now, they have been amazing and kept me on the right path.
And also thank you you to everyone who reads my blog and the people who don't even know me but have sent me messages of encouragement, you don't know how much you help, even a tiny little message saying get well, or keep going it really does brighten my day and makes me feel that people really do care about me. Also a little mention to Rachel who was inspired by my story and decided to run a marathon for the CF Trust.
So that's that, one chapter of my story done, a BIG thank you for reading and here's to the next one - new lungs :)