Sunday, 19 February 2012

Since transplant

Well I need to get back to the land of blogging....I haven't blogged in ages about what I have been doing and I promised myself that I would carry on doing this blog after transplant to keep up-to-date with everyone, so I could look back on how far I had come and to raise awareness and show people what organ donation really does do for another person and the people around them.

So it's been 6 months since my transplant on 20th February and I have been so busy! I have had a few weekends away in the first few months after getting out. One was a weekend in Brighton with Scottings which was bloody great...I walked up and down the pier without too much of a struggle. Another weekend was to Lowestoft to see his nanny, grandad and auntie Stella. It was lovely and we hope to be going back up there again soon.

In November I was back in hospital for 2 weeks because my lung function wasn't increasing as much as they hoped so they gave me iv's (thank god I still have my port) and 3 days worth of Iv steroids. These left a horrid taste in my mouth and felt like I had been chewing and sucking on pennies - really metal taste. Yuck! I busted out for the weekend to go to one of my best friends birthdays....we went for a meal and dance after and was lovely! Although I didn't really dance as I was still wobbly on my feet and it's the first time I wore mini heels...not my brightest idea I know! It was VERY strange being in there for 2 reasons: it brought all the transplant memories back as it had only been just over a month since I left, and I wasn't feeling ill so had all this energy and couldn't do anything about it.

Xmas was amazing! Emotional but brilliant. We had Scott's mum and dad at ours for dinner for the first time which was great as I've always been close to them but, like I said before, the transplant has brought us even closer together. We spent time up daddy's pub with Lisa and her family and a few of the regulars. I got fantastic presents from everyone as usual, managed to eat a pile of dinner as I could actually taste it and eat loads this year, and after dinner we attempted to set off sky lanterns for my donor because it was the family's 1st Xmas without their loved one. I don't think we did him/her justice thou, as we screamed most of the time because the wind blew them into next doors washing line and nearly set that alight and then one wouldn't take off and nearly landed back on Scott's dads head! Hahaha! The thought was there!

New years eve was relaxed but funny! I'm not really too bothered about new years as its so crowded and overpriced. Me, Scott and jack went up to our friends flat in Rochester, Danny and Debbie. We all went for a big Indian meal, played comp and watched tv and just laughed, joked and chilled with each other. We watched the fireworks on the tv which were amazing and I would love to go this year! We went home the next morning and got ready for the pubs 'posh' day.
Posh day was bloody fantastic and we all danced and drank from about 2-9pm is when I got home. We had the jukebox going and then once the dj kicked in drunk about 5 it got even better! I was laughing, dancing and drinking until it got towards the end of the night about 7 and I started getting tired and therefore emotional. I sat down with a few of the regulars, daddy and Lisa and then someone asked if I had a good time and I leant on dad and cried. This then made Lisa cry and dad had to wipe his eyes a few times. A few of the people up the pub also joined in lol. I just couldn't really believe after the year both me and dad had, that we were both there in the clear and happy.

So here's to 2012...I'm alive, breathing with a lung function in the 60's, weight is increasing around 46kg, surrounded by amazing friends and family and ready to do loads of things and live life as best I can....I owe it to the people around me, the people who saved me and the donor...I'm living for the both of us now and have to do it justice!

X Lots of love x

Saturday, 14 January 2012

Learning to walk, talk and breathe again.

On E ward, i didnt sleep well for the first week. Its hard to sleep in hosp anyway but i was on lots of medications that affected me and plus it was the first time i had been alone in the room overnight on my own in months as in ICU, there is someone in the room 24/7. I was no longer on regular fact i took a few painkillers because i had a headache lol! My scar was tight and i couldnt straighten too well but the main struggles were with the drains and attempting to walk.

The physios came to see me once a day now but for longer and i dreaded it. I cried most times and fell over many times - once smashing both knees to the floor and again flat on my arse infront of a group of 4 porters - great one! Normally after transplant people dont have too much of a problem with walking but I had been very weak for months, been in bed for 2 months so all my muscles had gone. I had different frames and chairs to hold onto whilst walking but always had someone holding onto me too. At first it was walking up and down on the spot and then it was walking up and down the ward getting further and further each time. It was a big performance to have physio as I had my drains which had to carried and an iv pump machine.

By the 3rd weekend after transplant I was drain free and tube free and able to have my first proper shower in months. I was really nervous about getting my scars and dressings wet and slipping over but, although it took me and mum an hour, I felt amazing having clean hair and my own pjs on instead of those bloody blue gowns! This meant that weekend when Scott came up we had mini adventures. He even was allowed to push me upto the pub on the corner to watch the Man U v Chelsea game. I got abit nervous being off the hosp grounds but felt safe with Scott there.

By the end of week 4, I was finally able to start pushing myself up off the bed and the chair if it was high enough. I had my nebulisers stopped, all except one which i have to stay on to keep bugs out of my airways and my lungs safe. I was now walking mainly on my own but pushing an old lady zimmerframe :) and my appetite had shot up and I was now eating everything in sight! Day by day things got easier and I was able to do more and get about my room on my own as I had things to hold on to. The last week was spent teaching me how to walk up and down stairs. It was sooo hard and I was using both arms to pull myself up each step, although I had to be careful as I would pull my scar apart lol.

After 6 weeks after my transplant I came home - Friday 30th September. I had banners put up by my neighbour and had big cuddles with all the family. Scott stayed that night too....the first time I could cuddle up properly with him in months. I had a range of emotions when getting home which lasted for that weekend: happy because I was home, relieved that the ordeal was over and that I had made it as I didn't think I would see my home again at some points, but also scared as I was not surrounded by drs or nurses and what if something went wrong?

I just want to finish this post by saying thank you. Thank you to everyone for the support for me and my family. You honestly don't understand how much one little message can make. So anyone who sent me Facebook comments/messages, text messages, phone calls, cards/pressies and the special ones that managed to come all the way up to Harefield, I love u all. Special mentions to the people that were there every single day....mummy, daddy, Danny, Scottings, Lisa, Michelle and Jess (even though they had their own problems), Ria, Joey, my in-laws and their family Colin, Lois, Stella, Steph (who had her own probs) and Sirin and Carlton who even got te train up to surprise me! Xxxx

X Lots of love x

Oh and for all those that didn't say anything at all - then fuck ya! I have always said you realise who your real friends are when you really need help and support. I have proved this many times when I have had hospital admissions but this is the final straw. I can't be bothered with you as much as you couldn't be bothered to type out one little message to me. Im shocked at some people who I really did think cared but it just means I can send more love and concentrate more on those special people. X

Friday, 16 December 2011

Recovering from a transplant - Intensive Care

I went to sleep at 2pm on Saturday 20th August 2011 holding onto my mummy and Scott. I had spoken to my dad and my little brother. Scott went home straight away as he said he couldnt just wait he went to the pictures with his friends to see the inbetweeners film haha!! My mum said it was the calmest she had been for weeks and she went back to her room at Harefield and read her book, watched the television and waited for the phonecall. My operation took 7 hours and they said they were some of the worst lungs they had seen and that there was not much of them left. I know they had to scrap the left side out as it was stuck to my chest wall - nice! Mum got a phone call just before 9pm to say it was a success and that I was being taken to recovery/ICU. I was left sedated for that night and sunday so I could give my body a rest and then was woken up on monday morning.

I remember waking up and not wanting to move, feeling bit confused and then panic set in as i realised i had had a transplant and that I was still on a ventilator with tubes everywhere. Through-out the day I was slowly weaned off the ventilator and by about 4pm that day I had the tubes taken out my throat and I was breathing on my own!! I was given a small amount of oxygen through nasal specs to help me in the early days as I was weak and not breathing deeply (I wasnt used to it and it was sore)!

I was in intensive care for 2 weeks. I was hooked up to machines and pumps and had lots of tubes everywhere. Once the ventilator was out, I was left with my PEG tube feed, a neck line so I could have drugs put through it, 4 chest drains; 2 each side, a catheter for my wee wee, an artirial line in my wrist to take blood from, and an epidural needle in my back to numb the pain. My diaphram was not moving and my voice had gone as my vocal chords were damaged during the operation. I was banned from eating and drinking for 2 days incase the contents were going into my lungs instead of my stomach. Because of these above reasons, the drs wanted to insert a tracheostomy, which is a tube that is inserted into the windpipe through the front of your neck to help aid breathing or to create access for removing build up in throat or lungs. I begged them and fought my way out of having it as I really did not want it so we compromised and I had bronchoscopys everyday.

Bronchs are when a camera is put down your nose or mouth (in my case it was my mouth) to look into your lungs and sometimes they will suction out anything that is down there. I had about 3 or 4 of these in a week and had to be awake because my lungs were still weak and recovering from transplant so it was too much for them to be sedated. I had a numbing spray in my mouth which they always say tastes of bananas when it clearly tastes more like hairspray and is vile! I was allowed to hold a registrar doctors hand and apparently nearly broke it as I couldn't handle a few parts during the Bronchs. The food was not going into my lungs and there was only a few little bits of secretions down there so I was given the go ahead to start eating and drinking little amounts. Yay!

Next up was getting back up on my feet. This was the hardest bit of transplant for me mentally and physically. The physios started getting me to sit up the day after I woke up. I had a machine which I held onto whilst sitting on the edge of the bed and it raised up and I had to pull myself up and lock my knees straight. Well that certainly didn't happen! The physios (all 3 of them) had to hold my legs, hold my chest and my drains and help hold me up. Basically I had to learn to walk again. The last 2 months I had been bedridden and unable to move hardly and I was weak for ages before that too so it had taken its tole. I cried alot when I was with physios due to frustration, being scared at moving about attached to everything and being tired!

During the 2 weeks in intensive care, I was numb. Not in the touch sense but in my feelings. I didn't know what to feel, what to do or what to think. I admit I didn't feel happy that I had a transplant straight away as I was still feeling ill but in a different way. I could breathe easier but still not great but I was unable to move very well, still weak and sore. Having these sad, negative feelings made me then feel guilty that I had been lucky enough to get a transplant and that someone else had died and given me this chance but I was not smiling, however, I was still very grateful if that all makes sense?

I left intensive care to go to E ward which is the transplant ward in the 3rd week. At this point, I had my arterial line and epidural needle out. I had finally washed my hair which automatically made me feel more human again. It was weird being transferred to the ward as I had been in the same 4 walls for over a month and it was scary coming out of that little safe secure bubble. Whilst in the room, I always had a nurse in the room 24/7 so to be moved to a ward was abut unsettling. Scott went back to work in the second week so that was also strange but I spoke to him all day and everyday. I know he hated to be away but he is self employed and he knew I was getting better and of course mummy was still by my side all the time.

Will write about the rest of recovery in the next blog to break it up abit. Plus sorry for lack of pics, they aren't bloody uploading but I will keep trying later!

X Lots of love x

Wednesday, 26 October 2011

Im back.....and breathing!!!!

Wow!!! Its been just over 3 months since I last blogged, and im sorry, but I have a very good reason...I had my double lung transplant!!!! It WAS NOT an easy ride as I will soon tell you but Im here and im happy. I will have to do this in a few different blogs so tonight I will do the 1st part.

Scott went on holiday to Ibiza with a few of the boys at the start of July for a week. During this week, I had no energy and slept on the sofa for most nights only just managing to get up the stairs to go to the toilet. We called the hospital and they took me to the ward and did blood gases. They needed an arterial blood gas to check my carbon dioxide levels, and this was the 1st time i was made to have one (before i had got away with having ear cutting). They numbed it with cold spray and it was sky high so i was taken straight to the high dependancy unit and connected up to loads of tubes and an NIV mask which works with your breathing. When you breathe in, it forces air into your lungs to make them expand and get rid of the carbon dioxide. I was in there for 2 weeks and spent my 23rd birthday in HDU - I got an ipad 2 though :) The blood gases came down and I was able to go home. A few pics....
I was out for a few days but started to have the same symptoms again within a few days but i managed to drag myself to the pub as my step-sis Emma had arranged a big fundraising cake-bake sale. It was brilliant - there was a auction with prizes that companies had donated, cake sale, bbq, face painting and raffle. Its only a small pub but it was packed and raised over £1000 which all went to the CF Trust. After that weekend, I was rushed in to Lewisham again as i had to call my mum home from work as i couldnt take it anymore - i couldnt even crawl up the stairs and could just about get off the sofa but wasnt eating and couldnt hardly keep my eyes open. Lance met us at the doors with a wheelchair and I was back to HDU and back on the NIV. I stayed on this for a few days, meanwhile developing severe pain attacks. I have never had them before but they are horrible - my sats were fine but when i had an attack it felt like my airways had closed and i was gasping for breath. I ended up being too scared to take my NIV off so was quickly having a drink and strapping it back on again.

I didnt know this at the time but.....the doctor took my mum into a room and told her that they couldnt get the gases down and that there was nothing more they could do for me. She was given 2 options: to put me on machines until i passed away or they could just make me comfortable. Mum was in shock as she didnt realise it was that serious because we managed to get the gases down before. She asked them if they had rang Harefield as i was on the transplant list but they said no, so she made them ring and Harefield accepted me. My mum called Danny, Scott and daddy up to the hospital to see me before i went in the ambulance. I was blue-lighted to Harefield with a ressertaion team in the back with me and mum and scott had to meet us there.

At Harefield I was attached to more bloody tubes and wires and was put on a machine called the Novalung. I was laughing when I got to Harefield because of all the stress and being so ill, i had wee'd myself in the ambulance which i found amazing - i find humour in the strangest things!! Anyway, this machine is 2 thick tubes; one in each groin, and it cleans your blood of the carbon dioxide. I dont remember having it put in but it was sore and i wasnt able to move my legs. They had to be straight and obviously i had to just lay on my back which was highly uncomfortable. I was on this for 2 weeks until I suddenly struggled more to breathe as my lungs deteriorated even more.

This is when I was put on a different machine called the Ecmo. This machine does the same as the Novalung but it also adds oxygen to the blood aswell. One of the tubes was take out my groin and put into my neck. This procedure should take under an hour but for me it took 9 hours.
Arriving at Harefield
The Novalung
The Ecmo tube in my neck

It took 9 hours because they had lots of problems. They couldnt get the tube into my neck and they were shoving it in and both men tried and were sweating and struggling. They eventually got it in and turned on the machine but it said 'no flow' so they had to cut the tubes and flush it with heprin to get rid of blood clotting in the tube....this happened 3 times. I also had to be bagged twice because my sats dropped to 30 and everything was blue. Then when they took the tube out my groin, they had to press hard on the hole to stop the blood but then realised the dressing pack had something missing. They had to get another pack and clamp and he was pushing really hard until it was sorted. So this event took all night and mum eventually left at 9am traumatised....oh forgot to mention that i was AWAKE through it all with no painkillers as it was too risky to sedate or ventilate me.

I was on the ecmo for a week and a half until I got the call for new lungs. During these 3 and half weeks at Harefield i had 2 false calls for lungs; the first were too big, the second were too damaged and the third were perfect. It was Saturday 20th August at 6am when the co-ordinator came in to say that they were going to look at some lungs. We then had to wait until 11am when they confirmed that the lungs were great and i was going to have a transplant. Mum screamed with joy and Scott was so pleased. We rang dad and he was running the pub and he told me they all cheered and clapped and we managed to get hold of my bro too. I remember feeling terrified and they put me to sleep in my room as i had too much equipment to move. Then i went to sleepy night nights xx

Part 2: After the transplant is coming in the next few days!!!

x Lots of love x

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