My Transplant Diary
Day 1 - The Call, The Op, and The Family
It was a day like any other, that ended up like no other. I woke up in Southampton general hospital having been admitted the night before, I wasn't particularly ill, but came in as part of my routine admissions, and then, the phone rang. It was Harefield, they had some lungs with my name on them. They asked me how I was and where I was. When I let them know I was in Southampton they said they'd need to ring me back... You see, when you get admitted to another hospital you need to let the transplant team know. This is because instead of ringing you, they'll ring the hospital you're in, so they can get a more accurate view of your condition, and find out whether you're well enough to have the operation. So there I was, sat in my hospital bed, knowing there were lungs ready for me, but knew it was down to how my CF team felt I was as to whether I could take the next step.
It was probably only about 10 mins before my team walked in, but it felt more like an hour. In came T-dog (The nickname I gave to my consultant 😂😂😂) and one of my CF nurses. They had this slight look of happiness on their faces. "Alright?" Said T-dog, "yeah" I replied - "just waiting for a phone call..." - at this point we both knew that each other knew. "Oh yeah? You feel well enough?" Asked T- dog. "yeah" I replied. "Okay then, we'll book you an ambulance." - I'd never been in an ambulance before, so even if the call didn’t go ahead, I knew today was going to be a good day.
It was at this point my CF nurses threw her arms around me in happiness, (I'm hoping the fact she showed human emotion doesn't get her in trouble with some n*bhead with a clipboard) you see, I've spent near enough 1 and a half years out of the 3 I waited in this hospital, with this team. And just like any other human being, you're bound to grow close to them, so it was really nice to be with them when I got the call, it was nice to share that moment with them.
Next thing I knew I was in the ambulance, with two lovely paramedics, one sat in the back with me, and the other drove. The man who sat in the back with me was lovely, he chatted to me the whole way and made sure I was okay. The women, who drove, only said one thing... "We blue lighting him?... Sweet!" and then closed the door like the badass that she was!
I arrived there and was greeted at reception by my transplant coordinator (who would later be nicknamed by my family, J-Lo) I want to, at this moment, say how amazing she was. She was so upbeat and made us all feel at ease considering the situation we found ourselves in. She came and updated us regularly even if the update was that there wasn’t one, and if something needed doing, she would chase and make sure it was done. So much love for J-Lo right now - She's the real Jenny from the block <3
I was shown into a room where not long after my sister, mum and girlfriend arrived. Later followed by my other two sisters, and then finally my dad. Its safe to say that room was quite FULL, but I wouldn’t have had it any other way - it meant so much for my family and girlfriend to be with me, for them to drop everything and leave work at the drop of a hat so they could be there. I really feel that we've all grown closer because of it.
I was soon seen by members of the surgical team who talk you through what operation you're having, the possible complications, and what precautions they might take to combat any issues that might arise, and then you, quite literally, sign your life away…
I always feel I stayed remarkably calm, even up to 10 mins before I was laughing with my family and scrolling through my Facebook, (much to my girlfriends annoyance 😬) like it was any normal day. I think this is because with it being my 3rd call, I knew the reality that it could be called off at any minute. Even when I was in theatre about to be put under, I don't think I 100% believed it was going to go ahead... But then it did... 9 hours later I was taken out of theatre and went to ITU. 18 hours later… I woke up…
Don't forget you can sign the NHS Organ Donation register at any time, and it only takes 2 mins. You can do to here - http://bit.ly/1U5qahK
See you tomorrow for Day 2!
Much Love & Keep Smiling!
Day 2 - ITU
When I was pre-op they said to me that the average time in ITU was 5-6 days, it was a bright place with lots going on, so I was prepared for it to be a LONG 5-6 days. But less than 24 hours after being woken up and having my breathing tub removed, I left ITU… I don't remember much of today, I'm even ashamed to say I don’t even remember my nurses name, but what I do remember is she was bloody brilliant! On ITU the Nurse to Patient ratio is 1:1, meaning you have your own nurse, and mine was bloomin' kick ass!
Before my op, I remember seeing a video on Facebook of women who had a breathing tube removed, and it filmed her taking her first breaths with her new lungs. Her face light up as she inhaled. Now although I don’t remember my very first breathes, the first breaths I do remember were, unfortunately, not like that. Its wasn't easy and it was quite painful, with 4 chest drains, bruised and fractured ribs, swelling, scars, and all the other general post op stresses on the body, so inhaling isn't 'comfortable'. However the feeling that the operation was a success, the feeling that the gift you've waited so long for is finally within you, and the feeling that your new life is about to begin thanks to the amazing generosity of a stranger - that really makes all the pain go away.
When I was first woken up, apparently I was pretending to be a lion, and answering the nurses maths problems for them… I should point out at this point, I am neither a lion or good at maths - it must have been the drugs…
By the evening I had been moved to Rowen Ward where my rehab would begin. I didn’t know what to expect really, but I did know that I was ready.
My plan? To just do whatever they asked me too.
Don't forget you can sign the NHS Organ Donation register at any time, and it only takes 2 mins. You can do to here - http://bit.ly/1U5qahK
See you tomorrow for Day 3!
Much Love & Keep Smiling!
P.s. Don't mind me sleeping in my sexy stocking with my thigh out 😉
Day 3 - Like a Virgin, Walking For The Very First Time...
To think years ago when they started doing these operations, patients would be in hospital for months and not get out of bed for the first few weeks or so is pretty crazy, because today, I walked for the very first time, like a virgin, with my new lungs.
Whilst I was pretty 'high' on the morphine, and seem pretty out of it in the video below, I actually remember every step, and boy was it special! Day 3 and walking, that's crazy! They told me at my assessment that I'd be out of the bed as soon as possible, "if you don't use it, you lose it" - the longer you stay in bed, the longer your recovery will be, so it makes sense why they get you out so quickly.
Now I've never tried walking with a catheter before, but let me tell you, its neither pleasant nor comfortable, and I would highly advise against it if you have the choice, however, my desire to walk outweighed my desire to stay in bed (something my CF physios will find very hard to believe) and there I was, day 3, less than 48 hours after waking up, walking…
Today's session with the physio was also spent working on my huff and cough. You see post transplant its important you keep your lungs clear of phlegm. Because you don’t have an immune system (something I'll explain tomorrow) you're prone to infection, and keeping your lungs clear is a vital way of keeping infection away. So today, we spent working on huffing and coughing. When you get some new lungs (he says as if it’s a daily occurrence) its very odd, but you kind of forget how to huff and cough, you know how to do it, but you can't quite get it right. It's something very weird considering I have CF, and that’s pretty much all I did pre-transplant!
After that the doctors came in and there was mention of my first chest drain being taken out tomorrow, now if you've had a chest drain before, you'll know just how excited I was to hear this news!
The rest of the day was spent, starring down at my chest and watching it rise and fall, something I can see myself filling the time with a lot over the next week or so. Just admiring how easy it was becoming to breathe, how much air I could get into my, well my donors, lungs, a sensation I'm not sure I'll ever quite get used too.
Don't forget you can sign the organ donor register at any time, and it only takes 2 mins. You can do to here - http://bit.ly/1U5qahK
See you tomorrow for Day 4!
Much Love & Keep Smiling!
Day 4 - No Pain, No Gain.
A few things happened today, so prepare yourself for a long post. Firstly I had my first chest drain removed, secondly, my epidural stopped working so I was given a morphine button (its as awesome as it sounds), and finally I said yesterday I'd explain the immune system situation.
The epidural stopped working yesterday I think, but they were just running tests to see if it was working, thankfully I wasn’t in too much pain as the team were more than awesome when it came to supplying me with pain relief. To replace the epidural they gave me a Morphine button, and its exactly as it sounds. Morphine, on tap. Supplied to me when I pressed the button, straight into the vein. Now without sounding like an addict and more like someone who is in a lot of pain and grateful for something that works fast and well - MORPHINE IS THE BEST THING EVER INVENTED, FORGET SLICED BREAD, FULL STOP. From what I've heard not everyone is given this, as not everyone reacts well to morphine, thankfully, I didn’t have any bad side effects and it dulled the pain brilliantly. There is a lock on the morphine, so you can only give yourself a dose every 5 mins, this is to stop you overdosing yourself - or having too much fun 😉. This would also come in great use when it comes to airway clearance, as you can imagine its incredibly painful to cough at the moment, and so having this to dose myself with right before we did a session with the physio was a god send.
It also came in great use for the removal of the chest drain. For those that done know, a chest drain is a plastic tube that is inserted between your ribs and into the sack surrounding the lung, it lets both gas and liquid escape whilst your lung heals itself, and then it will be removed and the hole in the sack sewn up. (Please note, I'm not a doctor, but in my drug educed state, I'm confident this is correct.) So as you can imagine, the removal of such item is, not the best of procedures. Essentially, they cut the stitches holding the tube in place, and then they pull. Now, whilst it isn't pleasant, the nurse I had removing it was absolutely amazing, I still cant get over how knowledgeable and calming the nurses on Rowen are (although to be fair, all the nurses I've met are just insanely talented people so I should have seen it coming!) The drain was removed pretty quickly, and thankfully I had my morphine on hand to help with the 'left overs'.
Now onto the immune system situation. To stop your body rejecting your new organs, they suppress your immune system. This is because your body see's your new organs as a foreign body, like it does with bacteria, so it tries to fight it. Now because you don’t have an immune system, your at high risk of getting an infection. These are the two main causes of complications post transplant. Infection and rejection. Infection is avoided through airway clearance, and rejection is avoided by taking your immuno suppressant pills - if only I had a pill to stop me from being rejected when I was 14…
Today was a pretty rough day in terms of pain, and so it was quite wonderful to have this one with me. My girlfriend has been pretty awesome through this whole process, both being on the list and now going through the transplant, and I'm so grateful to have her by my side.
Don't forget you can sign the organ donor register at any time, and it only takes 2 mins. You can do to here - http://bit.ly/1U5qahK
See you tomorrow for Day 5!
Much Love & Keep Smiling!
Day 5 - To Boldly Go Where No Man (or Women) Has Gone Before...
Day 5, and today I got one HUGE step closer to being totally 'wireless'. A second chest drain went, along with my PIC line (a line inserted directly into a large vein to deliver IV fluids such as Antibiotics ect…) my catheter, and two blood gas line (a line inserted directly into your artery where it can take blood to measure your Co2 levels.) In place of all this I had 2 separate cannulas placed so that I could still receive IV antibiotics, and the god send that is morphine, but one step closer no less!
I also went for another walk today and was weighed for the first time post transplant. 57kg?! Now considering before the op I was 49kg, this was quite a shock! It seems I have retained quite a lot of fluid. "Thank god you're not a women, otherwise that would be happening every month!" said my friend when I told her! Because fo this I'm peeing about 4 litres a day! And drinking around 3 1/2 litres, not quite sure why? I've put it down to having a really dry mouth due to the drugs. We expect my weight to drop back drown over the next few days.
Now one issue that did come up today, which is quite common after operations, is that I still haven't 'been to the toilet'. Bowl problems are something you always want to avoid, but especially so after a transplant when you're focusing on fixing other issues. Because of this, it was suggested that I have an enema (if you don’t know, I'd advise against googling…) this became a case of me doing whatever they asked. The procedure took place this evening. I'd like to publically apologize to the nurse who pulled the short straw, my bottom is not where you deserve to be spending your Sunday evening - but I'd like to thank you from the bottom (excuse the pun) of my heart. Fingers crossed it works.
Don't forget you can sign the NHS Organ Donation at any time, and it only takes 2 mins. You can do to here - http://bit.ly/1U5qahK
See you tomorrow for Day 6!
Much Love & Keep Smiling!
Day 6 - Hello Darkness My Old Friend.
We have lift off! Thankfully the enema was not in vein, it appears to have done it's work! And I just want to shout it from the roof top! Bit weird I know, but it feels like the right thing to do...
Also today, I had drain number 3 removed, meaning I only have one left! This final drain was swapped into a bag portable device, which means I can start to walk around by myself without the aid of physios and/or nurses ECT... I believe they tend to do this when you have only have one left 😊
Today we also met the most wonderful man. Don't let my face in the picture fool you, he was insanely talented on the violin and I loved listening to him play. Any song we requested he could play it, so being an actor we asked for some musical theatre, so he played some My Fair Lady. What followed was a bit out of the ordinary and to be honest it may not have actually happened, it could have been the drugs, but my dad started to sing along, but wasn't 100% on the words... whilst my girlfriend did interpretive dance... You know when you are in a situation, and you have almost an out of body experience and just look at it all and your like WTF?! This for me, was one of those moments. 😂😂😂
I'd like to finish with a Charles' Transplant Top Tip. As many of you have notice my hair is platted. This was done by my sister's whilst we were waiting for the go ahead. It is without doubt the best thing you can do with your hair - it keeps it out of the way for surgery, for all the procedures they do whilst your recovering, and it means you don't need to worry about it. 10/10, would recommend to a friend.
Don't forget you can sign the NHS Organ Donation register at any time, and it only takes 2 mins. You can do to here - http://bit.ly/1U5qahK
See you tomorrow for Day 7!
Much Love & Keep Smiling!
Day 7 - "Oh What a Lovely Mustache."
I'd like to start with a comical story that happened on the evening of Day 5 - I meant to write it yesterday but totally forgot. WARNING THE FOLLOWING STORY CONTAINS, URINE, A COMODE, AND SWALLEN BODY PARTS. If this isn't something you want to hear, I'd recommend you move onto the next paragraph... So, because I had a few chest drains in and couldn't move easily, but also I was constipated, they wheeled me in a commode to use in my room if I felt the urge. A commode is basically a chair with a whole in it, where they put a cardboard pot for you to do your business in. Now, because my body had retained so much fluid post transplant my body parts had swollen up, including my testicles. Now I'm not saying I'm 'small' but It genuinely looked like cocktail sausage sat on top of a bean bag chair... So there I was, bunged up and sat in bed, when all of a sudden, I felt the urge. Number one and number two. - So I call the nurse in, she helps me with my chest drains, and I sit down. "Call me when you're done" - as soon as she left, I started peeing - and because I'm drinking so much at the moment, plus my body is trying to get rid of the fluid I've retained, it continued, and continued, and continued - to the point where I started to get worried I'd fill the thing up. All of a sudden my testicles start to feel all warm -" what going on here then?!" They're only bl**dy dangling in my piss! 😂😂😂 Well no way was I going to sit there for the next 15 mins while I try and fail to 'do the deed'. So I had to call the nurse and explain the situation - safe to say she hadn't heard that one before 😂😂😂
Anyways, Today started with me being fasted. I wasn't aloud to eat or drink because I was having a bronchoscopy, this is a camera down my throat and into my lungs to look at them. At my unit they knock you out for bronch's, they say it's easier for the patient and for them and makes the whole process much quicker. Having had a bronch when I was awake in the past I was all for it! It all went okay,I think. below is a video I decided to send my family, straight after I came round. I'm not sure what I'm saying in it, but I know I thought I was being hilarious! 😂😂😂
Now that I'm more mobile, the exercise and airway clearance routine really kicks in. We went for a walk again, I did a few laps of the corridor, and then when we got back I did 3 minutes on the bike! I know it doesn't sound much, but I was bloomin' exhausted! It was weird to be in a situation where my body gave way before my lungs - before transplant it was the other way around - something that's going to take a while to get used to I think... As for airway clearance, my huff and cough are really coming along, I have to ask my girlfriend to cough in front of me so I can copy it, it's genuinely like a comedy sketch - Hilarious to watch - but it works! I'm able to cough stuff up now, but struggling to bring it to the front to spit out. But I'll keep working at it!
Ive had a few people ask me over the past few days how I manage to stay so positive considering everything that's going on. The truth is it's this place. The ward is dedicated to transplant patients, and everything is so positive (staff, patients, visitors, everyone!) - everyone here has received the gift, and they're so grateful for it. Yeah some have been in here for a while, and some have complications - but when you're surrounded by this amazing medical team - you know you're in the right place, and if anything were to happen, they'd catch it and have a plan to fix it. It's also difficult not to be positive - I've waited for this for three years, every time you're asked to do something that's not particularly pleasant, you kind of don't care. Because soon it will all be over and you'll be able to live the life you've dreamed of while you were waiting. Do all the things you've planned to do. It's how I managed to do 2 weeks in hospital out of every 4 for 3 years, just imagining performing again, or going on holiday, or even just playing football will my mates, stuff a normal 23 year old should be doing! I mean, I know I'll never be 'normal' but I can at least pretend! 😂
Don't forget you can sign the NHS Organ Donation register at any time, and it only takes 2 mins. You can go to here - http://bit.ly/1U5qahK
See you tomorrow for Day 8!
Much Love & Keep Smiling!
Day 8 - I'm Wireless!
I'm wireless! Like totally Wireless, I can walk around totally unaided for the first time with my new lungs, and its just completely, bloomin' awesome! :D The final chest drain was removed today, it was a bit rough, and I was glad to see it go.
With my new found independence came a moving of rooms, from Right by the nurses station to just around the corner - "Closer to the door", people kept saying, which they of course meant literally, but also metaphorically. Now I'm more independent, I can walk to the toilet myself, I can wash myself, I can go for walks myself (ish) - this was the first of many ticks on the checklist of things you need to complete before heading home.
My rehab continued with 5 mins on the bike, and a walk to the main entrance. This was something I was looking forward to for a few days now, walking to the front door and breathing fresh air for the first time with these lungs. Such a weird sentence to write. It smelt just like I remember, but different at the same time. Filling up the lungs with every bit of air I can before heading back. The physios are happy with my progress at the moment and today mentioned that tomorrow we would be working on a second tick on the checklist - stairs.
Don't forget you can sign the NHS Organ Donation register at any time, and it only takes 2 mins. You can go to here - http://bit.ly/1U5qahK
See you tomorrow for Day 9!
Much Love & Keep Smiling!
Day 9 - I'm Walking On Sunshine!
I'm walking on Sunshine, Wooooaahhh… Well stairs! I felt this video was a bit of an anticlimax. Like I thought it would be something more than me just walking up stairs, I mean I don’t even look like I'm struggling! The walk was fairly easy, my legs didn’t give way as much as I thought they would, its just the recovery at the top - but that will become a thing of the past as my lungs get stronger, and I continue to heal. As well as all that walking, I went back and did some more exercise on the bike. What do you all think of my outfit? Can you see it appearing in next months British Vogue? 😂😂😂
I'd like to at this point, just say a thankyou to my Consultant. Lets call him, THE DON - because he is! (He's my kind of doctor when it comes to transplant, Says it how it is, and gets stuff done.) On Monday he came into my room and his opening line was "You don't look like someone who wants to get better" - I was sat in bed, with the blinds drawn, watching TV. You see when it comes to the rehab of transplant, you get out what you put in. if you sit in bed for the first week, you're not going to recover as fast (obviously some people have complication and their ability to get out and on with the rehab is beyond their control) but if, like me, its all going smoothly you should be out ASAP working your butt off to get better. So thanks to THE DON, for giving me the kick up the bum I needed!
Today, I also coughed up phlegm for the first time, I mean I'd coughed it up before, but this time I was able to actually get it forward and spit it out. It was weird looking at it and it having such a light colour. When it comes to phlegm the darker and stickier, the more infected it is. So before transplant my phlegm was pretty dark and sticky, I never saw it this light. Something else im going to have to get used to.
Finally to finish the day I had a magnesium infusion, it turns out my levels were low so they wanted to give me a boost. Honestly one of the wort things I've had this transplant so far, fingers crossed I only need it once! For 2 hours straight, you are gassy, both above and below, you're having host flushes, our feeling sick, its just awful! I mean I've got a lot of respect for middle aged women right now!
Don't forget you can sign the NHS Organ Donation register at any time, and it only takes 2 mins. You can go to here - http://bit.ly/1U5qahK
See you tomorrow for Day 10!
Much Love & Keep Smiling!
Day 10 - They will never take, OUR FREEEEEEDDDDOOOOOMMMMM!
Another day, another physio session. Today we went for a long walk around the hospital grounds, and went outside. The sun was shining and it was a lovely day, really enjoyed taking in the sun and the fresh air. We also spoke about the whole 'Do I have CF question', and she explained it really well to me. CF is cause by a faulty gene that affects the movement of water in and out of cells. So my old lungs have these faulty cells - but my new ones don't. So this means that while I still have CF in the rest of my body I don’t in my lungs. My physio explained it like this. Lets say you have a house (the lungs), and it has mould (CF) in it. You can scrub down the mould and cover it up, but its still there and will keep coming back. However, if you knock the house down and build a new one - The mould is gone. Hopefully this makes sense, I always never understood the answer the question "Do you still have CF" question.
Today was also a pretty big day. I left the hospital for the first time. Going out into the real world with my new lungs is quite a big deal, it’s the first real sign I have that home is on the horizon. We decided to go to a put that I visited quite a lot whilst I was on the list, I'd go here for lunch during my transplant clinic appointments, so it was meant a lot that it was the first place I visited with my new lungs. Not least because the food is good, but also - CHECK OUT THAT VIEW!
My first taste of freedom, made me start to get excited for home. It made me excited to start to explore the world again with my new lungs, visit all the places I went before, but to experience them with a whole new lease of life. I am forever grateful for what this individual and their family have done for me, and I can't wait to get out into the real world and start to make them proud.
Don't forget you can sign the NHS Organ Donation register at any time, and it only takes 2 mins. You can go to here - http://bit.ly/1U5qahK
I won't see you tomorrow or Saturday, but Ill be back on Sunday with day 11, 12 and 13!
Much Love & Keep Smiling!
Day 11, 12, & 13 - The 'H' Word.
Not a lot happened over the weekend, just carrying on with physio exercise, eating well and getting used to my new drugs, learning the names, doses and when to take them. But today, something very exciting happened… the H word was mentioned… no not hippopotamus - Home.
Today we had the 'preparing for home talks' they say its good to have someone with you during these, because there is a lot of information to take in and for the first few weeks your still going to need a lot of assistance and help in doing things as you heal. Because of the amount of infomation they usually split it into two talks, but we did ours all in one. They talk about things like foods you can and can't have for example grapefruit, Seville oranges ect… and things these ingredients can be found in some tropical fruit drinks, marmalade. They also talked about the isolation period. The first three months post transplant are when you're most at risk, so they tell you to avoid large groups of people, only really see close family and friends, and be careful around bacteria and ill people. Other things to avoid include, BBQ's, Raw meat, and soil. These are all because they have high risks of bacteria and as you have a suppressed immune system its best to avoid it. However we did have a long debate about the BBQ one, and the issue wasn’t that BBQ's are 'dirty' but because people tend to not cook food properly on BBQ's - (cremate the outside and raw on the inside) Nothing like a classic BBQ sausage! So if the food was cooked properly there shouldn’t be an issue…
We also spoke a little about something that a lot of you have been asking about over the past 13 days, and that’s the donor, I was told I could find out the Gender and Age of the donor at any time I wished, and that I have the opportunity to write to the donors family. I haven't chosen to find anything as of yet, and have only glanced over the booklet I was given about it - I know its something I'd like to do at some point, but right now the whole thing still feels so surreal and I'm just taking my time. I'm not sure when I'll do it, but I think when the time is right - I'll know, now just to think of what to say…
Don't forget you can sign the organ donor register at any time, and it only takes 2 mins. You can go to here - http://bit.ly/1U5qahK
I'll see you tomorrow with Day 14!
Much Love & Keep Smiling!
P.s. The below picture was taken of me just before I went down to theatre, I didn’t have a photo from today, so thought I’d use it - If you follow Tom Hardy on Instagram, you'll recognize the pose… haha
Day 14 - The Return of the J-Lo
Today started like all the rest, woke up, took pills, had breakfast ect… but today we also ticked off another thing on the list of stuff I need to do before heading home. The 6 minute walk test. It’s a simple exercise that just shows you can walk for 6 mins without your sats dropping dangerously low. Before transplant when I did this test my sats dropped to around 80%, which is how they found out I needed oxygen for any form of exercise, today, 14 days after being given new lungs, they didn't drop below 94%. I'll take that.
But today was about to get so much better, because it was the day we've all been waiting for, after 11 days off as she was on holiday, J-Lo returned into our lives, and it was like Christmas, my birthdays and my cousins bar mitzvah had come all at once! She was just as magical as I remembered her to be! She came in and we had a good chat about things, how I was feeling, the future I can now plan for, how she was proud that I was doing so well. She also said something that really hit home. Transplant is your life whilst you're waiting, it’s the end goal, no matter what you do, you do it with the thought that one day you'll not have to do it anymore. Staying well is your 'job', and whilst you're not 'cured', you are a lot better than you were. Its common for people to feel a bit lost, or not sure what to do with themselves post transplant, because they’re whole life has changed, and you can now start to look at living a 'normal' life, which is going to be hard because I don’t think I've ever been very god at being normal!
A common myth of transplant is that it’s a cure for CF, it isn't. You're trading one set of problems for another. They made this quite clear to me when I was going through the assessments, life is never going to be straight forward for a transplant patient, but if you keep your eyes open to any sign of infection or rejection, there's no reason why you can't live as fuller life as everyone else.
Don't forget you can sign the organ donor register at any time, and it only takes 2 mins. You can go to here - http://bit.ly/1U5qahK
I'll see you tomorrow with Day 15 & 16!
Much Love & Keep Smiling!
P.s. this photo was taken whilst we were waiting for the go ahead. No my sisters aren't checking my head for lice, they're platting it haha!
Day 15 & 16 - "TOMORROW, TOMORRW, I'M COMING HOME TOMORROW, ITS ONLY A DAYYYYYY, AWWWWAAYYYYY"
Today we ticked off the last few items on the heading home list. The spirometer, the pharmacists' quick and my first Lung Function! Not everyone does a lung function before they leave hospital it all depends on how you're healing, and whether the doctors think its safe to do so, because the forced exhalation can cause damage if you're not healed properly. But they felt I was okay to do it, and so I did. 43%!!!! Now I'm not one to get hung up on numbers, before transplant I didn’t speak about it because my lung function was constantly changing, but more because my transplant was as much about quality of life than the numbers on a screen. However, considering it was at 20% when I got my call, it was pretty amazing to see such high numbers, and it will only increase as I get better and start to exercise more.
The pharmacists quiz is something I didn’t know about before transplant, but think not only is it an amazing idea, it should be done for all medical conditions. You basically have to know your drugs of by heart and the doses, when you take them etc… as well as why you take them. Not only does this prepare you for going home, and fill them with confidence that you're going to be okay. It also means is something starts to go wrong, you know why medication might help/be causing it and how to fix it. That being said you should always ring your TX team if something goes wrong or you're worried about something.
Finally I was given and shown how to use a spirometer, basically a home lung function machine. They give you this to check you LF everyday, this is to help you keep an eye out for infection or rejection. If your LF drops 10% or more over the course of 1-3 days, you should ring your TX team immediately as his could be a sign of rejection or infection. As well as checking your LF daily, you are asked to write down all the medication you took that day, your weight, and temperature. They give you a little book to write all this down in and you are asked to take it to all your clinic appointments so they can see how you're getting on, and make any changes that might be needed.
After all of this I gave myself a well deserved walk to the canteen and took this wonderful photo of me looking ecstatic outside the hospital. The lady in the background is clearly admiring how happy I am.
Tomorrow could finally be the day I head home. 16 days later… Absolutely insane.
Don't forget you can sign the organ donor register at any time, and it only takes 2 mins. You can go to here - http://bit.ly/1U5qahK
I'll see you Sunday with Day 17!
Much Love & Keep Smiling!
Day 17 - "I'M COMING HOME BABY NOW…"
I'M HOME!!!
Not a lot to say today, woke up, had breakfast, took my pills and the doctors signed my discharge papers! It feels weird being out in the real world, but I think the weirdest thing is that this admission wasn't much longer than a usualy admission for me, but this time, I've walked out with new lungs! Such a bizarre thing to try and get my head around.
I would like to thank everyone at harefield hospital, from the nurses to the cleaners, the doctors to the physios. Every single person there is amazing, their knowledge and skill continues to amaze me, and I would definitely not have gotten out so quickly if they didn’t play their every so important role in my recovery. Forever grateful to every single one of them.
I'd also like to take a moment for my donor. I haven't given much thought into this whole part of it, without sounding ungrateful or rude, my recovery has taken up most of my brain space - lots of new things to learn etc… - but I know over the coming weeks as I continue to heal and get better, and as I start to do thing I did before, they will be in my thoughts. Words can't describe what this stranger and their family have done for me, and I know I'll never be able to thank them enough, but I hope as I set out to try and live my life to the fullest, they are proud of the decision their loved one made and their own decision to allow their wishes to be carried out.
The bottle I am popping below I bought when I was listed, its been sat on top of the fridge for over 3 years now, and even though I don't really like champagne, I enjoyed every mouthful. The feeling when I finally got to open it is something I'll remember for the rest of my life.
Don't forget you can sign the organ donor register at any time, and it only takes 2 mins. You can go to here - http://bit.ly/1U5qahK
Now I'm home, the daily updates are going to stop, however is something happens in my transplant process I will post an update. So I'll see you tomorrow night with Day 22!
Much Love & Keep Smiling!