I've been trying for ages to write my "One Year" post. I've known for a while that I've wanted to write one but I've also known how difficult I would find writing it. It feels like I'm trying to write my Donor letter again except this time instead of just one family potentially reading it there will be quite a few people actually reading it.
I don't know where to start really. This week my time hop has been really weird for me, I'm seeing all these posts and pictures of myself from a year ago and the other day my "I miss Me" post came up, this was the last post I wrote before I got my transplant. When you read that post I think you can tell how down I was, how verging on depressed I was and how much I had just given up on ever getting my transplant. I saw some pictures of me without make-up and it reminded me of my awful horrible skin colour that my IV Epoprostenal gave me and it made me appreciate my skin colour again. My skin was one of the first things I noticed when I woke up, it was rosy but not the horrible fake rosy that the Epo gave me it was a natural glowy rosy that comes from having a perfectly normal working set of heart and lungs. It made me happy to see and made me remember how lucky I am.
I could just go over what happened when I got my transplant with you again but I imagine that would be quite boring for you all to have to read again so if you do want to remind yourself on my transplant here's the first post I did after my transplant "The next Chapter: Post Transplant..."
So I guess what I'm going to do is reflect on my year as a whole and also get excited about a few things that are coming up as well. Obviously when leaving hospital there was a good few things that I had been dying to do (lol) like getting up my house stairs, taking a bath up to my neck (although I did have to work up to that one because I was so afraid that my chest was just going to open and everything was going to spill out), walking up my street, getting changed and making my bed without having to stop... There were just these little things that everyone takes for granted that I wanted to do. Then there were the bigger things like finishing my degree a slightly bigger one for me and something I had been working towards for 4 years whilst also waiting for my transplant. I very nearly gave up on it several times, when I had to postpone it for a bit when I got septicaemia and then when I simply got to points where I thought "What is the actual point of me doing this when I'm just going to die anyway?" So to actually complete that was simply amazing and I have my graduation ceremony to go to as well this coming September which I'm not actually looking forward to but its all part of the experience hey.
I would say the past year has really been me trying to find myself and who I am and I still am definitely not there yet but I feel like I'm closer. I've been able to spend precious time with my Niece and Nephews which as much as they can be hard work I wouldn't change them for the world. I got to meet my new nephew which I'm positive wouldn't have happened if my call had not have happened.
Even though the past few weeks have been a bit difficult for me and my lung function has taken a bit of dive, the past year I have done so much walking and just getting out and about than I ever thought possible and the past few weeks has reminded me how much I do enjoy doing that so I really need to work on trying to get my lung function back up where it was because I can feel the drop and that's quite scary for someone like me because it's a horrible reminder of how easily you could be back where you were and although we all know we'll probably end up being back there some day because chances are transplanted organs don't last forever but I want to delay the inevitable for as long as possible.
I've got a fair few things coming up as well that I'm so excited about. I have my first ever holiday this Friday, it's just going to be a nice little getaway for several days, it will be the first time I will have been on a plane which is really scary. I say first time but the last time I was on a plane I was 5 years old and it was this thing the RAF did at the time where they would fly really low over the little village we lived in and they would open the back of the plane for people to look out of over the edge. There was netting but to my 5 year old mind this netting looked ridiculous it was roped and the holes were huge in my mind my 5 year old body would just fall straight through it. So the entire time we were in the air whoever was on that plane that day had to deal with two very distraught 5 year olds (megan and myself) crying their eyes out. So not the best experience to have with planes really but I'm hoping my what I'm going to call my first proper experience with a plane will be much better, there won't be any opening of the back of the plane and everything will be very smooth and hopefully less noisy than a Hercules plane!
In July something I'm slightly nervous about but also very excited about is that I'm taking part in the British Transplant Games. I can hear the laughter at me taking part or doing anything physically demanding but I always said I probably wouldn't do it but I kind of want to just do it even if it's only once, I want to be able to say I took part. I certainly don't ever expect to win any medals or anything but I think it will be fun and a laugh.
In August my boyfriend and I are planning a Europe trip where we will inter-rail around various different places and I am so excited about it. Hopefully it will mean I finally get to see Auschwitz which I know sounds so depressing and so many people ask me why that's one of the first places on my list to go see but if you know me my favourite history is World War Two and if I had actually been allowed to go to the university that I wanted to go to and got accepted to and do the topics that I wanted to do my dissertation would have been on the genocide of Jews [Fun Fact lol]. Unfortunately it didn't go that way for me and I ended up doing my degree through the Open Uni which I don't regret because if I had gone to my university of choice I probably would have ended up dropping out at some point because of how ill I got. Maybe now I can do some bits and pieces on the history I really wanted to learn :). But yes! It is something I am just so excited for and as long as I stay in good health all that will happening in the not very distant future.
Now even though I have had my transplant I'm never going to be one of those people that plans years into the future, I'm very happy just living in the here and now and enjoying what is happening at the moment, although that being said I am having to give a bit of leeway to that for three very special people. My sister and two of my best friends are all getting married next year; Gina in July, Bernice in September and Candice in November all of 2017 so as much as I don't want to be planning too far ahead at the moment the furthest I'm planning ahead is the 10th November 2017. I'm so excited that they've all asked me to be a part of their big days I get to be maid of honour for both of my best friends which is not something I had on my bucket list and I think that's because I probably thought no-one would really want me to be but also I never thought I'd get to see it or be here for that type of thing. Candice has obviously gone for the outlandish abroad wedding and we're all jetting off to Orlando next year and if we're all honest as excited as I am for the wedding part I'm just as excited about going to Harry Potter land. That is definitely where you will find me for the entire 10 days we're there :D lol!
As much as I'm talking about all the things I've done and all the things that I'm looking forward to doing there is one person who I wish could know about them and they just never will. It's the double edged sword when it comes to transplant, some-one has saved your life and that person will never ever know. I'm not religious so therefore I don't believe that people are looking down on us from heaven, I don't believe in an afterlife and that is a reason why I found it so hard pre transplant and certainly something that brings up my anxiety about death. It's hard to accept that this woman who selflessly said yes and saved me, she will never know. I may never know anything about this woman who she was, what she did and yet here I am walking and talking and living my life because I have 3 of her organs living on inside of me. It's a hard thing to process. I've always said I wouldn't be someone that would want to meet up with my donors family, I have a few reservations about that type of thing, but I do wish she could know and even though I've sent my donors family a letter I don't know if they've accepted it but I want them to know that I'm doing well and I'm trying to honour the gift I've been given in the best way that I can.
It's a weird day. It's the day I was given my life back but for this woman and her family she was ripped from them. I don't know the manner in which she died but in most transplant cases it's unexpected and I'm guessing that's the case here too. So for them it'll be a year that they've been without her. She could have been a mum, a sister, an aunty, a wife, I don't know but someone somewhere lost someone they loved a year ago and whilst I'm happy that I've had another year of life and going out and achieving things I've dreamt of for so long there will be a family somewhere mourning their year without the person they love.
It's certainly a weird day, you want to be happy but then you feel guilty because someone died to allow you to see this day and that's a weird and hard feeling and something I don't think I'll ever be able to get accustomed to.
Right, so, last week on Wednesday I went to Papworth because as we all know I was having a few issues with my Lung Function and it not being as high as it should be on my home machine. The utter relief I felt just being at Papworth was wonderful because I kind of just felt like I could stop worrying and that I was finally at the place that could sort me out and deal with whatever the problem was.
The main things were my X-Ray and my Lung Function test. My x-ray looked nice and clear but my Lung Function was down. Back in March my Lung Function had been at it's highest at 81% and last week it was 73%. 73% is still really good and I could have only have dreamt of a 73% lung function a year ago but it's still a 8% drop which means there is obviously something going on inside. So everyone put their little noggins together and it was decided that I should go on IV antibiotics so it was great that I didn't need a Bronchoscopy but this also meant they had to teach me how to mix and make up the IV's because they wanted me to do them from home. Honestly this isn't something that bothered me very much because I had been mixing up a very temperamental drug everyday for 2 years previous to my transplant anyway so a few IV's weren't going to be too difficult to learn.
As much as it doesn't bother me having to do them and I would much rather be doing them at home than stuck in hospital, I didn't realise how sick and tired they would make me feel. It's been a while since I've been on IV's and the last time was when I woke up from my transplant so I had so much other stuff going on at the time I probably didn't have time to notice those antibiotics. I'm on two different ones, one goes in 3 times a day and it's called Tazobactam and another called Azactam which I'm on twice a day. I can honestly say the Azactam is horrible it leaves a weird taste in my mouth for some reason even though I'm injecting it into my arm which is beyond strange and it is SO unbelievably painful going in. I managed not to cry last night doing it but before that lets just say I've cried a lot in the past week whilst doing these (feel sorry for my boyfriend he's the one who's had to deal with me lol.)
It's going to be okay though I only have to keep doing them till Saturday and then I can just look forward to Holiday which is next week now so that's my main focus and the thing getting me through. I just hope my line in my arm holds out till Saturday because I can't be dealing with hospitals or having to trek it back up to Papworth again lol.
I would say this is my first thing this year where I've been properly worried about my health and it's quite remarkable how easy it is to get complacent about your health and I'm not surprised about people who don't sign up to the donor register really because when you're in good health and everything is going well why are you going to think about dying. I've gotten complacent in the sense I got used to just doing tablets again so it's a bit of a shock to the system to be drawing up drugs again and having a line in again. I had a bath today and it was so uncomfortable my left arm was hanging out of the bath at some weird angle so I wouldn't get it wet and it just reminded me of "those" days when having a bath was just a horrendous experience. Luckily today it was merely uncomfortable and slightly annoying not energy sapping and exhausting whilst also being uncomfortable and annoying.
Irritatingly I rung my GP today to get my line taken out on Monday and frustratingly it's Bank Holiday Monday (and my Transplant anniversary) so instead I will be going to the Walk-in centre on Saturday to have my line taken out so maybe it's a blessing in disguise and the universe doesn't want me spending my anniversary in a GP surgery :-)
I'm going through a bit of a blip. A lung blip. You know the other day I said about my lung function being down? Well it's still down.
I went to the GP on Thursday and he listened to my chest and he said it actually sounds okay to him there was nothing that he could really hear that would suggest any reason for my lung function to be dropping the way that it is. The only thing that suggested a infection was the fact that I'm coughing up some phlegm so because of that he prescribed me some antibiotics and sent me on my way. I rang Papworth to just keep them in the loop and the nurse that I spoke to sounded more worried than before and decided that because it's my second lot of antibiotics in 4 weeks, my lung function being low and my GP not really hearing anything on my chest that it was best I come in on Wednesday. She thinks I'll need a Bronchoscopy to find out what's going on in there but if I'm lucky I could just get away with chest x-ray (Somehow I don't think so lol.)
I'm quite relieved if I'm honest because I've been a anxious wreck for the past few days and I'd rather go in now and them figure out what is going on and then I can go to Portugal free from worry. In my mind there are 3 possible outcomes:
1. It's a infection. Just a infection that maybe I'm just not on the right antibiotics for and once they do some samples they'll figure out exactly what it is and bish bash bosh it's sorted.
2. It's my acid reflux being a total arse.
3. Rejection. Which I absolutely hope it isn't.
I think people will probably think I'm overreacting but I don't know many transplant people that don't automatically think if something isn't quite right that it's rejection. As I've said before I've had a extremely smooth year and this is the first time I think I've genuinely been worried. When it was my neutrophils that didn't really worry me too much because I knew that could be fixed and we knew what was wrong. Right now I haven't got a clue what's going on, it's always the fear of not knowing that gets to me.
So I'm sure I will let you all know what happens and hopefully I'll just be letting you know I've been a massive worry wart for no reason :)
Hello my lovely lot. Long time no speak I guess...
So in classic Stacie fashion this is more of a life update not that there's too much to update you on but there you have it, you know I can ramble lol.
The past few weeks haven't been that eventful as they go, the past week I have been massively enjoying the weather we've been having and was lucky enough to escape to some beautiful coastal places up in Norfolk. I had to get used to putting sun cream on again, I honestly hate the stuff though it's so greasy and just makes you feel gross. I've been told I now have some colour on my face but I'm not burnt so at least I did it right and it was good practise for when I jet off to Portugal next month so at least I know I can deal with sun without getting burnt and coming back looking like a tomato.
I'm having a bit of a lung function issue at the moment which isn't great. When I had my lung infection my lung function dropped which is okay that happens and isn't unusual but It's been nearly 4 weeks since that the initial lung function drop and my lung function hasn't really come back up. I'm a bit worried about it because drop in lung function and persistent drop screams to me rejection and that's all that is going through my head at the moment. That being said I'm trying to be proactive about it Papworth have moved my clinic forward to May 31st so that gives me a few weeks to try and get it back up a bit. Also I'm still coughing a lot and have phlegm coming up so I'll be booking an appointment with my GP to see if she can hear anything on my chest because it could just be that the infection never completely cleared in which case we just need to hopefully have another whack with the antibiotics. The good thing though is whatever it is Papworth can have a look at me on the 31st and just make sure I'm okay to head off to Portugal on the 3rd.
I think once I've seen my GP I'll be more calm about the whole situation because I do personally think the infection just never properly cleared. I'm trying to get back into being really good with my exercise as well. I feel Like I definitely have become complacent with it because my weight is at a nice stable place so I don't really have a need to be doing tonnes of exercise to shift some pounds but then it's not great for the little organs. I just need to find the motivation again to keep at the exercise. I think the fact that I'm more easily out of breathe at the moment doesn't really help with that because my whole life being out of breathe is bad, you stop what you're doing and get your breathe back and then you carry on. It's hard for me to get past that kind of mentality that I've had for so long and even though I'm 11 and half month post transplant now it's definitely still there for me.
It's all good though and I'll get my lung function back up where it needs to be and Papworth don't seem overly concerned enough that they want me there as soon as possible so that puts my mind at ease also.
It's all very exciting though at the moment because in 19 days it will be 1 year since my transplant and that is mind blowing and a massive milestone that I wanted to reach and then in 23 days I'm off to Portugal which is just as exciting because it will be my first ever holiday. My first ever plane ride (Proper plane ride we don't count when I was a baby or when I was 5 on a RAF plane lol). I'm being so annoying about it, I'm constantly asking a billion questions about fluid limits, weight limits, my drugs, what's out there etc. etc. literally I'm just asking about everything. It's the way I get through things I like to know everything so I can be prepared for any and all eventualities. I know it's annoying though but it worked for my transplant so I figure it'll work for all the other aspects of my life too. It will be very interesting to see how I am on a plane though I'm not sure how it'll go especially with how anxious I get but I'm still excited about it, even the plane bit, it's something I've always wanted to do and now I'm finally getting to do it :-D
I'm in my 20's and after waiting 3 years,
I underwent a heart and double lung transplant because I suffered from a illness called Pulmonary Hypertension.
This blog is where I documented that journey and will continue to document all the amazing highs and the lows post-transplant. I hope to continue to raise awareness for both PH and organ donation and I would love for you to continue to share this journey with me.