It was weird reading back on them, my first ever blog post makes me cringe beyond belief and I can't actually get through it, first year I was in hospital recovering from septicaemia which we can all agree was just "super fun," second year I remember being quite good and I was all reflective and I remember remembering all the amazing things that had happened that year because that was the year that both Kath and Bernice had got their transplants so even though I was still waiting I was still so happy that I had managed to be here for those. Third year being last year was amazing I had obviously just had my transplant and everything was just perfect.
So this year is still amazing but I am entering my fifth year of blogging with a bit of worry in my mind. This whole year has been one of the absolute best of my entire life I got my transplant and I have thrived since it I finally got to know what it's like to be able to breathe and although that is currently an issue I know I will one day get that back (she says hopefully). I met my boyfriend this year and although we aren't all facebooky and I don't blog about him he is one of the best things to have happened to me and has made this year just so amazing and long may that continue.
I've gotten to see my little humans grow and become little people Skyler now has a little personality and just is the cutest little madam, Spencer has warmed to me so much over this past year. Previously he never seemed to really know how to approach me and he didn't like it when I had my oxygen on and he didn't like my line in my chest so he always sort of kept his distance from me and now he's much better with me and seems to like me much more now. He still doesn't like it when I have lines in me so when I came home with my line in my arm for my IV's he had to make sure that it was coming out I was going to be "better" he had to be reassured that it wasn't going to be staying there forever. Then Jaydon is like an actual proper person now and he spells and reads and he'll be in year 1 in September which just boggles my mind and I can't believe I've actually been here to see it all. Then Megan obviously had Jenson this year and I'll hopefully get to see him develop into a little person too.
I've been on so many little trips this year which has been really lovely because it's just something I had never been able to do before and being able to do them and experience them has been so, so lovely and I obviously got to go on my first ever holiday! A major milestone for me which was just so amazing and I will never be able to fully express how grateful I am for that experience.
I'm kind of sad that I'm entering my fifth year with a bit of worry because I really would just love to be as excited as I was last year. I mean I am still really excited about what this year has in store for me but I'm going into it with a bit of worry and uncertainty about how well physically I'm going to be to be able to enjoy it. This year I have so many things planned already, I have the transplant games next week which I will enjoy even in my current state, then I have my Europe trip in August going through to September, I've got my graduation on the 17th of September, then Bernice's Hen Do and her wedding and that's not including all the little things between time so no matter what my health at least I've got lots of plans.
I have my Papworth appointment tomorrow, so I'm going in for a Biopsy and Bronchoscopy tomorrow and we'll see if they find anything. I'm going knowing that my lung function is either going to be around the same or worse than it was 3 weeks ago which is okay because I've just kind of accepted that for the moment things are just bad in that area right now and even with all the work I've been putting in to try and make it better it just isn't really doing anything but the good thing is by still doing the work I'm keeping my strength up and i'm not getting weaker which for me is the main thing at the moment. If I wasn't able to do anything and I was getting weaker I would be extremely worried but at least for the moment that is not case and Papworth will figure it all out I'm sure. Then I'm staying at Papworth till Thursday as I have my PH studies on the Wednesday which is where they stick a probe or tube or whatever up my nose and down into my stomach and it takes readings for 24 hours on my acid reflux and what my stomach is getting up to. If you remember we tried it back in December at Reading hospital because of Papworth's waiting list but it went kind of wrong and it had to be stopped so now we're doing it at Papworth after a very long 7month wait and hopefully this time it will be successful :). I'm really worried about these appointments to be honest with you and I don't think this worry is going anywhere for a while but I'm just going to look forward to after they are over and I get to go chill out in Norwich and then go to Liverpool for the games which I'm quite excited about :) and I'm going to get more sewing done as well.
So guys think happy lung thoughts for me for tomorrow and just hope that my lung function stays the same or is better :)
Things are... hard. They're quite hard at the moment. I'm not going to lie to you guys because that defeats the purpose of my blog and the very reason I set it up in the first place those many, many moons ago. This is my safe place, where I get it all out to you guys, I spill my guts and tell you what I'm feeling and you know unfortunately a lot of the time that is when things aren't going that fabulously and they just aren't at the moment. It's really nice to still have this place to come to because sometimes I want to say how worried I am and how scared my current predicament is making me but I don't want to repeat it to people and worry them so if I can get it out here that can help I hope.
So for the moment I'm describing myself as stable which is what I think I am, my lung function on my home machine is still not great and isn't really making it's way upwards but it's not going downwards either so I'm not going to say I'm happy but I'm satisfied with it. I'm generally out of breathe a lot at the moment or more specifically when moving and my lungs are in a fair bit of pain at the moment also and I'm trying to work on my exercise but it is seriously hard work, harder than I thought it was going to be. I'm physically exhausted at the moment. I'm barely managing 5,000 steps a day, I managed 2.5 miles on my bike today which I was chuffed with but I need to really be pushing it further and my lungs just don't seem to want to let me do that, it's like a massive wall has just been temporarily placed in my chest and it's all under a bit of maintenance at the moment.
My anxiety seems to have come back with a grizzly vengeance. I'm finding it difficult when I'm outside and it makes me extremely anxious. I went out the other day because I had a few errands to run, I needed my prescription and I wanted to get some fabric as well and just walking around in my local town I felt so insulated and my breathing was just so awful, I felt like people were watching me and because I had to keep stopping as well I felt panicked because my breathing was just terrible and it was just a horrible reminder of my pre-transplant days. I felt like I had made so much progress with my anxiety over the past year it was like it wasn't really there at all. I'm a generally anxious person, social things that I've never done before make me anxious, travel makes me anxious, meeting new people, hospital appointments but they're all little life things that you get over but this blip has just heightened it all and it feels crap to be honest.
I'm finding things to keep me calm though. I'm not sure if I've told you yet but I've started sewing again. I used to be really good at it back in my tweeny bopper days, I'm starting simply and just making cushions, I'm currently making a bunch of cushions out of someones kindly donated clothes and it is the most relaxing thing ever! I love unpicking things! Don't ask me why but just the kind of repetitive motion of unpicking stitches is so relaxing. Maybe I'll do a post one day on some of the stuff I've made. When I went to the fabric shop the other day though that was super relaxing I was in there for about an hour and a half just looking around and I think I may have found another little safe place for me to be and retreat to if I need to. I did come out of there £70 poorer though so maybe it's not that safe really lol!!!
I think the things I'm also finding hard at the moment as well are just the side affects of my drugs the steroids are making my face break out which is just not ideal and I certainly don't appreciate it very much, I have so many bruises everywhere, my shakes are horrendous, my hair is falling out like nothing on this earth and I just feel like everything is just building up into a ball and rebelling against me right now. I just really hope it starts to get easier. It's hard when for the past year it's been the best thing ever and everything's been, well not easy, but it was amazing compared to before and now I'm just have to fight and claw that back and it's difficult.
In all honestly I think a few people have been waiting for this happen to me, I had such a smooth road initially well now it's happened which is good in some ways it makes me continue to appreciate what a precious thing it is that I've been given. So I will continue to try and claw back what I had :-).
So there might be a few more posts than normal just while I'm adjusting and getting used to things again and working through my obvious anxiety issues and I hope that's okay and I'm happy that I still have this place to come to when I need it, it will always be my ultimate safe place :)
Soooo we know how I'm kind of recovering and trying to be you know resting and relaxing whilst also trying to build up strength? And you know how I wanted to start off fairly slowly and just build it up gradually? Yeah well The opportunity to go to Wimbledon again this year cropped up and I mean who am I to say no? I'm only a girl who absolutely loves Wimbledon more than another sporting event on the planet, right?
It was People's Sunday! For those of you unaware when it comes to Wimbledon the first Sunday of the tournament is the tennis players rest day they don't normally play any tennis on it, however this year they've had a fair bit of rain and therefore the matches have run behind and they weren't where they needed to coming in for the second week of Wimbledon. Maybe not fab for them or their tennis players but totally amazing for those of us able to get tickets for their catch up Sunday! It's literally the 4th time in Wimbledon history that they've had to do it and Mark was absolutely amazing and managed to get us tickets!
Admittedly I was extremely anxious saying yes to going because I wasn't sure how I or my lungs were going to cope with it. Last year I was running off of initial post transplant adrenaline and this year I was going with a depleted lung function and a body that aches like nothing I've felt for a while. I'm also an anxious traveller as well and getting trains and tubes by myself was a challenge that I'm not used to but I'm actually super proud of myself for doing it because it reminds me that stuff like that isn't as scary as I build it up in my head to be but I'm fine as long as I have a plan and know what I'm doing. If things had started going a bit tits up I'm not sure how well I would have done in that situation but everything was great for me yesterday and I feel like that's a little hurdle that I can say I safely crossed :)
This years experience was different to last years and I'm so chuffed I've been able to experience it in such different ways. Last year we did the whole VIP thing which was lovely and we got to experience the whole behind the scenes thing which was amazing but because we had to do the whole schmoozing thing last year we didn't see as much tennis as we would have liked. This year I saw like 5 games!!! Which was really cool! My favourite was the doubles match that we managed to sneak into and watch, doubles is actually super interesting and I'm really chuffed we managed to see that one. This year I even managed to get into the Wimbledon Shop and I've brought little bits to go in my scrap book like a bookmark and headband and I brought postcards. I'm so excited about it all. Completely and totally extortionate mind and I paid £15 for postcards! But I couldn't help myself.
It was decided that if we manage to go next year a picnic is an absolutely MUST! I literally ate some strawberries and that was it yesterday and therefore had to devour a McDonalds when I got home LOL. I really wish my lungs had been on better form being there but I still had such an amazing time and a little bit of a blip health wise was not going to stop me for a second. I honestly don't and won't ever take what I'm able to do now for granted I feel so absolutely honoured that I was able to go again this year and I will never take the people in my life that enable these things to happen for granted either. I realise how insanely lucky I am and I feel like for the rest of my life I will forever be saying thank-you but I am so thankful everyday even when things are a little bit hard.
I feel like this time last year I had taken this massive leap forward of about 1000 steps lets say. I had, had my transplant, I was breathing like I don't think I'd ever been able to I was walking and exercising like I'd never before and I just felt amazing. Today? Well I've been released from hospital and I feel like I've taken about 950 steps backwards certainly not where I started but definitely not where I was. I feel like I'm back at square 2.
So Year Two of transplant got off to an amazing start I got to go on holiday, my first ever holiday and although there were the beginning signs of some issues it didn't affect the holiday at all and it was everything I could have ever wanted it to be. Things just started to go downhill when we got back and have gradually gotten worse. I've now lost about 35% of my lung function which maybe doesn't sound too bad when you're starting off with 100%, but I wasn't, I was starting off with 81% lung function so you know do the math :-/ My current lung function is still far more than I ever had pre transplant and I am so grateful for that but it is scary to be in a position where I wasn't getting out of breathe walking or it wasn't noticeable to now having to stop again and catch my breathe and any extended length of activity makes me out of breathe again. It's a reminder I definitely didn't want this soon after my transplant.
So since my last blog post I went to Papworth where they told me come back in a week and have a Biopsy, Bronchoscopy and CT scan. I came and I had them, I had a bit of a reaction to the sedation as they gave me more than I normally have and I don't react too well to too much anaesthetic so you know throwing up ensued and anti sickness medicine had to be implemented. We found out the results of everything and it was a bit confusing if I'm honest and just a bit ambiguous. I like to have definite answers and that's not what I got. My CT scan seemed fine there were some changes on it but nothing that worried them, the bronchoscopy revealed very little infection in my lungs and anything there was they gave a nice clear out and my biopsies didn't really show very much. There was some scar tissue and some inflammation which could be caused by a number of things. They didn't get any definite rejection signs but that could still cause the inflammation and scarring but then so could infection and possibly my acid reflux. So it was decided to air on the side of caution and and give me 3 days of Methyl Prednisone which is the initial treatment for rejection just in case which I was more than happy with.
I got discharged this morning and now I really have to start doing some work, I've got to get back on the bike and get back to walking like I did in those initial days post-transplant. I'm hoping by doing that we can get my lung function back up a little bit and then when I have my biopsy and bronchoscopy on the 19th things will look like they have improved. I then have my PH studies on the 20th of July which will hopefully shed a little bit of light on why my lung function is dropping.
It's certainly hard sometimes because some people believe that transplant is this massive cure and it is in some respects and for the past year it certainly has been that for me but they forget that it's still a medical condition that has to be managed and will go wrong sometimes and I'm currently having a bit of a blip, I've gone from walking intently and being able to do loads, to being breathless and a bit useless again but determination will win out and I will get back up again (fingers crossed.) I am worried and I think that's normal and okay right now but I feel like everything is being done to try and find out what is going on with me. I'm remaining positive and believe it's something that is recoverable, I just need to remind myself to stay in that positive state :)
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.