Hello my fabulous humans.
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.
Life is amazing!
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 :)