So it's been a week since I got back from holiday and I'm reminiscing about being away, I've had photos printed and I have all the stuff I collected whilst we were out there and I've got a scrap book that I'm super looking forward to getting done. I wanted to have a really pretty scrap book that I could record all my foreign adventures in and maybe if I go on a long holiday in the UK as well. I've officially started sewing again and I've made some super cute bunting just to start off easy and I'll make a cushion soon and all that type of stuff. I'm super excited to get into it :).
Being back though also means I now have to think of the stuff I was ignoring whilst I was away. My Lung Function still isn't where it needs to be and is gradually going down, not in a dramatic way thankfully but enough that I'm a little worried about it, I've managed to keep it stable for the past few days which is encouraging though. I think there's a number of contributing factors though like the weather when we got back definitely did not help it was very muggy and breathing in it was horrid so I think it just took some time for my lungs to get used to that, also I've not been the most active lately so I'm trying to get that back up which I've been doing quite well with the past few days. The biggest factor I think is my acid reflux which at night time I have been coughing a lot whilst lying down and there has been a lot of acid coming up my throat. So I'm trying to implement a few things to make that better like: not eating past a certain time, acid reflux friendly foods, sleeping more upright, those type of things.
Admittedly it might be none of these things causing my lung function drop, but it's helping me mentally to be a bit proactive about it because if I do nothing it'll just keep going down and I know rejection is always a factor but it's one I'd rather stick to the back of mind and I'm happy to just think it's the other things. I'm seeing Papworth on Wednesday so all of this will be discussed and I'm sure if they are worried they'll tell me and want to do something. I'm feeling positive that it's something that's easily fixed though as I don't feel ill at all just a bit more out breathe than I have been in a while. I have my PH Studies in July as well so if it is my acid reflux they can diagnose that and then we can fix it with a little operation which I always expected I would need at some point because the Flolan that I was on pre transplant commonly ruins peoples oesophagus's and I had bad acid reflux before my transplant anyway it just wasn't something we could do anything about because I couldn't be put under any anaesthetic to have any procedures and it wasn't massively affecting me at the time so there was no need to risk it :)
It's weird that whilst I was away I managed to easily ignore all my little worries and now I'm back they're kind of my main focus, I'm happy that I don't feel ill though and I've still got lots of exciting things coming up that I'm getting excited about so it's not stopping me from planning things we just meed to pin point the issue and then deal with it :)
I hope you are all well and happy wherever you are and I will make sure I keep you in the loop :)
I had the most amazing first holiday! I'm not sure what exactly I expected, I think I went with very few expectations because I didn't want to make it bigger than it was. I think the main thing I wanted was for it not to be an unbearable heat which is something I was worried about and that I wouldn't be able to cope in their weather. The few expectations I did have were surpassed a million times over though and I loved almost every moment of it.
Firstly we have discovered that I am a nervous flyer, or more specifically a nervous airport person. We all know I'm an anxious person anyway but I just seemed to have a knot of anxiety in my stomach and chest through the whole airport experience. I'm not entirely sure why but I really don't like the security part of it, I can't really explain it but I felt so nervous going through it like they were going to tell me off or tell me I wasn't allowed through or something. Once that was done though I seem to gain my composure again until it was flight time. As I told you I haven't been on a plane in over 20 years and even my last plane experience was a somewhat unusual plane experience and not a normal one really. I guess my first experience was a really good one the flight was smooth and from what I've been told it was as good a flight as I could get for my first one, I did feel claustrophobic it's a very small space for the amount of people in my mind and I wasn't a massive fan of the up and down sensations. I'm sure it's something you get used to the more you do it but for me it just felt very strange but whilst we were in the air it was completely fine and lovely. Something awesome that did happen on our plane out there was that a pilot, twitter friend of mine got in contact with the captain of the plane we were on and we got to go into the cockpit bit of the plane and talk to them and it was lovely. I'm not entirely sure how pilots spend their time in such a small space but that's coming from me who gets claustrophobic from clouds (don't ask, sometimes they just feel too close lol).
I was an extremely lucky girl we stayed at a beautiful hotel called The Belmar Spa and Beach Resort which was just so nice, we had an apartment which was so great for us because it meant we could also go to the Supermarket and buy in some food as well rather than eating out everyday. We had a lovely little balcony that looked over one of their pools that looked out to the sea. It was all very idilic. The Hotel was also about 200metres from the beach which was just fantastic.
I think what I liked most is that we managed to relax whilst also still managing to do a bit of tourist stuff as well. One particular tourist thing we did do was Ponta Da Piedade which was a quite steep hill (mountain to me lol) that had these stoney steps all the way down and at the bottom you could get on a little boat and take a tour around all these little coves and rocks and the surrounding beaches of the area. It was so, so lovely. It was a really lovely thing to be able to do and before my transplant I wouldn't have even contemplated going down that hill knowing I would have to get back up it. I very nearly didn't due to a combination of reasons (motion sickness, over heating, lack of food etc.) but I did eventually get back up it with a lot of encouragement and persistence from Mark.
It was lovely to do evening walks on the beach when it had cooled down a bit we went to a place called Camilo beach which was also down a lot of stairs but that time I managed to get up them much more easily than at Ponta Da Piedade. I tired Swordfish for the first time and I actually really loved it, I'm a generally fussy eater or I stick to what I know and it was nice to be able to try something different, I like fish generally I was just worried that I would get fish with heads on which I knew I definitely did not want! lol.
I even went in the pool and kind of tried to swim sort of. I still most definitely cannot swim but we tried to teach me a little and then I got my little blow up ring and that made been in the pool even better :-D I now also understand what people have been saying to me all these years about heat abroad being different to the heat here. Whilst I was out there I was able to sit out in the sun and it wasn't an overbearing heat it was a lovely warming heat that didn't feel like it was trying to suffocate you. When we landed back in the UK it was 24 degrees so 7 degrees cooler than where we had just been yet I felt like I had just entered an oven, it was horrendous!
It was a lovely way to celebrate me being one year post transplant and I feel so very, very lucky that I got to go out there and experience such a lovely and beautiful place. Of course though I'm so grateful to Mark for taking me it was such a wonderful thing to do and experience with him but also I'm still so grateful to my donor because without her I know I wouldn't have been here to be able to walk or breathe let alone go on holiday and I will be forever grateful to her and her family.
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.