Okay so the weekend just gone saw the appearance of "productive Stacie" now she rarely makes much of a appearance nowadays but she did and boy did I get shit done! It was wonderful to actually feel like I got stuff done and now I feel very much 'Tidy room, tidy mind" it's quite lovely. However Monday hit and well lets just say my bed and I have been seeing a lot of one another lol and that does not seem to have let up.
So by way of just procrastination I suppose I thought I would write a blogpost. Now this isn't meant to be depressing just to put it out there but I fear the information that I share may possibly come across as depressing or sad or maybe upsetting, for some anyway, if you don't really know me you could probably care less lol. So what I'm going to do is try to explain all my current options and what my CT scan means for me in March because I feel like I have alluded to things but I've never gone into the detail that I and my family receive because sometimes it's even hard for me to absorb and relay that type of information to you guys, but I'm going to attempt to so you can understand the situation better and more entirely.
So lets start with the "The Ball." This nasty ball of Aspergillus now when I told everyone about this ball/cavity of aspergillus that I have I got a lot of transplant people say to me, "Oh that's fine I had that when I had my transplant," "Oh that's treatable, they'll get rid of it." All completely understandable responses which I totally get, now to explain it in my situation this ball is located extremely close to top of my left lung just under my collar bone. There's the ball which is extremely hard to penetrate with drugs as there's no direct blood supply into the centre to hit the infection, there's that problem first off, secondly it is very close to the surface of the lung so that makes it very easy to penetrate or tear within a surgery which is more than likely as transplanted lungs tend to stick more to ribcages and therefore make them harder to remove. Now thirdly there is residual aspergillum floating around the outside of the Ball which is what we are the MOST worried about it is the stuff closest the surface and the stuff that would do the most harm if it got out in surgery. That is what all this waiting is for we need that gone then we can deal with the rest. Essentially what I have been told is that unless that is gone there is NO option to do transplant because if that got out during transplant I would be dead maybe not immediately but NO-ONE has ever survived having Aspergillus in their chest cavity it just hasn't happened, there's no blood supply in your chest cavity to be able to get rid of it, you just die, that is it. So that's the vitally important bit.
So now that I've explained that as fully as I think I can what does that mean in regards to my options and the way we move forwards?
The first kind of "option/scenario," and I'm not going to describe any of these as the best or worst because they're equally as confusing and difficult to contemplate, The Aspergillus goes away and both the consultants and the surgeons are happy to re-list me. Albeit this is still under the understanding that I would still be partaking in a extremely risky transplant operation that has only ever been performed twice in the world.
Next would be that the CT scan shows the Aspergillus receding and improving but not enough that they feel safe so we would therefore wait probably another 6 weeks and then rescan then to see if there was any more improvement.
Now is when we get into icky life ending talk but the next options would be that there's no improvement at all. In this scenario I would demand that we carry on and wait and see because as they have previously explained Aspergillus can take at least 4 months to clear up so I personally would demand at least that amount of time to see if it was just a late bloomer lol. Now if ultimately it ends up being that there is no improvement whatsoever and we just cannot shift it at all that's when they say no transplant, they just won't do it and won't risk lungs in me as it would be a waste ultimately or potentially. This is sad but it is a reality and one I have to potentially deal with.
If it ends up that they ultimately say no to transplant it will then be discussions about how we can prolong my life for as long as we can with the best quality we can. I'm trying to view this option not as a death sentence but as me having to live with a chronic illness. With this option it means I can up meds that I currently can't but would improve pain and inflammation and we would come up with plans to be able to keep my lung function stable and from me getting ill and just trying to keep me at this level for as long as we can which who knows could be years if we got everything right. It would just be about living life as well and not allowing it to get to me. I refuse to accept death as a forgone conclusion in this situation.
I think they're all the options I have at the moment really. Like I said I don't particularly have a "best" one I personally would like the Aspergillus to do one and for me to have the chance to have another transplant because I firstly think I'm strong enough and I know I can do it but also a bit selfishly I suppose if I am going to die I would much rather die quickly unaware in a operation than slowly and painfully completely aware of every last breathe I took. The idea of that just makes my heart sink. So a tad selfish on my part I suppose.
I hope this helps some of you who've had questions for me, or who've maybe read some blogs and not been able to totally piece it together totally. I feel like this cohesively explains the whole Aspergillus situation a bit. I'm not sure I will ever be able to explain the whole Chronic Rejection situation to you guys because I'm not sure I'll ever really know either it's just something that happened and I just have to deal with it the best way I can :-)
Like anyone in my situation or in a similar situation to myself I have over the years wondered "Why me?" Why am I the one who got chosen to be this strong, to have to deal with all of this? The thing is I still think that probably everyday but not in a bad way, not in a way that gets me down or upset, just in a way that I wish things could have been different. I've been so happy the past few weeks and I just don't have the drive to be upset about my situation at the moment, I'm surrounded by so many people who love me and want to make everything that I'm doing fun and fulfilling and so full of joy. I'm looking around at my life and thinking "How is it that I got this lucky?"
On Sunday (5th Feb) the Boyfriend asked if I'd mind going to London with him and his friend who had a "Tinder Date," the idea being that we'd go and just be there in the area should the date be a dud or a murderer or whatever. He even suggested going to The Tate because I've been dying to go there (excuse the pun lol.) I was bit tired and kind of wishing to stay in bed but I was excited about our friend having a date and thought hey it'll be a nice chance to do a impromptu trip that we haven't planned and see how we do.
We did the tubes and that actually all went so smoothly and we ended up on the Southbank and both Mark and Rachel needed the loo and there was this pub with lots of stairs. M and R start making a tonne of fuss about these stairs and I'm just sat in my chair thinking "What the hell are they making such a fuss about these stairs for? Just leave me up here and go for the bloody loo" and that's when things started to tick in my brain M was talking to someone as if he knew them and then people who I KNEW were popping their heads around corners. Apparently this was a surprise for me. A tonne of my friends had turned up in London for the afternoon to surprise me and just have a lovely get together for me. The plan was to go up in the OXO tower and have a beautiful Afternoon tea with all my lovely friends.
It was such a lovely surprise and a surprise it was because I didn't have a freaking clue! How am I that gullible of a person?! It was so lovely because I have a lot of friends from different aspects of my life and a lot of the time they just don't cross over so all of them mean so much to me and they all know of each other but they just never get the opportunity to meet and this was just so fantastic that they got to.
I don't know what I did to deserve such an amazing set of friends or an amazing boyfriend who would organise it for me but people often wonder how I stay so positive in such a awful situation and it's my people. My people, I am who I am because of all of them they all make me the happy positive person that I am and I am so utterly grateful to have them in my life.
During my first wait for my Transplant we figured something out, what was it? Well we figured out that I couldn't just be waiting for this "thing" that possibly may never happen. It's simple and maybe not quite the revelation it really is but I think anyone in the position of waiting for a organ will tell you how hard it is to just carry on sometimes and the idea of planning things and doing things is very hard in that position especially when something that you've planned potentially gets cancelled last minute and soul destroying that can be. This is what we did though we planned things, we went places, brought tickets for things even if they were months away because it gave me something to look forward to and kept me excited for life.
This time is a little more difficult a lot of things that we've had planned in the past 6 months got cancelled lots of money lost but we are working our way round it and it's not stopping us. Things are having to be planned very close to the event so when we know I'm okay and there's not enough time for me to get ill and we know it's unlikely that Papworth will keep me in. Also whilst I am off the list waiting for this scan it's a good time to get out and about because we have no time restraints with regards to distance or anything like that, so we just do a lot of preplanning and then everything runs as smoothly as possible and is as stress free as we can get it.
Mark and I were very kindly offered by the lovely General Manager (Sandeep Bhalla) of "The Berkeley" Hotel in London, two complimentary nights stay at their hotel. Now I was just the most excited I could possibly ever be about a hotel, even I know how lovely The Berkeley is! We were all booked in to stay from the 29th to the 31st, I had a clinic appointment on the 26th and I was praying to any god who was listening that Papworth wouldn't keep me in and thankfully they didn't!! We were all set for our little London getaway. Now we weren't going to London to just stay in a hotel although I certainly could have just spent all my time in there. We were actually going to go see the "Cirque du Soliel" and the Natural History Museum which I have been dying to see for so long.
Now travelling as a disabled person is hard, firstly the fact I'm referring to myself as a disabled person is difficult for me but I have had to resign myself to the fact that that is really what I am now but that's okay that's personal growth, I can't really carry more than a small handbag nowadays so who ever I'm travelling with has to do the heavy lifting and they aren't always too keen to pile it on top of me. So we took; 2 kind if duffle sized bags like weekend sized bags, a oxygen tank, my handbag and then obviously the wheelchair, might not sound like a lot but Mark had to carry all that and then push me as well! We got ourselves organised though and Mark had planned the travel down to a T, getting to London was going to be a bit more difficult that coming back because we were travelling on a Sunday and they were doing works on the lines so getting there involved a taxis, a train, a bus, a set of stairs to get down, a train, a escalator, and then another taxis. We did it though and it wasn't stressful at all because we knew what were expecting. We ordered a Uber from the station to our hotel and we got the loveliest Somalian man drive us he'd previously been in banking or something and decided he just didn't want to be chasing money and that wasn't going to make him happy, he just had the best attitude towards life and just had such a positive glow about him it made me really happy.
Once at the hotel I was in awe! It was beautiful the staff were so lovely! I know that staff are paid to be lovely but that doesn't always mean they are good at it but they were all just so amazing and kind to us because we clearly weren't their normal rich clientele, they just made us feel so welcome! We were given a lovely room with the biggest and most comfortable bed I have ever slept on in my life, I'm now on a mission to find their pillows! lol. By that time I had just enough time to do my nebuliser and physio (because that party never stops lol!) before we had to head to the Royal Albert Hall.
The Royal Albert Hall was lovely and surprisingly quite wheelchair friendly which I wasn't expecting because of how old the building is. The show was beyond anything I had expected, what those people can do with just their bodies is incredible! I personally was particularly impressed with the girls who did the rope stuff but that doesn't take away from what all the others did because they were all amazing. I would certainly go and see another if I got the chance to.
Monday saw me devour the most amazing American pancakes ever for breakfast!!! I don't know if it was because we were in a hotel and how posh it was but I mean seriously those pancakes were incredible! The staff at breakfast though were just so attentive, no sooner had I finished my tea there would be someone filling it up to make sure I wasn't out of any, everyone always so eager to make sure everything is okay. Although I'm not used to that kind of thing it was lovely! Now this day was a very, very long one. We went to the Natural history museum which I have been saying for years I've wanted to go to and I'm really pleased we went I just wish there hadn't been so many children around but I suppose if we had gone later in the day that probably would have been the case. I really enjoyed it though a lot of it was really interesting. We spur of the moment though decided to go the The V&A museum which is pretty much next door and I actually enjoyed this one more than I did the natural history museum which surprised me but I just had more fun learning about stuff in there. Especially the fashion section, seeing it grow through the times and change and evolve and come back again, really really good.
Then we went shopping!!!! We went to Harrods and did a bit of a mooch around, I brought a Charlotte Tilbury eye pencil which I have fallen in love with! We brought my mum a present and we also brought me a underwear set. I haven't brought a "set" for a very long time, I haven't been wearing bras at all and it has quite genuinely upset me not being able to wear a nice underwear set, I've always liked to. The one we found though is so perfect and doesn't feel constricting on my chest because instead if a underwire its just a thick soft elastic band that is giving and I love it!
Tuesday was our last day but our train wasn't till 4 and checkout wasn't till 12 so we had a little time. I said my sad farewell to the bed which I shall miss with all my achey muscles and we decided to do a bit of a touristy few hours. We visited the Queen, Downing Street, Parliament and Big Ben, the London eye all that lovely stuff and then got on the tube back. Now on the way back we thought we were going to end up on a particular side of a station which would have had a escalator we could get on but oh no, not us, we ended up on the side with several flights of stairs lol. we decided the only way to go was to just take the stairs bit by bit and then we'd get up them eventually but then out of no where these 4 absolutely lovely Eastern European lads offered to carry me up and before I knew it I was in the air being carried up the stairs like some princess on a flying carpet! It was so fun!
The rest of the trip went really smoothly we ended up in first class on the way home with the loveliest trolley lady who gave us stuff for free and quite simply I couldn't have had a better trip if we had tried.
I honestly don't know what to say about the kindness of Mr Sandeep Bhalla by allowing us to stay in his hotel he made our trip even more amazing, if I had ended up having a sick day whilst we had been there I just know I would have been fine in their hotel, it wasn't just a bed to stay in for a few nights, it was a lovely place to stay and enjoy and relax in and had I needed anything they would have been more than happy to help. That in itself took away so many of my stresses about travelling and being a way. They even gave us a gift! I felt so spoilt and just wow the whole 2 days. If I ever can I will certainly go back there!
Now not all trips are going to be like this one or quite as lavish but now is the time for me to be doing things whilst I can and I can still enjoy it, planning things that may not happen but still keep me excited for life because nothing is so important that it can't be re-planned.
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.