I'm still not quite adjusting to this whole chronic rejection thing as much as I would like. I think that's because I don't want to be ill again so I'm rejecting the idea of it, I know people don't want to be ill but I think mentally I'm just actively rejecting the idea that I'm this poorly again like my mind just won't accept it if that makes sense. I'm literally viewing this whole process like we've just pressed pause for a little bit in the "Well" part of my life I'm just needing a few touch ups before we can press play again. I'm really trying to be positive and hope I don't have a really long wait like last time because quite honestly I'm petrified that this could last any longer than 6 months, I don't ever want to end up at a point where I'm spending more of my life in hospital than I am out of it, that has never been a point I have ever wanted to get to and I certainly made sure I didn't get to that point the first time round. The problem is I know it's different this time round and that is always going to be a possibility for me this time.
I don't know if I ever said before but because it was both my heart and lungs that were both failing at the same time, they kind of had this nice balancing act going on which gave both me and my doctors reassurance it's what gave me the time I needed to wait for my transplant, there was always going to be warning if my organs were going to go into a downward spiral last time. That's gone this time I don't have my little safety net this time, that's scary.
I'm a little more worried at the moment because I'm a bit ill at the moment. We've been trying to get my steroid dose down for when I get my second transplant but every time we try to bring it down the inflammation in my lungs flares up again and then my breathing goes to pot and then it takes another 4 to 5 days to get it back up to where is was because we just have to up the steroids again. It's really frustrating because I'm spending a lot of my time just going from feeling ok to then feeling like crap again and having to rebuild myself up again and readjusting back on a higher dose of steroids which makes me so edgy and basically a moody cow who finds even the littlest things annoying. Then with all this steroid dose changing I've gone and got myself a lovely case of viral ulcers and oral thrush which as you can imagine is the funnest thing ever! LOL. We've managed to get a handle on the ulcers, although some are still lingering, with just Nystatin but the oral thrush has been a persistent bugger and decided to create inflammation around my vocal chords. Also once again not sure if I've mentioned it before but I have a lazy left vocal chord or vocal chord paralysis which is a result of many years of tubes being put down my throat. So currently the inflammation in my throat is making me sound like a squeaky toy. I sound funny to start with and add in this I just sound ridiculous. It's also extremely draining for me when I talk because it's requiring a lot more energy to speak with this. I literally just want to stay in bed all day at the moment and sleep till it's gone. One of my surgeons decided to describe my normal voice as fruity the other week so I'm not sure what he'd consider it now LOL!
They do say that once the inflammation around vocal chords is gone it should help with my breathing even if just a little bit which I'm looking forward to. At the moment everything is just baby steps you know? Getting changed is an achievement, having a bath is a achievement, doing a bit of sewing is something, getting out of the house for an hour or two is good. I'm trying to get all the little things sorted this week though because next week is super busy; I have Papworth, Bernice's hen do weekend and then I'm off to London with the boyfriend for a few days to do lots of exciting things and I am absolutely determined that I'm going to enjoy every second of all of it! So by next week my breathing will back at a okay bearable level and my throat will be sorted.... we hope... fingers crossed ;-)
I hope you're all having fun whatever you're doing :)
Hi guys!! So ths morning a blogger friend of mine messaged me to let me know that Cosmo have brought back their blogger awards by a new name "Cosmopolitan influencer awards" which I actually think soumds really good. I debated whether I should do this post because I was shortlisted for Best Lifestyle blog back in 2013 and 2014 and I got to attend two amazing parties which I enjoyed a lot. The thing is that was in the thick of waiting for my Heart and Double Lung transplant and I feel like I was reaching people a lot more then. I've also been debating whether I can be seen as a "influencer." I've come to the conclusion I can.
I'm not the biggest blogger out there and I don't take any of the offers that are offered to me simply because this blog is for me. This blog is me, when you read it you are reading me, I write this for me for my sanity really and it helps me more than people know. I don't write it for views however people do read it and with that I just hope that people leave with a better understanding of Organ Donation and what it can do. I hope I provide positivity but with the honesty and openness that I'm known for, I don't sugar coat things and will never do so. I hope that if I am influencng people I'm doing so in a positive way, I've recieved a lot of messages off of people over the 4 years in similar situatons to myself and even people who have no connection to Organ Donation or Pulmonary Hypertension whatsoever that suggest they take something away when they read my blog and that has always left a warm fuzzy feeling inside that I'm able to affect or help people in even the smalest way. I hope I influence anyway and if not I hope I at least show people that even in the most adverse situations, which I've been in a few, that life is never over and there's always somethng that come from any given situation
I'm having a weird day. I found out this morning that I have been back on the Transplant waiting list since last Wednesday. So as of Wednesday 7th September I am once again considered someone pre transplant which is weird in itself because I'm also considered post transplant, a very odd situation to be in.
I'm currently sporting loungey pyjamas and don't plan on getting out of them, I've been working my way through a tub of Marks and Spencers crispy chocolate biscuit things, I'm catching up on "Victoria" and "Poldark," and the only makeup on my face is on my eyebrows so I don't feel entirely non human at least and I would be able to answer the front door should somebody happen to knock.
I honestly didn't think I'd feel weird when I found out that I was back on the list, I just thought it would feel like it did before but it's different this time for some reason. Last time I remember being so excited about it all but I also remember being okay if I had to wait a while because at that time I wasn't too bad so I knew I had the time unless something seriously bad happened, but that was comforting for me knowing that I had the time to wait. I don't have that comfort this time I keep being told I just don't have the time I had last time and that's extremely scary and frightening to know that and I know towards the end of my last wait we knew I didn't have much time then but in my mind I knew I couldn't have waited as long as I did for it not to happen so I was always sure I'd get there in the end.
This time I feel like there's much more on the line and a lot more pressure for me to stay alive not just for me but I've got to keep my current donor alive if only partially, she's kept me alive for the past year and I feel like I have a duty to at least keep the part of her alive that I can and the only way I can do that is by getting new lungs and by doing that I'll be gaining the responsibility of another person, it's a lot.
I really do wish I wasn't having to do this again, I feel like it's not fair on me or my family and i know that sounds really just childish I guess, I can just imagine me as a child or teenager whinging saying how my life isn't fair and "why me? what did I do wrong?" but I'm trying not to view it that way because that gets no-one anywhere and there are people worse off than me who can't even get on the transplant list for the first time let alone a second time so those people are probably thinking I'm extremely lucky to be in the position I am in and I am very lucky that I have this opportunity. I'm just tired you know, mentally and physically, I wanted my break and I barely got one.
The good thing this time is I'm not waiting to do anything, I know how fleeting life is and I will do as much as I can while I'm waiting and I will make the very most of my good days and do everything I physically can to enjoy everything whilst I'm waiting, be that sewing something, colouring (which I'm really enjoying at the moment lol) a day out with the family, a trip with the boyfriend or simply just watching a movie on the sofa with the people I love most.
We'll get there again guys and this time I promise to try and make it stick.
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.