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 :)
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.