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 :-)
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.