4.10.18

Block...


Okay so last time I wrote it was the night before my operation so quite a few weeks ago now, it's actually October 4th now so yep I've been a bit slow on the old informing you guys on what has happened and that is simply because I haven't been able to sit down and write anything. Not that I haven't had the time because I have plenty of time I just find it hard to go over and think about and rehash over again. The whole subject is hard on me and just quite frankly draining. I'm going to try but there probably won't be tonnes of details about you know the little ins and outs. 

So I did have my op in the end and everything went well, it took 3 hours in the operating theatre and unfortunately I did spend a couple of hours in recovery because I woke up in more pain than was to be expected but I was given a lovely little morphine drip that I was able to press every 5 minutes on top of my additional Oramorph and Zomorph pain meds. My thumb was certainly very active for a few days haha. What did they actually do though? Well I was unaware going in exactly what he would do as he himself didn't know until he got in there but what ended up happening was the top lobe of my left lung was stapled and removed as this was the section of my lung that had lots of little "bubbles" (only word to describe them) which were the things that kept popping and making my lung collapse so it was great that these were easily removed but that didn't necessarily fix the problem as there would still be the odd one floating around the lung that could cause future collapses. However the top left lobe of my lung also housed my Aspergillious fungus ball/cavity and my surgeon being the clever little noggin he is managed to remove it now this is great news but did cause further issues down the line as it upset a few family members (more on that later.) In addition to the section removal he had to remove some of my lung lining and then they applied the Talc which essentially irritates the lung and creates a reaction where it sticks the lung to the chest cavity wall. Everything seemed to go well and so far it seems to have fixed the problem. 

Now aside from my surgery going well I am still recovering it was a BIG surgery and ribs and chest muscles are some of the most painful parts of the body to heal so it takes a while. I mentioned previously that the aspergillious cavity was removed in the process and this did happen and is great news but this led to a fair bit of upset amongst not just me but my family and led to a lot of discussion for the Papworth team and national committee because my aspergillious ball was a big reason why I wasn't allowed to have a second transplant. I personally didn't allow myself to even think that the removal of the cavity would now allow me to go back on the list because I knew there were just so many other reasons why I wasn't allowed the transplant initially that the removal of just this one wasn't going to make very much difference at all. Papworth being amazing though kept bringing my case back to the table to see if they should reconsider it but still it really just isn't an option for me the risks involved would more than likely result in my death. I'm known for taking risks and i will take risks if I think I can beat the odds but honestly the amount of time I've personally gone through this in my own head I can't see a way that I would survive or having another transplant and it actually improving my quality of life and because of what they would have to do there would be a great chance of me being worse with so many potential problems post that the risk just isn't worth it for me and ultimately it would end up being a total waste of organs. Also I would have to find a surgeon and a team willing to perform it which at the moment there is not and even if I could find one I would still then have to get past the National committee who have already said no and even by some miracle they ended up saying yes I would then have to go through "The Wait" again and that would end up being the same as last time and I am probably not going to last 3 years and there would be no chance of being added to any kind of urgent list as I would require both again, it would be a second transplant as well which automatically disqualifies you from any urgent status. Everything ultimately points to no and I'm okay with that I accepted that last year when they said no but it did unfortunately give some hope to a few family members and I think it's sad that they don't get that hope. But as for me I will continue to go on living my life in the lovely way I have. 

I have found it so hard getting over this one, it really has affected me not just physically although I'm sporting massive dents in my side that resemble belly buttons but mentally this has been a huge challenge. I'm normally mentally very tough I get on and never really let things get to me that much but my anxiety has been through the roof with this one. I can't be left alone just incase something happens and getting out and about is really hard for me at the moment. It scares me. I'm so afraid of this happening again, I don't ever want to have a collapsed lung again. There were times when I was mid collapse and in the A+E and I thought "Okay this is it. This is how I'm going to die." and Doctors were genuinely worried that could be the case too we actually had to have the resuscitation talk as in would I like to be resuscitated should I go into ay kind of an arrest? Obviously my answer was always "YES!" but I could see there being a point where actually I might say "no, fuck it" because those experiences were so painful and so extremely exhausting that I couldn't see myself having to put myself through it again especially as they were happening so close to each other. I wasn't being given any chance to recover or given any space from it to be able to forget the pain and exhaustion of the previous one.

I was extremely fortunate to have Mark there through it all though he managed to keep reminding me I have so much to keep going for and how much we still have to do. He got to stay with me the odd night when I needed him and he was always there to give me cuddles and hold my hand through any situation, he really is a one of a kind. That is however another weight on my mind though and that's how awful this is for him. I know I would do exactly the same for him because I love him beyond anything but the fact is I hate having to put him through this and I know I'm not choosing to have bad health or to be dying but it's awful that he's having to watch this happen and sacrificing element of his health to be with me when I was in hospital, it really did affect him as well and I will always be so sorry for that. I just hope whatever happens in the future isn't drawn out or long winded . 

The positive thing though is that I am on the road to recovering from this though albeit not to a full state of health but to hopefully lungs that aren't going to collapse on my every-time I cough or take a breath. It's nearly 4 weeks since the op and I think we're getting back into the swing of normal life again. We're trying to plan things but not so much that we lose a tonne of money if I had to cancel but planning to look forward to things and hanging out with friends. I am being "babysat" a bit LOL by friends because we still find it hard leaving me by myself but Mark still needs to get out and do his stuff and be himself so we try and get a friend to come and keep me company and hang whilst he's able to do what he wants to do. It's difficult but I think we're making it work.          

As always, thank-you for reading and chat soon

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