13.12.14

BLOGMAS DAY 13 || Papworth visit...

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Hello guys, So today is Blogmas day 13 I feel like I haven't really spoken to you guys in ages because a lot of these Blogmas posts have been pre-written so it's strange to have not actually written to you in while. A lot of the upcoming blogs are planned but not yet written because I first have to experience them before I can write them. I'm very much looking forward to tomorrows it involves one of the worlds most beloved wizards ;-) 

So today I went to Papworth, today being yesterday for you guys. It was just my 3 monthly clinic where I just go there and have a chat and thats about it really. I got to see two of my fave doctors which is always nice. Before we actually even got into clinic though I bumped into one of them in the hallway whilst I was attempting not to die having just traipsed up a slow incline (they are the worst) normally they don't ever see me like that and I always make sure I have my breathe back before I walk into clinic. I don't know why I do this because it's not like every other person who walks into that clinic isn't having the exact same problem that I am. I just don't like to try and talk to people whilst I'm gasping for air I suppose. Anyway off topic I bumped into one of my doctors who looked very worried that I was gasping for air trying to regain control of my lungs and he basically forced me into a chair and on oxygen because he said I was looking very blue LOL. Bless him! 

Once that was done I was called into see them straight away and they asked how I was, I told them apart the severe chest and back pain I've been having lately and how I'm basically on oxygen probably about 22 hours a day at the moment they asked several other questions I told them about the really intense pulsating I get in my neck which is really painful and they seemed a bit worried so asked me to have a X-Ray and a ECG just to make sure everything was okay. Everything looked okay which is good but they think the severe chest and back pain may have to do with the pressures in my lungs rising. Not much of a surprise and something that was bound to continue the longer I was on the list. 

He then went on to explain to me that at the moment they are attempting to try and have some type of "emergency list" for Heart and lung transplant patients. For those that don't know there currently is not one for Heart and Lungs, they consider those of us waiting for heart and lung together more stable than those who are only in need of one. They currently have a emergency lung list and a emergency heart list but not one for both. Apparently they are having a lot of meetings at the moment discussing this and trying to get the people higher up to sign off on it. If I'm still waiting by the time they hopefully implemented this "urgent list" for heart and lung patients I would almost certainly go on it. 
 
Even if I don't get to benefit from the "urgent list" I'm really pleased they are finally looking into it because I've never thought it was okay to have one for heart and one for lung but not one for both it has just never made sense to me. This is one of the reasons why those of us waiting for heart and lungs has to wait for so long because even if we matched up identically to a donor and someone else did who happened to be on one of those "urgent lists" they would get the organ even if they were exactly the same in every aspect because of the status "urgent" the problem is those of us waiting for both can never really reach that "status". 

It's a complex system and I really feel sorry for those that have to make the rules because you are never going to make everyone happy. There are those that don't believe it's okay to use 3 organs on one person and then there are those that don't think it's okay to split up a perfectly healthy block of organs when someone could use that block. 

I will update you on anything I happen to find out about that in the future if they ever move forward with it but as for me I have long day ahead of me. I hope you guys are enjoying Blogmas I've really enjoyed doing it although I must say I couldn't do it every month so props to those who full time blog it takes a lot of commitment! 

As always, thank-you for reading guys and Merry Christmas
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