2.9.16

Stability...


I can sort of say I'm stable for the first time in about 2 months my Lung Function didn't go down! My Lung Function was 31% :-O I was extremely happy! Now I know that's only 3% higher than it was 2 weeks ago and I know that technically that doesn't suggest I'm getting better but all I've wanted for weeks now is to remain stable and now I am. I personally didn't want to stabilise at such a low level but stability is literally all I want for the moment, if I manage to get anymore improvement that will be a big bonus but I won't expect it to happen. 

Clinic though went well, it was a really long day because I had a bunch of other things to do on top of my clinic appointment. I did a 6 minute walk test which I haven't done in over 18 months. I managed 137metres which is actually better than I was managing pre-transplant as I had hit 90metres then so I'm seeing that as a positive even though I do know how crap 137metres sounds. My O2 stats are actually really good and staying at 96 at the lowest it's just my heart rate that seems to get up to nearly 200bpm which doctors aren't surprised at because my body is already working overtime so when it's walking it's obviously going to be working a lot harder. Now that I seem stable and we know my oxygen levels are doing well too I can start to sort of build up my exercise again, it's never going to be amazing and I'm not going to be walking for miles of anything but I need to make sure I keep up some kind of exercise level so my muscles don't start deteriorating either. 

I had to have a "discussion" with a psychiatrist which was probably as useless as I was expecting it to be. She told me my anxiety was reasonable and to come bak if I thought it was getting worse. To be honest the woman seemed far more interested in my family feud and the fact my dad has been married 3 times and has 6 kids. See so a bit pointless. 

We then had the big discussion with my consultant and I feel like we got a lot done. The past sort of few weeks I haven't felt like everyone has been on the same page so that was one of my big aims for this appointment, to get everyone in the same place with regards to meds and just where my condition is the trajectory of it, when I'll be on the list all that type of stuff. So I feel like we got a lot accomplished. It's not like I haven't been getting amazing care it's just because of how fast my deterioration has been it's easy to get lost in the timeline of it so now I feel like everyone is in the same place and we all know where we are now and the plan is place and everything seems much calmer to me. 

Following this we had a meeting with one of the surgeons and I've met him several times before in the past and he's still lovely. This meeting was maybe more intense than my original surgeon meeting before my last transplant because unfortunately there were a lot of questions. I was told that Papworth haven't done a heart and lung transplant at all since they did mine which is 15 months ago! So the likelihood of me getting one is just so slim so it will probably be a double lung transplant which is quite risky. It's hard for them to give you number because they've literally done two of this kind of operation but they have to try and give you numbers so they kind of just pulled 75% out of the air but they're basing the numbers of actually Double lung transplants, essentially though they did say really the risks are unquantifiable and they can't really give me a accurate number, which is fine I guess. See as positive as the whole appointment was i still worry about little things, they were telling me about all these new things they might do on me to improve blood flow in the lungs like turning my blood into a an electrolyte paste and taking some of my muscle from my rib and wrapping it around the joins and all this super cool science stuff and yet the stuff I'm worried about is having a god awful massive scar across my chest! Because they can't go in through the last scar because scar tissue and they don't like to so they'll be going in under my boobs and because of the previous transplant they will likely have to go the whole way across plus all the drain scars I'm going to have again. I'm basically going to look like Frankensteins monster. Then there was the fact that they said they were going to have to put in a line in my groin arteries well that was just the cherry on the cake for me. I know that is a common thing and I have had ALOT of procedures through my groin arteries but I don't like it at all, it might seem ridiculous but I guess I fixate on the little things rather than the bigs ones because that makes things easier for me. Also I guess with the groin artery thing I nearly bled to death through one when I was 5 years old and I'd just rather not have that potentially happen again :-/ 

Overall though it was a great appointment. I got all my papers signed and once they get all the measurements for my arteries I will be back on the transplant list as of the end of next week beginning of the week after which is scary and exciting I guess. Me and Mark are off to Wales though tomorrow just to sort of getaway and we were meant to be in Europe right now so at least we'll feel like we haven't completely missed out and get a nice little break in. It's not like I'm going to forget about everything that's going on but at least it'll be a different place with pretty surroundings and there will be a hot tub and it'll be quiet and just lovely. I'm very excited for it :)     


As always, thank-you for reading and chat soon
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