Clinic day...

So today was CLINIC DAY. I wasn't really looking forward to it if I'm honest, or it was more the 4am start and 3 hour drive there and back I wasn't looking forward to but once I was there I was actually really happy to be there. I had all the regular tests done that they normally do. All good :)

I was really pleased to have Paul as my transplant co-ordinator today, he's my favourite! He's so funny and just gets me so I'm always pleased to see him. I got weighed and I have officially lost another 6 kilos and Paul said I can stop now :D I just have to try and maintain it. It's kind of a running joke between us because when I was first put on the list and they told me they wanted me to lose 10 kilos I scoffed and told Paul there was no way in hell that would end up happening, I liked my food too much LOL. So today I proudly announced to him that I was 67.5kilos a lovely healthy BMI of 24 and nearly 15 kilos lighter, he laughed and said it was funny coming from the girl who said she liked her food too much. It's a good weight for me to be because it means I still have some meat on me so when I have my transplant I have some weight on me thats okay to lose. It also helps and offers more potential donors for me. So everyone seemed pleased with that :)

Ummm with regards to health stuff, they're a little worried about all the different episodes I seem to be having and that my chest pains seem to be getting worse and that everything is happening so close together. They're more worried about me collapsing and the weird numbness that I'm getting in my arms intermittently and they may get me to have a CT scan sometime soon. They're gonna wait for me to see Hammersmith first though because they don't want to step on any toes which I get, so I'm ringing them on Monday (as I got home too late today to ring them) to try and get them to move my clinic appointment forward so we can try and get a plan of action in place because if I'm about to go downhill rapidly they want to catch it now rather than later, which sounds all good to me.  After all that they went through a form I filled out last year again with me because when I filled out this form last year I had no clue what the hell I wanted and literally put "not sure" on the whole thing LOL. So this form basically asks what organs you would be willing to accept. There was very little information on this sheet so I don't think I made a very informed decision when I filled it out. So Debra (One of my doctors) went through everything and went into detail what things meant, like Cancer. That doesn't mean you'll get an organ from someone who has say Lung cancer but more likely someone who probably had a brain tumour and brains are very isolated cancers and would very unlikely spread to other organs. Stuff like that, that wasn't on the form. They just wanted me to give a yes or no answer so that the next time I get my call I don't have to be stressed out thinking about whether I've made to right decision to say yes to some organs like I was with my first false alarm. 

I got the pleasure of meeting fellow ex-PHer who had her transplant 11 years ago I felt really bad because I'm so awful at recognising people but luckily she recognised me and came over and said hey. I so often get messages from people who are like "were you in clinic today?" and I just wish they would say hi because I love meeting fellow transplant people and PH people and I'm usually so oblivious, I should work on that. I also got to meet the receptionist who I talk to every month, to give my monthly updates to. She especially came down to see me bless her, and I could see her staring at me for ages and I was like "why is that lady staring at me?" and finally she came over and introduced herself. She really wanted to know why I was so happy and cheerful all the time. I always forget that people aren't generally as chipper as me lol. 

Annnnnd Finally I got to go and see Bernice, I've mentioned her on many a moon but if you don't remember her she is the young lady beside me in the photo above ^^^^ and also if you want to find out more about her here's the link to her Blog. Me and Bernice have been transplant buddies for quite some time and we get to see each other a few times a year because we both go to the same hospital and Bernice got her lovely new lungs back in December if you remember that post. It's the first time I've seen her since her transplant and she's looking SO well and we had a lovely long natter about everything which was really good for me because I know Bernice will always tell me how things really are, not the doctors embellished truths LOL. It was also a very momentous occasion for her as it was home time after 7 weeks in hospital so I was pleased I got to see her today, it made me one happy girly even though I've been talking to her pretty much everyday LOL but there's nothing like actually seeing someone in person :). 

So i think thats everything from today 
Chat soon guys 

1 comment:

  1. Hi Stacie :) Just wanted to say that I've just been reading about your story and you're literally so incredible! You're so upbeat and lovely about everything, you're very inspiring :) I'm currently recovering from my 3rd open heart surgery, which is of course not the same as everything you've had to go through, but I've recently become more aware of the world of organ donation and it's something I now also feel passionately about! I'll be eagerly following your blog and twitter from now on, and joining the hundreds of others it seems in cheering you on :) I hope so much that you get your gift soon, keep being fantastic. Hugs! xxxxxxx


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