17.10.12

Clinic time

I'm happy today :-D
Heya Blogland, 

Well I know these blogs are a bit out sync but this one is to inform you of my most recent clinic visit at Hammersmith.

A much better experience this time. The transport arrived early even though we did have some minor hiccups on the way but I felt alot less anxious this time. I think the fact that Rachel telling me last time that it doesn’t matter whether I’m late because they see people on a first come, first serve basis has made me relax a bit. I think the thing about me is even if you  know me unless you’re my sisters and parents you won’t ever see the anxious side of me. I only ever become anxious if I think I’m going to be late for something and something doesn’t go to plan. It’s something that has only developed in recent years but I feel like I can relax a little when it comes to appointments now because I have been told that it’s okay to be late for clinic. I think the anxiousness only happens if it’s not in my control, so when the transport is late, when a bus is late when I physically cannot do anything about it. Which you would think would actually make me more chilled because it isn’t my fault but my brain just isn’t wired that way LOL.

One of the beautiful Buagtti cars :-) Oh to be rich lol
Ooooo on our way through Londonia, I did see a lovely car shop and I have decided if I ever become rich or win the lottery or have some unexplained success I would love to buy a Bugatti car they look lovely and kind of expensive LOL.  

So I got to clinic about 10mins late which isn’t that bad considering traffic was horrific. When we got there I got seen immediately weighed, blood pressured, then Dr Gibbs called us in straight way and he was really chatty which I loved. I hate it when it’s awkward silence and you have to come up with anything to say just to fill the silence. But I think he was in a cheerful mood and therefore I felt like we could chat more and the fact that I had just been to the PH conference meant we had stuff to talk about. Dr Gibbs actually mentioned that he would have liked to put me on the Selexipag (I think this is the right spelling now LOL) but because I’m on the Iloprost it’s not an option, but it’s still a while away anyway and they won’t be prescribing it till probably 2014 so we’re going to persevere with the Iloprost, plus I could get my transplant and they don’t want to risk me getting worse by trying a new drug that isn’t fully tested when right now I’m pretty stable. So it’s in my best interest really which is great that they are looking out for me.

I did my 6minute walk test I walked about 120 metres which is stable I probably could have walked a bit further but my chest was really hurting but the good thing was my oxygen only went down to 70% which was probably more like 65% but it took a bit of faffing getting the BP cuff on LOL but this is still pretty good as my oxygen usually goes down to about 50%. So lovely and stable which we like :-D. It’s the first time in about 18months where I can actually say I’m not worse even if I’m not better this is the most I can ask for and I’m grateful that I’m not worse because it would have been disheartening to feel worse again.

Whilst I was there I also helped fill in about a thousand quality of life questionnaires. Which I was more than happy to do because the current quality of life questionnaire is a tad long and if they can reduce it and get the same comprehensive information from it then I’m pleased to help. I think the main reason they want to reduce it is because every time you go there you have to fill in the same questionnaire and unless you get dramatically worse or dramatically better you basically fill it out the same as you always do, so it is a bit frustrating filling out the same questions over and over again, but I think people are less likely to mind doing that if it’s only a A4 page or something similar.  

I’ve got to go back in January, if I haven’t had my transplant by then that is, and they want me to do my yearly bike test which I will remember to take shorts this time because they are still doing the retarded leg thing that is impossible to do with leggings on LOL.  I got out of there by 11:00 which was surprisingly quick and I was rather chuffed because where clinic is it really is like a cattle market and I just don’t really like it there LOL.

Next appointment is at the Papworth on the 2nd of November hopefully be the weight I need to be ;).

But until next time guys see you later

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