24.9.14

When will my day come?

On Monday I had my Pulmonary Hypertension clinic which was just a general How are you? What's going on in your life type thing. So I told them about the constant dizziness and lightheadedness that I'm still getting and they believe it to either be a inner ear thing which apparently is not uncommon in people on my type of medication and because all my other readings like BP, heart rate etc. were all good they don't think it's the heart so they have prescribed me with another medication which if it is in fact a inner ear thing should sort it out. If the medication has no effect they'll start looking and seeing if it is my heart which it could be but we're trying to rule out easy things first :)  

In my 6 mins walk test I managed around 90 metres with one stop in the middle which I know doesn't sound like a lot at all but that's what I've been walking for around the last year so it's good in the sense I'm stable and it's not decreasing. I have to go in, in December/January (if my transplant doesn't happen in the mean time lol) to have a in depth echo as I haven't had one since August of last year and a bike test as well since I also haven't had one since last year. These test will tell them much more than the standard tests they normally do on me. I think they avoid doing echo's on me generally because they take quite a long time I'm usually there for around an hour and half because there are so many pictures they need to get of my heart because of all the different things that are in there but it's worth them doing every now and again just to keep an eye on things :). Although I abhor the bike test that's also worth doing just to get lots of different reading and me doing the bike tests means I have managed to avoid having a Right Heart Catheter for quite a number of years ;). 

However since my appointment all that has been on my brain has been getting my transplant. I try not to moan because I know that is never going to solve my situation but some days my brain just cannot comprehend the fact that I'm still stuck in the same situation that I was in nearly 2 and half years ago. I just want to be able to move on with my life and not be that poor sick girl that I have been known as for well my entire life but more so in the past 3/4 years. I just feel like "The List" is some form of torture and someone somewhere is getting their jolly's off of the fact that I'm still waiting trying to stay positive but slowly failing. 

You honestly start to ask yourself if you did something wrong and thats the reason you're still waiting or whether there is something you can do to make it happen. I don't think I've ever done anything bad or wrong and sometimes I just can't understand why I'm in this situation when there are murderers and rapists running around in perfect health.... Yes I do realise that your health is not subject to your life decisions but surely there should be some sort of karmic justice?!

The thing is it's not just for me that I want it for. I'm obviously the main reason because it's my life that we're trying to save but it's for my friends and family too. Bernice just text me (its 1:30am) telling me that she had a dream that I got my transplant and then woke up sad because it wasn't real and Kath told me she still sleeps with her mobile next to the bed incase I ring in the night. Bernice and Kath are Post transplant they shouldn't still be having transplant dreams and having to keep an eye on the phone. Then my family are constantly on call if someone wants to do something we have to make sure that there is at least one person who is able to drive to get down to Papworth and so we're always kind of constantly on standby. It's hard to explain but I want this not only for me but for my friends and family too. 

When will my day come? 

As always, thank-you for reading guys and chat soon 
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