28.3.13

The Flolan Diaries:- New Friends...


Heya Blogland, 

source

Well today I got to meet the loveliest people!

As a general rule, with PH you don't get to meet many people with the same condition as you. Or you do but you rarely ever actually get to see them, in person. Which is why social media has become quite essential in regards to people like myself when it comes to getting to actually talk to people who can relate to what you are going through. I have quite a few PH friends who I talk to on a regular basis through Facebook, Twitter and other similar platforms but a lot of them live fairly far away and it's just not feasible to be able to see them very often if at all. 

Tonight however I got to meet a young girl called Erika and her mum Rachel and Erika's best friend, who actually live in Swindon. I've actually been talking to Rachel for about a year on and off but had never really spoken to Erika. Erika, who is 14, has recently been put on Flolan and although the pump is different to an adult pump essentially the beginning process is the same and Rachel and Erika kindly offered to show me how they do their night-time med change. I gladly said yes because practising is one thing, but I think it's definitely something you need to see first hand because when you're practising you're not sterile and you're not bothered about measurements etc. 

I went over to their house and got to witness it first hand and although it is still a little daunting because it is still an intravenous drug being put directly into your heart but we all had a laugh and a chat while Rachel did the meds and it certainly makes it seem like I should be able to do it too, once I get used to it.  There was obviously loads of things to get used to like different syringes different vials with the drug and saline and all that medical stuff but they sort of showed me that if you go through it step by step it should all turn out fine. Rachel was also telling me things that she originally panicked about but now she just works through it and it turns out fine. 

One of my fears is killing myself with an air bubble lol.   

It was so lovely to meet them as well because I don't have very many people my age that I get to talk to and there definitely wasn't anyone my age when I was Erika's age so even though me and Erika aren't close, close in age we can still totally relate to each other and talk about a lot of PH stuff and Erika and Rachel have really made me feel a lot more at ease with the whole Flolan thing as well. 

I still don't have a appointment through for me to have the pump line to be put in me but my consultants are just waiting for the imaging department to get back to them to let them know when they have an open spot. But the guy did say it would probably be around the 15th but he'll have to make sure.

I am off to see "The Host" tomorrow with my friend Gina, I'm rather excited to see it because I have been waiting for this movie since the book came out. I really hope they don't screw it up because I really did love the book! I will probably do a review on it after I've seen it.    

Write soon guys 

7 comments:

  1. This is a lovely post! I hope things start happening soon! x

    ReplyDelete
    Replies
    1. Thanks Hannah, unfortunately hospitals work at their own speed lol but I'm sure I'll find something out this week :) xoxo

      Delete
  2. You're so brave. I love your blog too! I think you are such an amazing, inspirational person and I hope everything goes smoothly

    ReplyDelete
    Replies
    1. Thank-you Anna thats so nice of you say! I hope so too I'm sure I'll do either videos or photos from hospital whilst I'm in there :) xoxo

      Delete
  3. I just wanted to tell you that I'm 15 and I had cancer when I was 13. I'm still alive, as you can read?,and I'm actually proud of who I am today thanks of all the things I've been through in my life. Don't lose the faith and keep fighting unitil the very end. I know it is hard but it is worth it. Whenever you need to talk or anything I'm here.
    Much love,
    Ana :)xx.

    ReplyDelete
    Replies
    1. Hey Ana, I'm sorry to hear that you had cancer that must have been tough!

      It's hard for people to wrap their heads around but although I don't particularly enjoy being ill and all that stuff if I hadn't been through what I have been through I wouldn't be who I am either and as cliché as it sounds it does make you a stronger person and certainly makes you fight harder for the things you do have :)

      xoxo

      Delete
  4. i've tagged you in the versatile blogger award, check it out.

    - Amy x

    ReplyDelete

Thank-you for commenting <3