24.4.13

Flolan Routine

Hey Blogland, 

Well the much anticipated (well in my mind LOL) new drug routine blog. As you all know I have recently acquired a new routine which I have had to work into my life. The Flolan routine has been added on top of all my other tablets that I already take if you want to see them here's the link. Although the method for this is a little more complicated than the Iloprost routine was I really do prefer it because I only have to do it once a day or twice depending on whether I pre-make my morning dose or not. I just do it before I take my morning and evening meds and it only takes 10-15mins which really is nothing. 

My Crono pump with my drug attached
 ^^^^ Above is my Crono pump it is the machine that delivers the medication to me constantly at a certain rate. I don't know the science behind the rates and stuff all I know is it does it's job. I keep it in a little pouch which goes around my hips or waist depending on what I'm wearing and it can also go around my neck as well on a lanyard if I'm wearing a dress :). 

Filter, Glycine solution, Flolan medication
 ^^^^ Above we have the medication itself. the one on the far right is the actual Flolan, it's in a powder form and has to be mixed and dissolved into the Glycine solution so that it's able to be administered to me through the line in my chest. After the medication has been mixed together it has to go through the filter (on the far left) which takes out any grainy bits as we don't want any of that going in me :). 
  
Sterile pack
 ^^^^ This here is a Sterile pack. After prepping the surface you intend to work on you have to take out the sterile pack without touching it. It has to remain completely sterile or as sterile as possible. You then have to unfold it touching it as little as possible, or if you need to the side facing down, that won't be touching any of the equipment. In it there is a tray where you can put some of your tools if you wanted, some dressing bits if I needed any, a bin bag to put all the wrappings in and finally some sterile gloves these have to be put on after all the bits and bobs have been sterilely removed from their packaging (not touching them with your hands) and you have to put them on without touching the outside of the gloves. It took me a while to get the knack of it but I got it in the end :). 

Green needle, alcohol swap, line, 20ml syringe with white needle and 30ml syringe.
 ^^^^ Above are the main bits that are needed when making up the drug. You mix the Flolan into the Glycine solution into the 30ml syringe, then it's filtered into the 20ml syringe trying not to get any big air bubbles in the process, then it's attached to the line, then the pump, then you alcohol swap the end with the red bit coming out of the end and the bit  thats constantly attached to me and I attach it together. Ta Dah!

Alcohol surface wipes, Alcohol gel for hands, Sharps bin
 ^^^^Above are the wipes I have to prep my surface with although I have to also clean it in-between time as well and then there's the gel I have to use after having washed my hands as well. Then the sharps box is where I put anything that could possible contain the drug and obviously needles LOL.

Generally what it looks like when I've got it all set up (this is for making two doses)
These are the extras:- Dressing, Chloro prep, BDQ connector and biopatch. 
Okay guys so above are the little extras that have to be changed once a week but I'm doing most twice a week because I'm paranoid LOL. The dressing is a clear dressing which goes over my line site and is water proof so it doesn't allow any moisture to get to my line site and let any infection in. The Chloro prep is a little stick that before you put the new dressing on you squeeze out the liquid thats in it with the little handles you can see and you wipe it around the line site incase any little germies may have gotten in. The Biopatch goes around the line and I think (don't quote me on it) it contains some medicine type stuff in it to keep infection away from the line and apparently from what I'm told it has reduced infection by something like 30% in the people they originally tested it on which I'm all for if it reduces infection :D. The BDQ connector is a bit of a mystery to me, I think (once again don't quote me on it) it's another thing to reduce infection. It attaches to the line that is on me permanently, I don't really know what it does I just know I have to change it once a week LOL. 

Right and thats everything guys. I hope you enjoyed it I seem to have taken to it quite well, but I think thats because I needed it to be better than the Iloprost, doing that 7 times a day just wasn't an option anymore and I can't tell you how happy I am that this is 10 million times better. I know that it's probably making me a little OCD about being sterile but that can't be a totally bad thing it's preparing me for when I have my transplant and I have to be careful with germs then ;).

I also hope this prepares people who are going through similar things. I know it took me 10 months to decide to do this but for me it's the decision thats the hard part once I've made it everything else seems to fall into to place and I stick to that decision. So far it's been the right decision. Now all that would make it the perfect decision is for me to be feeling the benefits of the medication, but I think that will only happen when they start upping my dose some more. 

Right guys I'm sure my next post won't be so hospitally (real word? LOL) but hope you enjoy the little insight to my new routine :)

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Talk soon guys  

8 comments:

  1. It really is inspiring how you stay so positive. I admire that trait hugely in people. Some people are so negative, even with all of the privalages they have. That, my friend, is a horrible trait.
    I wish you the best of luck and happiness for the future.

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    1. Hi! I'm very much a person who believes thats positivity is something vitally important when you're battling a chronic/terminal illness it's obviously not going to cure it but it can make your life a million times better and I think even if you aren't battling something like this even normal people can be more positive and it I think would make someone's life a lot better just by looking on the brighter side of it :D. Thank-you very much

      Stacie xoxo

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  2. You are a true inspiration! As someone said above me, it is incredible how positive you are and it makes me think of the negativity we all feel sometimes with out any reason. Good luck finding a donor, and just for you to know, here you have a loyal reader (even though I don't always comment - I'm so sorry :S).

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    1. Hi Soff! Thank-you so much it means a lot that anybody takes the time to read it and it's wonderful to hear that people keep coming back to read it. When I first started the blog it was just to keep some kind of record to look back on and to keep my wide spread family in the loop. I so pleased it's reaching people and spreading the 'PH' word LOL. Don't worry about not commenting it means so much that you even read it.

      Thank-you Soff
      Stacie xoxo

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  3. Wow. Thanks for sharinh allll this information with us. I'm a PAH patien and this is gold

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    1. Hi Rob! I'm pleased you like it. I never know if I give enough information because obviously I don't know all the medical stuff but I hope I get enough across that people get the general idea, if you know what I mean :)
      Stacie xoxo

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  4. You are such an incredible person! I think posts like this gives people like me, who know a little less about things like this, as lot more insight. With that insight, I get an even stronger understanding of how tough and brave you are. I am crossing my fingers and toes for you getting a donor asap. Thanks for sharing, it is very inspirational to see how you deal with things. So positive!

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    1. Hi Mattie! Thank-you very much, I'm so chuffed that you find it interesting and that it provides you with a little bit of insight, sometimes I find it hard to know how much information to give without it boring people, because sometimes I suppose if you don't know what someone is talking about people can switch off (or at least I do, as it frequently happens when I'm at hospital LOL). But I'm pleased to read that you enjoyed it :)

      Stacie xoxo

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Thank-you for commenting <3