Thursday, 30 October 2014

Facebook Break and bitterness...

Recently I have started to get a bit down about still waiting and even with minor ups like I had the other day no matter how marginally better I am that happiness only lasts for so long, I then remember that I am still waiting, my life is still on hold and there is nothing I can do about it. I try not to let it get to me but I'm only human and it is a constant niggle in my brain that is becoming so, so hard to ignore my will power is waning. Then I go on Facebook and see all these extremely deserving people getting their transplants but then I can't help but ask myself what am I doing wrong? What is it I need to do to make this happen for me. There is no answer obviously I just so happen to land in a category where it is very hard to get a transplant. My blood group is O-, but that therefore means more people need the organs but there just isn't enough organs to go around. I'm in a weight bracket that is highly competitive as men also are in it. I suppose the one thing I do have going for me is that I have no anti-bodies but then I suppose if a low antibodies person came up they would want to give it to some-one with quite high antibodies. It's all quite complicated and quite depressing when I even try to think about it because all I can think about is the many, many reasons why I won't get my transplant. I feel completely lost in the pack of cards that is transplant awaitees, not even a card really probably the joker that gets shoved to the side before you play the real game and then they get lost because people forget they took them out in the first place. I wonder if that is what they do when they get a donor they take you out of the running because of whatever reason then they completely forget you were there in the first place. 

This is all making me very bitter and I honestly hate that side of me, my personality is happy chipper Stacie who perseveres and doesn't let things get her down. I've decided I need to come off of Facebook for a while I'll still post my blogs on my "Life is Worth The Fight" page but just generally I can't be on there seeing things and getting upset about them and things that just remind where I am in my life. I need to try and get me back. I'm not sure how long that will take but I think I need to do it because otherwise my friends and family are just going to have to deal with a quite broken Stacie by the end of this whole journey and not the strong willed enthusiastic person I consider myself to be. 

I will still be posting blogs just on my "Life is Worth the Fight" page, I will still be on Twitter as I'm not on that, that much anyway and there is always Bloglovin as well :). I just won't be scrolling through my Facebook feed, posting on my personal Facebook or on groups for a while. I just need a break from it all, that's all.  

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

Tuesday, 28 October 2014

Small Victories...

The past few weeks I've been having "I'm depressed! Why haven't I got my transplant yet?! WHY?!" type moments not that I don't have those at least once a week but the past few weeks if you were in my brain all you would be hearing would be "Why?! Why?! Why?!" It's annoying but as I have come to learn in the 921 days of transplant list life it's pretty much what I have come to expect. The problem is when you're ill you think it so much more which is what I have been doing for the past few weeks of lung infection wonderfulness. 

Today however I went the GP and it looks like my lung infection is finally buggering off YAY! I am in all honesty feeling much better and seem to be able to get off of my oxygen for a decent amount of time, not sleeping as much and managing to keep a bra on for at least 3 hours. I think when you are in my kind of position it is all about the small victories that you have. So getting rid of this lung infection although not the biggest news in the world, does make my quality of life much better and means I am not stuck in my bed for 20 hours a day. It's a minor victory in the grand scheme of things but it makes a difference to me and my life so it's something I want to acknowledge. I still have an ear infection which is annoying but I can live with it and my heart is still being a bit off but these two are going to be the next things that get addressed.  

I think this is something I need to apply more to my life and not get so down about things that are beyond my control, just try and take small steps which lead to the small victories which will hopefully lead to the ultimate victory (transplant). I know it's super hard to do that sometimes and there are some weeks when I just don't think I can do it anymore but I do need to remember that the small victories aren't insignificant and they will eventually lead to something major. I tend to take those depressing Stacie moments and write blogposts but you guys should honestly see some of the blog post drafts I have written in the past and waited to post them, then re-read them with a clear mind and ended up deleting them because they are so depressing. I probably should have kept them to read them post transplant to see how far I will have hopefully come that would have been interesting, hindsight hey?

Anyway guys I hope you guys can apply this to your lives and remember the small things aren't insignificant and you should celebrate each one :) 

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

Sunday, 26 October 2014

Talk about your medicines...

Hello my lovelies, So I got contacted by the people at "The American Recall centre" and was asked if I would like to participate in "Talk about your medicines month. " I thought it would be a really good idea because I haven't done a 'my medicines' post since I started my blog which was over 2 years ago now and a lot of my medications have changed and/or been increased since then. I also thought it would be a good way to show you guys some of my tips for what I do with my medicines etc.
So firstly what medications do I take/what am I on? 

- I am on a 24/7 IV line of Flolan or otherwise known as Epoprostenal. 
- Bosentan twice a day
- Sildenifil/Revatio/Viagra 3 times a day
- Warfarin once a day
- Ferrous Fumerate/Iron once a day
- Spirolactone once a day
- Furosemide twice a day 
- Omeprazole once a day 
- Multi Vitamins once  day
- I am also on Co-amoxiclav 3 times a day but that is only till my lung infection clears 
- I am also on Acetic Acid for my ear but just until my ear infection clears up 

So that is everything I am on. Almost all of them are in tablet form so super easy to deal with while other are serious and have to be dealt with in sterile environment which is my Flolan as that is going directly into my my chest and to my heart. They have a variety of different jobs, The Flolan, Bosentan and Sildenifil are all Vasodilators which basically means they help to widen my blood vessels and help "smooth muscle" to relax. Due to the extremely high pressures in my lungs it means my heart and lungs work extremely hard to do their jobs and the relaxation helps them to do their job and makes it easier for them to pump and the widening of blood vessels helps them to take in more oxygen which can only be a good thing for me whilst also bringing down blood pressure too. 

The Warfarin is thinning the blood so it can get round me more easily and also a side affect of some of the other meds is blood clots so it is just counteracting that. 

Another side affect of some of my meds is Anaemia which is the reason for the Ferrous Fumerate because when I'm anaemic I get very tired and so the one pill just helps me be less so. 
A side affect of my condition is water retention which is bad and they don't like people to keep that in them as it may be sitting on the heart or the lungs so they have me on two diuretics which just take any excess water out of me. I have been on Multivitamins since last year ever since my infections as they just like me to have a little boost 

Any tips I may have 
  • So I have Pill pots that have 5 compartments in each strip for morning, noon, evening, night and as required. This makes going out so much easier I fill the entire weeks worth up and then if I need to go anywhere all I have to do is grab that days and I'm ready to go. It also makes it much easier to not forget a pill and you're not carrying around boxes and boxes of medication. 
  • I have a box which technically used to hold Christmas lights it's a 6"x 4"x 5" so it's not a massive box but it holds a box of each of my medications so if I have to go to hospital I can just grab the box knowing everything I need is in there and if I end up having a stay there they will let me do my own drugs. I wouldn't advise just having the pill strips in there because some hospitals get funny about letting you do your own meds without the bottles or boxes which have your prescription level on and dosage etc. 
  • For me I have a medication [Sildenifil] which comes in boxes with only 4 pills inside so I empty the boxes and put the strips in a bag this saves SO much space I do however have to keep a few boxes because if I ever have to go to hospital I like to have the box. 
  • The Flolan is a bit tricker and makes spur of the moment trips out harder but I have bags made up individual a double bags that I can just grab if I am going out. I keep a mini hand gel in my hand bag at all times and I also have a little pack on table wipes I can use If I'm going out or am at someone else's house but it just makes going out much easier. If I'm going away for a few days I have these biohazard yellow bags that I brought for those days as I can't take a massive medical sharps box with me and then when I'm away I can just put any sharps things in the bag until I'm bag at home and can put them in my sharps box. 
  • When it comes to taking pills the majority of my pills are in the evening and I used to drink with every single pill and by the end of it I would be so full but my advise would be to take as many as you can at once. I personally fill my mouth full of water then pop in all of my pills for the evening and swallow, you can't feel them and I'm less likely going to have one get stuck at the back of my throat. 

These are just a few things that I personally do that help me, let me know if you guys do anything that I don't that you think would be helpful I'd love to hear.  

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