7.8.12

Regime

Hey Blogland,

So I thought I would show you guys what my regime is everyday. I'm probably one of the lucky ones and my regime is pretty simple in regards to how many meds and stuff I take I know that I could have been given alot more and some that are a hell of alot more time consuming :-).

Okay guys so these are my tablets that I take everyday.
- The bosentan which is the one with the green on the box has to be taken twice a day I take it at 7:30am and 7:30pm.  This I have taken since diagnosis and all I know about it is that it helps with oxygenating the blood and the lungs or something to that affect.

- Then the Viagra (Yes it makes me laugh everytime I say I have to take viagra, I'm really immature at times LOL) This has to be taken three times a day. I take it at 6:00am, 2:30pm and 10:30pm. The reason I take it at 6am is because it can't be taken within an hour of the Bosentan, don't ask me why it's just what the doctors told me and I'm a good girl and do as I'm told. Apparently it causes a reaction or something but they work in sync with each other, weird I know. I'm really not sure why I take this all I know is, is that it does something for my lungs. Didn't I tell you I don't ask many questions? LOL

- Then there's the Iron tablets, which are in the pot. Now I'm really lucky and only have to take one of these a day and I take it at 7:30pm. The reason I take this is because a side affect of the Bosentan is anaemia which I noticed pretty much as soon as I was put on Bosentan. Luckily it was only slightly below normal and therefore the one tablet does the trick but there are people that have to be on three and iron tablets themselves can have side affects.

- Finally there is the Warfarin. Now this thins my blood. The reason for that is when I was diagnosed they put a little device in my heart, which is basically a tube that keeps my Pulmonary artery open. The reason for this is when the pulmonary artery expands in a normal person it would open and allow more blood through and therefore more oxygen. The problem is with someone with PH is that we generally have thickening of our pulmonary artery walls and when they expand they expand inwards as well which means we can't get enough oxygen and in my case this lead to fainting. So the Warfarin thins my blood to make sure it can get through the tube. Now as you can see in the picture I'm on 5mg at the moment but this can change and to monitor this I have to have weekly blood tests called INR to see whether it needs changing. Mine needs to be between 2.0 and 2.5 the higher the number the runnier the blood and therefore I need to be on less mgs of warfarin and the lower the number the thicker the blood and therefore I need to be on more mgs of warfarin. Get it? don't worry if you don't I've been doing this 11 years and therefore know my stuff LOL.  

Okay guys so this little contraption is my Nebuliser now it despenses a drug called Iloprost or Ventavis whichever you prefer. This is the most annoying drug of them all. This doesn't stay in your system for very long. It's supposed to work in harmony with the Bosentan and the Viagra (sildenifil because I hate saying Viagra LOL). The only problem is it only stays in your system for 3 hours if your lucky. So I have to take this every 3 hours. I take it 5:15am, 8:15am, 11:15am, 2:15pm, 5:15pm, 8:15pm and if I'm still awake 11:15pm. Sometimes I swap and do the 11:15pm one instead of the 5:15am one.

Now when I first got put on this I did it at 2:15am as well, the doctors told me I didn't have to but I thought no I really need to give this a proper go. That did not last long let me tell you now LOL.

Once again I really am not sure what it does all I know is it's supposed to help me and I know it has to with my lungs because I breathe it in LOL.
When I first started it back in April I didn't notice any difference in the slightest but now I've been on it for nearly 4 months I've noticed a difference but a bad difference. If I'm late taking it my body KNOWS I'm late taking it. My breathing becomes laboured and I get a massive headache. I feel alot worse than before I was put on it. I don't know whether it's just revealing how bad I really was without it, I doubt it but it's possible. But when I'm on it I feel the same as I was before I was put on it, not better just the same.

I don't know if I'm making any sense to you guys but in my mind it does make sense LOL. Also my parents and sister agree with me when I've explained it before.

I have a hospital appointment at Hammersmith on the 20th and I will be telling them all of this then so hopefully it's just a case of upping the dosage or something. I have a bad feeling though they'll be telling me thats it's time to go on the Flolan and if it is I will deal with it then .
                                                                                     




 Right so these next two pictures are to do with oxygen. This first one is my portable oxygen cannister which basically means I can take it with me places for "just in case". So if I'm going somewhere and getting back to my house is a no no then I can have access to oxygen, incase my chest hurts or I'm finding it hard to breathe. I'm fairly lucky in that I don't have to be on oxygen all of the time.


This picture is my oxygen concerntrator. Now this turns the regular air in to pure oxygen. I got given one of these years ago and managed to get rid of it. But unfortunatley because I've been getting worse recently I had to get the ugly machine back.  Now my doctors would preferably like me on oxygen all night, but I decided years ago that I would only go on it when I needed it. If I go on it all the time I become dependant on it. There are some that probably think thats ridiculous but I found when I was on all night every night, I needed it more. So I weened myself off of it and now I only use it when my chest hurts or I'm feeling particularly horrible. 



So thats it guys, that is what my regime looks like and I hope it provides a little bit of insight into the life of someone with PH :o) 

Stacie xoxo

5 comments:

  1. Bless you stacie!

    Viagra - it relaxes your blood vessels allowing them to be more stretchy (is my understanding from one of my modules!) :P

    Is that o2 canister really portable? It looks big and heavy!!

    May I ask, what is the flolan and is it worst than the nebuliser (from what you said it sounds like it is)? I can imagine nebulisers are a pain as it is, my dads partner has to use one.

    Keep on writing :) x

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  2. Haha LOL there we go, I really should know more stuff all I know is it apparently helps me :-D.

    It is we can just whack it in the car (I wouldn't be the one carrying it LOL) but I have smaller ones as well I just couldn't be bothered to go down the stairs and take a photo of them LOL.

    Flolan is basically like Bosentan and Viagra and vasoldiolator but it works more affectivly because it has be given through a direct line into the heart through a line that would be near my collar boneish area LOL but you can't really be taken off of it which sucks.

    :o) xoxo

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    1. Oh I see! So I guess it is worse than the nebuliser as it actually goes into you. Let's hope that isn't needed! x

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  3. Just stumbled across your blog : ) Good to hear you're soldiering on; must be difficult for you. Thinking of you xx

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Thank-you for commenting <3