24.1.13

Pedal Stacie Pedal...


Hey Blogland,

Well it was Hammersmith day today, and for those not in the know, Hammersmith is the hospital where they deal with my Pulmonary Hypertension. It had to be rebooked for today because of my chest infection a few weeks ago.
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So today I had to go by myself and although you may not believe it what with me being 22 but I have never been to one of my Hammersmith appointments alone but today I went solo. All my  family members were working and my dad had just come off of nights so he was really tired so really couldn't come with me so I decided to go by myself be a bit independent. Now this is quite a big thing for me because I suffer a little from anxiety. Not a lot because my routine never differs that much so there’s really no need for it to. But today I was like NO! I’m not going to rebook an appointment just because someone can’t come with me. This wouldn’t have happened if I hadn’t have been getting the hospital transport but still a big step I think. It’s all about predictability for me, I need to know that I can get to and from somewhere with no problems, and know that I’m not going to be late. If I’m going to be late for something I would rather just not go at all because I start to panic.

Anyway moving on from that little tangent today was my exercise test (on a bike), Echocardiogram scan, ECG and all the regulars. They did the ECG, bloods, height, weight and BP all fine although my BP was a little low but I put that down to the fact that I was starving lol.

Before I went for my exercise test I had a discussion with Mike, Chantelle and Rachel (my doctors) because I had to tell them that I thought the Iloprost isn’t working, or at least I cant feel it working and if it’s not I don’t want to do it anymore. Because it really is a hassle that invades your life and when I first started it I would do it 7 times a day and was really good with it even though it gave me migraines and really hurt my chest I would do it. Now I have become fed up with it they are lucky if I do it 5 times a day. So we decided that I would do the exercise test today and see whether the Iloprost is actually doing anything because for all we know my heart might be responding to it but I’m just not feeling the effects of it. In which case they would prefer I stay on the Iloprost. Now the next position is the one we generally all think it will be is that it isn’t actually doing anything, in which case I’m causing myself unnecessary pain. If this is the case we have two options available No.1 stop the Iloprost and put me on Flolan which would be put through a direct line into my heart or No.2 take me off of Iloprost and then do nothing. Neither option is very appealing to either me or the doctors. Option 1 is a 50/50 toss up in all our opinions, it could go either way it could work and I could feel so much better but I would have to sacrifice a few things which I love, a lovely bath being no.1 on my list of priorities lol. Or it could go the other way and I could have a stroke, that could result in death, paralysation, or I could be fine we just don’t know which is why that decision is a very hard one for me to make. Then there’s option 2 which is just as unappealing, it would mean we would be actively not treating me, this would mean that they would know that my condition would get worse because we can’t up the dose of my other meds to try and stop its progression but we wouldn’t be adding anything either so it would continue to get worse whether we liked it or not.

So that decision will be very hard for me because I actually have no idea what I would do. Do I decide to take a drug that could help but has a very high risk attached? Or do I actively not do anything and just hope that my call comes in time? It’s 6 of one half a dozen of the other. What to do Hmmmm….

The exercise test went well though, or when I say well I did worse than last time but you know I didn’t die or anything lol. For those that don’t know what happens in a exercise test they basically attach probes to you to monitor heart beat etc. you have a BP cuff on and O2 saturation thing on. They then attached a face mask on making sure it was air tight so that no air was escaping or getting in so they can feed you on oxygen. You ride for as long as you can and then when you’ve reached your limit you get to stop and then they take arterial bloods from your wrist. Arterial provide A LOT more information than a regular blood test would because it’s coming direct from the heart and literally seconds after massive exertion on my body so  there’s a lot of information to get from that type of blood.

After that I went and had my echo which in layman’s terms is a scan of my heart it’s a very detailed one that takes about an hour and half on me because of all the things within my heart but I basically get to dose on a bed for ages lol.

I’ll get the results and stuff for that soon and as soon as I know I’m sure I’ll post about it :P

I had quite and exciting phone call today (not my transplant call lol) which I can’t fully explain just yet but its exciting :D

OOOOOoooooOOOoooo and guys I reached 100 followers!!!!!! How amazing is that?! I may have to do something to celebrate it, I will give it a think.

I am shattered though and I will blog again soon blogland :)

6 comments:

  1. I hope you feel better soon and congrats on 100 followers!! <3
    Lots of love from
    Annabelle
    TheCurleyGirl
    xoxoxoxoxoxox

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    1. Awww thank-you Annabelle. I'm actually not feeling that bad as it goes its just my general condition as a whole is worse than doctors and me would like it to be. Being on the transplant list you have to be on-top of your condition all the time which is the predicament we face at the moment :).

      xoxo

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  2. Hi,
    Sending you good, positive, warm-weather thoughts from Los Angeles!

    Lori

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    Replies
    1. Thanks Lori, i think the warm weather thoughts are working the snow has disappeared and we're actually getting above 0 degrees lol xoxo

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  3. Please follow me and read my posts as I am new to blogging and Bloglovin xoxoxoxo

    ReplyDelete

Thank-you for commenting <3