Let positivity reign!

Hey Blogland,

I cannot express into words what a relief today was.

The past 3 days have been sooo stressful, I went to work on Saturday and even they noticed that I wasn’t myself and I never let my medical/personal issues interfere with my cheerful demeanour at work but I just couldn’t do it. Put on that mask that I put on for everybody to see. So for the past maybe 2 weeks I haven’t been myself trying to decide what I should do for the best and Friday really was just the straw that broke the camels back. So Thursday, Friday, Saturday and Sunday night I think I got 2 hours sleep on each night and I’m someone who can get by on zero sleep if I have to if it’s a one off but 4 consecutive nights of literally zero sleep is a killer.

This morning I was actually worried I thought I was going to go in and see my consultants and get a massive telling off for stopping my Iloprost but to my surprise my Doctor was completely on my side. We had what I would call a very “grown-up” conversation and he listened to everything I had to say and he told me that he totally agreed to me coming off the Iloprost so long as I didn’t feel worse for doing so. Which I proceeded to tell him it was in fact the opposite I still have chest pain but not the crippling kind that I was getting after doing my Iloprost. I’m still not well it’s not like stopping the Iloprost has by some miracle made me better it has just made me feel less ill, does that make sense? He also went on to say I lasted a lot longer than most do on it which is was surprised at because he thought I was going to stop back in September.

We proceeded to talk about my transplant progress, which obviously there is non lol. Then he asked when I was next seeing Papworth and I told him that I saw them on Friday and I told him what happened when I told them I had stopped the Iloprost. Once again to my surprise he was completely on my side, he told me that it was ridiculous that they would think that I have no discipline with my medication, and he then asked me if I had met this doctor before to which I said no. Then that seemed to make perfect sense to him, he continued to say that if the doctor had taken the time to look at my notes he would realise that I had been taking all my medication as specified by my doctors since I was 11 years old, and if he knew anything about PH and Iloprost he would also realise what a feet making it to 10 months on the stuff was. I really felt like I was in an alternate reality because I couldn’t believe that the doctor which I always thought never really got me was agreeing and saying almost everything that I had been saying to myself for the past 3 nights.

He told me not to worry and that he would be giving Papworth a ring to reassure them that I am an extremely reliable patient and I always do as I am told and I had been advised that I could come off of my Iloprost if I felt I needed to do so, so it wasn’t like I was doing it completely against medical advice as I stopped it as I was advised to do, slowly.

The conversation then took a turn to what I should do next in regards to my medical treatment, and basically he told me that there was no other treatment option besides doing nothing, in which case I would probably be dead pretty soon or do the Flolan and he went through all the negatives and positives and I just felt a lot more at ease about it than I ever have done. I told him that I have been avoiding it since September to which he replied “I Know!” LOL because that is when the doctors really wanted me to go on it. He then continued to explain that he had to wait for me to be ready to go on it because if he forced me to do it then I probably wouldn’t have been careful with the drug treatment or sterile or any of the other stuff you have to be with Flolan. He had to wait for me to want to go on it because then I was more likely to do everything I need to do to make sure I don’t die with it. He tried to explain it in terms of transplant, he knows transplant patients who really wanted to do it and wanted to get better and wanted transplant to work desperately and therefore after their transplants their recovery was amazing they bounced back with vigour and they got to really live. But then there are the other patients who just go on the list out of obligation they feel like they just have to do it because that’s the next step, they don’t really want to do it. They have their transplants and although yes they don’t have PH anymore but they aren’t living the way they should, the way their transplant really does allow them to and a lot of these patients end up rejecting. He said he wanted me to make the choice to go on the Flolan because he didn’t want me to be one of the people who don’t do so well.

So after today I feel sooooo much more positive and just relieved. My parents and I have to go back in the next week or two where they will give me some pumps to take home with me to get used to and get to grips with and then we will arrange a date where I will have the pump fitted. It’s really scary but I think it will help and hopefully improve my much diminished quality of life.

Ahhhhhhhhhhhh (sigh of relief)

In other news, or actual news should I say, I was in my local newspaper last Monday and today I have updated my features page and you can go check them out there or just click here to get diverted there.

I have a few exciting posts coming up soon, my bedroom make-over and a foundation review as well of my most recent foundation purchases MAC studio sculpt foundation and my Loreal Paris Match perfect as well :).

Thanks for reading guys and I hope I didn’t bore you too much.

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Lots of love guys and thank-you for all the support it really means a lot!


  1. I am glad your mind has been put more at ease and never say never, you just never know *hugs* xx


    1. I know me too, it only took me 7 months lol. But once I've made up my mind there it generally stays it's just the deciding part I find hard lol xoxo

  2. Sorry for such as a short comment to such a lovely long post, but I just want to say that I'm glad thing's are looking brighter, must be so wonderful x I bet it's really going to help :)

    1. I don;t mind how long a comment is, any comment is lovely to see :). Thank-you it really is a wonderful feeling and like a weight has been lifted. I hope it helps too :D xoxo

  3. Good choice of quote! Now singing the entire Les Mis soundtrack in my head! There is always a light at the end of the tunnel :)
    Lori x

    1. Hey Lori,

      I love, love, love your blog! I will make sure to keep reading it!

      And thank-you as well, there certainly is always light at the end of the tunnel even if you can;t always see it at the time, last week I couldn't and yesterday, there it was :)


  4. I've been wondering if you would end up going on the Flolan or not since I first read about it on here. It must have been a massive decision, weighing up the risks vs. the benefits and I'm glad you didn't let your fear hold you back. As your Dr said, being brave and wanting to push forwards and get better really will help (I'm a big believer in positive thinking having a huge impact on someones recovery).

    Just remember this quote from The Princess Diaries (don't ask, I caught the second half on TV the other day): "Courage is not the absence of fear, but rather the judgment that something else is more important than fear. The brave may not live forever, but the cautious do not live at all". Hopefully this will help you feel better :)

    Glad your feeling more positive again though, seems like you doubted your own judgement a bit after Papworth but you've received the reassurance you need from Hammersmith. Don't let people get you down, at the end of the day no one knows yourself better than you.

    1. Me too Phil I won't do something if I don't think I can be positive about it, people I've encountered over the years, if they have a negative attitude don;t seem to recover quite as fast or as well as someone who is positive about it.

      The Princess Diaries? LOL I love that movie! I do hope though that by making the leap I'll be able to do more things because atm that just isn't happening. That's a good quote though Phil and certianly one that should be given to anyone considering a transplant :D.

      THANKS PHIL!!!


  5. i am so excited i found your blog! i had a kidney transplant 18 and 1/2 years ago. much love to you!!!


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