Tuesday, 22 October 2013

Palliative Care Again

So I had an appointment with my palliative care doctor today to try and get some good pain killers for my chest pain. She didn't really know what the chest pain was but agreed that it was probably my pulmonary hypertension. Whether it's the effect if the pressures in my lungs or the effect of my lungs having to work harder. She did say it could be the iloprost but I'm not sure because the pain doesn't seem to get worse after I take it. She said it could be something to do with the stomach also because the pain is right at the bottom of my lungs so it could be something else. You have to be careful not to get fixated on the lung disease and just assume it's the lungs. I've had problems with my abdominal organs before now. 
She didn't get any tests done because I'm going up to Bristol early November and it's best not to have too many x-rays if you can avoid it. They aren't dangerous really, but when you've had at least two a year for the whole of your life, the radiation starts to mount up a bit. There's no point having one in Gloucester for them to do new ones in Bristol in less than three weeks. 
Anyway, she offered me a man made version of the oramorph, which tends to give people less side effects than the conventional form. I haven't tried it yet cause I have to drive back to Bath this afternoon and I don't want to risk it making me feel too drowsy to drive. There are lots of options if that doesn't work. It's just a case of finding the right painkiller for me. I'm glad I'm starting to get sorted on the pain killer front because I feel like my chest has got worse in the last few days. I'm hoping this new morphine is going to work. I'm falling a bit behind on my uni work. I think I'll have to spend tomorrow sending apology emails to all my tutors as I've missed a whole week of lectures now and I haven't recuperated at all. My palliative care doctor couldn't really help me on that apart from making sure I get a good night's sleep. Trouble is my pacemaker isn't very good at slowing my heart rate down enough to sleep. She said that was normal though so at least I feel less weird now. I've hallucinated whenever I've tried sleeping tablets so I'll just have to stick to camomile tea. 
I'll keep you posted on whether the new morphine does the trick.
Thanks for reading :) 


  1. Hi Sara,
    You're awesome and such an inspiration to everyone else. I have a VSD which isn't congenital, I got it as a toddler. Because of that I ended up with PH too, which made the possibility of surgery fatal for me. Anyway, I'm turning 22 now and have been blessed to have some amazing doctors taking care of me with some fantastic medications. I live in Mumbai, India and have just graduated from college. I do most things as any other normal person would, but yes I am restricted from undertaking any major physical activities due to the fact that I get tired too quickly. Because of my health condition, I have some trouble gaining weight, even though I'm a huge foodie, and the colds and coughs come too frequently. Other than that, life is pretty good.
    Reading your blog made me feel really motivated as I always thought this condition is very rare and there must be no one who would understand what I've been through. Thanks so much for sharing your amazing journey so far.

    Good luck with all your plans and may you continue to shine bright with positivity.

    Best wishes,

    1. Thank you for your lovely comment. I'm so glad people like me are finding and reading my blog.
      I'm glad to hear that you've got such a good team of doctors looking after you. We are exceptionally blessed here in the uk with our health care but it's very good that doctors in other countries are specialising and learning about PH too because we could all do with a good cure.
      I have trouble gaining weight too! I eat like mad but never seem to gain any weight. But it is nice to be able to eat what I want and not worry about my weight.
      I'm so happy my blog has been helpful for you. When I started writing it I said if it touched just one person it will have all been worth it. So thank you for being one of those people.
      Good luck to you too!



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