Monday, 6 August 2012

Day 6... Room 18

Me and my brother!
I can’t quite believe that I’ve been in hospital for nearly a week. I thought time was meant to fly when you’re having fun!!?? I have had many visits from lovely friends and family which has helped the time go much quicker than it would have! Being in hospital during the Olympics has had it's perks, as so many people who would not have ordinarily been in London have been able to swing by to see me on their way to the games! Also, the increased frequency of the trains has made Luke's travel to our friend's house with whom he is staying (due to her extreme kindness) a LOT quicker!

Walking unaided is overrated!
In all honesty, it has been a very slow process as it is whenever my little lungs take a knock these days. My oxygen levels (SpO2) are holding on at a respectable 96%-99% whilst on the Non Invasive Ventilator (NIV) with 4 litres of oxygen per minute during both rest and activity which is positive. I’m feeling more able to spend time on the high flow oxygen mask and although my SpO2 is not great on it yet, at least I am feeling less dependent on my NIV which means I have more freedom whilst eating, to nip to the toilet and to take general breaks from the machine every now and then.To be honest relying on breathing through a machine hanging out of ones mouth or with a mask strapped to your face is not exactly conducive to an easy life!! I am hoping that my SpO2 will also improve off the NIV as my restricted airways are sorted out by the various medications I am taking. 

Today the doctors have reduced my steroid dose so I’m going to come off the IV steroids and begin a somewhat higher dose of oral prednisolone, which in time I will also be weaned down from. A major plus side to this is that the water retention that I have been suffering from will reduce once my steroid dose decreases! On admission I weighed 46.6kg and now I weigh 55kg... Wish I could say that it’s amazing weight gain by me, but no... just useless water!! It’s really quite uncomfortable, but being able to move around does help the distribution of the water and it is a side effect that I know will go in time! Luke thinks it looks cute, I do not agree!! I’m also suffering from low potassium levels so am having those watched carefully too, but we think these were lowered due to the large amount of fluid I was pumped with on admission... Watch this space!

Unfortunately there is not really anymore information to add at this time. I really really need that call from Harefield to come, whilst at the same time I am thinking ‘could I maybe fight this blip and hang around for another few months/years of waiting for a nice new pair of lungs?’ Only time and patience will really tell! It’s only been 6 days, so perhaps I should just sit back, chill out, enjoy the Olympics and let the doctors do the worrying for me. Oh, and most importantly, leave it all in God’s hands!  

Keep spreading the word to sign up the Organ Donation Regsiter!


  1. Sam,
    Quite simply I think you are brill!!

  2. Hi are you using a mouth piece for your bi pap? I had a pressure face mask which is much more comfortable x

    1. Hey Kirstie!
      Yeah I do use the facemask too, I just like to use the mouthpiece sometimes as I'm a bit of a talker, lol! However, had a bit of a blip the last couple of days so stayed on the mask a bit more which, as you quite rightly point out, is more comfortable!! xx