Thursday, 13 September 2012

Plodding On, Slowly but Surely...

Oh hey! I do apologise for it being all quiet on the Western front as of late. To be honest, initially there wasn’t a lot to report. I was pootling along nicely for a week or so after changing to my new room, but then my infection started to get a little worse again... Grr! When this happened I wasn’t really in the ‘right place’ to write a blog, or share my story. I felt a ‘bit’ disheartened; as if I’m going to be stuck in this perpetual hospital hell until I am fortunate enough to get called for transplant or if the worst should happen. Despite this little blip I was still gaining strength and compared to the ‘blips’ I was having at the beginning of my admission, I was coping with this one physically much better. After yet another Intravenous Antibiotic change things have settled again and things are going in the right direction again. I have to admit, I say this with much trepidation as I no longer feel that I can trust or even anticipate what my body is going to do next.  

It has not all been doom and gloom though. My sputum production (nice!!) has been much less and I have felt much better within myself. The physios have provided me with a Nintendo Wii which I’m using as part of my rehabilitation programme in order to build my muscles back up to what they were pre-admission as well as to keep them fit for transplant should I be lucky enough to get ‘that call’. I also have a Wednesday treat to look forward to each week, which my physios have christened ‘Wicked Wednesdays’. We’ve frequented many a pub, as well an ice cream parlour or two! I’m so past feeling self conscious being out and about on my Non Invasive Ventilator (NIV). If I had hang ups about it, I would have been stuck within the same four walls for the last 7 weeks! My treats are no longer confined to Wednesdays though. As I am able to cope with up to an hour off my ventilator, Luke and I are allowed to escape on our own as long as we are within 15 minutes of the hospital - if something were to go wrong with my ventilator there would be enough oxygen to use a high flow mask to quickly scoot back to hospital! So now there’s no need to go out armed with a back up NIV and a very heavy battery (car battery-sized) to operate it!
Wicked Wednesday at Scoop!

Pedicaure from the lovely Mrs. Baghaw!
Thai Takeout!!
Wicked Wednesday at the pub!
Another positive step is that I no longer require a morphine pump. I am on a long acting morphine tablet twice a day, which delivers the same dose as the pump, but it is a far less invasive treatment and in all honesty, my poor stomach was really suffering with being so prodded. In addition to this, my stomach often gets incredibly bloated overnight from the use of the NIV (particularly if I eat late) so having a subcutaneous needle under the skin with an incredibly taught, bloated drum of a stomach was not pleasant! I can still take ‘breakthrough’ doses in the form of subcutaneous injections should I need them. 

I have probably missed loads of things that have happened, but having been in here for so long, everything sort of merges into one event! I am disappointed that I will most likely be going home with a large dependency on my NIV and continuous intravenous antibiotic drugs. It just makes it so much more patent that I am in dire need of a lung transplant. I hate the fact that my lungs aren’t working mechanically very well anymore, in as much as they retain CO2 and don’t take in O2 efficiently and that I have to rely on a machine to do this for me. It isn’t as if I’m even just using my NIV to give my lungs a rest, if I do not use it when I sleep (or for most of the time at the moment) I get the most horrendous headaches - although that is trivialising it somewhat. We have had the misfortune of not connecting the oxygen to the ventilator for a short time (something we will never repeat) and during this period my oxygen saturations plummeted to 38%! This made me feel *very* unwell and turned my skin grey and if this had continued for any length of time I may have slipped into a coma (eek!). This glimpse of life without a ventilator/oxygen makes me thank God for modern medicine because without it I wouldn’t be here. Of course now more than ever I am praying that I am fortunate enough to get a transplant. I just can’t wait to go to bed and snuggle up with my Luke and fall asleep without a crappy facemask and reams of tubing lying between us. I do grieve for my ‘old’ life, of being a teacher and enjoying an active social life and volunteering in church. However, I am also incredibly grateful that I had those opportunities in the first place – that I was well enough to complete my degree to a high standard and teach for two years. I was also well enough to have the wedding I’d always dreamed of. So whilst I often sit here feeling a bit dejected, I do remember the blessings that I have been given.
Our wedding!! 07.07.07

At Winchester Cathedral for my graduation in 2007!

As I have said many times, we don’t know how long we have on this earthly plain so although I have had a bit of a moan in this blog about how sad I feel, it isn’t a feeling I like to hang onto. I do still have faith and trust in God. Although it might seem that he has abandoned me, or isn't answering my prayers in the way I *want*, I take comfort in knowing that He is with me through my suffering. Joshua 1:9 Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go.”


  1. Keep going darling, you will get your old life back don't settle for less, you will get them lungs!! There just waiting for you I know they are you deserve everything!! Keep as positive as you are babe your so strong and so glad your able to get out for a bit with or without your niv! Your very lucky to have Luke, and he's very lucky to have such a strong lady like you! Xx

  2. Great photos in this post, Sam. I am particularly jealous of the one of you and your brother (?) eating Thai food. This might be something to do with the fact that I am currently famished.

    It must be an impossibly tough and confusing road you're on. You're not alone. Take care.

  3. I am praying that God will hold you in his grace throughout this journey. When you get your transplant all this you are going through now will be a fading memory,that you can share with others to give them hope too.
    All my best wishes x