Thursday, 27 September 2012

The Great Escape

Over the past two months I have watched many patients come and go on Foulis Ward and on Monday it was my turn to finally leave! Eight weeks was a personal best for me in terms of admissions, by no means a record, but still a long time. To add to the excitement of leaving hospital, we travelled in style... no I don’t mean in a limo, but in an ambulance with the blue lights! (Talk about a getaway vehicle!) This is because I am deemed a ‘high risk’ patient as I need to use my non-invasive ventilator (NIV) during the day sometimes. Therefore the technicians wanted to get me home as soon as possible so I could be settled and stabilised. This meant that it only took us an hour to get home through heavy London traffic and terrible road conditions! 

Drawers of drugs!
A lot of things have changed now. I am going to be permanently on intravenous antibiotics (IVs) – until I get a transplant. This is because the inhaled antibiotics are simply not enough to control the bacteria and fungus that grow in my lungs. The acuteness of the infection during my admission and the bacteria’s ability to become resistant showed that we needed to use ‘bigger guns’ to control the infection. The bacteria in my lungs, if unmanaged, can reach a ‘critical mass’ and can cause me to become unwell almost overnight. These continuous IVs will be cycled, so every two/three weeks the ‘cocktail’ will be changed, to keep the bacteria on their toes! This means more frequent trips up to day case at the Brompton to have various tests and be monitored after my first dose of the new lot of IVs. As a result of this, our kitchen is now akin to a small pharmacy, or drug den, if you will... In order to keep the drugs separate from the potatoes we have dedicated storage to store the abundance of medical kit, as this is now a long term situation. Being on IVs continuously is very different to the odd two weeks blast every now and then, mainly through the way we have to organise ourselves. During my admission fungal infection was also a problem. As I mentioned in a previous blog I was put on an intravenous antifungal drip, but to make this more manageable at home, I now take a more effective antifungal tablet. It had some rather interesting side effects when I had my first ‘loading doses’ I had rather severe visual disturbances. I am pleased to say that these have subsided!  

I am also on much stronger pain medication to help manage the chronic pain I suffer. This entails long acting morphine tablets and ‘break-through’ liquid morphine to manage the pain in between long acting doses. This type of care will be managed locally by the palliative care team at my local hospice. Discussing hospice referrals and the like is not nice to hear. I am under no pretences that my lungs are in bad shape and I am in dire need of a new pair, but to actually have referrals put into place make things seem more real. 

My oxygen requirements have also increased, I now need 4 litres a minute whilst resting and through my NIV and 6 litres a minute whilst exerting myself. I am so pleased that I am able to use nasal specs as I genuinely thought that I would be coming home needing to use a full face mask on rest. I do however need to use my NIV more in the day, probably for about 4-6 hours. I see this as a great achievement seeing as I was on the NIV permanently for a month of my admission and have managed to with some God given strength to rely on it less and maintain decent Sp02 levels (approximately 92%). I am slowly building up my exercise tolerance, but at the moment it's quite low. Luckily Luke's mum and dad have given us a Nintendo Wii so that should help me!

Just before I escaped from hospital, as my infection markers had reduced sufficiently I was given an iron infusion to combat the anaemia I recently developed. It takes a couple of weeks for the iron to be converted into haemoglobin, so later tests will establish how successful that treatment was.
After such a rough admission and being so unwell it feels like such a blessing to be home. There were a couple of times when I didn’t think I would be coming home, but praise God, I got through them. Not only by the work of the incredibly talented and caring staff at the Brompton, but through God given strength and perseverance. Having Luke with me when I was really poorly was amazingly helpful as he not only helped me physically with 2am physio sessions and helping me to the bathroom and the like, he was an incredible help emotionally. My faith in God has been vital as there were so many times where I wanted to give up – and even told Luke so, but my faith pulled me through. Although we have a rather busy medical routine now, I am going to do my utmost to enjoy home life! 

Reunited with Azlan the rabbit!

So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand. Isaiah 41:10


  1. So pleased you guys are home :) Keep holding on to the Hope we have in Jesus - I love that verse in Isaiah! He is with you! Thank you for being the inspiration that you are - I think your strength and faith keep others going when they might feel like giving up. Still praying for you x

  2. Hi Sammie

    I'm a friend of Fern's, I just saw her link to your site, you have a great blog! I was wondering if you have heard of Orla Tinsley, she's a Dublin writer with CF. She does a lot of campaigning over here, and she also has a book out, Salty Baby, which is supposed to be great. Thought it might be worth you looking up!

    Take care,

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  4. Glad to hear that you have been able to get home. I hope that the regime that you are on now will help keep you on the level while you wait for your call. Sending all my best wishes to you and your family.
    I pray that call comes soon:)

  5. So pleased you're home with your beloved critters and hubby! Even if it's not much of a change meds wise, at least you're dealing with it at HOME and not bloomin Foulis ward! Tea in proper mugs and no droning beeps ;-) Come on new lungs get a move on. Thinking of you lots! xxxx

  6. As ever an inspiration to us all and to me personally Sam . You remain in my Thoughts and prayers, god bless you, keep on fighting because I trust that our Lord will provide for you xxx