Sunday, 10 March 2013

Down, But Not Out!

I want to begin this blog post by apologising for giving everyone a scare! I cannot even begin to recall what happened to me during that time. I remember being really drowsy with my grandma the day before I fell into the deep sleep and on the day itself I remember it being ward round and Luke leaving the room. I then remember Mum being next to me, which I thought was weird because she wasn't coming up until Thursday... However it transpired that it was still Wednesday and she had hurtled up to London after receiving the telephone call all parents fear receiving. I wasn't really aware of anything until I began to wake up later on the Thursday. I was semi-conscious, it was all a blur. All I know is what Luke, Mum and the doctors told me. Also all the different nurses kept coming in to see me with clear relief on their faces.

I was so thankful to be able to celebrate my 28th birthday with my brother on the Friday of that week. I could just see the heartache etched onto his face from the days of worrying. The following day was my actual birthday for which my parents, grandma and Luke's parents came up to visit me. I was still extraordinarily tired and slept for a large proportion of the day, but I managed to open my cards and presents as well as enjoy a tipple of pink champagne and red velvet Hummingbird Bakery birthday cake!

Since then things have been moving along in peaks and troughs, but fortunately the blips have not been so great and I'm managing to use my nasal specs whilst eating and feeling comfortable on them, so perhaps next week I might try weaning off the non-invasive ventilator a bit. More recently i have had episodes of haemoptasis (coughing up blood). Not enough to need a blood transfusion but the frequency of it meant that I have been prescribed a drug called Tranexamic Acid to stop the bleeding.

The biggest news to report though is a little bit depressing. I have been experiencing excruciating chest pain in my left hand side for the last couple of weeks and after much investigation it transpires that I have a broken rib. Ouch! It also appears that i have a small hairline fracture on one of my right ribs too. This could have been caused by many things including the infection itself as apparently infections like to attack bone. Coughing, strenuous physiotherapy, my underlying osteopenia from long term steroid use, or most likely, a combination all of the above. This means that my physiotherapy has to be completely hands off. so I have a new 'cough-assist' machine which pushes oscillating air into my lungs and also 'sucks' when I huff and cough the sputum up. It's surprisingly effective (so far) and I really pray that it continues to be!

My CF team were hopeful that a nerve block could be used to stop the pain in that region altogether as they had identified the source of the pain, but it was far too risky in the eyes of the anaesthetist, as the injection to administer the nerve block could cause a lung collapse and that's the last thing I need! So I'm taking a subcutaneous injection once a day for 7 days called Salmon Calcitonin which is a hormone that enhances the knitting together of bone. After that I'm going to be put on lots of other drugs which will enhance bone healing.

The devastating fact of having a broken rib is that I cannot have a transplant whilst it is broken (Due to the risk of bleeding during surgery). So I am 'deactivated' for a short time. My consultant hopes that it will only be for about 3 weeks or so, but needless to say I am gutted. Last night I was completely despondent, but today I feel far more philosophical about it. What if we hadn't pushed the team to continue to look for a fracture? Had I received a call, things may have gone very badly for me on the operating table. I do believe that God puts things into place for a reason, so I can only take hope in the fact that once my rib is healed and my bones have been thoroughly checked out again I will be fit for transplant and hopefully my call will come. 

Here are some X-rays to illustrate my latest war wounds!

Right side fracture
Left side fracture
Whole chest


  1. Sam, I know that you are a fighter to fight with every circumstance in life. I know it is tough to persevere but you can do it. We are continually praying for you. Sanjay

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