An Update From the Brompton

Lukey and Me!

This last week has been pretty difficult. Since being in hospital my lung function has actually declined a bit, but that can be explained by many different factors, which I hope will be reduced when the infection begins to subside further. At the beginning of this week the Meropenum intravenous antibiotic (IV) has been replaced with a continuous Ceftazidime infusion, which delivers the drug constantly. This is to basically keep the bacteria-killing levels high throughout the day, rather than it peaking and troughing with having the dose three times a day. I'm still on tobramycin and ciprofloxacin IVs as well as IV caspofungin (antifungal).

All of these IVs are wreaking havoc with my electrolyte levels, so have to have regular magnesium and potassium infusions to replace what has been depleted by the medication. I also need to have quite a lot of extra fluid to keep my sputum lose enough to cough up with the least amount of effort. This means I am attached to three different drips all day and night.

Sorry if you're squeemish, sub-cut terbutiline

As I have still been quite tight chested, I am also having terbutaline (a drug which opens up the airways) subcutaneously (a little needle underneath the skin of my stomach). However this could cause me to become more tachycardic (fast heart beat) as I'm quite tachycardic naturally, so that's yet another thing to keep an eye on!

I'm relying quite heavily on my non-invasive ventilator (NIV) as you can imagine, with my infection markers being high and so on. It's a bit disheartening to be so reliant on so much machinery, but at the same time I feel incredibly blessed to have such expert help available, to help keep me as fit as possible for transplant. I am feeling very frustrated that although some of my infection markers have dropped a bit (CRP is now 145) they are still far from ideal. Mornings are also so hard for me, as my chest just feels so tight and heavy with sputum. It basically takes forever for it to wake up. However, I must not let myself slip into the spiral of self pity and negativity, otherwise things are ten times as hard to face! I keep praying and hoping that my transplant call will come soon and although it's going to be another hard road to travel, it's a lot more hopeful than the one I'm on at the moment.

Me and my wires!

I did have a very exciting start to the week! ITV came in and filmed me as part of an organ donation campaign they are going to be running in February. I was very pleased to be able to do it, I felt incredibly unwell on the day of filming, so I don't think I looked my best at all! However, vanity aside, I really hope and pray that the message about organ donation reaches many during that week and people make the decision to sign up to the organ donation register!

Please remember to visit Rhod and Caroline's CF fund raising page!! Any donation gratefully received for a good cause!