Friday, 15 February 2013

It's a Long Hard Slog!

I don't wish to bore you with a long detailed update, but I know that many of you like to know how I'm getting on!

Last weekend was a bad one. Things took a turn for the 'worse' on Friday. My chest pain had become so unmanageable that I was put back onto a morphine syringe driver. However, the good news to accompany this is that subcutaneous anti-sickness drugs can also be added, so all my feeling of nausea are gone (yay) and I am generally able to eat well. My sputum remained thick and stubborn, so we decided to increase my usage of a drug called DNase which breaks down the sputum at a molecular level, making it easier to cough up. I also began using saline to hydrate my airways. In addition to this, physio was increased from three sessions to four slightly shorter sessions. Needless to say this was exhausting, so time spent not doing nebulisers or physio was spent sleeping on the NIV. We got through it! I felt so much better by Monday which was good, as it meant I could enjoy spending time with my brother, Ian, when he came up to visit!

However, I did continue to feel tired and when Mum came to visit on Tuesday I spent quite a lot of the time asleep (sorry Mum!). However, it transpires that there was an explanation for this... You know my lovely CRP infection markers had come right down to 40? Well Tuesday's tests showed them to have jumped right back up to 140! Grrrrrrrrrrr!! Stuuuuuuuuupid CRP/CF/body! Therefore I had another change of IVs on ward round (only one of the drugs, so I'm now on Meropenum, Colomycin and now Septrin). Again it's going to be a case of waiting and seeing whether this combination works. Obviously I'm annoyed, but we'll have to just wait and see if this Septrin IV kicks some bacterial butt! Oh, and nebulised Tobi has decided to make me tight chested, so that's a no-go for the moment!

Another recent development is that Luke has now started staying with me (glamping in Chelsea, you know!). This has helped me immensely and he just travels to work from the hospital as opposed from Eimi's. Hopefully towards the end of my admission when I am feeling stronger he can go back and enjoy spending time with his friends! An illustration of how helpful Luke is here is that last night I had a particularly poor night, for some reason my sputum decided to mobilise itself at about 2.30am. It just meant with Luke being here, he could help me clear and just generally comfort me and I hacked up about half a sputum pots worth of joy! Obviously had Luke not been here I would have been wonderfully looked after by the nurses and on call physios, but Luke knows my chest so well (sounds dodgy!) that we could just get on with it efficiently and as quickly as possible.

On a bit of a different note, my diabetes is being a bit of a pain. Obviously my steroid dose is still high, so that plays havoc with blood sugar levels, but I've been getting high readings first thing in the morning which isn't great. It's an indication of the progression of my CF related diabetes. So I will need to now take some long acting insulin at night and see if that helps. What worries me about other things going 'wrong' is that is I so desperately need new lungs, I don't want anything else to start failing before I (hopefully) receive my transplant!

I'm so overwhelmed by people's responses to the ITV Meridian news piece that I featured in on Wednesday, as it makes you feel quite vulnerable putting all your emotions out for the general public to see! Thanks for all the lovely messages and I just hope and pray that people are encouraged to sign up to the organ donation register and tell their loved ones their wishes as a result of this huge ITV From the Heart campaign. The last figures I read were that 100,000 people have signed up since the beginning of the week!

I must also urge all of you to visit Rhod and Caroline's 'Team End of my Tether' fundraising page! These amazing people are running the Reading half marathon to raise money for the CF Trust, so any donation will be gratefully received!

I am still hoping that my call for my double lung transplant will come very soon. It just makes me sad that all this fighting and effort to beat this exacerbation is basically what my life is now. Just treading the water until I get that call. But I will do it with a smile on my face and as much positivity as I can muster!

1 comment:

  1. Hi Sam,

    Will here at Radio Berkshire. I've sat here and pretty much read every single blog post! I didn't set out to, I came on looking for a contact for you and got sucked in! I'm running a series called 'The Greatest Gift' that looks at people's donation stories. We ran it in Oxfordshire before Christmas and the response was overwhelming. We wanted to tell your story. Could you or Luke pop me an email at as it would be good to talk. Ignore my user name it's a long story!!