|Luke and I celebrating!|
It has certainly been a hectic week for me. Luke has finally finished his doctorate which I am so proud of. I know those of you who follow me on social networking sites have seen me go on and on about Luke’s doctorate ad nauseam, but there were many times over the last four years where I truly questioned whether I would be here to see him complete it. After feeling a little unwell earlier in the week, I fortunately felt well enough to be driven up to Oxford (by Mum and Dad) to meet Mat, one of Luke’s colleagues, who drove me to the lab (and taxied us about Oxford much of the evening!). Here we enjoyed a champagne reception and some speeches, after which we returned to Magdalene College, were Luke’s supervisor had booked us a rather sumptuous suite of rooms to spend the night! It was here we met our only trouble of the day... Despite booking holiday oxygen weeks in advance and receiving a confirmation letter detailing the equipment we could expect to receive, no oxygen had been delivered. Upon calling the company there was apparently no record of our booking on the system! Very strange. Nevertheless the company sent out an ‘emergency’ concentrator, back up cylinder and portable cylinders, so all was resolved in the end! We were then able to enjoy Luke’s celebration meal which was delicious; unfortunately Luke wouldn’t let me take any photographs of my food... of course it’s not the done thing! I’m so grateful to Luke’s supervisor and colleagues who went out of their way to make it possible for me to participate in the celebrations!
|On Lind Ward, getting my line in|
After all that excitement it was back to life with an exhausted and ill-felt bump. It was CF business as usual and I was seen in clinic very shortly after the revelry – talk about sublime to ridiculous. Despite feeling grotty, I am very pleased to report that my team at the Brompton did not wish to keep me as an in-patient after my clinic appointment on Tuesday. However, we did decide that I should have a course of intravenous antibiotics as I am beginning to show the symptoms of a good old chest infection... Annoyingly I have lost a bit of weight, so I’m down to 46.2kgs, which although isn’t too awful it takes my BMI down to 19.7 which is creeping too far away from my ideal of 20! Surprisingly my O2 sats were 91% which I was pretty happy with, as they usually choose to dwindle around the 88% mark! My lung function was down ever so slightly in terms of the individual numbers, but as a percentage it remains stable at 17% (FEV1). The doctors didn’t think there was anything that could be added to my routine that ‘Team Yates’ (as we’ve been dubbed!) can’t provide at home.
|My 3 times daily IVs|
We had a discussion about what the next steps regarding maintenance inhaled antibiotics should be and came to the conclusion that any testing would be obscured by the chest infection and would therefore be pointless. As I have previously mentioned, Aztreonam makes me incredibly tight chested, inhaling TOBI causes high levels of the drug to build up in my system and Colomycin is just not as effective in its nebulised form for me anymore. We will readdress that problem at clinic on the 31st July, when hopefully my chest will be behaving itself a bit better! It may even be that we can revisit Aztreonam, as I could have become irritated by it due to an infection; it’s really going to be a case of try it and see. (Obviously in an observed and monitored manner!) The intravenous antibiotics that I have been given are Meropenum and Colomycin. Although Colomycin doesn’t seem to work for me in a nebulised form, it should work much more effectively in an infused form as my lungs don’t have to deal with it. I am also on an oral antibiotic called Co-Trimoxazole. Hopefully this three pronged attack will be effective. Having home IVs is no picnic though. It requires a high level of dedication as these potent IVs need to be given three times a day. Luckily one of them (the Colomycin) is delivered to us in a pre-drawn up ‘bladder’ which infuses itself over half an hour. The Meropenum however, needs drawing up from scratch and it is a real nuisance to dissolve! Also, it is so important to keep all surfaces, hands etc. Incredibly sterile, as these drugs are going straight into my veins – we do not want to risk getting an infection that way!
|Luke giving IVs to an exhausted Sammie!|
Thinking back to ‘whether I will be here or not in x years/months time...’ even when I was well with my CF, I was never the sort of person who made ‘five-year-plans’, but these days I do question whether I will ‘see’ certain events, next Christmas for example, my next birthday? However, you just CANNOT live like that. For one thing, nobody can truly be certain of their future, without wanting to sound macabre, who can know what is around the corner? Just because I think I have some vague idea of the time I’ve got left I can’t let it rule me. That is why I get so excited by celebrating the things in my life – Luke’s doctorate, our 5 year wedding anniversary to name just two! It’s at times like these I really value my faith in God and although it’s far easier said than done, I try not wonder why some prayers get ‘answered’ and some remain seemingly ‘unanswered’. 2 Corinthians 4: 17-18 ‘For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but what is unseen. For what is seen is temporary, but what is unseen is eternal’. I am thankful for what I have been blessed with and take each ‘milestone’ that I reach as a blessing. If I am meant to have a transplant and do eventually get my call I will be so very thankful, but I’m going to try my hardest not to dwell on it and as I always say, live my life, as it is, to the full!