Fit for What?

Reflecting on my visit to Harefield Hospital for a routine transplant assessment clinic, it was overall a positive experience. My x-ray, ECG and ECHO were more or less unchanged from 6 months ago and my blood test results and the results from various other examinations indicated that everything else is ticking along in a stable manner. The staff at Harefield are incredibly positive, speaking of when my transplant will happen, rather than if. However, rather than feeling relieved and satisfied after said appointment, I was instead feeling dejected and anxious. 

The first reason I think I felt this way was due to a change in one of my nebulised antibiotics. I usually nebulise an antibiotic called Tobramycin (lovingly referred to as Tobi!) which the bacteria in my chest are particularly sensitive to. However, this drug has some particularly nasty side effects ototoxicity, which in essence is damage to the ear, being one of them. I was suffering with a fair amount of pain in my ears and low level hearing loss. As I have discussed in previous blogs, other inhaled antibiotics have become less and less effective over time and it’s really only Tobi that has any noticeable effect on my chest. The Brompton sensibly suggested that I try having just 2 weeks off the Tobi and nebulise Colomycin then return to Tobi for a month, and cycle it that way. This would give my little ears a break, as well as stop my kidneys from becoming affected by the drug too. A few days into my Colomycin week, I already started to feel less well. I was tired more of the time, struggled to wake up in the morning, had no appetite and had a more productive cough. I powered through these symptoms and then restarted my Tobi slightly earlier than I was meant to. Within 3 doses I was a ‘changed woman’ (Luke’s words!) and now am feeling perfectly fine (for me!!) and have returned to my usual level of social activity and so on. Whilst I am pleased that I have returned to ‘normal’, I am beginning to worry that potentially Tobi will become less effective and what will happen then? 

Secondly, I have been feeling more and more like a burden to my family recently. Perhaps this was exacerbated by feeling unwell while using Colomycin rather than Tobi. I don’t need to reiterate here how my life has changed over the last few years, I’ve discussed this in depth in other blog posts, but I just have this sense of desperateness stemming from my intense desire to get a transplant and beat CF. I suppose I am just feeling the strain of waiting. According to the NHS Blood and Transplant statistics, the average wait for a lung transplant is 519 days. This is about 18 months. I have been waiting for 2 years and 3 months. I know that many people have waited for a much longer time than me to receive their gift of life. I know of one person who waited 4 and half years! Conversely I have heard accounts of people waiting weeks for a pair of lungs! I also know of many people who lost their fight with CF before receiving a transplant. There is no way of even speculating how much longer I will have to wait. I am very fortunate not to have deteriorated significantly since being listed for transplant. Nonetheless I am not so naive to believe that I can just wait for an indefinite amount of time. According to an article published in ‘CF Today’ ‘between 20 and 30% of people with CF on the waiting list for new lungs will not receive a transplant.’ I have always suspected that my wait might be a bit longer for two reasons – I am of a small stature and my blood type – O negative. O negative is not a ‘rare’ blood type per se, but it is a tricky one regarding transplantation. It is the universal donor, but I can only receive O negative type lungs myself. (Click here for more explanation!) Thus meaning I have a reduced pool of organs available to me.

Me and Beth at my wedding! 07.07.07!

I’ve stopped thinking of keeping myself ‘fit for transplant’ – don’t worry! I’m not giving up! Rather than thinking of this unknown goal, I aim to focus on ‘keeping myself fit’ for more tangible events. For example, a couple of weeks ago I went with my best friend Beth to her bridal dress alteration and to try on my bridesmaid dress! I was so honoured to be asked to be Beth’s bridesmaid, as it meant I could return the favour, as she was my bridesmaid! This is a real goal for me to aim to ‘keep-fit’ for, only 57 days to go! I have many lovely friends who take me out to lunch and for coffee, or even just pop round to see me – these are all little things I can ‘keep myself fit for’. I think of getting a transplant all the time and whenever the phone rings, I always have the small hope that it will be Harefield, but I need to focus on living life now. There are no certainties surrounding transplantation, so whilst I can fantasise about what my life will be like should I be fortunate enough to receive one, I still have to live in the here and now. Yes, I am ‘at the end of a tether’ and have a very rigid treatment routine; I have to get on with it and live my life! It may take a bit of creative thinking and the help of some very considerate and loving friends and family, but it can be done. 

Lastly, I don’t think I would have the positivity I do were it not for my faith and the knowledge and hope that there has to be more to life than this transient period of time we are here on earth for. I’ll leave you this time with a link to the ‘Footprints in the Sand’ poem – not a bible verse, but sums up how I am feeling at the moment!