Sunday, 22 July 2012

Team Yates!

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! 

Tuesday, 17 July 2012

Day trip to London?

Just a quick entry this morning to let my lovely blog followers know that I'm off for a hospital appointment today... I've been having so many issues with my TOBI (tobramycin) nebuliser.

I've mentioned many a time before that whilst the various bugs that grow in my chest are really sensitive this drug, meaning they quiver at the sight of it... However, it has many negative side effects, including ototoxicity (hearing damage) and nephrotoxicity (kidney damage). As no other inhaled antibiotics seem to work anymore I have been taking TOBI full time for several months now. (It's usual administration is one month on TOBI, alternating it with another inhaled antibiotic). Now, unfortunately the drug seems to be building up in my system and in my last blood test, the level of it was too high for my doctor's liking. The last thing they want to see is for me to sustain kidney damage as this could potentially mean problems for my fitness for transplant.

I'm really hoping that the doctors will have some sort of solution up their sleeves for this today... It just makes me feel even more desperate for a transplant as treatment options to maintain my stability are becoming more limited.

Tuesday, 10 July 2012

National Transplant Week 2012: Law of Averages

Today is a little bit of a milestone for me. It is two and a half years since I became ‘active’ on the double lung transplant list.

Here is a table (created with data from NHS Blood and Transplant) detailing the average waiting times for transplant of various organs (for adults).
Waiting time to transplant in days
Kidney and Pancreas

So, I suppose you can say I have had an ‘above average’ wait for a lung transplant so far... but many people have to wait even longer than I have waited so far! 

I knew from the start that just because I was able to be listed for transplant, it does not guarantee you a transplant. In fact, three people die each day waiting for their transplants. The surgeon I met during the initial assessment process made it explicitly clear that it is always a possibility that I may not get a call. So whilst being on the transplant list gives me the hope of a second chance at life, I still live my life very much to the ‘max’ – doing as much as I am physically able to. 

I know I have talked about the emotional side of deciding to opt for a transplant and embarking on the long assessment process that it demands, but I want to stress again that it isn’t a decision that is reached lightly. It involves much discussion and counselling and the fact that I will be swapping one demanding treatment regime with another, the difference being however, with a successful transplant I will have so much more energy with which to tackle these challenges! During my period of waiting, I have seen several friends lose their battle with Cystic Fibrosis. Some have been waiting for transplants and some have decided that a transplant is not for them. Each time this has happened, it has struck me down quite hard, but it has also made me more determined to try to keep as positive as I can and to keep myself as well as I possibly can so should I be lucky enough to receive a transplant call which is NOT a false alarm, I would be fit enough for the surgery. 

To conclude today’s mini blog I would urge you all to please keep spreading the word far and wide about signing the register and talking about your wishes with your loved ones. I must extend a big thank you to my friend Hannah who’s birthday wish today was for people to sign up to the register! What a great idea!! 

Monday, 9 July 2012

National Transplant Week 2012: Is age an issue?

It’s National Transplant Week! I make no apologies for filling various social network feeds with statistics and information regarding organ donation. The word really needs to be spread far and wide about this issue! I would also like to thank my village shop for putting up a poster in their window and displaying leaflets for National Transplant Week! 

I aim to write a short blog each day, with a little fact or two regarding organ donation. Today I am going to talk about age. 

I have heard many people say that they feel that they are too old to sign up to the organ donation register to donate their organs after their death. This is not always the case. NHS Blood and Transplant say that ‘older people are less likely to be able to donate as many of their organs as younger people, as some organs become less suitable for transplant as people age’. However, organs from people in their 70s and 80s have in fact been transplanted successfully! The oldest recorded cornea donor was 104 years old. The oldest solid organ donor in the UK was 84 years old. Recently, an 83 year old man from Hampshire became the oldest person in the UK to make a live organ donation, he was an ‘altruistic’ kidney donor – he will never meet the person who received his kidney. 

Ultimately it is down to the transplant teams to assess organs for viability for transplant, so PLEASE sign up, no matter how old you are (or feel!). And don’t forget to tell your loved ones what your wishes regarding organ donation are after your death!!!

Tuesday, 3 July 2012

Staying Positive...

As many of you know I had a routine clinic appointment two weeks ago which was pretty standard and my lung function was stable which is always good! However, there were a few additional issues that needed resolving the first being my sleeping problems... Being on a non-invasive ventilator overnight is both a blessing and a nuisance. On the positive side I am adequately ventilated so do not wake up with headaches and wake feeling generally rested. Conversely, it can cause me to really fill with air which leads me to become bloated and wake up with really painful trapped wind! This does pass though, with the help of peppermint tea! It also has a huge impact on my sleep (and consequently Luke’s sleep too!) so whilst I feel well ventilated after sleep, I can’t remember the last time I actually slept through the night. Rather than going straight for the hardcore prescription sleeping tablets I am going to try herbal over the counter remedies first and listen to audio books and so on. So far the herbal tablets do seem to be helping! 

Spring and early summer was really a very busy time for me and I was really grateful for this and all the distractions that it entailed. When the hustle and bustle fades however, I am left alone with my thoughts and the one thought that dominates all others is how desperate I am to receive a transplant. I know that I should focus on the fact that I feel generally well at the moment but I do panic and think that it doesn’t take a great deal to make me feel poorly – the slightest cold could potentially go to my chest and worsen my already poor lung function.  To keep my thoughts positive I’ve been thinking a lot about the developments in lung transplantation and the research that has been undertaken (and is still ongoing) to widen the quantity of lungs available for transplantation.  Firstly a procedure called, ‘Ex-Vivo lung perfusion’. To make a rather complicated and highly cutting edge procedure sound simple, this allows lungs that may have been classed as unsuitable, or perhaps ‘borderline’ for transplant a chance to examined out of the body and are, in essence, ‘reconditioned’. This is achieved by pumping a bloodless solution containing nutrients, steroids and antibiotics through them inside a protected chamber, outside the body. This research was even picked up by the BBC and they ran a piece on it – which I was asked to participate in! For those of you who have not seen the news piece, here is a link...BBC Ex-Vivo News Piece

Secondly, more transplants have been carried out using ‘donation after cardiac death’ (or non-heart beating donors). This is quite complicated to explain so rather than fill this post with medical jargon, a link which explains what ‘non-heart beating’ donation is, can be found here (Please scroll to the bottom of the page when the website opens). On both occasions where I had ‘false alarms’ for transplants, both potential donors were ‘non-heart beating’, therefore without the wider usage of this technique I would have received NO calls for transplant whatsoever. 

Another technique which has been discussed with me by the doctors at Harefield was transplanting the lobes of larger lungs into my body. As I am a small lady, with a lung capacity of about 4 or 5 litres, there is the possibility of having a lobe transplanted from a larger donor who perhaps has the lung capacity of approximately 7 or 8 litres. However, the lobe transplants would not necessarily be the preferred type of transplant as the surgery is inevitably more complex.

Whilst it is very positive that many developments have happened in this field, it is clear that so many more people need to make their wishes regarding organ donation known to their next of kin. It is National Transplant Week next week (9th – 15th July) and it is a real opportunity to take the time to discuss your wishes about organ donation with your loved ones. According to NHS Blood and Transplant, ‘Over 90% of families will agree to donation if a loved one is registered AND has discussed their wishes. This drops to around 40% if donation wishes aren’t known.’ This is a frightening discrepancy. I really implore you all to take time to discuss your wishes regarding organ donation! If anybody is interested in spreading the word about organ donation during National Transplant Week, the link below contains lots of downloadable posters, leaflets and web based materials to get the message out there!