The Arrow of Time

The phrases ‘time marches on’ and ‘doesn’t time fly’ get thrown around fairly often in everyday conversation, but they are indeed very true. Listening to Heart Radio’s ‘Time Tunnel’ (where listeners have to guess which year a selected number of songs played were released in) on Thursday whilst travelling to hospital certainly confirmed this. Several of the songs seemed to me to have been released only recently, but the year in question transpired to be 2002... Some 10 years ago! This got me thinking about my ‘time’ and journey on the organ donation road. 

It has been three years this month since I was first assessed for transplant and two years and ten months of actively being on the list. It has been almost one year since my last call for a potential transplant. Since being listed, I really do feel that my life has been ‘chaptered’ by various passages of time. First and foremost was the ‘average’ waiting time for a lung transplant of 18 months (ha!) I suppose was the first time punctuation mark in this new outlook. During my first 18 months on the list I obviously had an incredibly restricted lung function (18-20%) but I was still able to ‘do’ quite a lot and although my teaching career had wound down substantially, I was still popping into school once a week or so to work with some children one to one or to hear readers. However, over time that inevitably had to stop; it became too much for me to do this. CF is a really complicated disease as one day I would feel good (by my standards) but on the same day the following week I could be completely exhausted unable to leave the sofa. Therefore I did not think it was fair of me to try to commit to any form of responsibility as I did not know until the day itself if I would be well enough to go in and it would therefore be difficult to plan around me. 

Since completely finishing working as teacher (for now...) I tended to live my life by planning key things to keep me busy and by looking forwards to upcoming events; i.e Laura coming over for a coffee; having a date night with Luke, Beth’s wedding, Luke finishing his doctorate... However, since coming out of hospital at the end of September this year, I’ve been going up to the Brompton every two weeks. This has been my new focus and it’s not one I particularly like. I feel like I’m desperately clawing at all of this extra medical intervention (permanent intravenous antibiotics for example) to attempt to remain stable. Now the FEV1 bit of my lung function (how much of the total capacity in your lungs you can force out in the first second of your breath) fluctuates between 12 -18% and the FVC ‘bit’ (volume of air that can forcibly be blown out after full inspiration, measured in litres) fluctuates more dramatically, between 25 and 45%. If you have a low FEV1 it means that the airways in your lungs are quite narrow, caused by inflammation, infection... I had a ‘blip’ a couple of weeks ago and thank God I got over it through changing intravenous antibiotics and by intensifying my physiotherapy at home (Thanks Luke and Mum!). My check up on Thursday was ok, lung function is a smidgen up (FEV1 is back up to about 18% and FVC jumped back up to 45% from 26%) since my ‘blip’ and my oxygen saturation levels were acceptable. The only caveat now is that my liver enzymes are slightly raised meaning that my liver is taking a bit of beating... I don’t blame the poor thing for kicking up a fuss; I’m throwing enough drugs at my body that it has to metabolise! Fortunately the levels aren’t too scary, so I have to get another blood test next week and keep an eye on it... Oh the joys!! 

These days, I feel quite itchy within my own skin; I know this must sound absurd but on my good days I just want to get on with as much as possible, because I don’t know how long my feeling good will last! Then on other occasions I’ll have something planned and will be too tired/poorly/whatever to do it! Luke and I managed to make it out to the cinema last Thursday to see the latest Bond which was well worth the effort! These days we try and capitalise on the good days when simple things, like going to the cinema, are manageable as we can’t predict how I will feel from one week to the next. 

Whilst all this is going on in my own life I am also hearing heartbreaking stories of fellow CF-ers who have either sadly lost their hard battle with this hideous disease, or are becoming more seriously ill as they too await their life changing phone call for new organs. This sharply focuses the notion of how much I need a transplant, and just how quickly. I don’t care if I sound like a broken record, but this really highlights the need for more people to sign up to the organ donation register! 

The arrow of time still marches on, we can’t fight against it (as much as we would want to!) so I must go with it, keeping myself as well as can be. One of my greatest fears is that I will become too ill for transplant before my call comes. This is where my faith helps me. I know that life can be cruel and unrelenting for people, but this verse helps me think of the bigger picture. 

2 Corinthians 4 v 16-18

¹⁶Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day.

¹⁷For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. ¹⁸So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal.

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! 

Meropenum

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! 

IVs... Emergency Blood Tests and A Hen Weekend!

I apologise profusely for my lack of blogging... I usually tend to go quiet when I either ill or busy, I am happy to report that my current quietness is due to the latter and not being ill (well more ill than usual!). It has been a real blessing to be so busy largely due to a number of weddings Luke and I have been invited to. As well as planning and attending the hen-do of a very special friend of mine!  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.

Therefore I thought that it would be an exceedingly good idea to get myself up to the Brompton Hospital as a day case and start a course of home intravenous antibiotics (IVs), to keep me feeling as well as I have been feeling and to ensure that I am really really really well for Beth and Ed’s wedding on the 9^th June (only 17 days to go!!!). I went up and started my IVs with very little hassle... my lung function was it’s usual low but steady self (Fev1 18%, FVC 45%), weight was a little down, but still acceptable, x-ray unchanged since last time, O₂  Saturations were a bit iffy, but eventually decided to climb to 89/90% which they decided was ok (for me!). 

After one dose we trundled home and commenced the usual routine of administering the IVs (Ceftazadime 3 times a day and Tobramycin once a day). I felt a bit grotty for the first few days, as they are pretty potent chemicals, I felt a little sick and tired. I had to send a Tobramycin level up to the Brompton before I took my 3^rd dose, to check that the drug wasn’t building up in my body and potentially causing damage. Having taken Tobramycin as an IV fairly regularly for longer than 10 years, and always had normal levels this was just another bog standard part of the routine. However, I got a bit of worrying news from the Brompton the day after I sent my Tobramycin level back to the hospital. The level that should be registered before the next dose (at least 18 hours after the previous dose) should be less than 1. However my level was 9, almost 10 times higher than it should be. I had to immediately stop the IV Tobramycin. The Brompton were very concerned as firstly, I am a remote patient, so I’m not at their fingertips to nip a quick blood test down to the lab and secondly they desperately needed to check my renal function as the high levels could indicate kidney damage as this would suggest why the level was so high; it was not being removed from my body efficiently. It was also mean that my other antibiotic would be damaging my kidneys further. Getting a blood test done locally is a very merry dance to lead!! I had to ring up my GP and plead for an emergency test, which they fortunately allowed me to do. Mum (aka Supermum) then had to drive me with the blood sample to the pathology lab in Winchester hospital so it could be tested and then the results communicated back to the Brompton. I am pleased to report that the test on Friday indicated normal renal function, thank God, but I am having it repeated tomorrow to ensure that it is still ok. The doctors are really unsure as to why my level was so high, so I’m not to continue with the IV Tobramycin and to just have it in it’s nebulised form (TOBI).

Currently I have to say I’m feeling a bit on the poorly side due to not being on any form of Tobramycin for nearly 5 days (and an incredibly hectic weekend)... But since being allowed to nebulise it again, I’m beginning to pick up again. 

All of this aside, I had a really lovely weekend... It was the long awaited and highly anticipated hen do of a certain Miss Beth Avis!! We had a lovely meal at ‘The Shapla’ restaurant in Alresford and then we spent the next day completely relaxing at Forest Mere Health Spa. The only thing to mar this lovely weekend was my STUPID portable oxygen unit.  As I have discussed in previous blogs, I have a Dewar of liquid oxygen which I use to replenish a small portable unit which I can take around with me. On ‘demand’ setting (which releases O₂ when I breathe in) using 3 litres a minute will last approximately 9 hours. Filling the portable unit is pretty simple – you push the portable unit onto the top of the Dewar and under pressure the liquid O₂ shoots into it and fills it. Once filled, you leave it to temper and then 20 minutes or so later you are good to go... Or so one hopes!!! Occasionally it misbehaves and I am not quite sure why it does this, but from time to time once it is filled, the portable unit will not dispense oxygen ‘on demand’ (or at all sometimes) meaning that my 3 litres per minute usage will only last about 3 hours.. Scuppering any hopes of leaving the house for more than that time! On Saturday, the night of Beth’s hen meal of course it decided to play up, but it wasn’t too much of a problem as I knew I wouldn’t be out for all that long... However, it really threw the spanner in the works for me when it decided to misbehave on the morning of the spa day... Firstly we filled it and then left it to temper, then after it still not working almost an hour after filling, and further time spent searching for the English language part of the maintenance manual, we were instructed to lay it on its back to temper. We followed these instructions, and suddenly about 5 minutes later there was a loud cracking noise from the kitchen... The liquid O₂ had completely leaked from the unit! As liquid O₂ is incredibly cold (it’s boiling point is approx -183°C) it had cracked part of the paintwork on the windowsill!! Thank goodness it was only superficial damage, and can be fixed with a bit of paint! So the unit was now empty! After a second attempt at filling, the unit was dispensing O₂ at a slow rate, we decided just to go. There was no way on earth I was going to let CF ruin Beth’s spa day, besides this, I was really looking forwards to it! Nevertheless, after much frustration and anguish, it started to pathetically dispense oxygen! Luke (my real life Superman) very kindly drove me to the health spa where I met up with the lovely hens and had an amazingly relaxing day! I was a bit deoxygenated as I’m meant to have a higher flow rate when I move around, but on the whole it was absolutely fine! 

I’m a little bit anxious about my blood test tomorrow; I’m really praying that the kidney damage hasn’t occurred after the last test. Despite this I am firstly really thankful to have such an accommodating GP surgery, as there is usually such a long wait for a blood test... Secondly that I have such a great carer in mum; she is willing (and sometimes able) to drop everything to drive me here there and everywhere when Luke can’t. Lastly, but by no means least, I have such a wonderful group of friends who take me as I am and wheel me here there and everywhere! I used to be so self-conscious about wearing my oxygen in public but now I really don't care about it... People will either accept me for who I am, or they won't! So whilst my life is difficult and trying, it could be so much worse, and I am so grateful that it isn’t!

A Busy Day!

Well hello! Today has been a very busy day to say the least! After having a fairly poor night's sleep, I was collected by hospital transport at about 10.30. Luke did such a good job of packing all of my home comforts and necessary medications and equipment for my stay... I felt really rubbish during the drive up, my right side really ached and my head was splitting with pain.

Upon reaching the ward the staff were keen to set me up and get my first lot of clinical observations done. I stupidly failed to remove my nail varnish, so the pulse oximeter was unable to read my oxygen level through it, so I had to get a toe out instead! My observations were pretty crud, as I thought they would be. My oxygen level was about 88% ish on 2 litres of oxygen a minute, so the nurses turned me up to 3 litres a minute and it stabilised at around 91/2%ish... Which isn't great in an ideal world... But hey, cut me some slack, I need new lungs! The docs are usually happier if it the reading is above 92% but as long as its above 90% that's alright for now. The main cause for concern was my heart rate... It was a shocking 170 bpm at rest! After an echo cardiogram (ECG) they determined that my heart was fine, it was just beating very fast. We thought it may be down to dehydration, so I have been having a saline drip all day and my heart rate has reduced to 117bpm, which is about my usual (my heart rate is usually quite high at the best of times).

I had a chest x ray to see what was going on in my lungs. Fortunately there does not seem to be any new scarring, which is good news, but the area which I've been feeling a lot of pain in is really full of sputum (which apparently looks fluffy on an x ray, just so you know!) so a lot of intensive chest physio is going to be needed to get rid of it.

Finally, my blood gases. This is where the doctor takes a sample of blood from an artery on the inside of my wrist... It gives them a more accurate reading of oxygen saturation levels as well as other gases and chemicals which are in the blood. My oxygen levels were ok, but my carbon dioxide levels were a bit high. This causes problems as carbon dioxide is an acid, if the acid builds up in the blood it causes the blood vessels to dilate and therefore cause a headache. So not only does the thick and sticky mucus stop oxygen being taken into the blood, it also prevents the waste gases from being removed, as they cannot cross over back into the lungs to be blown off! So this just means that I need to use the non invasive ventilator a bit more- definitely over night for now, a a few hours during the day. Hopefully, when my sputum production and deposits have been sorted out, my blood gases will improve... I haven't yet done a lung function test, but I expect I will have to do one tomorrow.

All in all, I feel positive that I should be able to be sorted out with a higher dose of steroids to open up my airways, more use of the NIV and intensive physio. Oh, and intravenous antibiotics to sort out the infection of course! I am so grateful that nothing more sinister has been discovered, so I really thank the lord for that. I just am now praying for more strength to get through all the rigorous treatment! Thanks to all for your kind posts... It certainly helps to lift the spirits!

Another Tether

Unfortunately I am now adorned with another tether, which I hope is temporary! After feeling a bit on the ill side for a couple of days, I rang the Brompton Hospital to get some oral antibiotics, as I want to jump on any infection as soon as possible. However, the antibiotics decided not to work and to make me sick instead (thank you very much!), so I had to go to the Royal Brompton Hospital as a day case and start a course of intravenous antibiotics (IVs for short). As I mentioned in my first blog, the sticky mucus in the lungs of CF sufferers is a breeding ground for bacteria. Most CF sufferers are permanently colonised with a type of bacteria, in my case this is Pseudomonas aeruginosa (or to give it it’s full title ‘a pain in the ar*e’). This can never be fully eradicated, but is managed using a regime of inhaled antibiotics. Over the years during infective episodes where the bugs become too much to handle, I am given IVs to kill the uprising infection. Over time it has become resistant to a large number of antibiotics, so only a handful of IVs will manage it. It’s been a fine balance throughout my life to manage the infection in my lungs. On one hand I’ll never be rid of all infection on the other we don’t want the bacteria to grow uncontrollably. It is these episodes of infection which have wrecked my lungs. This is why I need a double lung transplant, not only due to my horrendous lung function but if I only had one lung transplanted, infection would cross from my old lung to the new one. So I need a new full set. 

On arrival at the ward I had my observations taken and I blew a lung function test. The hospital generally look at 2 readings; FEV1 which is the amount of air you can force out in 1 second and FVC which is ‘forced vital capacity’ this gives a reading of the total volume of the lungs. The FEV1 is the most indicative of infection so it’s the result most often looked at, although the FVC is useful to know too. My result was abysmal... my FEV1 at the best of times in the last couple of years has been only 18%, so to blow half my average is not a laughing matter!  Fortunately my blood oxygen saturation levels had remained unchanged (93%), so the doctor agreed to let me go and start my IVs at home, obviously with the strict instructions to contact the hospital if I don’t begin to feel better in a couple of days. 

The nurse then came along to attach my ‘tether’ through which my IVs will be administered. I have a ‘Portacath’, which is a device situated under my skin at the top of my chest, just below the collar bone. It is, in essence a metal ‘port’ which connects a catheter to a vein. This is the second Portacath, which was implanted surgically many years ago. This is then accessed externally using a needle with a line attached, which dangles on the outside. As I have had so many lines and catheters inserted into the veins in my arms and hands over the years, they have pretty much given up the ghost and kind of collapse or generally kick up a fuss if the docs try to put a line in them. My Portacath makes delivering my IVs a lot easier. There was a lot of pinching and gripping involved finding the Portacath under my skin, which of course is painful. Then comes the ‘inserting of the needle’ bit. It is quite usual for many nurses to have multiple attempts at getting the needle into the target, which is a silicone disc in the face of the device the size of a five pence piece covered by my skin. I have to confess when I was (a lot!) younger I would bite nurses’ hands when they tried to ‘stab’ me. What a horrible child! 

I left the hospital with mixed feelings. Firstly I was really exhausted from the battery of tests and anxious as I felt so unwell. I wondered whether I’d made the right decision to come home, should I have opted to stay in hospital? Conversely, I was pleased to be going home! I was also incredibly disappointed, as we were meant to be going on holiday to Cornwall with our good friends James and Ruth in about a week’s time, which we aren’t going to be able to do now. However, I suppose it’s more important to get myself better. 

I must take this opportunity to point out that there would be absolutely no chance of me being allowed home if it weren’t for Luke, my Mum and the rest of my family. Being on home IVs is not easy – it requires 3 doses of antibiotics to be drawn up in a sterile environment at regular intervals throughout the day. On top of this, I need to eat an awful lot more to help my body fight the infection. This means eating 3 cooked meals a day. I also need more intense physiotherapy. Needless to point out, I am not really allowed to do too much myself, although once I begin to feel a bit better I’m sure I’ll be pottering around as usual! There’s no way to really describe the immense gratitude I feel for my family. Luke, who has had to extend his PhD by a couple of terms over the years (due to my hospitalisations and so on) and is currently writing his thesis, is such a devoted husband he just does everything without complaining or ever making me feel like a burden. Then there’s Mum, who throughout my life has cared for me so well that I was able to complete school, college and university and qualify as a teacher. Then there’s Ian, my brother who keeps me entertained in a plethora of ways, but most commonly, through multi-player online gaming on the Playstation 3 game ‘Call of Duty’! Dad works so hard to support the family and does so without complaining, he’s a real pillar for the family. Of course I must mention my Gran, who pops in every so often to keep me company and keep my mind from dwelling on the negatives. Although I may not have the team or doctors, nurses, physiotherapists, cooks, cleaners and many, many other staff members that I would at the hospital with the love and support of family and friends I can basically receive the same treatment I would in hospital in the comfort of my own home. 

I am so blessed in many ways. I know people reading this will think I’m mad to say this, but there are so many people in my situation who don’t have such an amazing support network and have to spend a large proportion of time in hospital. So, this blog is largely a big shout out to all those lovely people who spend a lot of time looking after me, cheering me up with chats over coffees, animated discussions about weddings and bridesmaid duties, pizza and DVD afternoons, wii and wine nights and people who are just there! I couldn’t do it without you! Again, I’ll leave you with another bible verse. Even when things aren’t looking so great, this verse helps me (many thanks to Fred for bringing this to us in church last week); 2 Corinthians 4 v16-18 ‘Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are renewed day by day. 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.’  

The cat feels the need to rest too...