28 Days Later (without the Zombies...)

I’ve not really much to update in the way of moving forwards health-wise since my last blog post. I’m keeping myself positive but my infection is still yet to be adequately controlled. So my Intravenous Antibiotics were changed again on Thursday to Aztreonam, Tobramycin and Chloramphenicol. I have also had an intravenous anti-fungal Caspofungin added to my routine too.

The most noticeable issue I have been having lately is my pain management. I have been getting incredibly bad chest pain which is due to a plethora of issues, but mostly due to inflammation and pockets of sputum sticking to the sides of my lungs. It feels absolutely revolting to the touch, sort of rattly and crunchy when I breathe in. It’s also very painful. Also, the sputum on my chest in the mornings is still an issue and as the infection rages I produce ‘gallons’ of the stuff, which inhibits breathing and makes me exhausted just getting it all out. What is worse is that my ribcage is so incredibly stiff when I wake there is little movement (rise and fall motions) in my chest at all. The lack of lung expansion is caused by the thick sputum sticking the airways together and, in effect, collapsing a region of the lung. This sputum is moved by physiotherapy and the associated pain is now managed using a subcutaneous (just under the skin) morphine pump which delivers a dose of morphine 24 hours a day. I can also have ‘breakthrough’ morphine injections in case the pain becomes more acute. I also have lidocaine patches which I can stick directly onto the site of the pain to deliver local anaesthetic over 12 hours. I have also been prescribed intravenous Paracetamol four times a day. The morphine pump and anaesthetic patches were all started on Friday and it has helped an awful lot. It did take a couple of days for the pain relief to build up in my system, but physiotherapy and moving around has been much more manageable now the pain is more bearable. In all honesty, I was a bit reluctant to go on a morphine pump... It all smacked so much of ‘end-of-life’-ness. However, I had a really frank discussion with my lovely consultant and he was of the opinion that the pain relief is not an admission that you’re going to pop off this earthy plain any time soon, but an incredibly important tool to ensure that I can do all my treatments and be comfortable in myself.

He also said, more accurately, that as I have ‘end-stage’ lungs, which means that it is a real battleground in there. The warring factions at work are Pseudomonas (bacteria), Aspergillus (fungus) and my own white blood cells, which in the mêlée cause collateral damage to my lungs including scarring of the lung tissue, production of sputum, inflammation of the airways and generally cause me to feel....well, mergh!? The docs are all working so hard to find that all important ‘recipe’ that will get rid of the infection as much as is possible with these CF puffers, without doing too much damage to my own body in the process. I feel comforted that there are still options available at the moment, but also disheartened that I’ve been in here for a month now and am pretty much no further forward than day 4 or 5 of my admission.

The one major concern I have at the moment is my haemoglobin levels. Throughout this admission my iron count has been steadily declining throughout my admission and the doctors really, really want to avoid having to give me a blood transfusion, as this will complicate things for me regarding my lung transplant. As I will be transfused somebody else’s blood I will develop antibodies against this, it could make finding a match potentially more complicated. As I’m a bit of a tricky match anyway, I don’t want it to become even more difficult!

Luke - finally relaxing!

Now, for more positive news! I have a brand spanking new hospital room!! My amazing physiotherapist (seriously this lady needs an award or something) and one of the CF homecare nurses decided that I’d been in my little box of a room for far too long and quick as a flash it was ascertained that ‘room 5’ was available and they moved me in that afternoon! It is huge and the TV is massive! It also has a sofa! Luke has also started to stay as a) the room is big enough (he practically has his own wing and b) nighttimes/mornings were so anxiety riddled that the doctors thought that as I get over the worst of the infection and as it’s been so long it might just help me a bit. (As well as save Luke some train fare!) Finally the physios are cooking up all sorts of little outings that I can go on... Tomorrow, all being well we’re off to Scoop, an amazing ice cream parlour near South Kensington. We shall be armed with Non Invasive Ventilators and O₂ canisters galore. So all in all, there is actually a lot of fun going on in this fight! 

I have been making sure I turn more of my attention to God and spending more time with Luke praying and I do feel calmer. In all honesty, how much can I really do? I battle so blimmin’ hard on all my treatments and really push myself all day every day to do it all to the best of my ability. There’s not a lot else I can do apart from trust God and trust the doctors and look forwards to the little treats that come my way!

20 Days Later...

Whilst in hospital there is no sense of how each day is going to unfold. I have to take every day as it comes as each brings its unique set of challenges. However, there are some things that are commonplace and that I do not enjoy; the first, the act of waking. I know that each day I am going to wake up with the need to cough some disgusting sputum off my chest. I hate the ‘first morning cough’ as it can be quite painful and I sort of feel my rigid rubbishy lungs unfurl into life, which takes them quite a while! I also feel incredibly sick due to both the coughing and the cocktail of drugs I have been taking. Then I will most likely need the loo. At 7am I’m usually still attached to my 2 hours worth of morning intravenous antibiotics, so I need to navigate the wires, take my ventilator off and put my hi flow oxygen mask on. It is really hard in the morning as I’ve had air artificially pushed into me all night, it takes a while to realise that I can breathe a little through my own devices (although I am still needing my NIV (Non Invasive Ventilator) pretty much 24/7 to ventilate me adequately). Then I push my drip stand to the bathroom followed by the wires of the oxygen. Afterwards, back in bed I get onto my NIV and wait for breakfast to arrive. Over the last few days I’ve felt that my lungs have been overflowing with sputum, so I’ve often done an early morning physio session on my own before Luke arrives. When breakfast comes I don my facemask again and munch away at what I can and take breaks on the NIV when I get too ‘puffed’. It takes quite a while to eat brekkie, I tell you! Not that I’m moaning though, as the doctors have now got me on fairly high dose anti sickness medications in the morning which means I can actually eat breakfast! 

The reason I said that I don’t know how each day is going to pan out is because over the three weeks that I have been in here only now am I feeling that I may turn a corner. PLEASE don’t think I’m being negative or moany, but in the last two weeks, the bacteria in my chest have become resistant to two different combinations of antibiotics, which led to two pretty horrendous bouts of respiratory distress and this needing several days to recover from. (Also meant that I couldn’t see my lovely bestie mate when she was meant to come and see me last Tuesday). The way I feel when I have a new, or worsened infection is not very pleasant. Firstly, I tend to get more pain on my ‘bad side’ (right lower lung) and this feels like where all the sputum pools and almost ‘comes from’. The pain is so bad that it was queried as a broken rib. However, the x-ray showed no breaks, just lots of ‘fluffly plugging of sputum’, nice! Then I can’t breathe and this is further worsened by panic! This is also usually accompanied by a temperature and a drop in my SpO₂ levels, usually to the mid 80% point (on the NIV). It’s just so hard to deal with these setbacks at times as the only thing I can do is physio to get the rubbish out of my chest, trust the doctors as they adjust my oxygen levels and change my drug regiment to knock the bacteria on the head. I end up just lying in bed on the NIV just praying that I will come through the ‘blip’ and survive so I might get a transplant!  It’s just also been a constant worry for my family as for several days I was struggling to breathe on the ventilator alone which is NOT a good sign! 

Nevertheless, several things have been put in place which seems to have things turning to a more positive direction. Firstly, the doctors have decided to try Tobramycin again, on a low dose and so far (praying every day for this) the antibiotic levels in the blood seem to be OK, and my infection markers have come down slightly. So my IV drugs now consist of Fosfomycin, Tobramycin and Ciprofloxacin. I am also being trialled on a new NIV. My old machine was a bit archaic and I have had it for the last two years, and used it overnight for the last 9 months it was felt by the physios that something could be provided which did the job a bit more adequately. We’re still in the early stages of trialling it, but it really is a great machine! It ventilates me at much lower pressures than my old NIV which is of great benefit and also has an internal battery which means it’s so much easier to walk around with it. Also, this is the only machine of its kind at the Brompton and if I get on alright with it, they will order one for me to go home with! However, I shall not let myself get upset if it doesn’t work out, because ultimately I might get new lungs soon and not need it!!  The doctors here are also reminding Harefield that I am very much in need of those new puffers quickly!! 

Although it has been a very tough admission so far and I am still unsure as to how long I am going to be here for, or what might even happen next, I’ve still got my faith and the promises that brings and the love and support of an amazing family and group of friends. No matter what happens to me, it’s certainly a lot easier with them by my side! 

Outside ventures with physios, gran and Luke! (Old NIV!!)

Day 6... Room 18

Me and my brother!

I can’t quite believe that I’ve been in hospital for nearly a week. I thought time was meant to fly when you’re having fun!!?? I have had many visits from lovely friends and family which has helped the time go much quicker than it would have! Being in hospital during the Olympics has had it's perks, as so many people who would not have ordinarily been in London have been able to swing by to see me on their way to the games! Also, the increased frequency of the trains has made Luke's travel to our friend's house with whom he is staying (due to her extreme kindness) a LOT quicker!

Walking unaided is overrated!

In all honesty, it has been a very slow process as it is whenever my little lungs take a knock these days. My oxygen levels (SpO₂) are holding on at a respectable 96%-99% whilst on the Non Invasive Ventilator (NIV) with 4 litres of oxygen per minute during both rest and activity which is positive. I’m feeling more able to spend time on the high flow oxygen mask and although my SpO₂ is not great on it yet, at least I am feeling less dependent on my NIV which means I have more freedom whilst eating, to nip to the toilet and to take general breaks from the machine every now and then.To be honest relying on breathing through a machine hanging out of ones mouth or with a mask strapped to your face is not exactly conducive to an easy life!! I am hoping that my SpO₂ will also improve off the NIV as my restricted airways are sorted out by the various medications I am taking. 

Today the doctors have reduced my steroid dose so I’m going to come off the IV steroids and begin a somewhat higher dose of oral prednisolone, which in time I will also be weaned down from. A major plus side to this is that the water retention that I have been suffering from will reduce once my steroid dose decreases! On admission I weighed 46.6kg and now I weigh 55kg... Wish I could say that it’s amazing weight gain by me, but no... just useless water!! It’s really quite uncomfortable, but being able to move around does help the distribution of the water and it is a side effect that I know will go in time! Luke thinks it looks cute, I do not agree!! I’m also suffering from low potassium levels so am having those watched carefully too, but we think these were lowered due to the large amount of fluid I was pumped with on admission... Watch this space!

Unfortunately there is not really anymore information to add at this time. I really really need that call from Harefield to come, whilst at the same time I am thinking ‘could I maybe fight this blip and hang around for another few months/years of waiting for a nice new pair of lungs?’ Only time and patience will really tell! It’s only been 6 days, so perhaps I should just sit back, chill out, enjoy the Olympics and let the doctors do the worrying for me. Oh, and most importantly, leave it all in God’s hands!  

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Panic? Who, Me????

Well it’s safe to say I’ve been collared again. As my lovely blog followers will already know, I have been on a course of home intravenous antibiotics for the last two weeks, these worked well for the first week but I soon started to feel less well. I managed to get to the cinema for a date night with Luke on Saturday, this really was quite an effort but I was determined to do it having been pretty much house bound for the preceding few days. I’d also started to feel horrendously tight chested and wheezy, which was an additional symptom. So off to clinic I plodded,  knowing deep down I would probably be coming back up fairly soon. 

The journey through the dreaded Olympic London traffic was surprisingly easy and it only took the usual hour and a half for the hospital driver to get us to the door. Once at clinic I was weighed at met with the dietician... gained .2kg so up to 46.4kg and BMI of 19.7... going in the right direction.  (although in all honesty I was a little peeved that it wasn’t more of a gain as I’d been eating like a horse!) Then came my usual favourite moment (not)... the entry of the physiotherapist (not the problem, the Brompton physios are lovely!!) it’s that pesky lung function machine and oxygen saturation (SpO₂) monitor they insist on carrying!! We had a jovial chat and catch up and admired the brand new SpO₂monitor cum lung function machines that they now have to play with. Then she attached said monitor to my one finger clear of nail polish...the result was a tad on the disastrous side; 75% on 3 litres of oxygen. Hmm. We quickly whacked up my portable unit to 6 litres and my little lungs managed to drag the level to a measly 80%. At this point the physio ran out (reassuring) and returned with an entourage encompassing  a doctor, a nurse to take more observations and several other people. I was agreed that I should probably be admitted...(I was obviously a crying a bit at this point due to the amount of running and overwhelmingness of it all - not 'cus I'm a diva!). I also had arterial blood gases taken, which showed poor oxygen saturation and high carbon dioxide levels. Fortunately after a bit of patient shuffling I got a bed on Foulis, had bloods taken, an x-ray done and then made my way up to the ward. By now I had been given a hi-flow oxygen mask which meant I was getting 40% oxygen blown at me, but on the plus side my SpO₂had been coaxed up to 85% on this which is still by no means ideal, but ok enough for me to get aforementioned tests done and drag self up to ward - I was of course offered a chair, but wanted to and felt able to walk.  As we had come up straight from clinic I did not have my NIV (Non Invasive Ventilator) with me, but the physios soon set me up with one and once I was breathing on the mouthpiece on it, with 6 litres of oxygen going through it (I only have 2 litres through it at home) my SpO₂ sat at a much more acceptable 93%.

Goodness knows why I look so happy, but maybe it's that my Sats were better??!!

Thanks Luke! Taken at 7am when he returned to my side!

My x-ray has shown no new worrying damage (i.e. lung collapse) so this horrendously low O₂ level is due to the constriction and wheeziness I had previously described, which is most probably caused by inflammation and infection. So the initial plan of attack is as follows... high dose Intravenous (IV) steroids twice a day. Hopefully they will reduce these soon as I am already feeling one of the rubbish side effects of these – water retention... my legs are beginning to resemble those of the Michelin mans, sexy! I’m also on 3 IV antibiotics one of which I’ve never had before, so hopefully that’ll scare the bacteria lurking down in my lungs! I’m having Timentin (4 times a day) Colomycin (3 times a day) and Ciprofloxacin (2 times a day). Today my SpO₂ on the NIV has been 99% so the doctors have reduced the oxygen through it from 6 litres a minute to 4 litres. My SpO₂  was 96% on this so that’s good. A small step, but a step in the right direction nonetheless. My SpO₂ on the high flow mask are also better at 92% (at rest). They have also got me set up on fluids to rehydrate me. It’s going to be a long slog to get over this latest set back, as there are so many different combinations of things to try if one set isn’t working particularly well. The team have told me to expect to be in for 3 to 5 weeks, as there is no way that we could administer or monitor this level of treatment at home. But I am going to most certainly escape at some points, most importantly for a certain Miss Evans’ wedding later in August! 

Harefield have been made aware of my deteriorated condition and that I am in hospital. I still desperately hope and pray that the life changing call bearing the gift of a shiny pair of lungs will come! In essence that is what I am in dire need of now. I can come to the brink and be brought back from it every so often, but each time it now feels like I’m being pulled less far from the edge. I just can’t help but wonder where does the point where will that point I can’t be pulled back from come? Theoretically, I could have many more setbacks and if they are routine, be successfully treated and return home with an increased but manageable, or the same regime of treatment. However, I am realistic as well as positive and think that after this admission there is a good chance I will be going home with increased oxygen requirements again. I hope not, but I shall not be surprised. However, if I suffer from a particularly bad infection or cold I might not be so lucky. 

Needless to say I went to bed in a rather dejected state last night. (No Lukey to cuddle!) I was also continually disturbed as I had various IVs and fluids set up so I think the last bag of fluids they hung up which meant I could be left alone was 2 am! Luke and I decided that the best plan of attack was for him to go home and pack us some stuff and then come back super early. This meant he could also give the bunny, Azlan, a cuddle! (Oscar cat had already been collected by his Granny!) I was so thankful to find a bible in the room so took comfort in reading through it and just want to share some readings from the book of James which calmed me down somewhat. I make no apologies for sharing my faith here as this is a big part of my life and probably how I manage to remain so upbeat. I am not intending to force my views upon anyone, but feel that some people may feel the same sense of calm after reading these words! 

James 1; 2-4

² Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, ³ because you know that the testing of your faith produces perseverance. 4 Let perseverance finish its work so that you may be mature and complete, not lacking anything.

James 4: 14 -15

 ¹⁴ Why, you do not even know what will happen tomorrow. What is your life? You are a mist that appears for a little while and then vanishes. 15 Instead, you ought to say, “If it is the Lord’s will, we will live and do this or that.”

James 5:11

¹¹ As you know, we count as blessed those who have persevered. You have heard of Job’s perseverance and have seen what the Lord finally brought about. The Lord is full of compassion and mercy.

James 5:14-16

 ¹⁴ Is anyone among you sick? Let them call the elders of the church to pray over them and anoint them with oil in the name of the Lord. ¹⁵ And the prayer offered in faith will make the sick person well; the Lord will raise them up. If they have sinned, they will be forgiven. ¹⁶ Therefore confess your sins to each other and pray for each other so that you may be healed. The prayer of a righteous person is powerful and effective.

Catching some sun!!

 I will keep you posted as to how my stay pans out! Thank you so much for reading this. Most importantly though, please continue to share my blog and share the word regarding signing up to the organ donation register!!