Being a Patient Patient...

Well it is now day 5 of my stay at the Brompton. I don't really have anything much else to report at this stage, I'm still on an increased dose of steroids and using my Non Invasive Ventilator at night and during the day for a few hours. I do feel much better than when I was first admitted, but I've still got quite a way to go yet. I can now move around more easily and can stand up whilst getting dressed, which I was really struggling with last week, but I'm not back up to my 'norm'. Oh, and I can actually breathe whilst I eat now, so I think I am actually starting to regain some of the weight I have lost! I have to use a full face oxygen mask when I go for my daily walk with the physio. It's a little annoying, but my oxygen sats drop too low if I walk just using nasal specs. Hopefully this will improve as my lungs get over this infection. I do feel really frustrated because I have got a large amount of stubborn mucous stuck down in my chest and I just want it out!! I am having 2 intensive physio sessions with the physios and Luke helps me to complete an evening session. Finally, my blood sugar levels are now completely out of control, mainly due to the higher dose of steroids I am now taking and also due to the infection itself. So I am now using insulin, which is taking a lot of tweaking! However, I do feel quite relieved that I will gain some really firm control over my blood sugars and don't have to worry so much about what I eat. This will undoubtably help me to gain weight, which is always a good thing! (on admission my weight had dropped to 45.8kg, so I need to get that back up!) Controlling my CF related diabetes with oral tablets for 2 years is pretty good going really. I hoped haven't sounded too negative in this blog, I'm just feeling quite frustrated and anxious to get better and (hopefully) back to my level of 'normal'. I know that things aren't going to simply improve overnight, so I need to just sit back, relax and try to be a patient patient! My friend Ruth messaged me this bible reference; 'do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God' Philippians 4 v 6. This verse has always been helpful to me, but is definitely more so during times like these!

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!

Annoying News!

I thought I'd post a quick update tonight to follow my last blog post... Unfortunately things haven't really picked up in the chest department. I've been getting chronic headaches and have been having bad chest pain,(on top of my other symptoms) which I do get quite a lot, but when it's really painful it is often a sign of inflammation and infection. I've also been relying more on my non invasive ventilator (NIV) more to help me catch my breath and generally feel able to breathe! I am going to be admitted to the Bromoton tomorrow, I'm just praying for a speedy recovery and an uncomplicated admission! But hey, got to get the x rays and blood tests done first so that we know what we're dealing with. I'm obviously a bit (ok, very!) scared and upset, but it's the best place for me to be so they can continue to make sure I remain fit enough to have a transplant, should any lungs that are a match become available. I'll write again very soon! With hopefully, more positive news!

Front Page Splash

I have been a bit quiet recently and this is mainly been due to the fact that I’ve been a little bit under the weather! I started a new antibiotic nebuliser a few months ago to see if this would help to keep my heath stable whilst I continue to wait for a transplant. In essence, I cycle two different antibiotic nebulisers. I inhale an antibiotic called Tobramycin (Tobi) for one month and then I used to inhale Colomycin for a month and so the cycle continued. However, over time, I began to notice a bit more of a difference between the Tobi and Colomycin months. My doctors suggested that I replace the Colomycin nebuliser for one called Aztreonam (trade name ‘Cayston’). This worked really well for the first two months and my FEV1 lung function even increased from 17% to 20% and my FVC lung function increased from 40% to 46%. I was so pleased and meant that I could really enjoy Christmas! So at the beginning of January I began my second Aztreonam month. The first week went swimmingly – I even felt well enough to go out to the cinema AND for dinner one evening with Luke; something we haven’t managed in a couple of years! However, into the second week I began to feel really terrible every time I inhaled my Aztreonam. I felt really wheezy, breathless and generally felt horrendously lethargic... I could barely wake up before 11 am each morning. 

I was obviously really upset by this as firstly, I couldn’t breathe and secondly, after a promising clinic review the drug seemed now not to be agreeing with me. After consulting with my wonderful CF homecare team from the Brompton on the phone we agreed that I should stop Aztreonam for a few days and see if things improve. If they don’t, it means I probably have an underlying chest infection which is causing the irritation and breathlessness. If my symptoms improve, I’m to try the drug again when I feel ‘normal’ again and see if it still has the same effect on me. I’m not really sure what I want to outcome to be. On one hand, I really don’t want to have a chest infection and potentially be hospitalised while they sort me out. Neither do I want the Aztreonam to not agree with me, as there have been so many positive clinical studies about it’s effectiveness, but then again medicine is an incredibly difficult field as one size does not always fit all! After stopping the drug on Tuesday I am beginning to feel better, much less tired and wheezy, but still quite breathless. We have agreed to give it until Monday, so we’ll see what happens... I’m just going to pray that God will take care of the situation! 

On a lighter note my local newspaper, the Basingstoke Gazette have run quite a substantial piece about organ donation! I approached them back in October via email about organ donation and asked them if they would consider running an article about it and the editor was very keen and I was even contacted by a reporter on the same day! It was really encouraging to have such a keen response. The Gazette sent a lovely reporter and photographer out to cover the story and it was lovely to discuss the issue with them. We had a good laugh at having to do a photo shoot... Luke particularly enjoyed himself (ha ha!) I’ve decided that I don’t have the discipline to be a model; I couldn’t hold my poses very effectively (mainly without cracking up)! 

The piece took some time to come to print as these things often do, but we are really pleased with the end result. Ultimately it’s not about me; it’s about raising awareness about organ donation and the implications of wishing to do so – making that your family/loved ones aware of your wishes.

There are so many misconceptions out there about organ donation and it’s such a shame if somebody decides not to sign up to the register due to being misinformed. Making an informed decision one way or another about deciding to donate your organs after your death is one thing, but choosing not to sign up to the organ donation register because of apathy or being misinformed is something that can hopefully become less common if the whole issue is more readily and accurately discussed. 

There are few examples of selfless acts in this world and I believe organ donation is one of them.  

Out with the Old, In With the New!

http://www.pdphoto.org/PictureDetail.php?mat=&pg=5536

New year's eve 2011, I can't quite believe it's come around so quickly. I have always loved new year's and see it as a great way to reflect on what has been, as well as looking ahead to the so far, unblemished year to come!  What has 2011 been like for me? I have to concede that it hasn't been too bad a year at all. I have not been hospitalised and have only needed one course of intravenous antibiotics, which I did at home. I am so grateful that I have managed to remain so stable health-wise. I have been able to enjoy a great Christmas with my family, which was made even more super by having a good hospital review just before it! Although my lung function remains dismal, it is obviously much better to see a small increase in it (17% to 20% woo hoo) than any decrease! I suppose I have to admit that during this past year I have come to accept my limitations and work with them instead to trying to fight against them. I still find it hard to believe that in January I will have been on the double lung transplant waiting list for 2 years. I can't thank all my lovely friends enough who have dropped in and spent time with me over the year - you've made it all so much more bearable! 

As I look ahead to 2012 I really see it as a year of hope. I pray, believe and hope that this will be the year I receive a transplant.  2012 will also be the year that Luke finishes and submits his thesis and also the year that he (hopefully) publishes all of his work, which I am very excited about! On this note, I have to say that Luke is a truly amazing man and an incredible husband. Quite how he has managed to write his thesis and complete (almost) his PhD with me and all my health troubles getting in the way is beyond me!  

I'll be back in the new year with a more substantial blog, but for now, I'm off to thrash Luke at monopoly! I wish all my readers and followers a really blessed and enjoyable new year! 

I Think We've Been Here Before

Yet again I was caught totally off guard when Harefield Hospital rang on Friday morning with a potential transplant offer. It seems incredibly ironic to be so surprised that something you are so desperately and anxiously waiting for actually seems to be happening! Fortunately the plumber who had been visiting to fix our leaky bathroom taps had left and Luke and I were actually admiring his handiwork when the call came! 

I shall not bore you with the details of the drive or the procedure that I went through at Harefield Hospital as it was very much the same as the last time I was called. Except that I had time to have a shower before donning the haute couture fashion item that is the blue hospital gown... I felt so sorry for the transplant coordinator who had to come into my hospital room at about 4pm and tell us that unfortunately the donor lungs were not viable (which they do not know until the retrieval team assess them at the donor hospital). It must be so, so hard to deliver such disappointing news. However, it does give me confidence in the fact that the medical teams do thoroughly examine the lungs (or whichever organ is in question) and any potential organ donation recipient will be receiving organs in the best condition possible. 

The hardest part of all of this is the fact that to get over the fear of the imminent operation and the list of risks associated with it one has to look past that and hoping that all goes well, focus on the life that will be post transplant... So when that is ripped out from underneath you, it’s pretty darned devastating. However, my wonderful husband and amazing family have really helped to keep my chin up! What of my friends? Well I decided that I would post what was, or was potentially happening on Facebook as it is an easy way to keep extended family and friends aware of what was happening. The response through comments and emails was truly overwhelming. Thank you so much for all of your support and kind words. It really helped me get through the disappointment. As did meeting up with my dear friends Hannah and Jess the next day for a good old catch up to celebrate Hannah’s birthday! (I must admit I had a stiff drink!) 

I believe it is incredibly important to remain positive and keep hopeful. I do rely heavily on my relationship with God at these times and I know I often end my blogs with a particular verse, but there are so many I could pick right now! All I will say is that, although life doesn’t always go the way I planned (not that I’ve ever been one of those ‘where will I be in five years’ type of people!), or would like, all I can do is just roll with it and take each experience and let it build me into a stronger (hopefully?!) person. I have learnt to relinquish control of what cannot be changed no matter how much I worry and focus on things like keeping myself as well as possible and living each day to the fullest.  

Whilst I am really disappointed that the call did not result in shiny new lungs for me on Friday, I take joy in the fact that I DID get another call, so now I have to remain hopeful that another call WILL come.

Excess Baggage!

I’ve always been a spontaneous sort of lady... Luke and I used to fill our spare time with random road trips, ad hoc trips to the cinema or visits to friends. This is another element of my life that has been somewhat impacted by the progression of my Cystic Fibrosis. Whilst I do not wish to sound whiney or self-pitying, it took some getting used to!  

For example, if Luke and I wish to spend time away from home over night, it involves getting oxygen ‘prescribed’ by my hospital, so that the relevant equipment can be delivered to my holiday destination. This requires (so they say) about 3 weeks to process, so goodbye spontaneous weekends away! I have to say, I am so grateful that the NHS is able to provide such a service and I don’t wish to sound ungrateful but it is a bit annoying! The main bit of kit I would need delivered is something called a concentrator. This takes in air from the room and filters the oxygen out of it and delivers that up my nasal tubes... pretty clever really! I also need a portable unit, so that I’m not ‘tethered’ to one room. I’m lucky enough to be able to use ‘liquid oxygen’ so in my garden shed I have a big container (Dewar) full of liquid O₂ which I can fill up my portable unit, so I can leave the house and so on! It’s quite funny to watch Luke fill it up, as the oxygen has a very low temperature, lots of water vapour escapes and it makes the shed look like some sort of mad scientist’s lair (well, I guess Luke does sort of qualify as a mad scientist!!). The portable oxygen unit can give me “up to” 10 hours out of the house, which again means I need to plan my days/evenings rather than just going home when we feel like it! There have been many occasions where I have run out of oxygen whilst out and about... but you get better at planning these outings! 

Please note the glamorous black oxygen backpack - A must for any fashionista, no?

When I first began needing oxygen therapy Luke and I lived in a first floor flat, which meant I could not have liquid oxygen. This is because the liquid oxygen Dewar has to remain on the ground floor (it would be far too heavy to get upstairs, not to mention the fact that it would be a fire risk too). This meant that I had to rely on the oxygen company to deliver cylinders of oxygen for me to use, should I wish to go out. Unfortunately, these are in quite short supply, so I would often be without a portable cylinder and would therefore be housebound. This was quite a trying time for me, as I was new to the whole ‘oxygen’ business and as we didn’t even have a garden at the flat, I was quite literally imprisoned! We were very lucky to discover a house had come onto the rental market in the village I grew up in, so we were able to move and not only have a garden, but also able to receive liquid oxygen. This situation got me thinking though. I was incredibly blessed to be able to afford to move house and that one had become available in the ideal location for us; however there must be so many more people in a similar position to me, who cannot move to a location which would enable them to have liquid oxygen, or the use of a garden. This really made me appreciate that although my life is a struggle (well, whose isn’t?!) I have been incredibly blessed. 

As well as the oxygen situation, how can I discuss going away for a weekend and not mention the truckload of drugs and other equipment that I need to take with me?!  I have to take approximately 20 different medications, some of which require refrigerating. I need to pack two types of nebuliser equipment, blood sugar testing kit, my non-invasive ventilator (which I use for physiotherapy and to help me breathe during my sleep if I need it) which comes with many hard to pack facets including filters, mouthpieces, tubing, water bath to name but a few items! Oh, how can I also fail to mention wheelie chair! It's probably a good thing that I am unable to fly at the moment - think of the excess baggage bill! It isn’t necessarily the end of the world if I forget to take a bit of my ‘kit’, especially if it’s only an overnight stay, but as I find travelling and being away from home really exhausting, skipping any part of my treatment regimen isn’t really the best idea!!

Be all that as it may, this weekend Luke and I had a lovely time with our good friends James and Ruth, with some rather loud fireworks... oh my goodness the noise! Lots of food and of course much chatting and laughing! Whilst it is a huge effort to pack up and get away, I’m so grateful that I’ve still got the ability to do so – as well as lovely friends who don’t mind their house being usurped by tonnes of medical equipment! 

Hard to see us through the copious amounts of sparkler smoke, but we are there!!

This is probably one of the hardest changes that I have had to deal with. I was used to being so active - teaching full time, running the children’s activity club at our church, and then going out socialising with friends and colleagues after that! I don’t want to sound like I’m blowing my own trumpet – I’ve just always been the sort that can’t sit still, so suddenly having to is terribly frustrating! The get up and go is still in me, it’s just that I can’t act on it! People often ask me ‘What do you do all day?’ (Not in a malicious way might I add!!) The reality is, the small amount of housework, or similar kind of physical activity will take up most of my morning. Then after lunch my physiotherapy and nebulisers take a fair portion of the afternoon. I write quite a bit and study things, but in comparison to my life before, I used to feel like I was achieving very little. I know that this is not the case. What I’m working VERY hard at doing is keeping myself as healthy as possible until I (hopefully) receive that life-changing call. Through evaluating my ‘new’ circumstances, I realised that there was a lot I could do. I decided to write this blog as a conscious effort to raise awareness and share my story so that others could perhaps be encouraged by it, or maybe even learn something new. Whilst at the moment, I don’t have the physical capacity for much; I certainly still have my mind. So I have begun a campaign – I have started to look at other media through which to share my story... Watch this space!!!