Keep Calm and Carry On...

Time for another Sam update! Nothing much has really changed since my last update... I have been feeling a bit on the 'yukky' side since Friday, but the doctors seem to think that it is the new combination of antibiotics getting to work and you can often feel worse before you feel better. On the plus side my infetion markers are coming down which means that the antibiotics are working to remove the infection.

I thought I'd give you a taste of what an average day on Foulis ward in the Royal Brompton is like:
8.00am - Wake up and round one of intravenous antibiotics (IV)... Meropenum and Ciprofloxacin (1 and a bit hours) As well as taking my usual plethora of oral drugs.
8.30am - breakfast
9.00am - nebuliser (Pulmozyme - to help thin mucous)
10.00am - physio
10.45am - time on the NIV to recover from physio (up to an hour)
1.00pm - Lunch
2.00pm - physio, with a bit of a walk
3.00pm - NIV time (hour ish)
3.15pm - IV round 2; Tobramycin and Meropenum (about 40 minutes)
6.30pm - dinner
8.00pm - physio and time to take oral drugs.
8.30pm - NIV time
10.00pm - Night time IV cocktail Mero and Cipro (hour ish)
11.00pm - start to settle for bed...

During the morning and afternoon I will also be guaranteed a visit from the doctors to discuss battle plans, as well as my good friend the phlebotamist... This is to check mainly for infection markers (CRP levels) and to check liver function, as the drugs can be quite harsh to it. Oh, and regular visits from nurses to check your observations (sat levels, temperature, heart rate and blood pressure). It's not quite what you may call a restful experience, it really is quite a fight when you aren't feeling 100%!

Seductive sleepwear... NIV baby!

The main thing that is concerning at the moment is my pesky heart rate. It keeps jumping around all over the place - behaving one minute and then for the next set of observations, it's tachycardic again!! Earlier this morning the doctors were talking of possible drug toxcicity, thyroid problems and so on... As I was writing, my registrar came in with some positive news - no thyroid problems, electrolyte imbalance or drug toxicity. She said that it could be due to the fact that after physio or eating, my lungs have to work quite hard as blood is diverted to muscels or my stomach my heart has to work harder. So I'll just have to spend a bit more time on my NIV after these activities. I hope that this will improve as my infection lessens. I suppose you could say at least I'm in the right place while they get to the bottom of this! I am trying to stay positive, however, I promised myself that this would be an honest blog. I am scared, chiefly because one would expect to get better when they come to hospital, but also, I am really anxious that this heart issue may interfere with my transplant. Obviously, feeling anxious and panicky is completely counter-intuitive, as these feelings will cause my heart rate to increase further! So I'm really trying to keep calm and to just chill out... Prayers for achieving this would be greatly appreciated!

Keep Plodding On

I've not got too much to report today, despite it being the big official weekly ward round. I am going to have another IV antibiotic added to my cocktail, as the infection markers in my blood tests aren't really responding to the 2 I am currently on. The doctors also want to check to see whether my anti-fungal (it isn't just bacteria growing in this crappy mucous, you often get a bit of fungus too... yum!) drug I take is actually needed, or whether it needs to be replaced with a different drug.

My blood sugar levels seem to be heading in the right direction, but there's still some tweaking with the insulin dose to be done!

I had another spell of tachycardia (increased heart rate) earlier, luckily my heart rate had returned to normal by tea time! Getting fully on top of this infection should sort it out. As I blogged yesterday, I just need to remain patient and wait for the various treatments to begin to work fully. I am thankful that I feel better in myself, I just need the 'numbers' to start to agree with me a bit more consistently!

I am also blogging tonight because I have discovered a new danger of living in London... clothes shopping! I can't even leave the hospital, yet have managed to acquire new items for my wardrobe... Please see the photo below for the jumper my darling husband bought for me this evening:

Amazing jumper from 'Joy'

That's all from me for now, but I will of course keep you updated as to how I progress!

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!

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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!