Freedom!

The main difference one notices between hospital and home is how QUIET home really is!! Both Luke and I walked into our lounge and were almost overwhelmed with the silence... No nurse call alarms, hospital machinery, no nurses talking at the nearby nurses’ station, no cleaners or hospitality staff popping in and out at various intervals. It felt odd to say the least. The lighting was also different. The garish and intense hospital lighting replaced by more subdued home lights made us feel as though we couldn’t see properly! It certainly didn’t take us long to get used to being back home though, especially after a proper cup of tea in a real mug! Being reunited with a certain feline was also wonderful. I was worried that my little chap wouldn’t remember me, but he just strolled in as nonchalantly as ever, rubbed my legs with his head and looked at me as if to say, ‘oh, have you been gone long, I hadn’t noticed...’    

Being discharged from hospital always leaves me with mixed feelings. I am always truly ecstatic to be leaving the joint and to be returning to my lovely home, family and friends. However, I do feel a bit adrift, and fearful that if I suddenly feel unwell there aren’t any nurses or doctors around to give me a quick check over, with all the top-notch equipment at their finger tips. I’m hoping that my new anti-anxiety drugs will help combat these feeling and help keep me calm. They seem to be doing their job so far! 

Before I was discharged, the hospital’s Occupational Health team did a fantastic job of assessing my needs and ensuring that I get all the support I need at home to make my everyday life easier, so that I can have the highest quality of life possible. One example of this was organising the delivery of a ‘perching stool’ which you keep in the kitchen (or wherever, mine’s in the kitchen!) so you can kind of perch (as the name suggests!) while you make a cup of tea, or wash up. It’s amazing how much easier it is to complete those tasks when you aren’t expending so much energy on standing alone. I have to take my hat off to Hampshire Social Services who delivered my new equipment the morning after I was discharged. I was very impressed!

As I have mentioned in other blog posts, my oxygen requirements are now increased, which means we are waiting to receive delivery of an oxygen concentrator which can provide the 6 litres a minute I need for moving around the house (or wherever else I happen to be moving!). The concentrator I have at the moment only goes up to 5 litres a minute, so currently the company have ‘piggy-backed’ two concentrators together to provide 6 litres and have moved my original concentrator upstairs to provide the 2 litres a minute I need through my non-invasive ventilator (NIV) at night, and the 3 litres a minute I need for just lounging around. So it’s safe to say our little house is like a wire city/oxygen concentrator showroom at the moment, until we get the proper concentrators installed, but hopefully we won’t be waiting too much longer for this to happen(!?) I also had to have the settings on my NIV changed prior to leaving hospital, as my carbon dioxide levels were still too high. After some tweaking of the machines settings, and a sleep study a couple of nights before I came home, the doctors were satisfied that I was getting rid of enough CO₂ to be able to be discharged. 

The most obtrusive change to our routine is probably my night time use of the NIV. I am quite accustomed to the noises it makes; the whooshing air is actually quite therapeutic. However, Luke doesn’t have quite the same love for it... The first couple of nights he was kept awake by my face mask, as it wasn’t fitting quite right, so made odd noises when I exhaled. That was easy to sort, but now he has to deal with getting a face full of hard plastic every time I cuddle up to him (oops!!) I think I’ll have to be less vigorous in my hugging!  

I was a bit disheartened when I first had all of the support provided for me (not in an ungrateful way might I add!!) and having consultations with palliative care. It sort of brings it all closer to home that my CF isn’t going to ‘get better’ – yes, I have recovered from my latest chest infection, but I am by no means better than I was before. In hindsight though, I do feel like I have been struggling for a while, so I could well have needed a higher flow rate of oxygen for some time. At least all of this equipment and changes will allow me to lead as ‘normal’ (whatever that is!?) a life as possible until my call comes. I really can’t believe that on the 1^st March it will be one year since my first false alarm, and nearly 2 years and 2 months of being on the double lung transplant waiting list. I’m just continuing to try to stay positive and have also taken up crocheting (random!) as an additional hobby to help occupy my mind! My family have been of invaluable support and I will discuss in a later blog my changed home routine and how it affects their lives too.   

The End Is In Sight!

Wednesday... the big multi-disciplinary ward round... where the consultants and department heads chew the fat over various patients. Today I was told that I could potentially come home on Friday... Monday at the latest, yay!

I'm so pleased that I've managed to recover from the chest infection that I had picked up. My lung function is almost back to my baseline level - FEV1 18% and FVC 50%, so I can't complain too much at that! My infection markers are almost back to an acceptable level. My exercise tolerance has improved dramatically over the last week, that too is almost back to my level of 'normal' I am going to make sure that this continues at home and the physios here have suggested using my non invasive ventilator (NIV) to do more vigorous exercise to build muscle. (Breathing through it that is, not picking it up and doing weight training with it!) If I can build up my muscles that should, potentially, reduce the strain on my heart and lungs. I am also satisfied that my blood sugars are under much tighter control. I don't mind that my CF related diabetes has deteriorated enough to require me to use insulin, this means that I can control it much more efficiently than by using tablets alone.

I am a bit disappointed that my oxygen requirements have increased. Until now, I was using 2 litres a minute for rest and 3 litres for exertion. I now need to use 3 litres a minute at rest. I'm not quite sure what I need for exertion, I'm having this fully assessed with the physios tomorrow. It's just a reminder that CF is an incurable disease and ultimately it's demands on my body will become greater and greater. I will also have to start sleeping with my NIV on at night at home. Again, this is another sign of the diseases' progression, but I mustn't get too disheartened by it. I feel most sorry for Luke having to put up with the noisy machine!  As you all know, the doctors had a good old look at my heart. Fortunately there is nothing structurally wrong with it. It just has to work a lot harder to move oxygen around my body. It's just another reminder of how desperately I need this transplant, before further organs become damaged by my failing lungs.

My tachycardia is not solely due to my poor lungs. My doctors really think that my underlying anxiety has a large part to play in it too. I felt really annoyed at this at first, as I didn't actually 'feel' anxious or worried, I hardly cried at all during this hospital admission! Similarly I felt like a total failure as a Christian... If I couldn't let go of my problems did this mean I didn't trust God? I had a visit from a lovely palliative care nurse. She explained that having been on the transplant list for 2 years and living with a life limiting disease, it would be odd if I wasn't feeling any form of anxiety or depression whatsoever! I have been prescribed some anti-anxiety drugs to help me if I feel a panic attack coming on, as well as a small dose of morphine.
Those of you who know me well will know that whilst I was smiling and nodding at the nurse, my mind was going absolutely mad and into overdrive... Firstly, why did her name badge say PALLIATIVE CARE??? Am I about to drop dead? Secondly, I had always been quite 'proud' (for want of a better word) of the way I was dealing with my health problems, now I need drugs to help me even do that?
Soon after she left, I burst into tears and was just distraught - I was having my ECHO that afternoon and had a gym session booked in with the physio. During said gym session I had a good chat (ok, cry - so much for not crying much in this admission!) with my physio and discussed the fact that whilst palliative care is often associated with the end stage of disease, it's also about symptom and pain management and keeping me in a good state, until I receive my transplant. I am more upbeat about it now. I have had a few doses of my new medications and think that they will be really beneficial, particularly when I return home and away from the safe cocoon that is hospital. I saw the palliative care nurse again on Monday and I was much more relaxed and I feel much more enabled to cope with the anxiety I've been feeling.CF is such a multi-faceted disease and the mental health issues which surround it can be so easily overlooked.

As for my feelings of failure as a Christian, I know that was stupid too. After all I'm only human and it is only natural for us to be doubtful and worry at times. I now need to put my trust and faith in God as much as I humanly can and whilst I appreciate that my health has taken a further decline, I have also been given some new 'tools' to help me deal with this, which may keep me well and stable at home for another 2 years, although I would hope that I receive a new pair of lungs much, much sooner than that!

Me with Mum - Feeling a lot better after a little shopping outing!

Slowly, but Surely...

After last week's little 'blip' I am beginning to feel more positive. My heart seems to be behaving itself a bit more consistently. The doctors genuinely seem to think that it is a combination of my heart having to work harder due to my rubbishy lungs, as well as my underlying anxiety surrounding my health and the whole uncertainty of it all. I am a bit annoyed by this, mainly because I thought that I had been doing a good job of lifting up my worries to God and generally trying to chill out over the issue (as much as you can!)... However, while one can control their conscious mind, there's always the subconscious lurking underneath! The doctors have arranged an ECHO, where the heart and major vessels are examined through ultrasound, mainly to placate my worries and to prove that there is nothing structurally 'wrong' with my heart. The team seem very confident that it will be fine and that this is an exercise to help lessen my anxiety.

My exercise tolerance is increasing (I use the term exercise very loosely here!) and am able to walk a bit further each day. My lung function has also improved since admission! I'm hopeful that I can get it even better before I go home! My infection markers have also come down too, which is indicative of the infection being reduced. Luke has also taken me out a few times in the wheelchair to get some fresh air and get out of the four walls of my room! We had a nice stroll down the King's Road this morning, which made me realise how COLD the weather actually is!!!

The doctors seem to think I'm going to be a 'three week girl' which means that I could potentially come home late next week (in time for my birthday, yay!)... Before this though, they are still aiming to reduce my dose of steroids (which they whacked up when I was first admitted to open my airways!) this needs to be done in stages and I think this will begin early next week. As my steroid dose is adjusted, my insulin dose will need adjusting too, as higher doses of steroids mean higher blood sugars, so if I lessen the dose, then I may require less insulin. I am also going to have my oxygen needs re-assessed. At the moment I am still using 3 litres a minute of oxygen at rest, I had previously only required 2 litres a minute at rest. However, I have not been admitted as an inpatient for 2 years, so my oxygen requirements have not been thoroughly assessed for sometime. Goodness knows what my sat levels have been doing at home - I dread to think! The doctors are also going to change my nebulizers, mainly due to the setback I had with my Aztreonam nebulizer. As the bacteria in my lungs are very sensitive to Tobramycin (Tobi), they think that I should use this consistently, not on a rotational basis. The only issue is that I will need regular blood tests, as Tobi can cause toxicity in the kidneys and deafness.

All in all, it's positive news. I certainly seem to be heading in the right direction and should be near my level of 'normal' before I leave here. I just feel a bit despondent when I feel like I have been fighting like a dog just to get back to this normal I speak of, it just seems like a such a huge effort for little return. My consultant described that my health situation can make me feel like I'm on a cliff edge - a small upset can seem like you're plunging down the cliff face. But clinically, this is not always the case, I just feel delicate and am acutely aware of my failing lungs. Plodding along this cliff face is a transient exercise and God willing, I will soon get a new set of lungs which will pull me back from the edge and allow me a second 'go' at life.

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!