The Great Escape

Over the past two months I have watched many patients come and go on Foulis Ward and on Monday it was my turn to finally leave! Eight weeks was a personal best for me in terms of admissions, by no means a record, but still a long time. To add to the excitement of leaving hospital, we travelled in style... no I don’t mean in a limo, but in an ambulance with the blue lights! (Talk about a getaway vehicle!) This is because I am deemed a ‘high risk’ patient as I need to use my non-invasive ventilator (NIV) during the day sometimes. Therefore the technicians wanted to get me home as soon as possible so I could be settled and stabilised. This meant that it only took us an hour to get home through heavy London traffic and terrible road conditions! 

Drawers of drugs!

A lot of things have changed now. I am going to be permanently on intravenous antibiotics (IVs) – until I get a transplant. This is because the inhaled antibiotics are simply not enough to control the bacteria and fungus that grow in my lungs. The acuteness of the infection during my admission and the bacteria’s ability to become resistant showed that we needed to use ‘bigger guns’ to control the infection. The bacteria in my lungs, if unmanaged, can reach a ‘critical mass’ and can cause me to become unwell almost overnight. These continuous IVs will be cycled, so every two/three weeks the ‘cocktail’ will be changed, to keep the bacteria on their toes! This means more frequent trips up to day case at the Brompton to have various tests and be monitored after my first dose of the new lot of IVs. As a result of this, our kitchen is now akin to a small pharmacy, or drug den, if you will... In order to keep the drugs separate from the potatoes we have dedicated storage to store the abundance of medical kit, as this is now a long term situation. Being on IVs continuously is very different to the odd two weeks blast every now and then, mainly through the way we have to organise ourselves. During my admission fungal infection was also a problem. As I mentioned in a previous blog I was put on an intravenous antifungal drip, but to make this more manageable at home, I now take a more effective antifungal tablet. It had some rather interesting side effects when I had my first ‘loading doses’ I had rather severe visual disturbances. I am pleased to say that these have subsided!  

I am also on much stronger pain medication to help manage the chronic pain I suffer. This entails long acting morphine tablets and ‘break-through’ liquid morphine to manage the pain in between long acting doses. This type of care will be managed locally by the palliative care team at my local hospice. Discussing hospice referrals and the like is not nice to hear. I am under no pretences that my lungs are in bad shape and I am in dire need of a new pair, but to actually have referrals put into place make things seem more real. 

My oxygen requirements have also increased, I now need 4 litres a minute whilst resting and through my NIV and 6 litres a minute whilst exerting myself. I am so pleased that I am able to use nasal specs as I genuinely thought that I would be coming home needing to use a full face mask on rest. I do however need to use my NIV more in the day, probably for about 4-6 hours. I see this as a great achievement seeing as I was on the NIV permanently for a month of my admission and have managed to with some God given strength to rely on it less and maintain decent Sp0₂ levels (approximately 92%). I am slowly building up my exercise tolerance, but at the moment it's quite low. Luckily Luke's mum and dad have given us a Nintendo Wii so that should help me!

Just before I escaped from hospital, as my infection markers had reduced sufficiently I was given an iron infusion to combat the anaemia I recently developed. It takes a couple of weeks for the iron to be converted into haemoglobin, so later tests will establish how successful that treatment was.

After such a rough admission and being so unwell it feels like such a blessing to be home. There were a couple of times when I didn’t think I would be coming home, but praise God, I got through them. Not only by the work of the incredibly talented and caring staff at the Brompton, but through God given strength and perseverance. Having Luke with me when I was really poorly was amazingly helpful as he not only helped me physically with 2am physio sessions and helping me to the bathroom and the like, he was an incredible help emotionally. My faith in God has been vital as there were so many times where I wanted to give up – and even told Luke so, but my faith pulled me through. Although we have a rather busy medical routine now, I am going to do my utmost to enjoy home life! 

Reunited with Azlan the rabbit!

So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand. Isaiah 41:10

Plodding On, Slowly but Surely...

Oh hey! I do apologise for it being all quiet on the Western front as of late. To be honest, initially there wasn’t a lot to report. I was pootling along nicely for a week or so after changing to my new room, but then my infection started to get a little worse again... Grr! When this happened I wasn’t really in the ‘right place’ to write a blog, or share my story. I felt a ‘bit’ disheartened; as if I’m going to be stuck in this perpetual hospital hell until I am fortunate enough to get called for transplant or if the worst should happen. Despite this little blip I was still gaining strength and compared to the ‘blips’ I was having at the beginning of my admission, I was coping with this one physically much better. After yet another Intravenous Antibiotic change things have settled again and things are going in the right direction again. I have to admit, I say this with much trepidation as I no longer feel that I can trust or even anticipate what my body is going to do next.  

It has not all been doom and gloom though. My sputum production (nice!!) has been much less and I have felt much better within myself. The physios have provided me with a Nintendo Wii which I’m using as part of my rehabilitation programme in order to build my muscles back up to what they were pre-admission as well as to keep them fit for transplant should I be lucky enough to get ‘that call’. I also have a Wednesday treat to look forward to each week, which my physios have christened ‘Wicked Wednesdays’. We’ve frequented many a pub, as well an ice cream parlour or two! I’m so past feeling self conscious being out and about on my Non Invasive Ventilator (NIV). If I had hang ups about it, I would have been stuck within the same four walls for the last 7 weeks! My treats are no longer confined to Wednesdays though. As I am able to cope with up to an hour off my ventilator, Luke and I are allowed to escape on our own as long as we are within 15 minutes of the hospital - if something were to go wrong with my ventilator there would be enough oxygen to use a high flow mask to quickly scoot back to hospital! So now there’s no need to go out armed with a back up NIV and a very heavy battery (car battery-sized) to operate it!

Wicked Wednesday at Scoop!

Pedicaure from the lovely Mrs. Baghaw!

Thai Takeout!!

Wicked Wednesday at the pub!

Another positive step is that I no longer require a morphine pump. I am on a long acting morphine tablet twice a day, which delivers the same dose as the pump, but it is a far less invasive treatment and in all honesty, my poor stomach was really suffering with being so prodded. In addition to this, my stomach often gets incredibly bloated overnight from the use of the NIV (particularly if I eat late) so having a subcutaneous needle under the skin with an incredibly taught, bloated drum of a stomach was not pleasant! I can still take ‘breakthrough’ doses in the form of subcutaneous injections should I need them. 

I have probably missed loads of things that have happened, but having been in here for so long, everything sort of merges into one event! I am disappointed that I will most likely be going home with a large dependency on my NIV and continuous intravenous antibiotic drugs. It just makes it so much more patent that I am in dire need of a lung transplant. I hate the fact that my lungs aren’t working mechanically very well anymore, in as much as they retain CO₂ and don’t take in O₂ efficiently and that I have to rely on a machine to do this for me. It isn’t as if I’m even just using my NIV to give my lungs a rest, if I do not use it when I sleep (or for most of the time at the moment) I get the most horrendous headaches - although that is trivialising it somewhat. We have had the misfortune of not connecting the oxygen to the ventilator for a short time (something we will never repeat) and during this period my oxygen saturations plummeted to 38%! This made me feel *very* unwell and turned my skin grey and if this had continued for any length of time I may have slipped into a coma (eek!). This glimpse of life without a ventilator/oxygen makes me thank God for modern medicine because without it I wouldn’t be here. Of course now more than ever I am praying that I am fortunate enough to get a transplant. I just can’t wait to go to bed and snuggle up with my Luke and fall asleep without a crappy facemask and reams of tubing lying between us. I do grieve for my ‘old’ life, of being a teacher and enjoying an active social life and volunteering in church. However, I am also incredibly grateful that I had those opportunities in the first place – that I was well enough to complete my degree to a high standard and teach for two years. I was also well enough to have the wedding I’d always dreamed of. So whilst I often sit here feeling a bit dejected, I do remember the blessings that I have been given.

Our wedding!! 07.07.07

At Winchester Cathedral for my graduation in 2007!

As I have said many times, we don’t know how long we have on this earthly plain so although I have had a bit of a moan in this blog about how sad I feel, it isn’t a feeling I like to hang onto. I do still have faith and trust in God. Although it might seem that he has abandoned me, or isn't answering my prayers in the way I *want*, I take comfort in knowing that He is with me through my suffering. Joshua 1:9 Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go.”