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.