The last few days have been a rollercoaster of emotions. It's not been fun; I prefer calmness, clarity and some control. Friday morning was when I last posted and was planning to have the new access put in- the Power Glide. The specialist, Andrew, couldn't make it so over the weekend the nurses just used my port and alternated my Aminopholin and other IVs.
Saturday evening I was asked to do a lung function. On this ward they have a different device to the one they have on the CF Unit. We couldn't input my height and weight but went ahead with the tests anyway. In litres it said I was blowing out 1.21, compared to my previous results of 1.07. I work better in percentages, so wasn't really sure what this meant but I went to bed happy, as it sounded as though things were improving; although I didn't want to get my hopes up too much until I'd seen the doctor the next morning.
Sunday came and I saw the doctor who confirmed my lung function had improved, she could only have a guess at a percentage, due to being unable to put in the height and weight, but she estimated 40%. I was ECSTATIC! I couldn't have been more thrilled. I told literally everyone and was on such a high. FINALLY, I was improving. Or so I thought...
That Sunday night I had a really bad sleep, and was very tired Monday. I saw the physio who explained we needed to do another lung function but on their machine this time. Long story short, there hadn't actually been any improvement :( I was beyond devastated. From such a high to be brought crashing back down to earth was tough and made even harder from the lack of sleep. I tried to remain positive though. As it was Monday, I was also due to have the Power Glide put in. This kept my mind occupied as I was nervous about that and could put the lung function result to one side.
I was proud of myself for how I was with the Power Glide. Andrew was amazing; calm, reassuring, patient and answered all my questions. I was lucky to have one of the nurses with me holding my hand and we managed to get it in. Here's hoping that this extra step is what it takes to get better, ey!
The Power Glide- covered as it cringes me out.
So I was back on a high from having that put in; proud of myself and had adrenaline pumping through me. I then saw Dr O. I love that he is honest and doesn't beat around the bush. I asked if he was worried that I wasn't improving and he said "yes". It's all I've been thinking about since then. As ever, he has another plan, but I just can't forget that he said "yes". Now that it's been a few days since that convo, I can see that I have been over thinking it, it's just a word! One simple word. But It really brought me down. He made the decision to change up meds again, to keep them fresh and added in an anti-fungal, just to cover all bases really. He's taken me off IV steroids and back on oral ones on a lower dose and lastly, booked a CT scan to have a better look at my lungs.
The, next thing was seeing the psychologist, who I see twice a week while I'm in: passes the time, it's good to offload and she's helping me with my needle phobia still. She's a lovely lady who I look forward to seeing. I asked if we could just chat as I was still feeling down from seeing Dr O and I just needed to talk things out. She listened, comforted and helped me put plans and techniques in place for if I'm feeling a bit overwhelmed with the emotions. She reassured me that, after 4 and half weeks in hospital, it's normal to have down days! I can't be positive all the time when nothing seems to be going the way I want it to. I'm only human after all.
Monday eve- yes we are still on Monday, corr it was a long day- I was mentally and physically exhausted and more than anything wanted to sleep. However, due to all the change up of meds, the docs wanted me to have them all before bed. It was 2am when they FINALLY finished. I had 4 hours of sleep as the next load were due at 6am. I can't tell you the exhaustion I felt on Tuesday morning. I don't envy mothers of newborns at the moment, let me tell you that! I woke up crying. Now that's not normal for me at all. It's crazy what lack of sleep can do to you. I was ratty with the poor boy who brings breakfast and all the nurses (I felt awful later). I was having my breakfast and the nurse mentioned that I didn't look too good. In my exhausted state I was just thinking, "yeah, thanks for that, you try feeling how I feel at the mo". I was in a foul mood haha. I looked in my little hand mirror and I was like "OMG". My face was unrecognisable.
I was feeling a bit puffy in myself, but just thought it was from crying and being tired, had no idea I looked this bad! There wasn't any time to sort it out right then though as I'd just been called for my CT scan. So they wheeled me round the hosp to the scanner. With a CT scan you need to have a dye called Iodine injected so that they can see a contrast of colours to make out the detailed X-Ray. Luckily, they could use my Power Glide, one less needle to worry about. All went smoothly and got back to the ward. A few minutes later, the docs came round and could obviously see my face- not exactly hard to miss. They instructed the nurses to give me an IV to reduce the water retention that had built up from the steroids and meds. Literally within minutes I was peeing out so much water. This continued every 10 mins or so and even by lunch time my face had gone down so much and I could open my eyes a lot more. I'm on a tablet form of this anti-water-retention drug now for a couple of days just to get me back to a more normal state; keeping an eye on my water intake and outgoings to make sure I don't go too far the other way and end up dehydrated, which could dry up my lungs making it harder for me to shift everything. Ahh never just straight forward at the moment.
Anywho, the CT scan came back just showing typical CF lungs: a lot of stuff that needs to come up but not blood clots, which is good. I kind of wanted them to find something though- anything. An explanation or hint as to why I'm not getting any better.
I had a shower and hair wash, thanks to the wonderful nurses, which helped me feel more human but I was still so, so tired and emotional. Sometimes in hospital you can just rest and rest and rest, but other times it's all go, go, go and you never get a minutes peace. Yesterday was like that. I was so fed up and in a really negative mood; wanting to go home, or even just back downstairs to the CF Unit. Wanting my family; to be able to plan things and look forward to things; to be in my own bed, eat my own food, sit in my own bath, groom dogs, not be connected to a million monitors.... you just take it for granted until you're put in a position of having it all taken away from you. At the same time though, I feel guilty when I have these thoughts. Who am I to complain, when there are people in the world who would give their right arm to be in a hospital like Frimley. Children in war zones, sleeping on the streets, orphans alone and scared. You have to look at things in perspective and be thankful. It could be a million times worse.
It's hard to know how to feel in here at the moment. You can let your thoughts run away with you or you can try to keep them in perspective and in the present. I guess it's good to do a bit of both. Be mindful.
Back to the present, well the past- Tuesday still- I had a good chat with my dad over FaceTime and my lovely friends have been up to visit; although I doubt I have been much fun to be around this week so far haha- totally sorry guys!! I managed to get a GOOD SLEEP last night though- YAAAAAY!!!! And a nap in the morning, so I feel like I have more clarity.
Today (yes I have finally got to today, sorry about the long post) the physios decided I needed a change of treatment, so out has gone The Bird and in has come a machine called the Cough Assist. I guess it does what it says on the tin. Fingers crossed it is super beneficial.
Presently, they are having trouble getting bloods from my Power Glide, but I am consciously not over thinking it. I don't want to get all anxious and down again. What will be will be. Worrying now is not going to solve it. I'm looking forward to seeing Alex and my family this eve and hoping for another good night's sleep before redoing my lung function tomorrow. I'm trying not to get my hopes up too much, trying to remember a hilarious scene from one of my favourite TV shows, "My Family", where Ben is saying not to have any expectations in life so that you don't get let down. I know it's over dramatic, but it makes me laugh and I'd rather be laughing than crying!
Until next time xo