“It’s time for your reset…” The topic of my first clinic of 2018.
At first, I thought I was receiving a reward for doing my bloods for the first time in 3 years. That wasn’t the case. The reset, a time for military grade monitoring of me and my medication.
What started as a normal visit to the hospital for the usual check up, testing and chats about how everything to do with CF in my life. As per usual, my tests were all normal. I had no weight loss, bloods were tip top, physio was stoked to hear about my IRONMAN training, and the nutritionist explained the importance of my salt tablets for dealing with fatigue. The only change that was noticeable was my lung function. I was down by 8%, which is expected on change of season for me.
So, now that I am at the ripe adult age of 25, I am part of the young adults hospital as opposed to the children hospital. Although I have been transferred to the adults since I turned 18, the doctors said that at 25 I won’t be going through many more physical changes such as puberty. It was then explained by one of my children’s doctors, that because of my age they encourage patients to spend a week to 10 days in hospital for close monitoring of medication to ensure my dosage and health routine are still sufficient.
Now, for someone who has not been admitted to hospital for well over 20 years, you could say it didn’t go down well with me at the start although it wasn’t a proper admission. I was in all sorts, how would I explain this to Mum, Dad and my partner? It was an undisclosed goal of mine and my families to do everything in our power to not be admitted to hospital. Initially, I think it was a bit of a shock but eventually I convinced the docs to make it just 4 days over a weekend which was a big relief due to work and training commitments and also piece of mind for my sanity.
One Friday when I first arrived for the reset I was shown around the ward and my room. I was then informed that I would be getting a piccline in my bicep. I had no idea what this was, but I soon learnt that a piccline is a long tube that goes from my artery in my bicep directly to my heart. This is where the nurses could feed my antibiotics and take blood from (I hadn’t had any antibiotics for over 2 years). This was ongoing for the first day but soon settled down toward the end of my stay. At first I was hooked up to the fluids to keep me hydrated for the whole day with only an hour off. In my freedom hour I did an hour and a half bike ride in the wards gym.
I learnt Autogenic drainage with the physio, which for me is a life changing technique to learn because naturally my lungs only have loose phlegm. So honing my breathing skills to focus on each part of the lungs and clearing my airways effectively has made a massive difference in the past week. To me the ability to see and feel my body clear phlegm is a lot more effective than the PEP techniques I had previously been shown. I also began a salt water saline solution on the nebulizer to coincide with the Autogenic Drainage, What a great natural way to loosen your lungs!! All while taking my usual daily dose of Creon, salt tablets, Orkambi, abdeck and pulmazyme.
Over the next couple of days I was able to leave hospital a lot more. I went to South Bank Saturday morning where I joined the ParkRun alongside the Brisbane River and Botanical Gardens. I went shopping (my partners choice), visited the museum, the art gallery and the science festival. I drank coffee and ate out at some pretty cool restaurants. So really, it was like I was on a mini-stay-cation. I just had to be back at hospital at certain times for the nurses to give me my antibiotics (not after dinner with parents at 10pm when the ward is locked and you cant get back in without calling!).
On Monday morning my bags were packed at 6:00am, I couldn’t wait to be freed but first I had to complete some tests. First was my lung function which was back over 100% and secondly was the hospital beep-test which I completed and set the new record, then my piccline was removed and some scripts written. Once the doctors were satisfied I was out of there like a bull at a gate.
Now coming out of it all, it wasn’t as bad as what I first thought. I mean, I got room service whenever I wanted, and I’m talking some serious amounts of food, I think I even put on 2kg in 4 days! So all my hunger dreams were fulfilled for the 4 days.
On a serious note however, I learnt some great breathing techniques and for the first time in my adult life CF was the priority and focal point of my day, for someone so active with life I never take the time out of my day to consider bettering my medications and breathing techniques but I’m now thankful for the experience although I wont be going back for another 20 years.
Ps. Thank you the awesome hospital team for their efforts and my family for hanging around me and keeping me busy.