Last night I took my war paint off, changed into my Pajamas’s, snuck out my power snack of Wine Gums and popped on some Netflix for a little solo Chill. (FYI “You Get Me” not a good movie people). The only other person in this Bay is off in the TV lounge with one of the Guys, the other Guy is fast asleep….. and its silent.
If you had EVER seen any horror movie in your life, this was it. I get a little spooked and decide to go for a little wander and freak myself out even more. There are darkened door ways, “hazard” rooms and well by the time I have made it to the coffee machine I have freaked myself out that much, I am fully convinced the Zombie Apocalypse is occurring. In Fact why don’t you be as freaked as I was….
So after having to have a pep talk with myself (and a couple of friends) in the bathroom I managed to finally make it back to my bed…. I am still convinced that behind the Hazard sign is a room of corpses…. even now I get goose bumps.
Ugh…. worst is when they turn the lights off it is pitch black and silent. I was a little too scared to go for a pee last night. Still I managed to survive, which was epic on my part considering they had wired me up earlier for a sleep function test.
For those that are scheduled for one of these, you can see you wear a nasal canula which is taped into place, a microphone which is also taped in place, along with 3 bands around your torso, a SpO2 monitor on your finger and this is all locked in with a couple of monitors.
You are free to move around until you would normally go to bed and it starts recording at a certain time. For me it was 10pm, but being exhausted I was in bed and dosy. Not only that I was too afraid to move thanks to the Zombie-Room. The Sleep study basically is to monitor your breathing, heart rate and oxygen levels. This is to check for Sleep Apnea which is a common disorder in which you have one or more pauses in breathing or shallow breaths while you sleep. Breathing pauses can last from a few seconds to minutes. They may occur 30 times or more an hour. Typically, normal breathing then starts again, sometimes with a loud snort or choking sound. This test is totally pain free and like most of the equipment we wear in hospital, you rarely notice it is there.
After one of the best nights sleep in hospital I have had in a while, it was up to
breakfast, medications and to find out what the day had in store for me. So as people know I have a lot of food allergies, the one meal that the hospital seem to really struggle with is breakfast and so I tend to pack my own. This morning it was a sachet of MOMA coconut and Chia Seed porridge, with the usual add ins of seeds, berrys, prunes and honey. The coffee was shockingly bad, but it is ok, I can do this for the next few days.
For all you without allergies, the Brompton had cereal, porridge, Pain au Chocolate, Croissants, hard boiled eggs and fresh fruit, you lucky lucky things.
After breakfast and a shower I headed off in shorts (shocking I know) I head off to my morning ENT appointment with Professor Durham.
We have a chat about all the medications
I am on, symptoms that are in the nose and throat area, how an attack feels and what I notice on daily tasks with things like dust and pollen etc.
After a quick look up my nose and down my throat it is all looking quite good. So after a little more chatting it is decided they want to do a quick endoscope.
So step one is good old Lidocane sprayed up your nose to numb the area. Now this kinda burns a little but not in a major way, its like a little sting. once the area is numb the little flexible tube you can see in the picture, had a light at the end and a magnifier and allows the Doctor to see down, whilst looking down the fat end where the eye piece is. Actually all I can think of when they do these is how much they look like an elephant.
First off checks to see if there are any blockages, narrowing and polyps are in each nostril. it is a little uncomfortable but not painful in any way. Once the upper part has been checked it will be decided which nostril to go down to look at (in my case) the voice box.
So in goes the flexible tube again and this time a little further down, it will feel a little strange but I didn’t find it painful. Once it is in position you will be asked to say a word so the voice box can be seen working and if there are any issues there. Then the last part which is by far the worst, is the tap on the vocal cords. It feels for a split second that something is stuck in your throat, if made me cough, but for some it can make them gag or spasm.
Its a really important test to have as it can show if vocal cord spasms are causing some asthma like symptoms.
Once this was all done (all in all this took about 30 minutes), I was free to go to patient transport to catch a ride to the other part of the hospital in Sydney Street. I get outside as he already has a couple of patients in the back, I get to ride up front… WHOOOP.
I arrive 5 minutes later at the Sydney Street site and head on up to ECHO. Once there I am quickly checked in, asked to get topless (something I am good at doing) and into the ECHO room for my Scan.
For those that don’t know ECHO is a scan used to look at the heart and nearby blood vessels. It’s a type of ultrasound scan and uses a jelly and a probe as in most ultrasounds. An echo uses sound waves to create pictures of your heart’s chambers, valves, walls and the blood vessels (aorta, arteries, veins) attached to your heart. You lay down on a bed, on your left side and your robe is open at the front as they stick 3 electrodes on you. Next up is the jelly and the hand held scanner. It will show lots of different things but here is one of the shots from my scan.
This takes about 20 minutes and sometimes the pressure used to press the little hand held can be a little uncomfortable but it isn’t painful at all. They take pictures and videos in 3/4 locations with the last being on the stomach.
In fact it takes longer to get the jelly off to get redressed at the end of the exam than most the scanning.
As this test is finished, I head back in the front of the ambulance again (boom, so excited) to the Fulham wing and Lind ward to start munching on my lunch and catch up with people whilst doing medications.
I get back and we have 2 new people on the ward, at least I wont be as scared tonight (I hope), we all say hi and get to chatting as I eat my special meal of Roast Chicken Salad and Marmite Crisps.
After a little chill time and a check in with my Consultant Andy, it is soon time for the afternoon of fun down in Lung Functions.
As I head off down and sit in the reception there I make a couple of new friends before heading in for my tests.
Now most Asthmatics at some point in their life will have these done. They can seem a little scary or daunting at first, they are not painful just a little tricky to master.
First up is the Lung volume test. This is the most accurate way to measure how much air your lungs can hold. This is test I don’t overly like as you have to sit in a small cube with clear walls. In fact this man was in it, imagine a small shower cubical with a random office chair in it.
In front of you is a mouth piece which you will put your mouth round and blow. You will also have an awesome nose clip on.
So they close the door, you pop you mouth on the tube and follow the instructions of the person recording the test. It is mainly strange to breath in the way they want you to. sometimes it is little pants, sometimes it i large puffs and big inhales. I will tell you this though, EVERYONE gets it wrong the first time at least once.
Once you have completed 3 or 4 of the various things they need you to do in the cube, you will move to another one. This time I only have two machines to use, so up for me next is Spirometry which measures the rate of air flow and estimates lung size. For this test, you will breathe multiple times, with regular and maximal effort, through a tube that is connected to a computer.
For this one, you pop your nose clip on, put your mouth around the tube and breath normally, before taking a nice big breath in, fast out and then keep pushing the air out (imagine a Peak Flow but then add in trying to empty your lungs at the end), then a big breath in.
You will do this 3/4 times until they have 3 readings they can use. At this point you will do 4 puffs of Ventolin and wait 15 minutes before repeating the last test again 3/4 times to get the readings they need.
Sometimes you can have a couple more tests such as Lung diffusion capacity assesses how well oxygen gets into the blood from the air you breathe. For this test, you will breathe in and out through a tube for several minutes without having to breathe intensely. You may also have your blood taken to check for blood gases etc as well as hemoglobin.
The tests take about 45 minutes and are really painless (well apart from if you need the blood tests, but I didn’t). After grabbing my results which will have tables and pretty graphs like this one…… I headed back to the ward.
All in all it’s been another day of testing but we are making some awesome progress and so far ruled out issues with my vocal cords, confirmed my allergens from the Skin prick testing, waiting on a couple of bloods still, but seen my lungs are still behaving as expected.
Oh and we found out that I love to stop breathing in my sleep… A LOT so hello cPAP.
As I sit back on the ward munching on Baked Potato and Beans again, talking to the other “inmates”, catching up with friends on Messenger and WhatsApp, I am reminded how lucky I am to have a team of people here, to be seeing some of the best Doctors in their field and finally on the road to getting answers to help us either deal or manage this.
Mostly though tomorrow we have a fun day with Physio, exercise lung functions and the Upper Respiratory Team…. all these tests and its only Tuesday. Soon I will have to brave the Zombies in the Hazard room and somehow manage to get changed so I can head to bed.