As you know I have Brittle Asthma. I was diagnosed after a very severe case of Mycoplasma Pneumonia in 2012, whilst spending nearly 3 months (thank you again to all the staff at West Middlesex Hospital) treating the infection & getting the Asthma under control.
What is Brittle Asthma I hear you scream… or maybe roll your eyes & go its just Asthma dude… thousands …nay millions have it. Well my friend, you are a little wrong….
Brittle asthma is a type of asthma distinguishable from other forms by recurrent, severe attacks. Brittle asthma is one of the “unstable” subtypes of “difficult asthma”, a term used to characterize the less than 5% of asthma cases that do not respond to maximal inhaled treatment.
Sounds pretty awesome so far right???? no??? we are just getting started in what this crazy form of Asthma is. So within this rare form, we have 2 sub-types, I am Type 2
Type 1 is characterized by sustained, chronic variability of PEFR, while Type 2 is distinguished by sudden unpredictable drops in PEFR where asthma symptoms are otherwise well controlled and the function of the lungs is not substantially impaired.
So what does that all mean??? well pretty simply, I will walk around, as if everything is perfect, have lung function most people will be jealous of, then BAM!!!!!! I will have an Acute Asthma attack with very little warning. This (at the moment) is normally after what we call “tremor attacks” where I will have a couple of small warning attacks close together. My Acute Attacks are notoriously hard to get under control & require days of recuperation.
Until July 2016, my Asthma was very much controlled & I took it for granted that I could do anything I pleased. I could Hike, learn to Scuba Dive, dance in sweaty & humid Festival tents…… not at the moment though. At the moment I am governed by medications & limitations. My Asthma is currently classed as very unstable & we are working with the Royal Brompton & my Respiratory Care team at Hillingdon Hospital, to get this back under control.
I often think people should know, that those on a lot of medications are effected by them, I am VERY lucky that I have the support network I do. What we do forget is that those around us are affected too. My family have to see me some days with no Oxygen and struggling to even walk up the stairs, where my muscles are screaming in pain because they have nothing fueling them, where the effects of the drugs are pushing me to limits mentally & physically.
Every day I need to monitor my Peak Flows, Co2/Oxygen levels, Heart Rate & Body Temperature, so my first thing each morning is to take the waking readings. Today we are sitting at a waking HR of 102, temp of 37.3, Co2/Oxygen stats of 93% & a low peak flow of 80.
As I sit downstairs at 7:30am… dealing with a couple of work emails & hugging my first coffee of the day. Dan is asleep upstairs all snuggly as I run the first of 4 nebulisers of the day. Another day he will be there monitoring my Co2 levels as I have suddenly dropped & hes had to wake me to get a Nebuiliser in before my airways close.
The Nebuliser runs for about 30 minutes & has a lovely cocktail of 5mg of Atrovent & 2.5mg of Ventolin. Now I have to run these 4/5 times a day, so that’s when I wake up, then every 4 hours after until I go to sleep. This combination of drugs, gives me around 4 hours of open airways before the drugs wear off, though this can often be shorted.
After I have finished these, I then need to have my morning round of inhalers… Symbicort 400/2 is up first & I breath in 2 puffs 4 times a day. Then we need to spray 200mg (so 4 sprays) a nasal steroid Mometasone.
Then I will take some supplements, I am a big believer of vitamins & herbs, so before I eat I have a little Acai Berry & Super Greens.
Then remeasure the Peak Flows to see if they have come up… mine now are sitting at 100. At this point I finally get to drink the now cold coffee (which has to be decaf), & my first liter of water.
The above 4 drugs (Atrovent/Ipatropium Bromide, Ventolin/Salbutamol, Symbicort & Mometasone) come with a whole heap of possible side effects, what I tend to see from them though, or what I can attribute to those are:
- Dry mouth & Cough
- Bloody mucus or unexplained nosebleeds
- stuffy or runny nose
- fast, irregular, pounding, or racing heartbeat or pulse
- Shakiness in the legs, arms, hands, or feet
Still sounding fun??? nope, well it is still just getting started. About an hour after waking I eat… nom nom nom, there will be way more on diet coming on another blog post, but I need to eat to be able to take the next round of medications….
First up we have Prenisolone, the drug we all hate. I am always on this one & the lowest level I can ever be on is 10mg, but the dosage goes up & down depending on how well my Asthma is coping. Currently I am on 35mg & it effects you BIG TIME. This is the one that is hardest to deal with, it takes a lot of patience, love & understanding. I suffer with the following side effects known to be caused by this drug & it is why it cannot be suddenly stopped, you also need to be monitored so carefully when on it. It does save my life so I cannot complain, but daily we have to deal with…
- Depression & sudden mood changes
- Agitation & Irritability
- Anxiety & nervousness
- fast, pounding, or irregular heartbeat or pulse
- Water retention
- Massive weight gain *** this gets me down more than people realise ***
- Moon Face full or round face, neck, or trunk
- Dry Mouth & Increased thirst
- Needing to pee…. ALL OF THE TIME
- muscle pain or tenderness
The higher the dose, the harder the effects are to manage. I know I have said it before but I really do have to thank my family & friends who I don’t know how they put up with me sometimes, as for Dan well he really is a saint. For instance, if my sugars & oxygens drop low at the same time, I will suddenly get very very short or confused. He has to figure out if to feed me or run for his life.
Next up on the morning drugs.. we have Omeprazole, which I need to take to combat the effects of the drugs I take. This stops the acid reflux & some of the sickness caused with the amount of medications I put in my system.
Then we have the most important drug of all Aminophylline…. 350mg of the life saving drug, the one that truly does keep me alive. Dramatic isn’t it…. but we have figured that if my levels start to drop, so do I. I have to have the bloods checked on this one regularly to ensure it is in my system. This does however cause the foloowing side effects….
- trouble sleeping
- fast, pounding, or irregular heartbeat or pulse
The major one for me is the Heart Rate, mine is always at a level which is dangerous, it sits around 100 at resting & has to be watched. A lot of the drugs I am on push it up, some days I can sit around 160 for hours on end.
I also often need to take an Antibiotic as I have no immune system, this is kept suppressed by the steroids. So I run frequent courses of Doxycyline (I happen to be allergic to most antibiotics to make life easier). I have pain killers which I try not to take to combat the constant muscle fatigue & headaches, but sometimes I need to give in and take them.
I then throw in some more supplements, which include Multi-Vitamins & Minerals, Garlic, Hemp Oil, Ginseng, Green Tea, Q-10, Aloe Vera, Dandelion extract, Probiotics, CLA’s & Potassium.
So this is all around breakfast time & I am already pumped full of more drugs than most people would take.
During the day I take other supplements such as BCAA’s, Taurine, Warrior Greens, glucosamine, collagen & a thermo cap. I take these with full support of my medical team, Dan & my trainer. I am back in full training & so to ensure my body is getting what it needs I do ensure that it is supported with diet & supplements. I do hate the fact I have put on weight & have to battle the Pred-gains, but this is being done safely…..
But you will also see I need to repeat the Nebuliser & Inhalers around lunch, dinner & before bed (as a rough guide). Also making sure that through the day my stats are constantly measured.
I have a nebuliser at work, thankfully but I do have to carry an emergency nebuliser in my handbag, with emergency nebs, including an adrenaline epi-pen.
So after a long arse day, its all tucked up in bed with my sleepy time tea, snuggles with Dan & another side of medications… before we get to say goodnight.
Aminophylline is first up, putting in the second dose of the day to make sure I get through the night, it is around a 12 hour running time, so you can imagine what it is like when I miss a dose.
Then I have to pop a Cetirizine which is one of 2 antihistamines I need to take, along with Montelukast, both of which help with any allergies and swellings of the airways due to them. At night is when I have to take some pain-killers normally co-codamol as the headache is too much to sleep with. On top of this there are a couple of additional supplements in the way of Zinc, melatonin & magnesium which I take here to aid
e sleep. Along with a digestive aide to combat everything else in my body…… so below is my daily intake…..
So there you have it, life with a chronic illness, medications & routine. Its all fine when the side-effects are at there lowest, but when it is a really bad day, when you can barely function, when your heart rate is sitting at 140 for the 3rd day in a row, your head is pounding & the pred is making you want to jump off a cliff….. you sometimes wish you could stop all the drugs, get off the roller-coaster & for one day just be normal.
But then again I choose life, I choose to fight this & with the people beside me…. I win daily battles.