I have entered a new phase of CF bad-assery. CF has declared war on me and is trying to drag me down to a very low level of lung and body functioning.
So let’s just say that I am now in The Big Fight.
I spent all of February and March sick, trying to fight the infections that I can (MRSA) at home. I waited too long and the bugs that I cannot treat at home* with oral antibiotics went crazy.
My body was overcome with inflammation.
Facing the Piper
I had a doctor appointment and lung function tests. My lungs are operating at 30%.
If I was interested in a transplant, this is the time docs start approaching the topic. But for a number of reasons, I am not a good candidate (not everyone is), Which Innoway is good because there are not enough organs to go around. Of course, if people increased the amount of Oregon’s available in the national Oregon donation database, this wouldn’t be a problem for those who need it, but for me, I knew that I would not be a good candidate. So that’s off the table.
Thirty percent – if I stayed at this level – is considered “end stage”. But you can live at end stage for a long time. Kind of weird to think about.
Paying the Piper
I entered the hospital with inflammation levels (measured by a marker called C-Reactive Protein) at 238. Normal is 1.0-3.0.
I was on 4.0 liters of Oxygen.
The Carbon Dioxide in my blood is 66, out of a normal 40ish range.
I began a 14-day course of 3 IV antibiotics, around the clock. I ended up with a kidney injury due to the toxicity of some of the meds, so I had to go on extra IV fluids because no human could have drank enough.
I endured a lot of pokes and sticks and have the battle wounds to share. But I had a lot of love from my husband, cats, family and friends to get me through the moments the tears fell.
It made the drudgery of daily work manageable.
I spent so much time and energy doing airway clearance and exercise – 3 hours of vest, an our of a machine my clinic is trialing, an hour (over course of the day) using a handheld blowing device called the Aerobika, walking 1500-3,000 steps a day (starting around day 6), and doing pilates each day. Plus trying to eat and sleep, despite 5 am blood tests and 11pm vital sign checks. And there was no time to nap unless I begged for an hour or two of no interruptions, but every other department (besides nursing and the doctors) decided that request didn’t affect them.
At day 10, they retested my lung function and it had only improved to 33%.
Granted, I always continue to improve after leaving the hospital, but this was not encouraging.
I left the hospital on day 15, kidneys still irritated, on 3 liters of oxygen, and feeling like this body of mine is not mine.
The Real Work Begins
Coming home was daunting. I knew I had fallen health-wise, but this time was so different. Everything is much slower.
Let me say that I am recovering, but I have a lot deeper of a hole to climb out of, have to take many more breaks, and sometimes have to ride out a plateau every few ascents.
I am making changes and setting daily goals and have to commit to a walking regimen to keep me as strong as possible, endurance-wise. Keeping up meds, fluids, airway clearance, and a good place for my mind to rest. Demanding that negative energy not affect me. Stress and bad energy is so damaging to the mind, heart, body and soul. No more do I give permission for others’ emotions to attach to me.
So… how much is this from a single exacerbation and how much is progression? There’s no way to tell, it’s a combination of both. I try not to blame myself for waiting a couple of weeks too long, because that does nothing positive for me. It is hard when everything to me seems like a gradual change, especially when your body and your mind or not in the shape they need to be to look at things objectively. But I have learned a lesson in recognizing my limitations sooner. This requires me to lean more on Ken and my doctors and notify them of changes that I might deem as small, as “little losses” might not be so little in impact.
Since transplant is not an option, and they treated my infections that were active, and I’ve tried a lot of the other treatments out there without much improvement, pretty much all that’s left for the my doctor to try is to put me on the brand new CF drug, Symdeko.
Like its cousin Orkambi, which I took two and half years ago and had a hard time managing due to side effects and medication interactions, it attempts to fix the defect or the mutation in the way that my cells process salt and water.
There may be a period of adjustment as the mucus thins and my body goes through a “purge”, a period of time where the existing mucus thins out and comes out in large quantities.
This can be traumatizing because it mimics the signs of an infection, it’s physically draining, and there are also side effects that may or may not show up.
So there you have it.