Well, that didn’t exactly go as I had
hoped.
At the end of October my lung function
was at 57%. Just 2 weeks later, despite IV antibiotics, it had unexpectedly plummeted
to 45%. After three weeks in the hospital and an additional week of home IV antibiotics,
my lung function now is up to… 48%.
I knew I was nowhere near my
baseline of 60%, but I thought I had at least made it back into the 50s. It was
definitely disappointing to see so little progress after so much treatment. I’m
certainly doing much better now than I was 6 weeks ago, but no matter what we
try I just can’t seem to get very far. My lack of progress doesn’t make sense,
because various tests have shown that my infections SHOULD be susceptible to
the 4 IV antibiotics we’ve tried so far. But for some reason, during each of
the last 2 rounds I only made a little progress before stalling. We’re going to
try 1 more IV antibiotic and see if that finally makes a difference.
Unfortunately, that antibiotic is Tobramycin, which caused tinnitus (ringing in
the ears) back in January that never fully faded. Hopefully a brief course won’t
have auditory side effects, but I will be monitoring things carefully, and we
will stop at the first sign of any problems.
If I still don’t have any progress after
a week of Tobra, we’re going to take a break from IV antibiotics and give my
body some time to heal on its own. We’re also going to do some testing to see
if it’s possible that my terrible reflux is contributing to the problem, and if
maybe some of this is being caused by aspirating things into my lungs.
Unfortunately, the steroid which is helping control the inflammation can also
exacerbate reflux, so it might actually be making things worse. I’m in the
process of starting a monthly injection used for severe asthma in the hopes
that it will enable me to get off of or at least lower the steroid.
On a positive note, I do have a
terrific hashgacha pratis (divine providence) story! While hospitalized I met
one of my neighbors as we both walked up and down the halls getting our exercise.
He doesn’t have CF, but he did have a lung transplant back in March. It turns
out that he had multiple oxygen concentrators that he no longer needed, and he
and his wife had been looking for a person or agency to donate them to in order
to pay it forward. This week they dropped one off at the outpatient clinic, and
I am now the proud owner of my very own portable oxygen concentrator! This is
GREAT, as my oxygen continues to drop with exertion, but not low enough to
qualify for supplemental oxygen to be covered by insurance. These machines cost
thousands of dollars and I never would have gotten one on my own. Having
supplemental oxygen available will make it easier for me to be active and get
back on track with exercise so I can build my strength back up. So, I HAPPENED
to be next door to this gentleman, who HAPPENED to have a spare oxygen concentrator,
EXACTLY when I could benefit from in-home supplemental oxygen for the first
time in my life but had no way to get it. Thank you Hashem!!
This has definitely been a long haul.
It’s still unclear how much longer of a haul I can expect, or what the eventual
outcome will be. Which is, honestly, frightening, frustrating, and discouraging.
But I am still hopeful that things can get better than they are now, whether
through treatment or simply with time. And even if they don’t, I am also
confident that I will learn to adjust to my new normal and figure out how to
live life within it, just like I have in the past. One way or another, I will
roll with the punches and come out on top, just like I always do.
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