9-6-2015 Health Update
I’m home! Can you
believe it? Because I’m having a hard
time believing it’s real and it could last.
So much has happened in the last few days, I feel writing a giant update
on my blog is the best way to update everyone.
The general background:
After I got a cold around the 4th of July I was
hospitalized for 3 weeks. I came home,
not really better, and then got slowly sicker. I was home for 2 weeks, and then
I ended up being taken by ambulance to a nearby hospital because my pulse ox
was so low and my pulse was so high. I
went home on oxygen. Less than a week
after that, I was back at the hospital in Milwaukee and spent almost 2 weeks
there.
The more specific update and recent details:
On Friday I did my PFTs.
I was POSITIVE they were going to be at least a little better. On Tuesday my FEV1 was 34%, and on Friday I
was hoping for at least a 39%. My
reality was 30%. My FEV1 went down, of
all things.
We’re all baffled. Dan
and I, my parents, and my doctors are sort of stumped as to what the hell is
going on with my lungs. My CT scan of my
lungs was fairly clear and looked really good for a pair of CF lungs. It definitely doesn’t match my numbers, how I
feel, or why I’m still on oxygen. My
doctor, Dr. B, came to my hospital room and we had a very long chat about what
the plan should be and where we go from here.
First, this all could still be viral. Dr. B said that sometimes it takes up to 12
weeks for a virus to clear the system of a CFer and since we’ve kicked the shit
out of both the MRSA and pseudemonas with so many IV and oral antibiotics, it’s
probably time to stop the IVs. I am on
one IV at home to treat a couple little other random bugs that were growing in
my last culture. We’re hoping and
praying this is viral and will go away in the next 4-6 weeks and I’ll get
better. I will work my butt off and get
better.
My parents and I discussed the mannitol, and then I
discussed it with Dr. B. When my mom
started making it for me, I started using it more (almost daily) because I was
no longer trying to make my supply last as long as possible. This coincides with needing prednisone more
often, so I’m going to back off on the mannitol and go back to doing it 1-2
times per week. Hopefully this will
reduce some inflammation in my lungs.
The prednisone could also be causing rebound inflammation
now because I’ve been on such a high dose for so long, so we’re going to taper
down the prednisone very slowly. It’s
going to take about 2 months for me to get off of the prednisone, which is
sad. I’d really like to sleep better,
eat less, and have a slimmer face again.
A VERY exciting thing is I got approval for the new
AffloVest – the vest that has no tubes or a box. It can run on a battery so you can wear it
anywhere and you can wear it and be active.
Like, I could be ironing and wear my vest. I could ride my stationary bike and wear my
vest. I could wear it in the car or on a
plane. It’s very exciting! I’m going to try to do my new vest 1-2 times
per day along with 1-2 manual chest PTs.
The more treatments the better!
When my new vest arrives next week, the first thing I’m
going to do is wear it while I ride my stationary bike. I’m so excited to do that! The next key part of our plan is
exercise. I must exercise. First, to kick my lungs into shape and
second to lose weight. I need to lose
10-15lbs before I’d be eligible for transplant.
I thought that was odd, but it’s what Dr. B said. I’ll talk about the T word in a minute.
I talked to my psychiatrist and Dr. B and we decided I can
go back on the antidepressant I had to stop cold turkey to go on an antibiotic
for my lungs. Dr. B and I don’t feel we’re
going to use that antibiotic (Zyvox) all that often, since it was a major
culprit in causing the terrible tachycardia, and some other reasons. So I’ll go back on the
PTSD/depression/anxiety med that was working pretty well. Yay serotonin in my brain!
That’s our basic game plan. Med changes, lots of airway clearance
and exercise, and good rest at home. Do
those things and wait and see if I get better.
Dr. B presented me two (well three) other possible options
to try.
1)
Trying a drug called “cystagon.”
2)
Being part of a clinical trial in Canada where I
would receive inhaled nitric oxide.
3)
Transplant
The prescription for the cystagon had already been sent
out. We’re waiting to see if my
insurance will approve it, or if they’ll need a lot of paperwork to approve
it. I’m not really sure what the drug does,
or why I’ll be taking it - I clearly
need to be reading medical journals instead of typing this - but Dr. Biller said it might help me, so I’ll
try it
.
The clinical trial in Canada is an interesting option. I’d love to be part of that. The hard part will be it will require me to
go to Vancouver for about 2 weeks with little to no notice. And inhaled nitric oxide. I need to read more about that in cystic
fibrosis as well.
Dr. B brought up transplant.
I’ve talked to her about transplant before, but it’s always been brought
up by me because I had a specific question.
Dr. B said that it’s an option, but she “doesn’t think we’re there yet.” And she told me that I need to lose about 10
pounds because my BMI is a touch too high to qualify for a lung
transplant. Honestly, I’d rather be in
this boat than needing to gain weight to qualify for transplant. I think losing is easier than trying to gain
weight when you’re sick - and I’ve been on both ends.
So that is the update on my physical health. I’m home, but not well. I’m still happy to be home and working hard
here to get better. It’s much better for
my mental health – which I’m hoping to discuss in a different post soon.
Comments