Blow all the way out. Good. Keep going, keep going.
Blood counts are dropping so...
basically that means the Imipenem is
suppressing my bone marrow.
♬ Don't you think we're better together ♬
♬ Oh Honey ♬
♬ I think we are ♬
You do a very good exhale.
(Mary coughing)
That's the best exhale I've seen from someone ever! Ready?
(Mary coughing)
♬ peaceful music ♬
(Both) Good morning!
(Peter) Womp womp.
So, the team came in, so 6:30 this morning I had blood work and
that was to check my vancomycin level, which is therapeutic, whoop whoop,
but unfortunately
my whites and my platelets and my other like blood counts are dropping faster than we anticipated.
Okay, we're about to go to PFTs, But um...
blood counts are dropping so basically that means the imipenem that I've been on for one week is
suppressing my bone marrow.
So not ideal, but it does mean we were hoping to go home today
but that's not gonna happen because of my blood counts so we at least are staying one more day...
(Peter) See what happens, but let's go get PFTs.
Yeah, ok.
(PFT tech) Blow all the way out. Good. Keep going, keep going, keep going, keep going, keep going, as much as you can, all the way, all
the way, all the way, all the way, all the way, keep going, keep going, little more, little more, little more, little more, all the
way, all the way.
Good.
(Mary coughing)
(PFT tech) Ok, ready, huge breath in.
All the way, blast, all the way out, keep going, keep going, keep going, keep going, keep going, keep going, as much as you
can, all the way out, all the way out, all the way.
Keep going, keep going, keep going, keep going, little bit more, little bit more, little bit more, little bit more.
Good.
(coughing)
First set done. I just did my
inhaler. My pre and post, okay, so I should probably explain this.
So um there are a few different
components to CF airways.
Of course there's the infection side of things where your lungs are battling this infection that's in the, in your lungs.
So that can cause scarring which can decrease lung function because your lungs aren't working as efficiently,
but another
component to some people with CF is like a reactive airway situation.
This is my understanding,
it's kind of like more of an asthmatic type of reactionary thing like a
bronchospasm type of thing.
Basically like a closing up of the airways.
Like constrictive?
Yeah.
So she's not getting...that's like due to infection and the CF side of things but
so like not as much air is able to get like out into the
outer
places of the lungs.
The outer places. So...
So you might hear people talk about pre and post PFTs.
So pulmonary function test pre, before bronchodilator,
and post, after bronchodilator.
Now in my recent past like in the last five to ten years,
my pre and post don't show marked improvement, so that means that I'm probably not having very much
reactive airway component, it's more just like infection
issues.
If I do my pre, which I just did and then I do my
bronchodilator, which you can either do the puffer like this or the neb, the neb makes my heart race too much
so I have to do just this one which is atrovent.
And bronchodilator is a medication that helps open up those kind of...
Bronchioles.
Restrictive airways, yeah.
I'm assuming it's bronchioles.
Bronchioles?
The broccoli in your lungs.
Yeah.
Bronchioles.
Um bronchial dilator.
Dilate your bronchioles.
Anyways, you were saying.
So um it hasn't shown, actually my PFTs have come down in the past when I've done the neb
version, so we're like okay, don't do that but um
last week for PFTs I did my atrovent before I came to PFTs and they were a little bit better.
Which they're actually down four percent from five days ago or whatever.
So we're interested to see what they are after I do my atrovent.
Basically.
Yeah, so if they were to come up
on her post it would indicate maybe a more like
chronic like
regular bronchodilator would be helpful because right now Mary just uses it when she like, as needed, right?
Right.
So, like
If she's having some of these restrictive airways, maybe something that she does every day.
Yeah, which I've done in the past.
I've done spiriva in the past which is like a long-acting
bronchodilator.
Which is probably what you'd go on again.
Yeah, that's what my team was talking about a few days ago, but
yeah, so basically we kind of got cut off because we ran to PFTs, but
we're basically in a tricky spot with my blood work because
Imipenem is treating both the achromobacter,
which I'm growing, and Pseudomonas, which the Pseudomonas is resistant to it, but we still try to treat it.
And then the vancomycin is treating the MRSA, which is in my lungs.
So right now we are on a, on paper we're on a really good
combo
but if my whites go too low then it puts my whole body at risk for even more serious,
potentially serious stuff.
Yeah.
So then there's the talk about do we try a neupogen shot which is a shot that
it's a, it's an injection which tells your bone marrow
make more white blood cells, so it's, it's kind of an option,
it's a potential option that we've talked about. There's definitely pros and cons.
It's a little outside of the box of like what...
something you'd traditionally do like so.
And then you decide are the pros
worth it versus the cons and
I've only been on Imipenem for one week so at the rate my blood cells are dropping
I might have a couple more days until they drop to like too dangerous.
But we're not sure so like we could wait and just see if they drop too far and then treat.
It's just there are so many layers.
Yeah.
So right now...
I will pause my packing even though I packed most of our stuff up last night.
We will pause, we will put a pause on that for now.
I thought last night was our last night.
Yeah.
We're just
gonna wait out, wait it out and see what happens. We're gonna recheck blood work tomorrow and see where her blood counts are, see how
it's trending, and then come up with a plan from there, but why don't you stop vlogging
so you can rest and do post here in a few minutes.
I don't know if we ended up saying kind of the end result at PFTs.
So my first set of PFTs was before the bronchodilator
and they were down a few percent from last, from like five days ago.
And then the second set was still down slightly from last week,
but it's in the same range and as we've always said they are just numbers. They can be helpful, but
ultimately we are treating the infection not the numbers.
So we're just gonna keep on doing what we're doing as far as we can with the blood counts in mind and all of that.
But it is later in the evening right now, but here's what happened earlier.
I tried to capture it on camera so what I was able to capture, here you go.
I went to the gym and had a ball.
♬ upbeat music ♬
And then the camera died, but the rest of that workout was I stood on that half ball thingy
that was wobbly and
we threw this like oblong ball from one person to the other.
Peter hasn't heard this yet.
No, yeah.
So we threw it. I stood on the wobbly thing so it was more work for like my core and everything and
it was a workout for both of us, but it was really fun and like I said before they clean everything.
Every speck of everything that I touch and other patients to keep me healthy or safer and keep other people safe as well.
But yeah, it was a really fun day in the gym, and I guess there's one benefit to staying another day.
I'll get to go to the gym another day.
And Ollie and I took a little nap in the windowsill this afternoon which was good.
I think I needed a nap to kind of catch up from yesterday.
But, I wanted to say Christmas is coming the goose is getting fat and
where was I going with that? Oh, yeah,
shipping deadlines. If you want to order any of our t-shirts
or sweatshirts before Christmas...
Sorry, nurse came in. So what I was saying was shipping deadlines for the holidays. If you want to get
shirts or sweatshirts by Christmas
and you live outside of the United States the deadline to order is today.
I know this is like last-minute notice, but because of our fulfillment centers that we use
we have to leave plenty of time for
production and then shipment, and so if you want to get something by Christmas place your order today
November 28th, and then the last day for in the U.S. to get t-shirts and sweatshirts
by Christmas is December 7th.
So there's actually a shipping tab on our online store where you can see these deadlines,
but I just want to put that out there in case you were like wanting to order something by Christmas
and you've been putting it off. Those are the deadlines and then
there's also a deadline for the rest the stuff on our store.
I think it's December 15th, but I don't actually know off the top of my head, it's on the online store.
Hey guys, I just got, oh look at the Christmas festivities in here!
It always brightens the healthcare workers day when they walk in and that's, that's pretty fun.
Do computers still do that?
I don't think computers still do that. Like back on Windows 95 you had to do this thing called...
(Mary) I don't know though. I did it through college.
You did it through college?
Okay, so back on Windows computers back in the day that you had to do this disk
defragmenting thing and
you had to like, I don't know it like
cleaned up files on your computer. I don't really know but
because your computer would start getting slower
and you'd do this defragment your disk, so anyways Mary's like "why don't you go out and get a bite to eat and
defragment your disk" and
so I just went and got some Clover and just sat.
(Mary) That shirt will be available on the online store!
Yes!
(Mary) Don't bother me, or...
"Don't bother me, my disk is defragmenting."
(Mary) Or, I'm sorry I didn't see you there, I was just defragmenting my disk.
(laughter)
And we can have like the little like windows pop up for a disk defragmenter. Didn't it show like a pie of your like disk?
But I remember like...
(both) all the lines!
Insert picture here. But anyways, everybody needs to defragment their disk every once in a while.
(Mary) So explain what that means if they have no clue what you're saying.
If you don't know what that means, Mary was using it as a reference to just kind of chilling out and
decompressing from life, taking a little break and
(Mary) Basically...
Recalibrating.
(Mary) Yes!
Yes!
Basically, Peter's just been
amazing as always and go, go, go, the last two weeks
and I just wanted him to know
that he is appreciated and he can take some time!
We're just hanging out tonight and
not too much to report, but it was kind of a
change of plans kinda day, but
you know, you just go with the flow and say
(Both) As always, we will see you tomorrow.
Sorry.
(Both) Good night!
♬
And, afterparty time with the Ollie boy!
Afterparty afterparty, hey hey hey!
Stretch!
Sorry I think I, I think I tied his leash like,
subconsciously while I was talking to the vlog.
Sorry, buddy. We'll see you tomorrow!
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