I’d been out of the hospital from my SVC syndrome procedure for a WHOLE 12 days, and BAM, I’m put back in the hospital again; this time with high fever, chills, body aches, and non-stop coughing (which would leave me short of breath and my heart beating well above 110 bpm).

I was pretty sure I had pneumonia—which turned out to be the truth. Technically, I had some serious virus called the human metapneumovirus (HMPV).  HMPV can cause upper and lower respiratory disease in people of all ages, especially among young children, older adults, and people with weakened immune systems. Infection with hMPV causes respiratory illnesses, from mild symptoms to severe cough, bronchiolitis, and pneumonia. A lot of patients who acquired this virus are intubated.

I was running 102.5 fever, chills, freezing, but my skin was burning up. I couldn’t dress myself (which I have a hard time doing anyway because of the GVHD of my muscles) and I was struggling to breathe. I knew I needed oxygen badly.

We made it to the hospital (and went to my oncologist’s office) and we had quite a ways to walk to get to the clinic. Immediately when we walked from the parking lot into the building, I desperately needed a wheelchair, but Klay had his arm around me and held me up while we walked to the office. And I didn’t want to wait around and find one, I just wanted to get to the office and lay down.

HMPV virus

I was immediately sent back to a room with a bed, put on oxygen, and given antibiotics, Tylenol, and probably some other stuff when we got to the clinic. Nurses were checking my vitals every 15 minutes or so because my blood pressure was low, heart rate was up, and oxygen levels were low.

That was last Thursday, April 6 (when I was admitted) and I was released on Monday, the 10th. It wasn’t as long as a stay as I thought it would be, but Brody had his Kindergarten Roundup and I couldn’t miss that.

Meanwhile, over that weekend all hell seems to break loose.

My niece Swayze and Brody were playing on a playground at a local baseball park, while my other niece, Presley, had a game. Swayze managed to fall off of the playground somehow and fell on her wrist—which we now know is broken.

About 45 minutes later, Brody who was playing on the same playground falls off–or was pushed by a kid and his elbow slams into concrete. This is still under investigation; we have conflicting stories from the victim aka Brody. Brody hurts his elbow.

Two injuries, two fractures, two cousins and it’s on the same night.

broken arms toddler
The next morning Brody and Swayze (who play on the same t-ball team) went to their game to support their team, even though they were two players short (actually 3 because another kid was sick, I think). I heard the game was pretty bad—not just cause they didn’t have enough players, but kids were having meltdowns and it was just overall a bad day. I felt really bad for our coaches when I heard about it!
Broken Arms And TBall
It’s clear to say that March and April have shaken us up a bit.
Within the last four weeks, or so—with two hospital stays in the books—I’ve had two severe close calls this month.
My SVC (superior vena cava) was partially blocked and I needed surgery to clear out the blockage to get my blood flowing again. Here are images of what it looked like; (left blocked and right unblocked).

blocked svcsvc unblocked

 

 

 

 

 

 

 

The SVC is one of the largest veins that pump blood from the heart to your upper body (which is why I was severely swollen). When I laid down, my skin would become a bluish color from lack of oxygen.

Both of these incidents could have been worse—and deadly–if we hadn’t gone to the hospital when we did.  I’m just thankful we went to the hospital both times instead of waiting. Who knows what could have happened? Had I scheduled my tri-fusion placement the following week, I may have had a complete blockage by that time and things could have gone in a completely other direction.

Right now, breathing and taking deep breaths are extremely painful. Klay and I went to the doctor Thursday and I was breathing pretty hard by the time we got to the office. We had to walk over several curbs to get to the entrance and I had a hard time stepping up and over them.

Then the top of my foot hit the curb and I almost fell completely on my face.

When that kind of thing happens my muscles in my legs feel like just one full muscle throughout my entire leg that controls my movement, except I can’t control it. The pain is excruciating and it feels like it paralyzes my legs. It’s pretty bad.

When  I was falling and couldn’t move my legs or feet, I felt like I looked like Michael Jackson in his “Smooth Criminal video” when he does this cool leaning forward thing–except he comes back up and I would have just fell with my legs straight, my feet glued to the ground and then smacked my face into the concrete–I definitely wouldn’t have been very smooth.

via GIPHY
I mean when I was falling I literally saw MJ and that famous move flash across my eyes. Then of course, I had that song stuck in my head the rest of the day….”Are you OK Annie? Annie are you OK?” sigh.

Life hasn’t been easy the past month or so. I’m still pretty swollen in my arms and my range of motion is still extremely limited.

It’s so tough trying to get dressed, pulling my pants up after using the restroom (because my hands won’t grip right), putting on makeup and/or fixing my hair is super painful for my neck, shoulder, and arms.

My body is really taking a beating right now. And, right now, we are just waiting to see if the swelling goes down and we’re trying let my body recover from the past month before we even start talking about photopheresis again.

So, I’m sitting here just waiting and hoping things will get better. I’m still trying to catch my breath—both literally and figuratively.

Well, I could have died twice this month, what have you guys been up to? 😃

Inhaling and exhaling like I ran a marathon over here,

lifeoncasslane signature